Stop infant genital surgery. We protest the practices of genital mutilation in other cultures, but tolerate them at home.9 Some of my medical colleagues are apparently so scandalized by my thoughts on intersexuality that they refuse to discuss them with me.10 Perhaps they think that I am sacrificing the wellbeing of unfortunate children on the altar of gender politics. How could I possibly consider using a poor intersexual child as a battering ram to assault the fortress of gender inequality? From the point of view of caring medical practitioners, this critique makes some sense. In the midst of daily medical crises that require rapid and highly pragmatic solutions, it is hard to step back, survey the broad picture, and ask whether another response is possible. Nevertheless, one reason I am convinced that my proposal is neither unethical nor
implausible is that the medical ‘‘cure’’ for intersexuality frequently does more damage than good.
As we have seen, infant genital surgery is cosmetic surgery performed to achieve a social result—reshaping a sexually ambiguous body so that it conforms to our two-sex system. This social imperative is so strong that doctors have come to accept it as a medical imperative, despite strong evidence that early genital surgery doesn’t work: it causes extensive scarring, requires multiple surgeries, and often obliterates the possibility of orgasm. In many of the case reports of clitoral surgery, the only criteria for success are cosmetic, rather than later sexual function. Table 4.1 summarizes information from nine clinical reports on the results of reduction clitoroplasties (see figure 3.6) on eighty-eight patients.11 The inadequacy of the evaluations is glaringly obvious. Two of nine reports never state the criteria for success; four emphasize cosmetic criteria; only one considers psychological health or does long-term follow-up. Intersexual activists have increasingly revealed the complex and painful stories behind these anonymous numbers, challenging the medical establishment’s most cherished beliefs and practices regarding intersexual children.12
Cheryl Chase, the charismatic founder of the Intersex Society of North America (ISNA), has played a particularly important role in this battle. She has chosen to go public with her own story, reaching out to other intersexuals and to the medical profession. At age thirty-six, Chase operated a successful small business that sent her traveling all over the world.13 Were she not eager to share her past, there would be no way of knowing, by simply meeting her, about her medical history. Born with ovo-testes but internal and external genitalia that were female, the only external sign of her difference was an enlarged clitoris. Her parents raised her as a boy until she was eighteen months old. Then, at the advice of physicians, she underwent complete clitorectomy (see figure 3.3). Her parents changed her name, threw away all her boy’s clothes, destroyed all photos of Cheryl as a boy and raised her as girl.
When she was older, doctors operated again, this time to remove the testicular portion of her gonads. She was told that she had a hernia operation. Her medical records confirm her personal recollections that during the annual check-ups that followed, the doctor never spoke directly to her. Nor did her mother ever follow up on a psychiatric referral noted in the case records. Still, at age eighteen, Chase knew something had happened. She sought to learn the contents of her medical records. But a doctor who agreed to help changed her mind after reading the records and refused to tell Chase of their contents. Finally, at the age of twenty-three, she got another doctor to tell her that she
had been diagnosed as a true hermaphrodite and surgically “corrected’’ to be female.14
For fourteen years Chase buried this information somewhere in her subconscious. Then, while living abroad, she fell into a suicidal depression. She returned home, began therapy, and struggled to come to terms with her past. In her quest to find out whether she can ever hope to become orgasmic without having a clitoris, she has consulted concerned sex therapists and anatomists. The lack of help from intersex specialists has dismayed her. ‘‘When I began to search them out,’’ shewrites, ‘‘I expected to find some help. Ithought that these doctors would have excellent connections to therapists skilled in dealing with histories like mine. They have none, nor do they have any sympathy.’’15
Although Chase despairs of gaining full sexual function, she has dedicated her life to changing the practice of early genital surgery. She hopes that others may not be denied the possibility of the full range of sexual pleasure that she sees as a human birthright. In pursuing this goal, she does not advocate putting kids in the front line of a gender war. Rather, she suggests they grow up as either social males or females; then, as adolescents or adults, they can make up their own minds about surgery—with the full knowledge of the risks to continued sexual function. They may also reject their assigned gender identity, and if they do, they will not be missing critical parts of their anatomy because of premature surgery.
