Lingua Franca, May/June 1999    » Visit the original URL for this article
The Sex That Dare Not Speak Its Name
By Emily Nussbaum

In 1991, Cheryl Chase began scouring libraries for clues about what had happened to her as a small child on the operating table. “I’d look for any book that had anything on clitoridectomy, hermaphrodites, or intersexuals,” she recalls. “I’d skim the pages and read how horrible the Africans are, how barbaric the Victorians were, but never an admission that we still do what they do.” She read about hermaphrodites as ancient mythical figures, as literary symbols, as metaphors for the ambiguity of gender. She also turned to medical texts where she found only “artless, clumsy close-ups of genitals, with surgeons’ fingers and tools, but nothing that touched on why we do this or how it feels to have these things done to you.”

Finally, Chase came upon Myths of Gender (Basic, 1985) by Brown University embryologist Anne Fausto-Sterling. In the book, Fausto-Sterling attacked research purporting to show that inequities between men and women are based in biology. In passing, she mentioned the corrective surgery performed on infants with ambiguous genitals — surgery of the sort Chase underwent when she was eighteen months old, leaving her physically scarred and incapable of orgasm. While Fausto-Sterling questioned the success and benefits of such surgery, she did not directly question its necessity. Chase picked up the phone to tell the professor she was wrong.

“I told her that because she hadn’t talked to intersexed people, she didn’t understand just how barbaric what doctors do to us is,” says Chase. To her delight, Fausto-Sterling was not merely receptive — she had already rethought her views. In fact, an essay documenting her change of heart was about to appear in the journal The Sciences. Titled “The Five Sexes: Why Male and Female Are Not Enough,” the article argued that doctors should perform operations on infants only to correct life-threatening conditions, not to “normalize” ambiguous anatomies. Fausto-Sterling encouraged Chase to write a letter to the journal after the article came out. Chase did so, in the process announcing the founding of the Intersex Society of North America (ISNA), an advocacy and support organization for people born with ambiguous genitals. Their goal: to prevent doctors from surgically “correcting” such atypical anatomies at birth.

“When I was born, I was not any more truly female than I was truly male,” says Chase. “When they’re talking to parents, doctors have a narrative about ‘true’ sex, but they understand among themselves that they’re basing it on surgical convenience.” The medical assumption, she points out, is that genitals are there simply to mark gender — and surgery is necessary to keep the line between men and women distinct. But this logic, Chase argues, overlooks something crucial. As she put it in a 1998 essay, “What are genitals for? It is my position that my genitals are for my pleasure.”

A hermaphrodites’ rights movement? It’s a startling notion given that many people hardly realize that intersexuals (the more polite medical term for people with sex-ambiguous anatomies) exist at all. But Chase has started just such a movement, and in the process she has made a small splash in the academy — winning support from cultural historians who believe that gender may be more complicated than our conventional male and female categories allow. She has also met with resistance from many doctors who insist that surgical “correction” is the best way to guarantee that an infant with ambiguous genitalia will lead a happy life.

To most people, the term “hermaphrodite” evokes a mythical creature, tragic and ridiculous. One might recall Ovid’s story of the nymph Salmacis, who falls in love with the beautiful Hermaphroditus, and begs the gods to unite her with him, only to have her wish taken literally. But according to Fausto-Sterling, as many as one in two thousand infants is born with ambiguous genitalia, an incidence comparable to that of familiar diseases like cystic fibrosis. But because most gender-blurring conditions are “corrected” in infancy under a veil of medical secrecy, people born with such conditions often don’t even know it. Frequently, doctors keep parents in the dark as well. While there may be some hundred thousand intersexuals in the United States, the number of adults who identify themselves as such is much smaller.

Not all genital oddities necessarily affect gender determination: Hypospadias, for example, in which the urethra opens on the undersurface of the penis, is a relatively common circumstance. Even though the sex of hypospadiac babies is usually not in doubt, they routinely receive surgery — on the premise that boys need to be able to pee standing up.

