Normal

HERMAPHRODITES WITH ATTITUDE: THE INTERSEXED

Beautiful, the doctor says. Ten fingers, ten toes, and the mother’s beautiful blond curls. Baby and parents crying with relief, three weary, joyful travelers. They place the baby on the mother’s stomach, clamp the cord, and hand the father a pair of slim scissors to cut it. The parents expect both these things — they’ve seen it done in the Lamaze video, they’ve seen it on the Lifetime channel. The OB nurse cleans and swaddles the baby quickly while the aide washes the mother’s face and changes the bloody sheet under her for a fresh one. They give the baby the Apgar test, a visual assessment taken minutes after birth — a nice experience in most cases, since a baby will get a gratifyingly high score, 8 or 9 out of 10, just by being his or her healthy baby self. It is a high score in this case too, but the doctor shakes his head, in such a small gesture that the father doesn’t even see it. The mother sees it, through the anesthetic, through the sweat, right past the sight of her beautiful baby held tight in the nurse’s arms.

Finally, the baby is in the mother’s arms. The doctor is thinking fast and trying to hide it. As Dr. Richard Hurwitz instructs in Surgical Reconstruction of Ambiguous Genitalia in Female Children, a 1990 training videotape produced by the American College of Surgeons, “The finding of ambiguous genitalia in the newborn is a medical and social emergency.” A hundred years ago, midwives examined babies and assigned gender in doubtful cases, or they brought the babies to priests or doctors and the team consulted and assigned gender, and little was made of it until the occasional married, childless woman went to her doctor for a hernia and discovered she had testes, or the married, childless farmer went to the doctor and discovered he had ovaries. Today many physicians regard “genital anomaly” as a dire matter. “After stillbirth, genital anomaly is the most serious problem with a baby, as it threatens the whole fabric of the personality and life of the person,” one doctor wrote in 1992; only slightly worse to be dead than intersexed.

The baby is taken to the nursery. The next day the doctor comes in and sits down, and speaks softly. “Your baby will be fine,” he says. The parents brace themselves: a faulty valve, a hole where there should be none, something invisible but terrible. “Somehow your baby’s genitals haven’t finished developing, so we don’t quite know right now what sex it is. We’re going to run a couple of tests and we’ll know very soon. Don’t worry. It may be that some cosmetic surgery is required, but don’t worry,” the doctor tells the parents, who are already well past worrying. “This will all be okay. We can solve this in just a few days. The sooner, the better.” As the doctor leaves, he is already calling a pediatric urologist for a consult, getting a pediatric endocrinologist to come over and take a look, getting a geneticist to come on board, to help assign sex and then do what is medically necessary to have the baby’s genitals resemble the standard form of that sex.

This scene occurs about two thousand times a year in hospitals all over America. Far from being an exceptionally rare problem, babies born with “genitals that are pretty confusing to all the adults in the room,” as medical historian and ethicist Alice Dreger puts it, are more common than babies born with cystic fibrosis. Or, to think of it differently, there are probably at least as many intersexed people in the United States as there are members of the American College of Surgeons.^*

Imagine a baby born with an oddly shaped but functional arm. Would one choose an invasive, traumatizing pediatric surgery that almost inevitably produces scarring and loss of sensation, just to make the arm conform more closely to the standard shape? Yet parents believe there must be tests that will show their baby’s true sex, and surgery that will ensure and reinforce their baby’s true sex, and parents want it to happen, quickly. A few days, even a few hours, of having Baby X is too long. One cannot raise a nothing; when people say, “What a beautiful baby! Boy or girl?” one cannot say, “We don’t know.” In a culture that’s still getting used to children who are biracial and adults who are bisexual, the idea of a baby who is neither boy nor girl, or both boy and girl, is unbearable. How do you tell the grandparents? How do you deliver the happy news that you have a healthy It?

