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ESSAYS & COMMENT

De LACrace Volcano, Jack Unveiled, 1994

18 THE SCIENCES • JJllyIAJI.~Jlst 2000 THE FIVE , REVISITED

The emerging recognition that people come in bewildering sexual varieties is testing medical values and social norms

BY ANNE FAUSTO-STERLING

S CHERYL CHASE STEPPED TO THE FRONT ous genitalia. And that discussion, in turn, is the tip of a ofthe packed meeting room in the Sher­ biocultural iceberg-the iceberg-that continues aton Boston Hotel, nervous coughs made to rock both medicine and our culture at large. the tension audible. Chase, an activist for Chase made her first national appearance in 1993, in these intersexualArights, had been invited to address the May 2000 very pages, announcing the formation of ISNA in a letter meeting ofthe Lawson Wilkins Pediatric Endocrine Soci­ responding to an essay I had written for The Sciences, titled ety (LWPES), the largest organization in the United States "The Five Sexes" [MarchiApril 1993]. In that article I argued for specialists in children's hormones. Her talk would be that the two- system embedded in our society is not ade­ the grand finale to a four-hour symposium on the treat­ quate to encompass the full spectrum ofhuman sexuality. In ment ofgenital ambiguity in itsplace, I suggested a five-sex newborns, infants born with system. In addition to males MUCH HAS CHANGED SINCE a mixture of both male and 1993. and , I included anatomy, or genitals Intersexuals have materialized "herms" (named after true that appear to differ from .before our very eyes. , people born their chromosomal sex. The with both a testis and an topic was hardly a novel one ovary); "rnerms" (male pseu­ to the assembled physicians. dohermaphrodites, who are Yet Chase's appearance before the group was remarkable. born with testes and some aspect of female genitalia); and Three and a half years earlier, the American Academy of "ferms" (female pseudohermaphrodites, who have ovaries Pediatrics had refused her request for a chance to present the combined with some aspect ofmale genitalia). patients' viewpoint on the treatment of genital ambiguity, I had intended to be provocative, but I had also written dismissing Chase and her supporters as "zealots." About two with tongue firmly in cheek. So I was surprised by the extent dozen people had responded by throwing up a pick­ ofthe controversy the article unleashed. Right-wing Chris­ et line. The Intersex Society ofNorth America (ISNA) even tians were outraged, and connected my idea offive sexes issueda pressrelease:"Hermaphrodites Target Kiddie Docs." with the United Nations-sponsored Fourth World Con­ It had done my 1960s street-activist heart good. In the ference on Women, held in Beijing in September 1995. short run, I said to Chase at the time, the picketing would At the same time, the article delighted others who felt con­ make people angry. But eventually, I assured her, the doors strained by the current sex and . then closed would open. Now, as Chase began to address Clearly, I had struck a nerve. The fact that so many peo­ the physicians at their own convention, that prediction was ple could get riled up by my proposal to revamp our sex and coming true. Her talk, titled "Sexual Ambiguity: The gender system suggested that change-as well as resistance Patient-Centered Approach," was a measured critique of to it-might be in the offing. Indeed, a lot has changed since the near-universal practice ofperforming immediate, "cor­ 1993, and I like to think that my article was an important rective" surgery on thousands ofinfants born each year with stimulus. As iffrom nowhere, intersexuals are materializing ambiguous genitalia. Chase herself lives with the conse­ before our very eyes. Like Chase, many have become polit­ quences of such surgery. Yet her audience, the very icalorganizers, who lobby physiciansand politiciansto change endocrinologists and surgeons Chase was accusing ofreact­ current treatment practices. Butmore generally, though per­ ing with "surgery and shame," received her with respect. haps no less provocatively, the boundaries separating mas­ Even more remarkably, many ofthe speakers who preceded culine and feminine seem harder than ever to define. her at the session had already spoken ofthe need to scrap Some find the changes under way deeply disturbing. Oth­ current practices in favor of treatments more centered on ers find them liberating. psychological counseling. What led to such a dramatic reversal of fortune? Cer­ HO ISAN INTERSEXUAL-AND HOW MANY tainly, Chase's talk at the LWPES symposium was a vindi­ intersexuals are there? The concept of cation ofher persistence in seeking attention for her cause. W intersexuality is rooted in the very ideas But her invitation to speak was also a watershed in the evolv­ of male and female. In the idealized, Platonic, biological ing discussion about how to treat children with ambigu- world, human beings are divided into two kinds: a perfect-