A great many genital oddities, however, do frustrate medical efforts to assign an infant a sex. There are babies that have phalluses midway in size between penises and clitorises; others have both a penis and a vagina, or a scrotum, no testicles, and a vagina. There are also men who menstruate through the penis. Then there are infants born with female external genitals who go on in adolescence to develop enlarged phalluses and certain male secondary sex characteristics (this condition is known as 5-AR deficiency, or “balls-at-twelve” syndrome). Persons with androgen insensitivity syndrome are born with XY (typically male) chromosomes and testes but lack the receptors to respond to androgen. They often develop female genitals and a shallow vagina and generally grow up to be extremely tall, slender, hairless, and curvaceous. One of the most common intersex conditions is congenital adrenal hyperplasia (CAH). Infants with CAH have an XX chromosome and ovaries but masculinized genitals, sometimes to such an imperceptible degree that the child goes years before being diagnosed.

Among the most renowned real-life hermaphrodites was the nineteenth-century French suicide Alexina/Abel Barbin, whose case became a touchstone for medical men of the day. Raised as a girl, Barbin began a passionate love affair with a female friend when Barbin was in her early 20s. She confessed the affair to her doctor, who informed her that her genitals — most likely profoundly hypospadiac, with a small phallus — were in fact male. Barbin switched genders, changing her clothes, her profession, and her name. Unable to marry her lover after the ensuing public scandal, she became a reclusive railroad clerk in Paris and eventually killed herself. “When [the day of my death] comes, a few doctors will make a little stir around my corpse [and] will analyze al l the mysterious sufferings that were heaped up on a single human being,” Barbin predicted in her florid memoirs, which were published in 1978 with an introduction by Michel Foucault.

But Barbin is merely the tip of the iceberg. As a growing body of scholarship documents, persons of what the Victorians termed “doubtful sex” have existed throughout time, treated variously as monsters, marvels, objects for study, celebrities, and subjects of legal debate. The Talmud details marriage and property-rights laws for persons with ambiguous anatomies; St. Augustine refers to “persons of sex so doubtful, that it remains uncertain from which sex they take their name”; and the Kama Sutra includes sex tips for lovemaking with hermaphrodites.

As with homosexuals, the social experience of intersexed individuals varied depending on where and when they lived. According to UC-Berkeley history professor Thomas Laqueur, only since 1800 have male and female bodies come to be viewed as utterly distinct. As far back as Aristotle, Laqueur writes in Making Sex: Body and Gender From the Greeks to Freud (Harvard, 1992), experts spoke in terms of only one human body type, with males sporting the amped-up, deluxe model, and women the budget version, with genitals identical to males’ but inverted for lack of the creative heat to pop them out. Body fluids, too, were unisex: Menstrual blood, semen, and milk were seen as variants of a single fluid, with semen the high octane of the bunch. In this context, hermaphrodites did not belong to a third sex; they existed along a continuum, somewhere between (imperfect) women and (perfect) men. Though some hermaphrodites were executed or exiled, others were tolerated: In the sixteenth century, for example, the chief surgeon to Charles IX of France, Ambroise Paré, noted approvingly the case of one Marie-Germain, a teenage French girl who supposedly sprang a penis after leaping over a ditch. “Nature,” Paré applauded, “tends always toward what is most perfect.”

Medical disputes about the nature and meaning of hermaphroditism proliferated in the nineteenth century as doctors increasingly viewed men and women as opposing types rather than points on a continuum — the result, in part, of the discovery that male and female fetuses followed two different developmental pathways. In Hermaphrodites and the Medical Invention of Sex (Harvard, 1998), Michigan State University historian of science Alice Dreger ascribes the growing visibility of the hermaphrodite to Victorian anxieties about gender-blurring social phenomena, including homosexuality and feminism, as well as to improvements in medical science. During the Victorian era, Dreger argues, a greater number of women gained access to gynecological care, and as a result, infant anatomy came under more professional scrutiny; medical journals of the period, widely accessible for the first time, publicized anomalous cases. Scientific knowledge of embryological development began turning the one-time monster or marvel into, in the words of the turn-of-the-century French doctor Xavier Delore, “a scientific matter and a degraded organism.”

