Alice Domurat Dreger
 

All original material © Alice Domurat Dreger, 1996-2013.

This issue appears to be perennial, so here are some FAQs to help reporters get the basic facts right. (I wrote this a while ago, but it still is relevant and helpful.)


Why shouldn’t you use the term “hermaphrodite”?

The term “hermaphrodite” is stigmatizing and confusing. It usually suggests to people that someone has all the organs of males and females. But that is not physically possible. The medical profession came to a consensus about three years ago to get rid of all terms based on the root “hermaphrodite” (including “pseudo-hermaphrodite”) because they are stigmatizing and confusing. I helped push for that change because it was clear that even M.D.’s misunderstand how sex development works if they hear the term “pseudo-hermaphrodite.”

Sex anomalies are now grouped under the term “disorders of sex development” in the medical profession. Advocacy groups for people with these conditions vary in what terms they prefer (many use “intersex”), but virtually none want to you to use the term “hermaphrodite” or “pseudo-hermaphrodite.” So don’t use those terms. “Hermaphrodite” is as offensive and misleading as using the term “Mongoloid idiot” to refer to a person with Down syndrome.

Please note that if you are interviewing a doctor who is using the term “hermaphrodite” or “pseudo-hermaphrodite,” you are not talking to a doctor who is current enough on the medical literature to be trusted. Move on to someone who is current.

How can someone be raised as a girl but then turn out to have testes and no uterus or ovaries inside?

We are raised based on what adults think our sex is at our births. Various conditions can lead to a baby being born with female genitalia (labia, clitoris, vagina) and internal male sex anatomy (including testes).

What are examples of those conditions?

Androgen insensitivity syndrome (AIS), 5-alpha reductase Deficiency (5-ar Deficiency), and Swyer syndrome can all result in a baby who is born with XY chromosomes and genitals that look female-typical.

In the first two of these (AIS and 5-ar deficiency), the baby has testes inside, even though she’s clearly a girl. In Swyer syndrome, the baby girl has “streak gonads,” or gonads that didn’t form as either normal testes or normal ovaries. (Testes and ovaries develop from a proto-gonad that can become testes, ovaries, ovotestes, or streak gonads.)

What happens with Androgen Insensitivity Syndrome (AIS)?

AIS is a condition where the cells of the body don’t have the usual receptors to “hear” the “masculinizing” hormones we call androgens. (Testosterone is one type of androgen.) So even though a woman with AIS has testes, the androgens made by her testes and her adrenal glands don’t affect her body the way they do in the typical man or typical woman. (The typical woman makes androgens in her adrenal glands. The typical man makes them in his adrenal glands and his testes.)

AIS can vary in intensity from partial to complete. A woman with complete AIS (cAIS) will have less androgen effects on her body than the typical woman. Think about it: The typical woman’s adrenal glands make androgens that affect her muscles, her hair patterns, her brain, and so on. She has the receptors that allow her cells to be affected by the androgens. But the cAIS woman has virtually no androgen receptors, so her tissues will be less androgenized than the typical woman’s.

A woman with partial AIS (pAIS) will have some androgen effects. How much depends on how many androgens her body makes and how many working receptors she has. Most women with pAIS look pretty indistinguishable from other women. A few women with pAIS will develop larger-than-average clitorises at puberty. Some women with pAIS may also have some body hair and muscle development that is more common in men. It all depends on the level of androgens produced and the level of androgen insensitivity.

It is not uncommon for girls and women with AIS to reach puberty or even later without knowing that they have AIS. One way AIS is sometimes diagnosed is via a medical exam that occurs specifically because a girl has gone through a female-typical puberty without menstruating.

You can read more about how AIS works at the websites of the AIS Support Group. You can go to the site of the U.K. branch or the U.S. branch. They are both excellent.

How about Swyer syndrome?

In Swyer syndrome (sometimes called “Swyer’s Syndrome”), a baby girl is born who inside has XY chromosomes but no functional gonads (testes or ovaries). These girls often don’t find out they have something atypical inside until they reach the age of puberty but don’t go through puberty. (Girls with Swyer syndrome need to take hormones to go through puberty because they don’t have gonads that will make the hormones naturally for them.)

And 5-alpha reductase deficiency?

This is a condition in which a child is born looking female-typical (so she’s usually raised as a girl) but undergoes a more male-typical puberty. This is the condition featured in the novel Middlesex, but not all people with 5-ar deficiency go through the identity shifts of the character in that book.

In 5-alpha reductase deficiency, a male fetus has XY chromosomes and so, as is typical, the gonads become testes. The testes make testosterone, but because an enzyme called 5-alpha reductase is missing, the testosterone doesn’t do the conversion needed in order to make the genitals develop as the male-typical type in the fetus. In other words, even though the fetus has testes, the genitals develop as the female type (clitoris, labia, vagina). That’s why these children are typically raised as girls.

At puberty, the testes ramp up (as is typical at puberty). The lack of the enzyme doesn’t matter for puberty like it did in the womb, so the girl undergoes a male-typical puberty. The phallus grows some (so the person has what looks like something between a clitoris and a penis), the voice drops like a male’s, and the hair and muscle development is male-typical. The chest and hip development is also male-typical.

Some people with 5-ar deficiency live as women, and some live as men. All that depends on the individual’s life history, psychology, and culture.

Wouldn’t a woman athlete who reached puberty and didn’t menstruate think something strange was going on?

