by Amy Bloom
In her photographs, Cheryl Chase has bright brick-red hair and the look of a feisty, troubling imp. In person, she is a handsome woman with the concise, controlled movements of a skilled equestrian, which she is. She has the air of an exhausted traveler who knows she’s only halfway down the road. Her parrot, Zelda, perches on her shoulder as Robin, wiry, slight, a little skeptical, comes in and out of the room, checking in about a study published in the Lancet supporting ISNA’s recommendations for the treatment of intersexed infants, checking in about the computers, just checking in. Robin Mathias lives with a woman on a mission, a woman who uses everything around her for the cause, selling me that videotape over the phone, and now three T-shirts before our interview begins, pitching hard for donations in the first issue of the first newsletter (“Send MONEY! No, silly, not Dr. Money—send us cash!”), appearing with Robin in an educational videotape to talk about sexual dysfunction following “corrective” surgery, which means talking about their relationship. Cheryl works all the angles, all the time; Robin watches over Cheryl.
“Parrots, with few exceptions, have no externally discernible sex differences,” Chase says. “If you care what sex your parrot is, traditionally you get a laparoscopy done and the surgeon looks at the gonads. I bought Zelda from a breeder, and she had already been laparoscopically sexed and sold as a male. But when I got her, I thought I would prefer her to be a girl and I did a social reassignment on her. No surgical reinforcement.”
I look at Zelda, who seems unbothered, and at Cheryl, whose humor is never more pronounced than this small smile.
“It’s okay. Zelda doesn’t care which pronoun I use.” Chase shakes her head. “You know, it’s as if there never was and never is common bad medical practice. No doctors treated gay men with electroshock therapy. No one was responsible for Tuskegee. No one sent people with ulcers to psychiatrists.”
People with ulcers? What about people with ulcers?
“Ulcers were considered psychosomatic. Remember all those people drinking milk and going for counseling to calm down? It turns out many of the people with ulcers have a bacterium in their pyloric valve that eats a hole in their stomach. Standard wisdom was that no living thing could exist in such an acid environment. [Paul Thagard’s book] How Scientists Explain Disease is all about the man who discovered this, who couldn’t get heard at medical conferences, couldn’t get published. Thinking didn’t change at the center, with well-respected pillars of the medical community; it changed, as this changes, on the margins, with people willing to contradict standard wisdom and conventional practice. The journals resist, the doctors resist.” Chase leans back; she appears most distant, even indifferent, when she cares the most.
“These were not bad doctors,” she says evenly. “A lot of people who feel harmed by this treatment [surgery for ambiguous genitals] will tell you that they were seen by the cream of the crop, by experts. And that’s something even doctors don’t understand. First they said, ‘We don’t have to listen to these people, they’re crazy.’ Then they said, ‘It happened a long time ago, and now we do it better, we do it right.’ Then they said, ‘These people were treated by a handful of bad doctors, and people who have good doctors have good outcomes.’ At some point, you have to look for the simple explanation. It’s a bad medical model and it causes bad outcomes.”
As for ISNA’s position, “It’s not complicated. We don’t say: Celebrate that your kid has severe hypospadias or CAH. We say: No unnecessary surgery, no cosmetic surgery without consent. And more than that, we say: No lying, no shame. We say help the parents and the patients and help them by telling the truth. No lying.”
“No lying,” Philip Gruppuso says. “No delusions of grandeur on the part of the doctor.”
Gruppuso is both a doctor and a dad. He’s a bearded, fatherly middle-aged man with twin daughters, now twenty-one years old. When sexual orientation comes up over drinks or at conferences, he tells his colleagues that he wouldn’t care if either or both of his girls were lesbians. The straight men around him eye him dubiously, and he’s not sure whether they’re wondering why he’s saying something that couldn’t possibly be true, or whether they’re wondering if it is true—which makes them wonder what kind of normal middle-aged physician and family man from the Bronx would feel that way.
“Physicians, like everyone else, find it hard to change. Not just because of habit but because, in the history of treating these kids, there is an element of homophobia. It doesn’t make my colleagues happy when I say this. If you look back at the standard texts of the fifties and sixties, the underlying concern was that people who were ‘really’ male but looked female would want to have sex with males, and the same for females who appeared male. Homosexual sex was the underlying fear. Not worrying about sexual orientation allows me to think about what’s best for the patient and what’s good medical practice.”
If this criticism has not endeared Gruppuso to his pediatric colleagues, neither has his straightforward assessment of the most common treatment for intersexed babies, and of why it’s still more common than what ISNA recommends: “This isn’t complicated, it’s simple. There are a million ways to screw this up, and most of them have to do with doctors being too sure of themselves, imagining that they control the outcome for sexual orientation and gender identity, and then doing irreversible surgery.”
Ten years ago, Phil Gruppuso, now director of research in pediatrics at Rhode Island Hospital and professor of pediatrics and biochemistry at Brown University, was a doctor just like that.