The Victorians were determined to assign a gender, any gender, to their young. Entire committees of experts convened to determine the sex of ambiguous “specimens,” weighing phallus size, vocal timbre, and hairiness in often heated debates. In one such case in 1888, a squabbling committee of the British Gynecological Society threw up its hands rather than choose a sex: The subject in question was crudely photographed (genitals in the foreground, lifted by a phantom medical hand, a face floating eerily in the background) and sent home. But in the late nineteenth century (a period Dreger terms the “Age of Gonads”), doctors increasingly deferred to the presence of either ovaries or testicles as the final word on gender. The capacity to reproduce became the decisive marker of sex. A patient with testicles was ipso facto male, regardless of whether a clitoris, labia, curved hips, breasts, and other typically female secondary sexual characteristics were present. The epistemological result: There were no hermaphrodites, just confusing bodies that doctors could — with a bit of work — reveal to be male or female.

The discovery of XX (female) and XY (male) chromosomes in the early 1900s challenged the diagnostic primacy of gonads and genitalia, but it also served to reinforce the notion of a true sex. After all, if the genes contained a blueprint of the sexual master plan, why shouldn’t the external physique simply be altered to match? Breakthroughs in chromosomal and hormonal medicine were accompanied by advances in surgical technique. Enlarged clitorises and micro-phalluses could be resized, testicles removed, vaginas deepened or created from scratch, and hypospadiac urinary holes nudged toward the tip of the penis. Today, artificial hormones can shift a voice higher or lower, alter hair-growth patterns, or “grow” a penis. Then again, some procedures remain easier than others: Most sexually ambiguous babies (including many XY males with micro-phalluses) are made into females, since, as one much-quoted surgeon put it, “it’s easier to make a hole than build a pole.”

By the 1960s, surgical gender assignment became the norm, thanks in large part to Johns Hopkins University sexologist John Money, who trained the first generation of intersex specialists. Money believed that intersexual infants could grow up to be well-adjusted men or women, so long as their genitals were made to look conventional and their peers were none the wiser. To this end, doctors he trained steered intersexual babies into whichever gender was easily ensured by surgery — which usually meant making them into girls. In 1972, Money cemented his claims for early surgical intervention with a seemingly perfect test case: a male baby who suffered a catastrophic circumcision accident when he was seven months old. After doctors castrated him and created labia and a vaginal cleft, the child was raised as a girl. Money touted the case as a brilliant example of gender plasticity: Infants, he said, could be readily propelled into boyhood or girlhood within the first two years of their lives, as long as the people around them were insistent about their sex.

Money became a hero to some feminists who celebrated the case as proof that gender was based on social convention rather than biological essences. But in 1997, the case was exposed by the University of Hawaii biologist Milton Diamond (long a professional enemy of Money’s) as utterly bogus: The unhappy “Joan” had never felt female and eventually had had a sex-change operation, becoming — once again — a male. The adult “John” was living as a heterosexual married man and stepfather to three children and remained deeply resentful of the medical treatment he had received as a youth.

Diamond’s exposé received extensive press coverage. Even so, the treatment of intersexual infants continues to follow Money’s guidelines. Medical textbooks recommend that cosmetic genital surgery be done as early as possible, to erase the signs of genital ambiguity before the child becomes aware of a given gender identity (or the lack of one). Frequently, doctors don’t even tell parents that their baby is intersexed. Instead, as SUNY Purchase psychology professor Suzanne Kessler documents in Lessons From the Intersexed (Rutgers, 1998), they use vague or deceptive language to avoid alarming families, describing testicles to be removed as “deformed ovaries,” for example. In the nineteenth-century tradition, physicians inform parents not that their child’s sex is ambiguous but that he or she has a true sex that is marred by deformity, which can be corrected only with prompt medical treatment.

Cheryl Chase was one unhappy patient who had been treated according to Money’s protocols. In 1956, she was born a “true” hermaphrodite: She had both ovarian and testicular tissue, a phallus midway between an average penis and an average clitoris, and a vaginal opening behind her urethra. The full nature of her condition, however, was not immediately obvious to her doctors. They sedated her mother for three days while they debated the infant’s gender assignment. Finally, they announced that the baby was a deformed male and that nothing could be done. When Cheryl was eighteen months old, her parents made their way to a new set of doctors, who — after X rays, blood tests, and hormone readings — announced that the young “Charlie” was in fact a girl. The doctors performed a full clitoridectomy, removing the internal shaft as well as the external phallus. They recommended that Chase’s parents dress the child in pink rather than blue, give it a female name, and move to a new city, leaving no forwarding address. At eight, when Cheryl’s testicular tissue was removed, her parents and doctors told her that the surgery was to relieve stomachaches.

