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Authors: Natalie Angier

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BOOK: Woman: An Intimate Geography
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androgens. It's not enough to manufacture androgens; the various tissues of the body must be capable of sensing the hormones and reacting accordingly. That requires the contribution of an androgen receptor protein. The tissues of the fetus's immature genital bud must be dotted with androgen receptor proteins if the bud is to respond to androgens and form a penis. And that protein is encoded in the androgen receptor gene, on the X chromosome.
Isn't it romantic? The androgen receptor gene could have been located anywhere in the genome, on any of the twenty-three chromosomes on chromosome three, say, or number sixteen. But no, it's on
our
chromosome, the big fat boring X chromosome. Sheer coincidence, perhaps although scientists can't say that for sure
*
but still worth a fleeting "hah!" We make females, we make males; if you don't see what you want in the window, ask for it inside.
Jane Carden had inherited on her X chromosome a mutated, non-working version of the androgen receptor gene. As a result of the mutation, her body could not respond to the androgens her testes were releasing in considerable abundance, which meant she couldn't grow a penis or a scrotum. Her body was, and is, androgen insensitive, hence the name of her syndrome.
And so, being androgen-deaf, Jane's body took the course that a mammalian fetus will in the absence of androgens: it chose to go girl. The little knob of her external genitalia became outer labia, clitoris, and a short blind tunnel. The transformation was not complete no inner labia, and the skin of her vaginal folds is oddly pale, not the usual mauve tone, as Jane puts it, of other white women's genitals. Still, she is a woman, as much of a woman as I or any menstruating, childbearing female I've ever met. With her breasts and rounded hips and comparatively slender neck (to me, one of the biggest giveaways of the female body), she can't help but strike the world as a woman. Most important, she has never doubted her female identity, even as she stood in the
*
Very little is understood about large-scale gene organization that is, why genes are distributed across the twenty-three chromosomes the way they are. Most of the placement appears to be a matter of chance and convenience, but some genes may be where they are because of how they are designed to perform during development, their accessibility to essential control elements, and the like.

 

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medical library, stunned, desperate, reading about her Y chromosome and the testes she had once possessed.
There are quirky elements to androgen insensitivity syndrome. The absence of acne and male-pattern baldness: androgens are behind pimples and most cases of thinning hair, in men and women alike. They also stimulate the growth of body hair in both sexes. Jane has no underarm hair and nothing but a downy mist of light baby hair over her pubic region, again for lack of responsiveness to androgens. Some people with the syndrome look like
mama mia
women, the sort who become actresses and models. Jane had her testes taken out soon after birth and needed to take estrogen replacement therapy at adolescence to fill out her female form (and to protect her bones, which are dependent on estrogen). But some women with AIS are not diagnosed until well into adolescence. Their testes didn't herniate in infancy and nobody had reason to question their chromosomal status. When such girls reach puberty, the testes begin releasing substantial amounts of hormones, mostly androgens but estrogen as well. The hormones travel through the bloodstream to sites like the breast area, where the estrogen acts directly on the tissue. In addition, some of the androgens are converted enzymatically to estrogen. The breasts begin to grow, and grow, and grow, to larger proportions in fact than in most women, for it is a woman's capacity to respond to androgens that is part of what holds her breast growth in check. (High levels of androgens likewise keep a teenage boy's chest flat. The gynecomastia, or breast growth, seen in some older men is probably the result of declining testosterone levels; freed of the counteractivity of androgens, the men's circulating estrogen succeeds in prompting a modest growth of the bosom.) AIS women also often grow fairly tall, though why they do is not clear perhaps another testicular hormone or gene on the Y chromosome promotes a manly height. Eventually, by age sixteen or so, after the AIS girls have developed adult bodies without starting to menstruate, they end up at a doctor's office, at which point their condition is diagnosed.
Good skin, great head hair, full breasts, tall stature. And naturally nude armpits and scant leg hair and a strapping immune system, Jane insists, because testosterone can suppress immune cells. A number of models and actresses have androgen insensitivity syndrome. Wallis Simpson, the spirited divorcée for whom King Edward abdicated his

 