The parents hold the baby, still beautiful, still raw but shapely, and they peer at what is under the diaper. Let’s say that what they see is a tiny — even for a baby — tiny penis, technically, a microphallus, both misshapen and far smaller than the standard (less than about two centimeters when stretched out from the body). The prevailing approach for the last fifty years has been to declare that a baby boy with such a small and inadequate penis is better off as a girl. In the straightforward words of surgeons, “Easier to make a hole than build a pole,” and the collective medical wisdom has been that a boy without much of a pole, and even more, a man without much of a pole, is doomed to live ashamed, apart, and alone. In the face of the assumption that suicide is likely and profound depression inevitable, a physician with the best intentions and the support of his peers might well declare the boy a girl, remove the micropenis and the testes, fashion labia and a small vagina, and tell the parents as little as possible so as to spare the entire family further anxiety and troubling questions of gender (parents who don’t know that their little girl was born a boy are less likely to wring their hands over persistent play with trucks and a refusal to wear dresses). This approach owes a great deal to John Money, a psychologist and the founding director of the Psycho-hormonal Research Unit at Johns Hopkins, author of some forty books and four hundred articles, whose once-bright star has been dimmed by the case in which he turned little John into little Joan, and in which “John” insisted, heroically, that he was John all along, and resumed life as a male despite Money’s assertion that gender was all a matter of nurture, not nature.

Or let’s say that what the parents see is a baby girl with a larger than standard clitoris (more than one centimeter in length). You might not think that this is a problem of “doubtful sex” or confusing genitals, but in infants the gap between clitoris and penis is only about half a centimeter, so the large clitoris that doctors fear will worry her parents every time they change the diaper, and will alarm or even dissuade her future husband, also requires the surgical solution, as early as possible. The surgeries include “clitoral reduction,” and if necessary, some enlargement of the vaginal cavity by metal dilators inserted by the parents daily for six months, beginning two weeks postoperatively. Monthly dilation of the seven- or eight-year-old continues into adolescence to prevent narrowing or closure of the vaginal cavity. (The standard for a “good” vagina is one that can be penetrated adequately.) And then, perhaps, following the early vaginoplasty, further molding of delicate and cosmetically pleasing labia may be required.

“Ambiguous genitals,” “doubtful sex,” “intersexed babies,” “male and female pseudohermaphroditism,” “true hermaphroditism”—these phrases sometimes describe the same conditions, sometimes very different conditions. Some conditions require hormonal treatment or surgery or both; some require no treatment at all except counseling and time. Symptoms range from the physical anomaly — an unusual-looking set of genitals — to symptoms that will not become apparent until adolescence, to symptoms that will never be apparent from the outside. Some anomalies are defects in the plumbing; others are simply unusual fixtures.

There is a range of medical conditions that fall under the umbrella term “congenital anomalies of the reproductive and sexual system.” Boys may suffer from hypospadias, meaning in mild cases that the urethral opening (the “pee hole”), which is supposed to be at the tip of the penis, is perhaps in the glans, on the underside of the penis, or in more severe cases is open from mid-shaft out to the glans, or is even entirely absent, with urine exiting the bladder from behind the penis. Hypospadias sometimes results in ambiguity as to sexual organs, as does Klinefelter’s syndrome, which is quite common, occurring in one in five hundred to one in a thousand male births. Most men inherit a single X chromosome from their mother and a single Y chromosome from their father. Men with Klinefelter’s inherit an extra X chromosome from either father or mother, and their testes often produce smaller than average quantities of testosterone, so that they don’t virilize (develop facial and body hair, muscles, deep voice, larger penis and testes) as strongly as other boys at puberty. (Many also develop small breasts, one of Nature’s variations that is often found in those with no intersex conditions at all.) Despite an absence of sperm in their generally small, firm testes, many men with Klinefelter’s are never diagnosed because their genitals are typical in appearance.

In androgen insensitivity syndrome (AIS), the body of an XY individual lacks a receptor that enables it to decode messages from androgens (virilizing hormones). AIS results in people with male chromosomes and obviously female bodies; although they produce male hormones, their cells are not sensitive to those hormones, and their bodies never masculinize. There is also partial androgen insensitivity syndrome (PAIS), which typically results in “ambiguous genitalia.” The clitoris is large or, alternatively, the penis is small and hypospadic (two different ways of labeling the same anatomical structure). PAIS seems to be quite common, and has been suggested as the cause of infertility in many men whose genitals are typically male.

Among the most prevalent causes of intersexuality among XX (usually female) people is congenital adrenal hyperplasia (CAH), in which the adrenal gland produces an excess of androgens but feminizing occurs at puberty because the ovaries function normally. When excess androgens are produced in utero (sometimes not because of CAH but because an unborn XX baby’s metabolism converts hormonal drugs such as progestin, which was frequently administered to prevent miscarriage in the 1950s and 1960s, into an androgen), the female baby may be born with an enlarged clitoris and fused labia that look very much like a scrotum. Sometimes the genitals look typically female, with barely perceptible variations. Sometimes the babies appear to be healthy boys without testes, and it may be that no one in the delivery room thinks anything is amiss. And less often, the babies’ genitals are not just misleading but the hallmark of what has historically been called hermaphroditism: truly ambiguous genitals, both male and female, although not a complete set of either.