jllly/Allgllst 2000 • THE SCIENCES 19 ly dimorphic . Males have an X and a Y chromo­ ternal genitals that seem at odds with the baby's . some, testes, a and allofthe appropriate internal plumb­ Most clinics now specializing in the treatment ofintersex ing for delivering urine and semen to the outside world. They babies rely on case-management principles developed in the also have well-known secondary sexual characteristics, 1950s by the psychologist and the psychiatrists including a muscular build and facialhair. Women have two Joan G. Hampson and John L. Hampson, all ofJohns Hop­ X chromosomes, ovaries, allofthe internal plumbingto trans­ kins University in Baltimore, Maryland. Money believed that port urine and ova to the outside world, a system to support is completely malleable for about eighteen and fetal development, as well as a variety ofrec­ months after birth. Thus, he argued, when a treatment team ognizable secondary sexual characteristics. is presented with an infant who has ambiguous genitalia, the That idealized story papers over many obvious caveats: team could make a gender assignment solely on the basis of some women have hair, some men have none; some what made the best surgical sense. The physicians could then women speak with deep voices, some men veritably simply encourage the parents to raise the child according to squeak. Less well known is the fact that, on close inspec­ tion, absolute dimorphism disintegrates even at the level of basic biology. Chromosomes, hormones, the internal sex structures, the gonads and the external genitalia allvary more than most people realize. Those born outside of the Pla­ tonic dimorphic mold are called intersexuals. In "The Five Sexes" I reported an estimate by a psy­ chologist expert in the treatment ofintersexuals, suggesting that some 4 percent ofall live births are intersexual. Then, together with a group of Brown University undergradu­ ates, I set out to conduct the first systematic assessment of the available data on intersexual birthrates. We scoured the medical literature for estimates ofthe frequency ofvarious categories of intersexuality, from additional chromosomes to mixed gonads, hormones and genitalia. For 'Some con­ ditions we could find only anecdotal evidence; for most, however, numbers exist. On the basis ofthat evidence, we calculated that for every 1,000 children born, seventeen are intersexual in some form. That number-1.7 percent-is a ballpark estimate, not a precise count, though we believe it is more accurate than the 4 percent I reported. Our figure represents all chromosomal, anatomical and hormonal exceptions to the dimorphic ideal; the number ofintersexuals who might, potentially, be subject to surgery as infants is smaller-probably between one in 1,000 and one in 2,000 live births. Furthermore, because some pop­ ulations possess the relevant genes at high frequency, the intersexual birthrate is not uniform throughout the world. the surgically assigned gender. Following that course, most Consider, for instance, the gene for congenital adrenal physicians maintained, would eliminate psychological dis­ hyperplasia (CAH). When the CAH gene is inherited from tress for both the patient and the parents. Indeed, treatment both parents, it leads to a baby with masculinized external teams were never to use such words as "intersex" or "her­ genitalia who possesses two X chromosomes and the inter­ maphrodite"; instead, they were to tell parents that nature nal reproductive organs ofa potentially fertile woman. The intended the baby to be the or the girl that the physi­ frequency ofthe gene varies widely around the world: in cians had determined it was. Through surgery, the physi­ New Zealand it occurs in only forty-three children per mil­ cians were merely completing nature's intention. lion; among the Yupik Eskimo ofsouthwestern Alaska, its Although Money and the Hampsons published detailed frequency is 3,500 per million. case studies ofintersex children who they said had adjust­ ed well to their gender assignments, Money thought one N T ER SEXUALIT Y HAS ALWAYS BEEN TO SOME case in particular proved his theory. Itwas a dramatic exam­ extent a of definition. And in the past ple, inasmuch as it did not involve intersexuality at all: one I century physicians have been the ones who ofa pair ofidentical twin boys lost his penis as a result of defined children as intersexual-and provided the reme­ a accident. Money recommended that 'John" dies. When only the chromosomes are unusual, but the (as he came to be known in a later case study) be surgical­ external genitalia and gonads clearly indicate either a male ly turned into "Joan" and raised asa girl. In time,Joan grew or a female, physicians do not advocate intervention. to love wearing dresses and having her hair done. Money Indeed, it is not clear what kind ofintervention could be proudly proclaimed the sex reassignment a success. advocated in such cases. But the story is quite different But asrecently chronicledbyJohn Colapinto, in his book when infants are born with mixed genitalia, or with ex- As Nature Made Him, Joan-now known to be an adult