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throne, may well have been an AIS woman. Some historians have said that Joan of Arc had the condition, but most have disputed the theory; nonetheless, Jane Carden took her name as a nom de plume.
The physical specifics of AIS women provide a delicious counter-weight to the arguments put forth by some evolutionary psychologists, who claim that a woman's sexual appeal lies in her possession of traits that tell a man, I am fertile and will make you many babies. They have shining skin and thick hair the signs of health and youth; and youth, youth, youth, we are told, is the measure of a woman's market value. And those generous breasts are supposed to be the emblem of an estrogenic woman, a reliably fecund cycler. Oh, yes, to each body part on a pinup girl a Darwinian tag can be fastened. But these AIS super-women, these amply endowed icons of fantasy and autoerotic spasm, just aren't Honest Signalers, as the evolutionary jargon puts it. They are, in fact, Cheaters, luring men into the foaming waters of carnality without even the vaguest possibility of conception. What a delight, what a subversion of expectation. The healthiest and most womanly of women are in fact a rendition of Amazon queens, self-possessed and self-defined, women whose bodies have an enviable integrity and a fleshy, non-replicative beauty that razzes Charles Darwin. The buck, the stud, the bull, stops here.
However much women with AIS identify themselves as women, they still feel set apart. Most keep their condition secret from all but a few close friends. Interestingly, many of them say the thing they regret most is not their inability to have children but the lack of menstruation, the event they see as a monthly voucher of femaleness. When other girls talk about their periods, girls with diagnosed AIS keep quiet and emotionally shrink away, as though, like the title character in the movie
Carrie
, they're worried that the "normal" girls will start pelting them with tampons and sanitary napkins.
Jane spent fifteen years feeling like an untouchable freak, having diagnosed herself by textbook but having no due how to locate another soul with her condition. "All I wanted was to meet someone else with AIS. It was my life's dream," she says. "I walked around like an adopted child who looks into the eyes of every person and thinks, are you my parent? I'd hear about somebody who couldn't have children, or some other variable like that, and I'd wonder, could she be like me?

 

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"I asked my own physician, I asked everyone I could if they knew other people. I called a doctor in Dallas who's probably the foremost researcher in the United States on AIS. Everyone kept saying no. They would act like I was out of my mind for asking, and they not so subtly suggested, who the hell would want to talk about it? Who would want to admit it" My own doctor told me that she had two patients with AIS, one a woman in her forties who was so prominent in the community that she would never want her identity revealed. And the other was an eighteen-or nineteen-year-old girl who my doctor insisted was just doing so well that she really had no need to have contact with anyone. That sounded like bullshit. I
knew
it was bullshit, because that supposedly well-adjusted eighteen-or nineteen-year-old was
me
."
Finally Jane again found her answers in a library. While looking through an issue of the
British Medical Journal
two years ago or so, she read a letter written by a mother of a seven-year-old girl with the syndrome. The family lived in England, and the woman said they were in the process of forming a support group for AIS girls and women and their relatives. She included her phone number at the end of the letter, but Jane could hardly make it out because the page she was reading was already stained with her tears. Jane cries freely as she talks about the day she found the letter. She doesn't bother daubing her eyes with her napkin. "I can never describe for you what that felt like," she says. "I will never be able to describe that." She photocopied the page. She drove home and practiced. She practiced trying to speak in a normal voice, without sobbing and choking. She practiced saying, "I have AIS," which she had never said to anybody but a doctor before. Still, when she called the woman, she broke down on introducing herself. Several weeks later she flew to England for the support group's first meeting. "I will never have a success in my life parallel to having found the support group and other people with AIS," she says. ''Without a doubt, that's the greatest success in my life."
At the group meetings, the women talk about practical issues, such as how to find Lucite vaginal dilators that stretch the short canal into something big enough to accommodate a penis. They avoid euphemism. They talk about themselves as having a birth defect. They talk about scrutinizing their bodies in the mirror, searching for any lingering evidence of maleness. They talk about myths: the myth that links testos-

 

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terone to libido, for example, in both men and women. If the myth were true, then these women should have no sex drive; they can't, after all, respond to the testosterone their bodies produce. Some sex researchers have said as much about AIS patients that they're frigid, uninterested, dead in bed. The women themselves come close to spitting in rage at that sort of talk. Whether or not they manage to inflate their vaginas sufficiently to have intercourse, their erotic nature remains intact. They fantasize about sex. They are orgasmic. They lust when there is somebody worth lusting after.
Another myth they defy is the one that promotes testosterone as the "hormone of aggression." If that platitude held, AIS women should be milder and more violet in their shrinking than the average woman. But the opposite is true: the women are, in their way, Joans of Arc of the temperament. One woman says she deliberately plays at being demure so that nobody will catch on to her condition. Jane claims she has balls when she needs them; the surgeons haven't excised them from her character. "I'm just like my mother, an aggressive, obnoxious human being," she said to me. "I'm the daughter my mother created. I'm the woman I was meant to be."

 

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