Chase has become a savvy political organizer. Although she started her battle single-handedly, her troops increase daily. ‘‘When I established ISNA in 1993, no such politicized groups existed. . . . Since ISNA has been on the scene, other groups with a more resistant stance vis-a-vis the medical establishment have begun to appear. . . .In 1996, another mother who had rejected medical pressure to assign her intersex infant as a female. . . formed the Hermaphroditic Education and Listening Post (Help).’’16 Although many of the newer groups are less explicitly political, some nevertheless appreciate ISNA’s more radical approach.17 And Chase continues to build coalitions among various organizations of intersexuals, academics, and practicing physicians and psychologists. Slowly, Chase and others have begun to change medical practice in the United States.18
Still, these activists face strong opposition. Chase was clitorectomized in the early 1960s. I have had physicians tell me that both the surgery she received and the lack of information offered her were typical then, but not now. While surgical styles have changed (with no evidence that they are any better),19 clitorectomy still does occur on occasion.20 So does the practice of lying to
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patients and withholding medical information even after they have reached the age of majority. Consider Angela Moreno’s more recent tale. In 1985, when she was twelve years old, her clitoris grew to a length of 1.5 inches. Having nothing to compare this to, she thought she was normal. But her mother noticed and with alarm hauled her off to a doctor who told her she had ovarian cancer and needed a hysterectomy. Her parents told her that no matter what, she would still be their little girl. When she awoke from surgery, however, her clitoris was gone. Not until she was twenty-three did she find out she was XY and had had testes, not ovaries. She never had cancer.21 Today Moreno has become an ISNA activist and credits ISNA with helping her heal psychologically from the damage done by lies and surgery. She dreams of teaching in a Montessori school and perhaps adopting a child. She writes: ‘‘If I had to label myself man or woman, I’d say, a different kind of woman. . . . I’m not a case of one sex or the other, nor am I some combination of the two. I was born uniquely hermaphroditic—and from the bottom of my heart, I wish I’d been allowed to stay that way.’’22
Outspoken adult patients have begun to protest the practice of lying to children about their intersexuality. While in the past only a few professional voices advocated a more literal version of truth-telling,23 new voices—those of the patients themselves—have recently begun to demand full disclosure. In 1994 a woman with AIS published her story anonymously in the British Journal of Medicine.24
She had never been told the full truth. The facts of her case had dribbled out—a slip of tongue by a nurse here, an inadvertent remark by a doctor there. And as a teenager she did something the treatment manuals rarely seem to bargain for. Smart and curious, she went to a medical library and did some detective work. What she discovered was not comforting. When she finally pieced together the full picture, she felt humiliated, sad, and betrayed. She experienced deep suicidal feelings. It took her years to resolve enough of the issues to feel better about herself. She advises physicians dealing with intersex children that full truth-telling combined with a frank discussion of ideas about gender identity is the best medical practice.
This woman’s story struck a chord with those who had had similar experiences. A woman who had been born without a vagina wrote a letter to the journal’s editor echoing the sentiments of the anonymously published piece:
neither I nor my parents were offered any psychological support. . . . Unless parents can talk openly with a professional counselor (not a doctor) and are given information—on what and when to tell their child, contacts with other sufferers, sources of counseling or psychotherapy. . . they will
become imprisoned by their own feelings. . . [failure to take such action] could be far more damaging than truth disclosure in a caring, supportive
• 2 5
environment.
Indeed, all the newly formed organizations of adult intersexuals26 say the same thing: ‘‘Tell us the whole story. Don’t insult our intelligence with lies. When speaking to children develop staged, age-appropriate information. But lying never works and it can destroy the relationship between patient and parents and patient and physician’’.27
In one sense it is hardly surprising that clitoral surgery continues today alongside unsubstantiated claims that it does not affect sexual function.28 The anatomy and physiology of the clitoris are still poorly understood.29 In the medical literature, this structure has gone through long periods—including the present—of underrepresentation. Current medical illustrations, for example, fail to portray the structure’s variability,30 or even its complete, complex structure.31 Indeed, in medical texts (with the exception of women’s self-help books), the clitoris was more completely represented and labeled at the turn of the last century than it is today. If doctors are unaware of genital variation and know little about clitoral function, how can they know whether the cosmetic appearance or functional physiology following surgery is ‘‘satisfactory’’?