20 THE SCIENCES' }lIly/AlIglI.

[anine Antoni, Mom and Dad, 1994

sexual sensitivity. Chase herself had a complete clitoridec­ time to perform a thorough medical workup and should tomy, a procedure that is lessfrequently performed on inter­ disclose everything to the parents, including the uncer­ sexuals today. But the newer surgeries, which reduce the tainties about the final outcome. The treatment mantra, size ofthe clitoral shaft, still greatly reduce sensitivity. in other words, should be therapy, not surgery. I believe a new treatment protocol for intersex infants, HE REVELATION OF CASES OF FAILED REASSIGN­ similar to the one outlined by McCullough, is close at hand. ments and the emergence of intersex activism Treatment should combine some basic medical and ethi­ T have led an increasing number of pediatric cal principles with a practical but less drastic approach to endocrinologists, urologists and psychologists to reexamine the birth of a mixed-sex child. As a first step, surgery on the wisdom ofearly genital surgery. For example, in a talk infants should be performed only to save the child's life or that preceded Chase's at the LWPES meeting, the medical to substantially improve the child's physical well-being. ethicist Laurence B. McCullough of the Center for Med­ Physicians may assign a sex-male or female-to an inter­ ical Ethics and Health Policy at Baylor College of Medi­ sex infant on the basis of the probability that the child's cine in Houston, Texas, introduced an ethical framework particular condition will lead to the formation ofa partic­ for the treatment of children with ambiguous genitalia. ular gender identity. At the same time, though, practitioners Because sex phenotype (the manifestation ofgenetically and ought to be humble enough to recognize that as the child embryologically determined sexual characteristics) and gen­ grows, he or she may reject the assignment-and they der presentation (the sex role projected by the individual in should be wise enough to listen to what the child has to society) are highly variable, McCullough argues, the vari­ say. Most important, parents should have access to the full ous forms ofintersexuality should be defined as normal. All range ofinformation and options available to them. of them fall within the statistically expected variability of Sex assignments made shortly after birth are only the

JI/I)'!AI/<~I/st 2000 • THE SCIENCES 21 beginning of a long journey. Consider, for instance, the The current usage remains rooted in the Victorian approach life of Max Beck: Born intersexual, Max was surgically to sex. The logical structure ofthe commonly used terms assigned as a female and consistently raised as such. Had her "true ," "male pseudohermaphrodite" and medical team followed her into her early twenties, they "female pseudohermaphrodite" indicates that only the so­ would have deemed her assignment a success because she called true hermaphrodite is a genuine mix of male and was married to a . (It should be noted that success in female. The others, no matter how confusing their body gender assignment has traditionally been defined as living parts, are really hidden males or females. Because true her­ in that gender as a heterosexual.) Within a few years, how­ maphrodites are rare-possibly only one in 100,OOO-such ever, Beck had come out as a butch lesbian; now in her a classification system supports the idea that human beings mid-thirties, Beck has become a man and married his les­ are an absolutely dimorphic species. bian partner, who (through the miracles ofmodern repro­ At the dawn ofthe twenty-first century, when the vari­ ductive technology) recently gave birth to a girl. ability ofgender seems so visible, such a position is hard to Transsexuals, people who have an emotional gender at maintain. And here, too, the old medical consensus hasbegun odds with their physical sex, once described themselves in to crumble. Last fall the pediatric urologist Ian A. Aaronson terms ofdimorphic absolutes-males trapped in female bod­ ofthe Medical University ofSouth Carolina in Charleston ies, or vice versa. As such, they organized the NorthAmerican Task sought psychological reliefthrough Force on Intersexuality (NATFI) to PERSON WHO PROJECTS surgery. Although many still do, A review the clinical responses to gen­ some so-called transgendered peo­ a social gender at odds ital ambiguity in infants. Key med­ ple today are content to inhabit a with his or her genitals ical associations, such as the Amer­ more ambiguous zone. A male-to­ ican Academy of Pediatrics, have female transsexual, for instance, may die for the transgression. endorsed NATFI. Specialists in may come out as a lesbian. Jane, surgery, endocrinology, psycholo- born a physiological male, is now gy, ethics, psychiatry, genetics and in her late thirties and living with public health, as well as intersex her wife, whom she married when her name was stillJohn. patient-advocate groups, have joined its ranks. Jane takes hormones to feminize herself, but they have not One of the goals of NATFI is to establish a new sex yet interfered with her ability to engage in intercourse as nomenclature. One proposal under consideration replaces a man. In her mindJane has a lesbian relationship with her the current system with emotionally neutral terminology wife, though she views their intimate moments as a cross that emphasizes developmental processes rather than pre­ between lesbian and heterosexual sex. conceived gender categories. For example, Type I inter­ It might seem natural to regard intersexuals and trans­ sexes develop out ofanomalous virilizing influences; Type gendered people as living midway between the poles of II result from some interruption ofvirilization; and in Type male and female. But male and female, masculine and fem­ III inters exes the gonads themselves may not have devel­ inine, cannot be parsed assome kind ofcontinuum. Rather, oped in the expected fashion. sex and gender are best conceptualized as points in a mul­ tidimensional space. For some time, experts on gender HAT IS CLEAR IS THAT SINCE 1993, MOD­ development have distinguished between sex at the genet­ ern society has moved beyond five sex­ ic level and at the cellular level (sex-specific gene expres­ W es to a recognition that gender variation sion, X and Y chromosomes); at the hormonal level (in is normal and, for some people, an arena for playful explo­ the fetus, during childhood and after ); and at the ration. Discussing my "five sexes" proposal in her book anatomical level (genitals and secondary sexual character­ Lessonsfrom theIntersexed, the psychologist Suzanne J. Kessler istics). Gender identity presumably emerges from all of ofthe State University ofNew York at Purchase drives this those corporeal aspects via some poorly understood inter­ point home with great effect: action with environment and experience. What has become increasingly clear is that one can find levels ofmas­ The limitation with Fausto-Sterling's proposal is that ... [it] still gives genitals ... primary signifying status and ignores the fact culinity and femininity in almost every possible permuta­ that in the everyday world gender attributions are made without tion. A chromosomal, hormonal and genital male (or access to genital inspection.... What has primacy in everyday female) may emerge with a female (or male) gender iden­ life is the gender that is performed, regardless ofthe flesh's con­ tity. Or a chromosomal female with male fetal hormones figuration under the clothes. and masculinized genitalia-but with female pubertal hor­ mones-may develop a female gender identity. I now agree with Kessler's assessment. It would be bet­ ter for intersexuals and their supporters to turn everyone's HE MEDICAL AND SCIENTIFIC COMMUNITIES focus away from genitals. Instead, asshe suggests, one should have yet to adopt a language that is capable acknowledge that people come in an even wider assort­ T ofdescribing such diversity. In her book Her- ment ofsexual identities and characteristics than mere gen­ maphrodites and theMedical Invention ofSex, the historian and itals can distinguish. Some women may have "large cli­ medical ethicist Alice Domurat Dreger ofMichigan State torises or fused labia," whereas some men may have "small University in East Lansing documents the emergence of or misshapen scrota," as Kessler puts it, "pheno­ current medical systems for classifying gender ambiguity. types with no particular clinical or identity meaning."