Monsters, freaks, prophets, border-crossers, portents of disaster — hermaphrodites have been disturbing people for a long time. Ovid wrote of handsome Hermaphroditos, son of Hermes and Aphrodite, whose beauty so dazzled the nymph Salmacis that she longed — as lovers do — to be joined with him. The gods granted her wish, in their quirky fashion, and two turned into one — one Hermaphrodite, now both man and woman. In another version of the myth, Hermes and Aphrodite’s child is so completely a mix of both parents, both male and female, that they cannot agree on its sex, and name it Hermaphroditos. In the first version, love flowers so fully that one body can contain two sexes and two souls — a happy ending. In the second, the gods are so baffled that they can do no more than name their child and move on; we hear no more of poor Hermaphroditos, not of love, nor power, nor family life.

The Hippocratics suggested a continuum of gender, much as many contemporary gender theorists do: masculine male at one end, feminine female at the other, masuline women and feminine men along the road, and hermaphrodites smack dab in the middle. Aristotle held that the hermaphrodite was a kind of incomplete twin in whom the ambiguous genitals signaled that almost enough body had been created for two babies, but not quite. The excess body parts, like a sixth toe or a third nipple, were odd and undesirable but irrelevant to the person’s “true” sex, which was determined, Aristotle believed, not by genitalia but by the “heat” of the heart.

The search for the “true” sex of the individual seems to me the model that most contemporary physicians have been following. This search, like the search for “true” love, seems composed of equal parts convention, social man-date, human need, and commitment to a dream, and despite all of our trouble and technology, we not only get it wrong more often than not, we cannot even acknowledge that Nature’s answers are much more sophisticated than our questions. As Anne Fausto-Sterling writes so neatly in Sexing the Body, “Different countries and different legal and religious systems [in seventeenth- and eighteenth-century Europe] viewed intersexuality in different ways. The Italians seemed relatively nonplussed by the blurring of gender borders, the French rigidly regulated it, while the English, although finding it distasteful, worried more about class transgressions.”

By the late nineteenth century, physicians were dividing hermaphrodites into three categories based on the identification of gonadal tissue. Individuals having testicular tissue were defined as “male pseudohermaphrodites,” and individuals with ovarian tissue were “female pseudohermaphrodites,” regardless of the form of the genitals. Only individuals having both ovarian and testicular tissue were “true hermaphrodites.” The result of this typology, which relied on “scientific” tissue analysis, was that fewer “true hermaphrodites” appeared: “A body with two ovaries, no matter how many masculine features it might have, was female. No matter if a pair of testes were nonfunctional and the person possessing them had a vagina and breasts, testes made a body male,” Fausto-Sterling says. “Additionally,” Dreger writes, “given that biopsies of gonads were not done until the 1910s and that Victorian medical men insisted upon histological proof of ovarian and testicular tissue for claims of ‘true hermaphroditism,’ the only ‘true hermaphrodites’ tended to be dead and autopsied hermaphrodites.” Whatever the intent of the doctors and scientists, in the 1870s people of truly mixed sex, who had been sufficiently common to merit discussion in every country’s medical texts, and in the Talmud and Tosefta as well (couldn’t shave, like men; couldn’t inherit, like women), began to disappear from the records, and took with them their troubling tendency to blur the social issues of the day.

In modern America, we have done our own disappearing act on hermaphrodites: we have turned a lot of baby boys into baby girls, and a lot of healthy baby girls into traumatized ones. A number of scientists and academics have written about this in the last ten years (most notably, the gifted researcher Dreger, the eminently readable and imaginative Fausto-Sterling, the less readable, provocative Judith Butler, and the psychologist Suzanne Kessler), but the person who has almost single-handedly changed both the dialogue on the subject and the surgical practice itself is Cheryl Chase, businesswoman turned activist. If Al Gore had had Cheryl Chase running his campaign, he’d have moved into the White House in January 2001. In a world of megacorporations, tobacco-sponsored rock concerts, and vast, unsavory alliances, Cheryl Chase, perceived as a “true hermaphrodite,” first declared a girl, then a boy, then not much of a boy, then operated upon to make her a more suitable girl by removing her “too large” clitoris (what was too large as a clitoris was, of course, terminally too small as a penis), is a modest, relentless, sleepless army of one.

