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Sex, Intersex, and the Making of "Normal"

Physicians have had a long, painful relationship with those born with intersex conditions, or atypical sex development.  Two recent controversies have highlighted this uncomfortable history.  They have focused unusual attention on matters usually concealed, and they give us an opportunity to examine our prejudices toward heterosexuality and “normal” bodies.

The first storm erupted when it was exposed that a New York doctor was recommending dexamethasone, a steroid that the FDA has not approved for this use, to pregnant women at risk of bearing babies with congenital adrenal hyperplasia (CAH).  CAH girls are often born with a large clitoris, and prenatal dex, as it is called, can mitigate this condition, precluding the “need” (more on this later) for surgery to reduce it.  It has also been suggested that dexamethasone could alter fetal exposure to an excess of androgens.  Why is this important? Some speculate that it might reduce a girl’s inclination toward lesbianism or bisexuality.

The second controversy also involves sexual anatomy, specifically a physician’s medical management of clitoral reduction.  The surgery itself is disturbing.  Making matters worse, the doctor in question used a vibrator-like tool to assess the extent of nerve damage on girls and young women on whom he had performed the surgery, crossing the line, even if unintentionally, into sexually inappropriate contact.

It is useful to view these recent controversies over clitoral size and sexuality in the broader historical context of attitudes toward intersex people, noticing particularly the unfortunate fear of homosexuality.  I argue in my book, Bodies in Doubt: An American History of Intersex, that physicians are and have long been influenced by our larger social anxieties, especially concerning marriage and sexual desire.  Medical management is fundamentally a cultural, not simply a scientific, endeavor.

In early America, for example, physicians feared that a woman with a large clitoris would act like a man, that she might be tempted to initiate forbidden sexual relationships with other women.  Medical writers argued that such women could give sexual pleasure to other women by means of their unusual endowment.  The author of an early popular midwifery manual declared in distaste, “some lewd women have endeavoured to use it as men do theirs.”

In the nineteenth century, when the idea of “sexual inversion” emerged as a scientific explanation of homosexuality, “hermaphrodites” (as they were then called) were considered potential homosexuals or “inverts.”  If some people’s bodies were both male and female, then would such individuals couple with both sexes, or the “wrong” sex?  Physicians as well as lay people have long preferred that one’s genitalia matched one’s apparent gender and, in turn, that led to conventional opposite sex desire.  When ambiguity appeared, many believed that surgery was warranted.  They sought to “correct” atypical genitalia, not necessarily for the health, comfort, or pleasure of the patient, but to preclude the undesirable potential for homosexual sex.  Even life-long celibacy was preferable to homosexuality.

Dealing with intersex adults was complicated because of their established gender identity and sexual desire.  Such patients were not always amenable to doctors’ suggestions to alter their anatomy or their intimate habits.  Addressing “the problem” of intersex was simpler, perhaps, among infants or young children, and in the 1950s doctors increasingly focused their attention on childhood intersex.  John Money, a psychologist at Johns Hopkins, and his colleagues, Joan and John Hampson, advanced a rationale for choosing gender and performing surgery on infants born with ambiguous genitalia.  Their approach came to define intersex management for the next fifty years and, despite some resistance, it lingers.  Intersex involves chromosomes and hormones in addition to anatomy, but following Money, external genital morphology became the single most important criterion in the evaluation and treatment of people with intersex conditions.  Money and his followers firmly believed that having conventional-looking genitals guaranteed healthy psychological development.

Until very recently, doctors surgically sculpted ambiguous genitals to match the gender that an infant was assigned at birth (assignments would be made according to a variety of factors, including hormone levels, chromosomes, and genital shape).  On the face of it, it may seem like a sensible practice to ensure coherence between one’s gender and one’s anatomy.  Unfortunately, little evidence backed Money’s theories, and many intersex people have spoken out about the harm done to their bodies (and their psyches) through these radical interventionist surgeries.  Often such procedures were performed to make parents, as opposed to children, feel better.  Some girls born without vaginas or shortened ones have suffered surgical reconstruction to build penetrable vaginas, serviceable for conventional sexual activity.  The procedure requires daily dilation to keep the newly built vagina open.  This is a painful, scarring process.  Why does a small child need such bodily alteration?  Is the “cure” worse than the “affliction”?  Similarly, surgeries to repair hypospadias (when the urinary opening is underneath the penis instead of at the tip) are not always medically necessary; they satisfy social not strictly medical imperatives. Surgeries to reduce an enlarged clitoris are also cosmetic, not medical (though in some cases surgery is medically warranted to repair confluence between the vagina and urethra).  Increasingly, tolerant voices argue that these surgeries should be delayed until adulthood, performed then only with the consent of the person whose body is to be cut.

Must bodies and sexual desire be “normalized”?  These recent medical interventions—prenatal dex and clitoral reduction surgery—are based on the premise that intersex is a condition that needs to be corrected, even at the expense of a person’s basic well-being.  Such tampering with hormones or radically altering anatomy can be dangerous to individual health.  Prenatal dex, for example, has been linked to cognitive and memory problems, and clitoral reduction surgery reduces sexual sensation.  Both treatments have been contrived solely to conform people to our narrow ideals of “normal.”  Though many doctors and hospitals throughout the country have heeded the cautionary words of intersex activists about the harms of medical interventions, particularly on infant patients, efforts to make the genitals look “normal” and to prevent homosexuality still exist.  We continue to be profoundly unsettled by any body that falls outside the parameters of “normal,” particularly in terms of sex anatomy, and, despite our growing openness to same-sex desire, we remain deeply troubled by that potential as well.  It is time to be mindful that medical views are embedded in a particular context.  Once we become explicit about our biases, perhaps we can work to change them.