Chase’s adult anatomy was marred by scar tissue; she had no clitoris, and lovers could immediately tell that she wasn’t a “normal” woman. After years of hounding doctors, who claimed that her medical records had been lost, Chase finally had the chance to examine the documents at age twenty-two. Ashamed and confused, she kept the information to herself. Then, in 1991, when she was thirty-five, Chase had a nervous breakdown and an epiphany.

At the time, she was a successful software engineer, living in Japan. She was also shy, lonely, and socially isolated. The problem, she realized, was not her anatomy, but the fact that it was considered taboo. She came out to everyone she knew, searching (on the then-fledgling Internet) for persons like herself. Under the impression that there were no more than a dozen like her in the world, she expected to bond with African women who had survived ritual clitoridectomy or, perhaps, transsexuals who had transited from one “true” gender to another. Instead, she began to find other intersexuals, some who had received surgery, some who remained intact. These Internet contacts formed the core of ISNA. When eight members finally met face-to-face in San Francisco in 1995, the encounter was emotional. The group later recorded a video of their stories, distributed as Hermaphrodites Speak! and launched a Web site. ISNA also began to organize protests at pediatric conventions and started a newsletter, Hermaphrodites With Attitude. The group’s mailing list now has fourteen hundred subscribers.

The organization’s basic position is straightforward: Intersexed infants should receive treatment only for medically dangerous conditions. Otherwise, they should be left alone. Ambiguous genitalia need not prevent a child from growing up contentedly or from adopting a conventional gender identity — if he or she wants it. In the end, ISNA argues, gender is more about clothes and hair than genitals: Children can be raised identifying as female or male, and as they grow older, they can switch genders without necessarily having surgery. Accordingly, doctors should speak openly with parents about an intersexed child’s status, and children and their families should receive supportive counseling to help them cope with social pressures and medical decisions. As adolescents or adults, intersexuals can decide for themselves whether to take hormones or have surgery.

From ISNA’s point of view, contemporary surgical procedures are as riddled with unexamined biases as any nineteenth-century “doubtful sex” committee. A successful surgically created vagina, for example, is defined as that which is capable of intercourse — and not, say, as one that is capable of lubrication or erotic sensation. And, as in Chase’s case, the definition of an anomalous phallus as a “too-large clitoris” or a “too-small penis” is dependent on the assumption that it has to be one or the other. Genital ambiguity is presumed to be intolerable, writes Suzanne Kessler, “not because it is threatening to the infant’s life, but because it is threatening to the infant’s culture.”

Consent is at the center of this debate. Parents and doctors, argue ISNA’s proponents, don’t have the right to alter an infant’s genitals in order to make him or her look more “normal.” Not everyone agrees: After all, cosmetic surgery is performed on infants all the time, for conditions ranging from harelips to birthmarks. And consent isn’t possible for children anyway. Is it really fair to leave a baby with “weird” genitals in a world in which the first question people ask is whether a newborn is a boy or a girl? Can parents be expected to enlist their children in a cultural experiment when most people either are unaware such conditions exist or view them as grotesque and laughable, the equivalent of Saturday Night Live’s gender-ambiguous Pat? Couldn’t social ostracism lead to deeper psychological scars than an operation or two? Aren’t intersex conditions just birth defects — abnormal variations from the normal pattern of male and female?

These are charged issues, to be sure. It doesn’t help that there is little research that might help address them. The problem, even supporters of corrective surgery admit, is that the medical literature is riddled with the phrase “lost to follow up”: Many patients have simply dropped off the radar, so there is little information about the erotic experience or gender stability of adult intersexuals. These vanished intersexuals may be living happily or unhappily with their gender; they may feel more or less sexually sensate, normal, damaged, or confused. It’s impossible to tell. Those who speak out are, inevitably, those who have a problem with the treatment they received. But those who don’t speak out are not necessarily satisfied customers. They may be, as Chase was for many years, isolated and depressed but nonetheless angry.