In 1993, she was just an angry woman, distressed and puzzled by the little she knew of her own traumatic history, and anxious to move past it by offering support to people born intersexed (that is, people who have historically been called, with mystery but not much meaning, “hermaphrodites”). She did outreach and information-sharing and complained to anyone who would listen about the unnecessary and usually damaging surgery routinely visited upon babies born with ambiguous genitals — five babies every day, as a conservative estimate, to state the incidence in another way. She picketed; she fired off press releases from her home in the name of her fledgling group, the Intersex Society of North America (ISNA); she organized support meetings and sent out an indignant and well-informed newsletter (now the ISNA Newsletter, formerly and more compellingly called Hermaphrodites with Attitude). Cheryl Chase and her lieutenants, volunteers all (no one meets Chase and walks away without volunteering their time or making a donation to the cause — she would hardly speak to me until I agreed to send ten dollars for an ISNA videotape), have changed the terms of discussion about surgery and treatment for intersexed babies. The head of pediatric endocrinology at Oakland Hospital now supports the ISNA point of view, the American Medical Association’s Archives of Pediatrics and Adolescent Medicine has run articles that mirror ISNA’s position, and Chase herself has been invited to give talks at the Albert Einstein College of Medicine in New York City, at Denver Children’s Hospital, and at the 2000 meeting of the Lawson Wilkins Pediatric Endocrine Society, as the honored closing speaker.

It may be that if you can tell the right story, at the right moment, even people who don’t wish to hear will hear. The story of intersex babies is medically complicated, but ISNA simplified it — much to the disapproval of many respected physicians and to the dismay of John Money, whose narcissism and bad faith in the treatment of John/Joan gave John Colapinto’s excellent As Nature Made Him a sexually provocative, creative, and suavely frightening villain. Through careful study and the pained honesty of intersexed adults, ISNA has undermined the standard argument of good-hearted people (“Surgery may not be a great solution, but it’s the only one we have, and it would be worse to raise those poor children as ‘nothings’ ”), and it has undone the peculiar psychological argument that many pediatricians made (parents would be so upset every time they changed a diaper that they would not be able to love the child, and a child with inadequate genitals, especially a boy, would not be able to survive the scrutiny of other children). As common sense dictates, ISNA supports surgery when a medical condition requires it, and encourages families to consult with endocrinologists, knowledgeable psychotherapists, and, if appropriate, the best surgeons they can find. (As every medical student knows: If it works, keep doing it; if it doesn’t work, stop doing it; and never go to a surgeon unless you want surgery.)

“We certainly would like to see people become less gender-phobic,” says one ISNA newsletter, “but we don’t think dumping intersex kids into a gender-phobic world with no gender or a ‘third gender’ is the way to go.” Cheryl Chase says, firmly and repeatedly, that physicians who resist reform and feminist theorists who are tantalized by the idea of a “non-gender” may have opposite agendas regarding the fabric of our society and its rigid distinctions between men and women, but that both approaches make pawns of the intersexed. Chase and her small band refuse to be used by any other movement, while making strategic partnerships with NOW and GenderPAC (which had its first national conference in 2001, spreading an umbrella from NOW to the gay Boy Scout and the man fired from Winn-Dixie for crossdressing in his free time). It is ISNA’s goal to build a movement without a cult of personality, and it is true that it is not Chase’s charm that rouses people. It is the bareness of the truth and her emotionally charged, carefully contained delivery. John Money has charm. Cheryl Chase has changed a small part of how some people live their lives. “Small,” of course, only if it doesn’t affect you — and it affects more people than you think.

Virilization affected Angela Moreno Lippert when she was twelve years old, living in a small town in Illinois, dearly loved by her parents and grandparents, more than a little popular in elementary school, an A student and a dancer of the kind that fill Miss Beth’s School of Movement and Miss Toni-Lynn’s Tap and Toe. Angela came home from dance class one day, sweaty and cheerful, flung her clothes onto her bed, and ran a bath. Her mother was on the phone, chatting to a neighbor, keeping half an eye on Angela as she dropped her towel and sank into the tub. By the time Angela stood up to dry off, her mother was hovering in the doorway. Mrs. Lippert took a long, close look at Angela and hung up on her neighbor. She asked Angela to lie down on the couch, and she pulled the towel aside. There, peeking out from between Angela’s labia, was her prominent two-inch clitoris, something that Angela herself had noticed over the course of the last year and had considered a source of deep pleasure, although probably worth concealing in the locker room. Angela knew enough to wear double layers of underpants if she was someplace where she might be observed, but she had enjoyed masturbating, without too much guilt, and had assumed that her clitoris was a minor anomaly, like red hair or being double-jointed, except that its location suggested that discretion was advisable.