She might, or she and her coaches might just assume that, like a lot of women athletes, her intense exercise regime is interfering with her menstruation. In fact, along with it’s “policy” on sex verification, the IAAF provides lots of information to teams about how to manage disruption of menses among female athletes.

If you have testes and no ovaries, doesn’t that mean you’re a man?

Nope. Most of us don’t actually know what we have inside, though we think we know. Being a man or a woman means having the self-identity and social identity of being a man or a woman. Your gonads don’t tell you who you are. You know who you are.

But if you have testes and no ovaries, doesn’t that mean you’re a male at least?

That all depends on how you want to define males and females. I don’t happen to think the definition “testes=male” makes sense. For example, a woman with cAIS has female genitals, a brain less androgenized than the average woman’s, is raised as a girl, looks like a girl or a woman to everyone who sees her naked, has a female self-identity... Why on earth would we say she’s a male? I would say she is a woman with some male-typical traits.

But doesn’t the IAAF say that if you were born with testes you’re a man?

Actually, the IAAF explicitly allows some women who were born with testes to compete as women. This includes post-operative transsexual women and women with cAIS. Oddly, the IAAF even allows women with adrenal tumors to compete. So a woman making tons of androgens because of adrenal cancer is allowed to compete with other women. This means the IAAF doesn’t consistently care about life history, gonads, or androgen levels. Whacky!

Is this why you say that the IAAF has no clear rules?

That’s part of the reason I argued in my New York Times editorial that the IAAF has no clear rulebook for sex verification. More importantly, although the IAAF’s so-called “policy” allows for some conditions, it does not state which conditions it does not allow among athletes competing as women.

In a nut-shell, the IAAF “policy” is vague, incomplete, and seemingly inconsistent in its treatment of sex and gender. That’s why I put “policy” in scare-quotes.

What do you think the IAAF policy on sex should be?

I think it should be rational, complete, scientific, and transparently open to review. I think, frankly, that the IAAF “policy” has been developed by people who don’t know enough about sex development. Orthopedic surgeons, for example, are not the right people to be writing policies about sex. They know lots about bones, but not enough about boners. (Yes, I did just say that.)

I am not sure what the policy should be in terms of the specifics of what it should allow and disallow. Sex turns out to be wickedly complicated. If you think sex anomalies confuse sporting officials, you should wait and see what they’re going to do to people who think its easy to figure out what we mean by “same sex marriages.” (See my essay on that.) It isn’t going to be easy to squash real-life biology into a simplistic system that only allows for two types and insist on a bright line between the two types. That’s why I submitted my essay to the Times with the file name “the sport of sex.” It’s like a game. Except that real people’s lives are at stake, and there is still no rulebook.

So what I do know is that the IAAF is failing in its moral duty to athletes by not coming up with a clear and consistent policy. Having your sex called into question in the international media puts your life in danger, in that it marks you as a freak forever. The IAAF owes it to athletes to come up with a policy that does not expose athletes to this serious danger. Honestly, this is like letting bob-sledders compete without helmets.

Well, shouldn’t the South African team doctors have taken care of all this in advance?

Say they had run a whole battery of tests in advance of the international games. Then what? The IAAF has no clear policy on which conditions disqualify an athlete from competing as a woman! So there’s no way the team doctors could have prepared for this, because the IAAF has not clarified how they’re going to handle these cases. “I know it when I see it” won’t do. It certainly does not allow for team doctors to deal in advance.

Why do you say the tests are a form of “sex” verification while many reports call them “gender” verifications? Is there a difference?

Yes, there’s a difference between gender and sex. A very important one:

Gender is about self and social identification. It’s very easy to verify gender in an adult: you ask her which gender she is. Obviously Semenya is a woman in her self and social identity, and so that’s what gender is.

Sex is a word for the aggregate of our sexual biology. The tests being required by the IAAF are really directed at the question of Semenya’s biology, not her self or social identity. That means they are trying to find out about her sex.

So please don’t say that Semenya’s gender is in question or that they are trying to figure out her gender. She is being scrutinized because of questions about her sex (biology).

And keep in mind, sex doesn’t come in just two neat types. If you want to know what I mean, read this or read this.

Why do you sound so grumpy about this sometimes?

Because honestly, this is not the first time these issues have come up. Why is Caster Semenya having her life tossed about in the international media like this? There’s no good excuse at this late date in history for sporting officials to still not have a clear policy about how they’re going to manage sex anomalies among athletes competing as women.

I’m also annoyed because the treatment of Semenya in a lot of the media has carried the message that “real” women are not powerful. It frustrates me that Semenya has had to get a pretty hair-do to compete as a woman in the court of public opinion.

Finally, I’m tired of seeing all my friends born with atypical sex have to face so much fear and stigma every time these issues hit the news. I wish that the media would realize, every time they cover these stories, they are impacting the psyches of every one out there who has a sex anomaly or who loves someone born with one. That includes lots of parents of wonderful little girls and boys who deserve to have their parents not worry so much about stupid public reactions to known conditions.

Which is to say: Please stop calling these people hermaphrodites! They’re our friends, neighbors, children, lovers, doctors, lawyers, teachers, military personnel, florists, counselors, bus drivers, and priests.

I promise I’ll try to sound funnier tomorrow. But I ain’t getting my hair done! (My appointment isn’t until next week.)

[If you want to read my New York Times editorials on this topic, please click here.]

Media advisory on sex verification in sports