Once she became an intersexual activist, Chase was frequently regarded by doctors as, at best, a crybaby, at worst, “a bomb-throwing radical.” She had started out with cold calls to the top medical authorities but quickly hit a brick wall. One famous doctor told her that she’d received excellent care and had nothing to complain about. (John Money was one of the few who said he would discuss the issues she raised — if she paid him $100 an hour.) And an early attempt to influence the medical Establishment on its own turf was a flop, if an educational one. After much tense negotiation, and an alliance with Bill Byne, a neuroanatomist at New York City’s Mount Sinai Medical Center, ISNA managed to add a patients’ panel to the hospital’s symposium on pediatric genital surgery in 1996. But the panel did not go over well, deteriorating into a point-counterpoint exchange, with shaky-voiced intersexuals crossing rhetorical swords with doctors on the panel and in the audience. After the event ended, one of the doctors told Chase that nothing he had heard would change the way he dealt with patients.

Chase did not give up. She continued to contact humanists and social scientists, whom she deemed more likely than doctors to sympathize with ISNA’s agenda. The results were mixed: While many sexologists, queer theorists, and academic feminists were fascinated by theories of gender transgression, they weren’t necessarily interested in Chase’s brand of political activism or in lobbying the medical Establishment. But gradually, Chase made alliances with Fausto-Sterling and Dreger, and then with Kessler, who is best known for her textbook (co-written with Wendy McKenna) Gender: An Ethnomethodological Approach (Chicago, 1985), which deals with transgender issues. Kessler’s 1990 article in Signs, “The Medical Construction of Gender,” was especially prescient, the first real glimmering of an academic critique of the medical status quo.

One result of Kessler’s encounter with Chase was Lessons From the Intersexed. In the book, Kessler quotes extensively from medical texts and interviews with doctors, presenting the assumptions that shape intersex diagnoses. One widely held belief is that a large penis is equivalent to maleness, whereas the ability to procreate defines femaleness, no matter what other physical attributes an individual might have. “While this looks like a small penis, it’s actually a large clitoris,” Kessler quotes one physician explaining. “And what we’re going to do is put it back in its proper position and reduce the size of its tip so it doesn’t look funny, so it looks right.”

But even with some credentialed scholars behind it, ISNA continues to have a difficult time converting medical minds to its point of view. According to Philip Gruppuso, a professor of pediatrics and biochemistry at Brown University who has recently embraced ISNA’s agenda, his colleagues’ intransigence is the result of basic medical conservatism mixed with a genuine emotional anxiety. “Whenever physicians are confronted with the fact that something that was standard is incorrect, you’re forced to think about all the damage you did,” he explains. “I went through that. For the first ten years, I assigned ‘male hermaphrodites’ [those with testes] as female, based on the size of their phallus, a totally wrong approach.” The right approach, says Gruppuso, is ISNA’s: full disclosure to parents and no immediate surgery. But, Gruppuso worries that doctors are simply unwilling to grant expertise to academics in nonmedical disciplines, even when it would illuminate their own work. “We need to concede that we might be experts on the biology and science but not necessarily in psychology, sociology, and anthropology. I would hazard a guess that Suzanne Kessler knows more about these diseases than 95 percent of pediatricians.”

Gruppuso is not the only doctor to have changed his thinking and his medical practice as a result of contact with ISNA advocates. Justine Schober, a pediatric urologist in Erie, Pennsylvania, never spoke to ISNA directly, but after learning about the group through the medical grapevine, she ordered a tape of Hermaphrodites Speak! and became a major ISNA proponent, one of the few surgeons to do so. Then, last year, Milton Diamond (the debunker of Money’s Joan/John case) gave a keynote address at the American Academy of Pediatrics convention in which he called for a change in the medical protocols for intersexed children. Schober, who was present at the session, says the audience was literally shocked into silence: “One would have expected a very brash negative reaction, but it was exactly the opposite: No one spoke for minutes afterward. For me, it was almost a chilling experience.” Last year, The Journal of Clinical Ethics published a version of this address, co-authored by University of Hawaii philosophy professor Kenneth Kipnis, in a special issue devoted to intersexuality.