Mrs. Lippert burst into action. The elderly pediatrician was called, and for the first time in all of Angela’s childhood visits, she asked Angela to remain undressed while she brought in a colleague. Both physicians inspected Angela’s genitals, but neither of them said anything to her. The Lipperts got an immediate referral to one of the two pediatric endocrinologists in their region. The new doctor was fascinated not only by Angela’s oversized clitoris but by the Lipperts’ ethnicity. A dozen times she asked if they were sure they weren’t from the Dominican Republic, and each time, Mrs. Lippert assured the doctor that the Hispanic side of her family was Mexican, for several generations. (As Angela learned years later, 5-alpha-reductase deficiency, in which apparently female children masculinize during puberty, is exceptionally common in the Dominican Republic.) Evidently concluding that there was nothing more to be learned about the family background, the doctor arranged blood tests and a sonogram. No uterus was found in the sonogram. Angela was told to sit on a hall bench “for what seemed like forever, and when the doctor called me back to the room, it was obvious my parents had been crying.” When they left the hospital, her mother gave her a card that Angela still has. It said: “Our dearest Angela, Nothing has changed, you’re still our dear sweet little girl, Love, Mom and Dad.”

Despite — or because of — the reassurance, Angela became increasingly puzzled and frightened. Why wouldn’t they still love her? Why wouldn’t she still be their “dear sweet little girl”? A week later, Angela was admitted to the endocrinology service at Children’s Memorial Hospital in Chicago. Her ovaries had not developed properly, the doctors said, and if they weren’t removed immediately, they would probably become cancerous: there was great urgency. Angela awoke from the surgery and “felt the packing, like a blanket of wet blood where my who-knew-what-it-was-called had been.”

Angela and her parents tried hard to forget the surgery. Angela tried hard to believe that her “growth,” as she had come to think of it, had been removed to protect her from cancer, and she clung to that belief until she was about twenty-four. She’d gone into therapy for an eating disorder — a problem that people understood, a problem her mother could worry about openly — and her therapist encouraged her to write for her medical records. She did, and after three weeks during which she feared that the records had been sealed or lost, or that the hospital simply would not release them, they came: twelve pages, of which all Angela could grasp at first was that her pelvic type was consistent with that of an adolescent male. After her gynecologist helped her to decipher the medical terminology, Angela concluded that she probably has PAIS. The records showed that the “ovaries” the doctors had excised were actually undescended testes, which do pose a significant risk of cancer if not removed. But while they were at it, the doctors extended their sense of urgency to her disturbingly long clitoris, and removed it too, for reasons having nothing to do with the potential for cancer. “I guess they assumed everyone was as horrified by my outsized clit as they were,” she says.

Angela went home to Peoria for Christmas and didn’t say a word. Months later, a friend sent her Cheryl Chase’s newsletter, and Angela regarded the word “hermaphrodite” in a new light. “It hadn’t ever been a special word to me. It all sounded nuts, and then I read it and then I saw: this was my experience.” She wrote to Cheryl Chase, who wrote back as she always did and always does; they corresponded and they met. Chase convinced her that together they could help intersexed children and prevent the surgical tragedies that most laypeople, and most doctors, considered not merely the lesser of two evils but a pretty good solution. Chase’s fervor offered the irresistible choice of health rather than illness, of action rather than regret, and in 1996 Angela Moreno Lippert became an activist for ISNA. She now works with physicians as executive assistant to the director of Surgery and Allied Services at the hospital where she was first diagnosed.

Hale Hawbecker is a regular, middle-of-the-road, white-bread guy with a kind face and a quiet wardrobe. He has a wife and kids and a job as an attorney with the Environmental Protection Agency, and as he says himself, if you’d told him a few years ago that he would find himself sitting in large rooms discussing his genitals with strangers, he’d have called you crazy. But now he sits on ISNA panels, helping the world understand that surgery is not always — not even most often — the best solution to all of the syndromes that tend to produce variant or ambiguous genitals.

