Intersexuality and Gender Identity: A Changing Landscape, Study notes of Medicine

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ESSAYS & COMMENT

De LACrace Volcano, Jack Unveiled, 1994

18 THE SCIENCES • JJllyIAJI.~Jlst 2000

THE FIVE SEXES, REVISITED

The emerging recognition that people come in bewildering

sexual varieties is testing medical values and social norms

BY ANNE FAUSTO-STERLING

MUCH HAS CHANGED SINCE 1993.

Intersexuals have materialized

. before our very eyes.

A

S CHERYL CHASE STEPPED TO THE FRONT of the packed meeting room in the Sher- aton Boston Hotel, nervous coughs made the tension audible. Chase, an activist for intersexual rights, had been invited to address the May 2000 meeting of the Lawson Wilkins Pediatric Endocrine Soci- ety (LWPES), the largest organization in the United States for specialists in children's hormones. Her talk would be the grand finale to a four-hour symposium on the treat- ment of genital ambiguity in newborns, infants born with a mixture of both male and female anatomy, or genitals that appear to differ from their chromosomal sex. The topic was hardly a novel one to the assembled physicians. Yet Chase's appearance before the group was remarkable. Three and a half years earlier, the American Academy of Pediatrics had refused her request for a chance to present the patients' viewpoint on the treatment of genital ambiguity, dismissing Chase and her supporters as "zealots." About two dozen intersex people had responded by throwing up a pick- et line. The Intersex Society of North America (ISNA) even issued a press release: "Hermaphrodites Target Kiddie Docs." It had done my 1960s street-activist heart good. In the short run, I said to Chase at the time, the picketing would make people angry. But eventually, I assured her, the doors then closed would open. Now, as Chase began to address the physicians at their own convention, that prediction was coming true. Her talk, titled "Sexual Ambiguity: The Patient-Centered Approach," was a measured critique of the near-universal practice of performing immediate, "cor- rective" surgery on thousands of infants born each year with ambiguous genitalia. Chase herself lives with the conse- quences of such surgery. Yet her audience, the very endocrinologists and surgeons Chase was accusing of react- ing with "surgery and shame," received her with respect. Even more remarkably, many of the speakers who preceded her at the session had already spoken of the need to scrap current practices in favor of treatments more centered on psychological counseling. What led to such a dramatic reversal of fortune? Cer- tainly, Chase's talk at the LWPES symposium was a vindi- cation of her persistence in seeking attention for her cause. But her invitation to speak was also a watershed in the evolv- ing discussion about how to treat children with ambigu-

ous genitalia. And that discussion, in turn, is the tip of a biocultural iceberg-the gender iceberg-that continues to rock both medicine and our culture at large. Chase made her first national appearance in 1993, in these very pages, announcing the formation of ISNA in a letter responding to an essay I had written for The Sciences, titled "The Five Sexes" [Marchi April 1993]. In that article I argued that the two-sex system embedded in our society is not ade- quate to encompass the full spectrum of human sexuality. In its place, I suggested a five-sex system. In addition to males and females, I included "herms" (named after true hermaphrodites, people born with both a testis and an ovary); "rnerms" (male pseu- dohermaphrodites, who are born with testes and some aspect of female genitalia); and "ferms" (female pseudohermaphrodites, who have ovaries combined with some aspect of male genitalia). I had intended to be provocative, but I had also written with tongue firmly in cheek. So I was surprised by the extent of the controversy the article unleashed. Right-wing Chris- tians were outraged, and connected my idea of five sexes with the United Nations-sponsored Fourth World Con- ference on Women, held in Beijing in September 1995. At the same time, the article delighted others who felt con- strained by the current sex and gender system. Clearly, I had struck a nerve. The fact that so many peo- ple could get riled up by my proposal to revamp our sex and gender system suggested that change-as well as resistance to it-might be in the offing. Indeed, a lot has changed since 1993, and I like to think that my article was an important stimulus. As if from nowhere, intersexuals are materializing before our very eyes. Like Chase, many have become polit- ical organizers, who lobby physiciansand politicians to change current treatment practices. But more generally, though per- haps no less provocatively, the boundaries separating mas- culine and feminine seem harder than ever to define. Some find the changes under way deeply disturbing. Oth- ers find them liberating.