One of the most striking examples of a medical turnaround is Judson Van Wyk, Kenan Professor of Pediatrics at the University of North Carolina School of Medicine and the author of the classic textbook chapter “Disorders of Sex Differentiation” on the diagnosis and surgical treatment of intersexed infants. Thanks in part to conversations with Gruppuso, Van Wyk is now opposed to many of the protocols he helped establish. In his earlier work, he says, “I claimed that children should not be assigned male unless it is reasonable to expect an adult phallus of adequate size. I wrote about the tragic outcomes associated with assigning a male gender to kids with small penises.” Such claims no longer impress him: “I would take that back today.” He would also take back his recommendation that doctors conceal intersex diagnoses from parents: “That’s one of the most damaging things I said in my chapter. I myself used to tell families that their child’s sex was ‘unfinished’ and compare it to a cleft lip; I assumed they could not accept the truth.”

Not that Van Wyk is exactly an ISNA cheerleader. While he says Chase and her allies “have done us a great favor by pointing out our mistakes,” he believes that they lump too many different medical conditions under the “intersexed” rubric and come to premature conclusions about what should or shouldn’t be done about abnormal genitalia. “She doesn’t have any more data on those patients reared on her recommendations than she has on those treated according to the classic recommendations,” he says. “Let’s face it, patients with genital ambiguity have real problems, and the outcomes are not likely to be great no matter how they’re treated.”

Some ISNA members disagree. And despite entrenched resistance from surgeons and reservations in the medical community, protocols are beginning to change — with potentially dramatic implications for our understanding of gender. ISNA cont ends that intersexual children can be raised as boys or girls, but it’s hard to deny that the presence of such adults is bound to throw expectations of gender stability out of kilter, just as open homosexuality has altered notions about erotic behavior. Some activist intersexuals, however, see this potential as an unambiguously good thing. Adult intersexuals could “disrupt a lot of social conditioning — it’s exciting to think about the insights these people could provide,” says Hida Viloria, an ISNA member and San Francisco resident who wrote her undergraduate thesis at Berkeley on three intersexuals who, like herself, were left intact at birth. “They were, for the most part, better off than I thought they would be,” she reports. “They were all involved with women, and all of them have a varying degree of third-gender identity.” One of her subjects legally changed her gender from female to male, without having any surgery, in order to marry her partner.

To many of the doctors who work with intersexed kids, Viloria’s conclusions sound hopelessly naive. Even if many hermaphrodites are born without a “true” sex, isn’t there a case to be made for treating them as if they had one? Walter J. Meyer III, M.D., a professor at the University of Texas Medical Branch’s department of human biological chemistry and genetics, puts it this way: “What are you going to say, ‘Boys get in this line, girls get in that line, and all the little hermaphrodites get in this other line?’ Have you ever tried to buy a present for a baby without knowing whether it’s a boy or a girl? You can’t do it. We owe the child a gender.”

One possible solution to this deadlock is to step outside Western culture, where there are examples of third-gender social roles, many of them assigned to those with intersexual bodies. Parts of Sambia, a province of New Guinea, and the Dominican Republic have high proportions of 5-AR; these cultures accept that at adolescence a few seeming girls will develop masculine genitals and grow hairy and muscular. And in the Navajo tradition, those individuals known as “two-spirit” persons (intersexuals and biological men and women who take on clothing and roles of the opposite sex) were considered special gifts to a family; they were believed to be especially skilled at contacting ancestors and helping to raise children. “People who were of ambiguous gender or anatomy could be accepted and, under the best conditions, celebrated,” notes anthropologist Gilbert Herdt, the editor of Third Sex, Third Gender (Zone, 1994), an anthology dealing with such societies. “They were the healers or the priests or the shamans, whose bodies or special characteristics seem to have suggested divine blessings, that the community recognized as being valuable.”

As a small but growing community of “out” intersexuals struggles to find a way to live openly in the world, these models may offer one glimmer of possibility.