22 THE SCIENCES· Jllly/Allgllst 2000 Arthur Tress, Hermaphrodite, 1973

As clearheaded as Kessler's program is-and despite the for such rights are being hammered out in the courts as I progress made in the 1990s-oursociety is still far from that write and, most recently, through the establishment, in the ideal. The intersexual or transgendered person who projects state ofVermont, oflegal same-sex domestic partnerships. a social gender-what Kessler calls"cultural genitals"-that conflicts with his or her physical genitals still may die for o ONE COULD HAVE FORESEEN SUCH the transgression. Hence legal protection for people whose changes in 1993. And the idea that I played cultural and physical genitals do not match is needed dur­ N some role, however small, in reducing the ing the current transition to a more gender-diverse world. pressure---from the medical community aswell asfrom soci­ One easy step would be to eliminate the category of "gen­ ety at large---to flatten the diversity of human sexes into der" from official documents, such as driver's licenses and two diametrically opposed camps gives me pleasure. passports. Surely attributes both more visible (such asheight, Sometimes people suggest to me, with not a little hor­ build and eye color) and lessvisible (fingerprints and genet­ ror, that I am arguing for a pastel world in which androgy­ ic profiles) would be more expedient. ny reigns and men and women are boringly the same. In A more far-ranging agenda is presented in the Interna­ my vision, however, strong colors coexist with pastels. There tional Bill ofGender Rights, adopted in 1995 at the fourth are and will continue to be highly masculine people out annual International Conference on Transgender Law and there; it's just that some ofthem are women. And some of Employment Policy in Houston, Texas. It lists ten "gender the most feminine people I know happen to be men . • rights," including the right to define one's own gender, the ANNE FAUSTO-STERLING is a professor of biology and women's right to change one's physical gender if one so chooses and studiesat Brown University. Portions of thisarticle were adaptedfrom the right to marry whomever one wishes. The legal bases her recent book SEXING THE BODY (Basic Books, 2000).

July/August 2000 • THE SCIENCES 23