Normal

by Amy Bloom

  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 elemen
tary 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.