“I was a pediatric endocrinologist and very much in the mainstream. Anne Fausto-Sterling was a colleague and became a friend. I started thinking: I’m a scientist, look at the evidence, look at the follow-ups. I looked at the evidence, and the evidence that this genital surgery is a good idea is just—junk. There’s no such evidence that doing surgery on infant genitals for appearance’s sake, surgery without consent and which frequently results in sexual dysfunction—there’s no evidence at all that this is a good thing. And I am unwilling to harm patients to protect the reputations of physicians who are fine academicians and thoughtful men, but who were—mistaken.”
And his advice to doctors confronting their first intersexed baby? “Get a specialist and don’t do anything irreversible. Be willing to say, ‘It may take a month for us to have a diagnosis and a determination of gender.’ Help the parents, help the grandparents, and always, always—it’s the first thing we learn as doctors—do no harm. This surgery, and intersexed babies treated by people who don’t know what they’re doing, does harm.”
At the other end of the debate on the treatment of the intersexed are Drs. Richard Hurwitz and Harry Applebaum, creators of the American College of Surgeons training videotape on ambiguous genitals in female children. The tape begins with Vivaldi and a statement of goals: reduce the size of the clitoris, exteriorize the vagina (making it penetrable), and make the genitals cosmetically normal. There is no mention at all of either function or feeling. Hurwitz looks into the camera and says, with quiet confidence, “The treatment of the clitoris depends on its size and the preference of the surgeon.” I’m sure it is so; I’m surprised that he says it. “If the clitoris is very large, however,” Hurwitz continues as the camera carefully follows the scalpel and the removal of erectile tissue from the clitoris until it folds back into itself, accordionlike, “it may need to be taken care of for social reasons.”
It is hard to imagine what social reasons a baby girl might have. It’s harder still to imagine how the odd results, described repeatedly in the videotape as cosmetically pleasing, could be anything other than a source of shame and discomfort. Not only are the results not cosmetically pleasing, they’re not even good. The surgically altered vaginas and reduced clitorises are painful to contemplate (and even more painfully, the vaginas will probably close and require dilation in the course of the patients’ childhood). And according to U.K. research reported in the Lancet, follow-up studies of intersexed children show more sex
ual and psychological dysfunction among those who have had these pull-through vaginoplasties and clitoral reductions than among those who have had no surgery at all. To watch the surgery is to wonder who in their right mind could think that stripping away and excising nerves protects sexual function or that this surgery is not only preferable but essential and urgent—far more so than helping parents help their child to live with a large clitoris, or with a tiny penis, or even with other, more puzzling anomalies.
Not monsters, nor marvels, nor battering rams for gender theory, people born intersexed have given the rest of the world an opportunity to think more about the odd significance we give to gender, about the elusive nature of truth, about the understandable, sometimes dangerous human yearning for simplicity—and we might, in return, offer them medical care only when they need it, and a little common sense and civilized embrace when they don’t.
Primum non nocere
* In a 1998 article in The Hastings Center Report, Dreger writes, “Most people … assume the phenomenon of intersexuality to be exceedingly rare. It is not. But how common is it? The answer depends, of course, on how one defines it. Broadly speaking, intersexuality constitutes a range of anatomical conditions in which an individual’s anatomy mixes key masculine anatomy with key feminine anatomy. One quickly runs into a problem, however, when trying to define ‘key’ or ‘essential’ feminine and masculine anatomy. In fact, any close study of sexual anatomy results in a loss of faith that there is a simple, ‘natural’ sex distinction that will not break down.… For our purposes, it is simplest to put the question of frequency pragmatically: How often do physicians find themselves unsure which gender to assign at birth? One 1993 gynecology text estimates that ‘in approximately 1 in 500 births, the sex is doubtful because of the external genitalia.’ I am persuaded by more recent, well-documented literature that estimates the number to be roughly 1 in 1,500 live births.” The authors of a peer-reviewed 2000 article in the American Journal of Human Biology write, “We surveyed the medical literature from 1955 to the present for studies of the frequency of deviation from the ideal of male or female. We conclude that this frequency may be as high as 2% of live births. The frequency of individuals receiving ‘corrective’ genital surgery, however, probably runs between 1 and 2 per 1,000 live births (0.1 to 0.2%).” The Intersex Society of North America bases its estimate of 1 in 2,000 (which, given about four million births a year, yields an annual total of two thousand births) on “statistics of how many newborn babies are referred to ‘gender identity teams’ in major hospitals.” By any of these reckonings, intersexuality is significantly more common than cystic fibrosis, which has an incidence of 1 in 2,300 live births, according to the Cystic Fibrosis Research website, and affects some forty thousand children and adults in the United States. The number of fellows of the American College of Surgeons fluctuates a bit from year to year but is about fifty thousand.