“If not for the two essential Hawbecker characteristics, denial and procrastination,” he tells a large audience in one of his occasional public speaking engagements, “I would be sitting here a very, very, very angry lesbian. The doctors told my parents I had a very, very small penis. My parents said, ‘Do we have to do anything about it now?’ And when the doctors hesitated, my parents took me home and wouldn’t bring me back.” The doctors told the Hawbeckers that their son was deformed and, if not treated surgically, would probably kill himself from shame when he entered adulthood. “I didn’t,” he says. For a moment, he is visibly uncomfortable, and saddened both by what might have happened and by the actual difficulties of his physical condition. “You could look at my genitals and find them pathetic, or”—and he smiles—“you can look at them as my wife and I do and find them … adorable. But they are mine, they are intact, and I will be grateful for the rest of my life to my parents for their decision to let me be.”

The audience, some politically minded, some medically minded, and some just curious, exhales in relief. They are horrified by the idea that this perfectly nice, perfectly ordinary man might have been mutilated and forced to live as a girl because his penis was so small as to disturb his doctor.

Hale Hawbecker might never have spoken out if Cheryl Chase hadn’t persuaded him to tell his story for the sake of babies less lucky. All roads, all conversations, all the best writings on the intersexed (Dreger, Fausto-Sterling, Kessler), lead to Cheryl Chase, and so does almost everyone else who deals with the subject, in sexology of all kinds, in pediatric endocrinology, in the practical business of civil rights, and in the even more practical business of medical care. Mickey Diamond, the psychologist who helped topple John Money through dogged intellectual persistence, impeccable research, and his own unshakable conviction that he was right and Money was wrong, even when no one else was publicly on Diamond’s side, says of Chase, “Well, she has her own agenda, but everything ISNA suggests as the right way to treat these children is the right way. Nature loves variety. Unfortunately, society hates it.”

I meet Chase last, after the other folks from ISNA, after pediatricians and surgeons and endocrinologists and historians, after interviewing people who were suicidal from age eleven until the day they discovered ISNA, and people who never thought there was anything wrong with their unusual genitalia and still don’t, and people who believe they are a third gender. (“Well, what else am I? What else would you call it?” asked Eugene Pennington, an ISNA member engaged in a lawsuit against the company that fired him. “I have breasts and a penis and I definitely feel some kind of monthly cycle. I live as an effeminate straight man. I don’t feel like an unusual guy, I feel like something else entirely. What I really am is a third gender — which no one wants to hear about.”)

Chase and her partner, Robin Mathias, a health care data analyst and now also an ISNA volunteer, rent a gingerbread house in a middle-class neighborhood in Petaluma, California. A lush and entangled garden hides the door. Once through the gate and the front porch, I enter ISNA in its two-room entirety. Like any successful nonprofit, it is humming with computers and faxes and graduate student interns, but even the best endowed of nonprofits can’t touch ISNA’s computer wizardry. It’s not the budget or the size of its staff that makes ISNA huge; the truth shall set you free, and the Web shall get the truth out there. Virtual ISNA is huge and deep, an exquisitely organized website with links to everything intersex. Medical professionals, support groups, intersexed people, the parents of intersexed newborns, academics, the wannabe intersexed, and the intersexed-chasers all flock to the site. Those who think they are intersexed, or hope they are intersexed but have no physical sign of intersexuality (“I have terrible PMS. Am I intersexed?” “I can’t stand most men, even though I’m a man. Am I intersexed?”), are sent elsewhere, briskly. Those who desire romance with the intersexed are ignored.

ISNA now has money — not a lot, about a hundred thousand dollars, but a geometric leap from the change in Chase’s pocket when she started this movement. Doctors, especially pediatricians, send in their contributions, and Chase and her CFO both now receive modest salaries. Before she started ISNA, Chase founded a software development company. She was successful in America and Japan, and there is very little about computers and communication and the art of translation that she doesn’t understand. And when, despite all the success, she felt herself falling apart, she volunteered at Tokyo English Life Line (TELL), a crisis hotline for English-speaking people of all nationalities. Suddenly she recognized depression, recognized identity confusion, recognized people in denial, and she began to remember and to wonder. She remembered multiple X rays and blood tests and manual examinations of her vagina and rectum, at the age of seven, and the surgery to trim the testicular part of her ovotestes away. She remembered and she researched and she became a one-woman campaign, not to stop surgery (that would be an understandable goal, given her experience, but it is not her goal, because she is not only a thoughtful person but a logical one), but to stop the shame and prejudice that lead to unnecessary surgery.

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 sexual 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.