W

HO IS AN INTERSEXUAL-AND HOW MANY intersexuals are there? The concept of intersexuality is rooted in the very ideas of male and female. In the idealized, Platonic, biological world, human beings are divided into two kinds: a perfect-

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male named David Reimer-eventually rejected his female assignment. Even without a functioning penis and testes (which had been removed as part of the reassignment) John/Joan sought masculinizing medication, and married a woman with children (whom he adopted). Since the full conclusion to the John/Joan story came to light, other individuals who were reassigned as males or females shortly after birth but who later rejected their early assignments have come forward. So, too, have casesin which the reassignment has worked-at least into the subject's mid- twenties. But even then the aftermath of the surgery can be problematic. Genital surgery often leaves scars that reduce

sexual sensitivity. Chase herself had a complete clitoridec- tomy, a procedure that is lessfrequently performed on inter- sexuals today. But the newer surgeries, which reduce the size of the clitoral shaft, still greatly reduce sensitivity.

T

HE REVELATION OF CASES OF FAILED REASSIGN- ments and the emergence of intersex activism have led an increasing number of pediatric endocrinologists, urologists and psychologists to reexamine the wisdom of early genital surgery. For example, in a talk that preceded Chase's at the LWPES meeting, the medical ethicist Laurence B. McCullough of the Center for Med- ical Ethics and Health Policy at Baylor College of Medi- cine in Houston, Texas, introduced an ethical framework for the treatment of children with ambiguous genitalia. Because sex phenotype (the manifestation of genetically and embryologically determined sexual characteristics) and gen- der presentation (the sex role projected by the individual in society) are highly variable, McCullough argues, the vari- ous forms of intersexuality should be defined as normal. All of them fall within the statistically expected variability of

sex and gender. Furthermore, though certain disease states may accompany some forms of intersexuality, and may require medical intervention, intersexual conditions are not themselves diseases. McCullough also contends that in the process of assign- ing gender, physicians should minimize what he calls irre- versible assignments: taking steps such as the surgical removal or modification of gonads or genitalia that the patient may one day want to have reversed. Finally, McCullough urges physicians to abandon their practice of treating the birth of a child with genital ambiguity as a medical or social emergency. Instead, they should take the

[anine Antoni, Mom and Dad, 1994

time to perform a thorough medical workup and should disclose everything to the parents, including the uncer- tainties about the final outcome. The treatment mantra, in other words, should be therapy, not surgery. I believe a new treatment protocol for intersex infants, similar to the one outlined by McCullough, is close at hand. Treatment should combine some basic medical and ethi- cal principles with a practical but less drastic approach to the birth of a mixed-sex child. As a first step, surgery on infants should be performed only to save the child's life or to substantially improve the child's physical well-being. Physicians may assign a sex-male or female-to an inter- sex infant on the basis of the probability that the child's particular condition will lead to the formation of a partic- ular gender identity. At the same time, though, practitioners ought to be humble enough to recognize that as the child grows, he or she may reject the assignment-and they should be wise enough to listen to what the child has to say. Most important, parents should have access to the full range of information and options available to them. Sex assignments made shortly after birth are only the

JI/I)'!AI/<~I/st 2000 • THE SCIENCES 21

A PERSON WHO PROJECTS

a social gender at odds

with his or her genitals

may die for the transgression.