AFTERWORD
ON NATURE
People who reveal, or announce, that their gender is variegated, rather than monochromatic or plainly colored in the current custom, have always presented difficulties. Not only is our society distressed by masculine women, feminine men, and the androgynous; even the big man who embroiders, or the wife and mother of three who has a black belt in tae kwon do, a buzz cut, and no makeup in her gym bag, stirs a frisson of discomfort. Gender theorists love the gender-nonconforming as examples of all sorts of things, fundamentalists fear and despise them, and whether they avoid our gaze or deliberately seek to disturb, they are the handy punch line for every fading sitcom.
I sometimes think that our culture is like the Church in the days of Galileo. We will not see, and we will silence and mock, even banish and punish, those who say that what is, is. In one well-designed study, only a third of all “normal” women (for the purposes of this particular study, that would be heterosexual women physically and mentally healthy by self-report and clinical observers’ reports) achieved a rating of “classically” feminine. This study described how people actually are—not what they wish to be, not what they imagine themselves to be, but simply how they are—and the results make clear that few of us are what we have nonetheless agreed to believe our gender is. Our cultural standard of gender doesn’t resemble gender as normal people experience it. The knife of normalcy cuts sharp and crazy in our culture, and like most trends and fancies, the craziness is apparent only in retrospect. Today we are appalled or amused by medieval or colonial or Victorian nonsense: surgeries for the sexually healthy woman, to make her less so; boarding school sodomy to make little boys into leaders of men; women forbidden to vote or wear pants or practice law; white men forbidden fear and tears; and black people forbidden most everything. I expect my grandchildren will look back on our ideas about gender and sexuality with much the same disbelief.
It’s hard to dislodge cultural norms and myths when they provide such reassuring bulwarks in the face of such deep anxiety: the vote will make women barren, the sun moves around the earth. People did not conclude that the sun moves around the earth because they were stupid or narrow-minded; they believed it because it seemed reasonable in light of everything they had heard, or even seen, thus far; then it no longer seemed so evident, and by the time people faced that it was not so, the belief itself had come to seem necessary.
A great many people, sick of news from the margins, worn out by the sand shifting beneath their assumptions, like to imagine Nature as a sweet, simple voice: tulips in spring, Vermont’s leaves falling in autumn. There are, of course, occasional mistakes—a leaf that doesn’t fall, a clubfoot; our mistake is in thinking that the wide range of humanity represents aberration when in fact it represents just what it is: range. Nature is not two little notes on a child’s flute; Nature is more like Aretha Franklin: vast, magnificent, capricious—occasionally hilarious—and infinitely varied. The platypus is not a mistake. The sex-changing animals, coral reef fish and Chinook salmon among them, are not mistakes. The cactus and the blue potato are not mistakes. These plants and animals may not be as reassuring a sight as tulips are, but that doesn’t make them deformities.
The hot winters of Australia are not errors. They are just not the cold winters of northern Europe, which typify what winter is, or what it should be, for many Westerners. Surfing at Christmas is not a mistake, not “unnatural,” and certainly not proof of the immutable and fundamental superiority of the white Christmas.
After several centuries of confusion, preceded by some early centuries of clarity (at least for Greek gentlemen), we seem to have gotten the difference between gender and sexuality reasonably clear: men are not defined primarily as creatures who only desire women, and sexual desire for men is not the thing that makes a person female. But in our post-Freudian, even post-Lacanian sophistication, in which we wink at the spinsters’ “Boston marriage,” sure that it must have been a sexual relationship, however unacknowledged, and chuckle knowingly at the “man’s man,” aware that he is often just that, we seem baffled by the difference between sexuality and temperament, between one’s sexual nature and one’s personality. There is a whole history of fops and cowgirls, dandies with marcelled waves and tough, wisecracking broads, and where we once understood that one might be male, effeminate, and heterosexual (most of Spencer Tracy’s screen rivals for Katharine Hepburn come to mind), or female, masculine, and heterosexual (Rosalind Russell and Thelma Ritter), we seem to have now forgotten. The high-heeled, Chanel-clad lesbian and the football-playing, beer-swigging gay man perplex us, as if surely some norm is violated when a woman who doesn’t have sex with men likes lacy lingerie anyway, and a man who doesn’t sleep with women enjoys televised sports, cars, and sweatpants. In our collective cultural wish not to be out of it or old-fashioned, we’ve chosen to be simpleminded. We pretend that sexual orientation and personal style are one and the same and that those who suggest otherwise are trying to make fools of us or hide their shameful preference. Presented with Nature’s bouquet of possibilities, a wild assortment
of gender and erotic preference and a vast array of personalities, we throw it to the ground.
No one knows why the loss of the mother early in life leads some men to have extramarital affairs and others to crossdress. No one knows whether transsexuality is a biological result or a mix of the biological, the psychological, and the cultural. (To me, these things seem difficult to unravel—as we are all born into a culture of one kind or another, I’m never quite clear how we strain culture out of our assessments.) No one knows how well most transsexual people do ten or fifteen years after surgery, and no one knows how many transgendered people live happily, and syntonically, at ease with their gender and their sexuality, without ever going near a surgeon, an endocrinologist, or a psychiatrist.