Intersexuality: A Plea for Honesty and Emotional Support
The physicians and nursing staff in the delivery room grew suddenly silent, almost grim. "Is there something wrong with my baby?" queried the exhausted new mother. A nurse whisked the infant off to the warming unit, while another explained that the baby needed to be checked out and would be returned as soon as possible. Meanwhile, a pediatrician, an endocrinologist, and a plastic surgeon were summoned with all possible haste to the hospital. The baby was not sick; it had been born with "ambiguous genitals." They might be described as a split scrotum, in the shape of a Parker House roll, with a tiny tiny penis peeking out from between the sections, and the urethra behind the penis, rather than at the tip. Or were they partially fused outer labia, with a clitoris enlarged to 10 times the usual size? The experts would work around the clock to make a decision as quickly as possible, and would then use surgery and hormones to make the baby look as "normal" as possible, removing "discordant" structures, including all but a tiny bit of the clitoris.
"It seems that your parents weren't sure for a time whether you were a girl or a boy," the gynecologist explained, as she handed over three fuzzy photocopied pages. The young woman had asked the doctor's help to obtain records of a mysterious hospitalization which occurred while she was yet a tiny infant, too young to recollect. She was desperate to obtain the complete records, to determine who had surgically removed her clitoris, and why. "Diagnosis: true hermaphrodite. Operation: clitoridectomy."
"We advise you to fake an injury and leave quietly," Olympic officials told Spanish hurdler Maria Patino. They had just received the result of a laboratory test that indicated that her cells had only a single X chromosome. Patino was disqualified. Statistics are hard to come by, but it seems that as many as one in 500 women competitors are disqualified by the sex test. None are men masquerading as women; they are people whose chromosomes defy the notion that male and female is as simple as black and white. Patino is a woman with "male" chromosomes; the medical label for her condition is androgen insensitivity syndrome.
Each of these scenarios illustrates the traumatic repercussions when intersexuality is brought to light in a culture which insists on believing that sex anatomy is a dichotomy, with male and female conceived of as so different as to be nearly different species. However, developmental embryology, as well as the existence of intersexuals, proves this to be a cultural construction. Genitals may be intermediate in form between the male and the female pattern. Some have female genitals with internal testes, or fairly male genitals with internal ovaries and uterus. About one in 400 men have two x chromosomes. At least one in a few thousand people are born with a body which violates the dualism of "male" and "female" strongly enough to place them at serious risk of parental rejection, stigmatization, often harmful medical interventions, and the emotional pain of secrecy, shame, and isolation.
In modern Western culture, the events of an intersexual's birth are hidden in shame and half-truths. Parents most often will not reveal their ordeal to anyone, including the child as s/he comes of age. The child is left physically damaged, and in an emotional limbo without access to information about what has happened to them. The burden of pain and shame is so great that virtually all intersexuals stay deep in the closet throughout their adult lives.
Current medical thinking treats the birth of an intersexual infant as a "social emergency" that must be resolved by assigning a sex and erasing any ambiguity as soon as possible. Medical texts advise the clinician to systematically pursue even a slight doubt about the sex of a newborn, but not to reveal such doubts to the anxious parents. Intersexual children's bodies combine male and female characteristics, and the decision to register the child's birth as a girl or as a boy is made by the physician, largely on the basis of the prognosis for genital plastic surgery. One surgeon, asked why intersex children are usually assigned female, explained, "It's easier to dig a hole than to build a pole." That is, surgeons find it easier to assign the child as a girl, construct an opening, and remove enlarged clitoral tissue, than to assign the child as a boy and try to enlarge and reshape the small penis. Surgeons and endocrinologists have not considered leaving the child's body intact and providing emotional support for being different to be an option.
Although physicians understand that they will actually impose, rather than determine, a sex, they tell parents that tests will reveal the child's true sex, in a day or two at most, and assure them that surgery will let their child grow up normal, and heterosexual. They are careful to avoid words like "hermaphroditism" or "intersexuality," and speak only of "improperly formed gonads," never of ovaries or testes. When, years later, the intersexual adult tries to determine what was done to him or her, and why, s/he will encounter these tabooed words many times in medical literature and sprinkled liberally throughout their medical records.
This medical treatment amounts to a policy of denial. Secrecy and taboo disrupt emotional development and stress the whole family. Many adult intersexuals have had to discover their history and status independently without emotional support of any kind. As a result, more than a few are estranged from their families. Surgery destroys genital anatomy and many intersexual children are subjected to repeated surgeries, over a dozen in some cases. Genital surgery disrupts the infant's erotic development and interferes with adult sexual function. Surgery performed on infants precludes choice; the actual goal of early surgeries may be the parents' emotional comfort rather than the child's ultimate well-being. Even at clinics which have specialized in treating intersexual children for decades, there is generally no program of professional counseling. Some physicians privately concede that they perform any needed counseling themselves during annual evaluations. From the point of view of the intersexual adolescent such a physician may be seen as allied with the parents against any trace of sexual difference or criticism of medical treatment, rather than as a trusted counselor and advisor.
As a growing number of adult intersexuals have come forth to speak about their experiences, it is apparent that surgery has generally been more harmful than helpful. The "conspiracy of silence", the policy of pretending that intersexuality has been medically eliminated, in fact simply exacerbates the predicament of the intersexual adolescent or young adult who knows that s/he is different, whose genitals have often been mutilated by "normalizing" plastic surgery, whose sexual functioning has been severely impaired, and whose treatment history has made clear that acknowledgment or discussion of intersexuality violates a cultural and a family taboo.
A few are now beginning to organize to oppose this silence. The San Francisco-based peer support group Intersex Society of North America strongly recommends counseling for the entire family of a newborn intersexual and for the intersexual child as soon as s/he is old enough. They oppose "normalizing" cosmetic surgery performed on infants and children who cannot provide informed consent. ISNA believes that, with appropriate emotional support, intersexual infants and children would fare better without genital plastic surgery. Like ISNA, Britain's Androgen Insensitivity Support Group advocates the provision of competent psychological support for inter-sexuals and their families and decries physicians who believe that counseling can be accomplished in a few minutes of explanation by a pediatric endocrinologist or urologist. The California mother who founded the Ambiguous Genitalia Support Network, a parents' group, says she made a conscious decision to avoid euphemism in naming her group. "If parents can't deal with the words "ambiguous genitalia," how are they going to be able to accept their children?"
Children born intersexual face psychological difficulties no matter what treatment choice is made, and sexually sophisticated, ongoing counseling for both family and child must become the central component of the treatment process. Parents and medical staff must be reeducated about sexuality. Intersexual children need early access to a peer support group where they can find role models and discuss medical and lifestyle options.
Bo Laurent, a doctoral student at the Institute for Advanced Study of Human Sexuality in San Francisco, is a consultant to the Intersex Society of North America.
Last Updated: 15 March 2016
Reviewed by Harry Croft, MD