beginning of a long journey. Consider, for instance, the life of Max Beck: Born intersexual, Max was surgically assigned as a female and consistently raised as such. Had her medical team followed her into her early twenties, they would have deemed her assignment a success because she was married to a man. (It should be noted that success in gender assignment has traditionally been defined as living in that gender as a heterosexual.) Within a few years, how- ever, Beck had come out as a butch lesbian; now in her mid-thirties, Beck has become a man and married his les- bian partner, who (through the miracles of modern repro- ductive technology) recently gave birth to a girl. Transsexuals, people who have an emotional gender at odds with their physical sex, once described themselves in terms of dimorphic absolutes-males trapped in female bod- ies, or vice versa. As such, they sought psychological reliefthrough surgery. Although many still do, some so-called transgendered peo- ple today are content to inhabit a more ambiguous zone. A male-to- female transsexual, for instance, may come out as a lesbian. Jane, born a physiological male, is now in her late thirties and living with her wife, whom she married when her name was still John. Jane takes hormones to feminize herself, but they have not yet interfered with her ability to engage in intercourse as a man. In her mind Jane has a lesbian relationship with her wife, though she views their intimate moments as a cross between lesbian and heterosexual sex. It might seem natural to regard intersexuals and trans- gendered people as living midway between the poles of male and female. But male and female, masculine and fem- inine, cannot be parsed as some kind of continuum. Rather, sex and gender are best conceptualized as points in a mul- tidimensional space. For some time, experts on gender development have distinguished between sex at the genet- ic level and at the cellular level (sex-specific gene expres- sion, X and Y chromosomes); at the hormonal level (in the fetus, during childhood and after puberty); and at the anatomical level (genitals and secondary sexual character- istics). Gender identity presumably emerges from all of those corporeal aspects via some poorly understood inter- action with environment and experience. What has become increasingly clear is that one can find levels of mas- culinity and femininity in almost every possible permuta- tion. A chromosomal, hormonal and genital male (or female) may emerge with a female (or male) gender iden- tity. Or a chromosomal female with male fetal hormones and masculinized genitalia-but with female pubertal hor- mones-may develop a female gender identity.

T

HE MEDICAL AND SCIENTIFIC COMMUNITIES have yet to adopt a language that is capable of describing such diversity. In her book Her- maphrodites and the Medical Invention of Sex, the historian and medical ethicist Alice Domurat Dreger of Michigan State University in East Lansing documents the emergence of current medical systems for classifying gender ambiguity.

The current usage remains rooted in the Victorian approach to sex. The logical structure of the commonly used terms "true hermaphrodite," "male pseudohermaphrodite" and "female pseudohermaphrodite" indicates that only the so- called true hermaphrodite is a genuine mix of male and female. The others, no matter how confusing their body parts, are really hidden males or females. Because true her- maphrodites are rare-possibly only one in 100,OOO-such a classification system supports the idea that human beings are an absolutely dimorphic species. At the dawn of the twenty-first century, when the vari- ability of gender seems so visible, such a position is hard to maintain. And here, too, the old medical consensus hasbegun to crumble. Last fall the pediatric urologist Ian A. Aaronson of the Medical University of South Carolina in Charleston organized the North American Task Force on Intersexuality (NATFI) to review the clinical responses to gen- ital ambiguity in infants. Key med- ical associations, such as the Amer- ican Academy of Pediatrics, have endorsed NA TFI. Specialists in surgery, endocrinology, psycholo- gy, ethics, psychiatry, genetics and public health, as well as intersex patient-advocate groups, have joined its ranks. One of the goals of NA TFI is to establish a new sex nomenclature. One proposal under consideration replaces the current system with emotionally neutral terminology that emphasizes developmental processes rather than pre- conceived gender categories. For example, Type I inter- sexes develop out of anomalous virilizing influences; Type II result from some interruption of virilization; and in Type III inters exes the gonads themselves may not have devel- oped in the expected fashion.

W

HAT IS CLEAR IS THAT SINCE 1993, MOD-

ern society has moved beyond five sex- es to a recognition that gender variation is normal and, for some people, an arena for playful explo- ration. Discussing my "five sexes" proposal in her book Lessonsfrom the Intersexed, the psychologist Suzanne J. Kessler of the State University of New York at Purchase drives this point home with great effect:

The limitation with Fausto-Sterling's proposal is that ... [it] still gives genitals ... primary signifying status and ignores the fact that in the everyday world gender attributions are made without access to genital inspection .... What has primacy in everyday life is the gender that is performed, regardless of the flesh's con- figuration under the clothes.

I now agree with Kessler's assessment. It would be bet- ter for intersexuals and their supporters to turn everyone's focus away from genitals. Instead, asshe suggests, one should acknowledge that people come in an even wider assort- ment of sexual identities and characteristics than mere gen- itals can distinguish. Some women may have "large cli- torises or fused labia," whereas some men may have "small penises or misshapen scrota," as Kessler puts it, "pheno- types with no particular clinical or identity meaning."

22 THE SCIENCES· Jllly/Allgllst 2000