Although influential researchers such as John Money and John and Joan Hampson believed that gender identity formation during early childhood is extraordinarily malleable, they also thought that gender ambiguity later in life was pathological. How, then, was an intersex infant to make the transition from the open-ended possibilities present at birth to the fixed gender identity the medical establishment deemed necessary for psychological health? Because a child’s psychological schema developed in concert with his or her body image, Money and the Hampsons insisted, early genital surgery was imperative. A child’s body parts had to match his or her assigned sex. While such anatomical clarity was important for the young child,74 Money, the Hamp — sons, and those who followed their lead argued, it was even more important for the child’s parents. As Peter Pan might have said, ‘‘they had to believe’’ in their child’s gender identity for that identity to become real. Hampson and Hampson write: ‘‘In working with hermaphroditic children and their parents, it has become clear that the establishment of a child’s psychosexual orientation begins not so much with the child as with his parents.’’75
Ironically, in their extensive discussions about what not to tell parents, medical practitioners reveal the logical bind they face when they try to explain to patients and parents that the gender they have assigned—and often performed surgery to create—is not arbitrarily chosen, rather, it is natural and somehow inherent to the patient’s body all along. Thus developed a tradition of gender doublespeak. Medical manuals and original research articles almost unanimously recommend that parents and children not receive a full explanation of an infant’s sexual status. Instead of saying that an infant is a mixture of male and female, physicians are to allege that the intersex child is clearly either male or female, but that embryonic development has been incomplete. One physician writes: ‘‘every effort should be made to discourage the concept that the child is part male and part female. . . .This is often best handled by explaining that ‘the gonads were incompletely developed. . . and therefore required removal.’ All efforts should be made to discourage any feeling of sexual ambiguity.’’76
A recent medical publication cautions that in counseling parents of intersexual children, doctors must ‘‘prevent contradictory or confusing information from adding to the uncertainty of the parents. . . . If the external genitalia of the child are unclear, the parents are only informed that the cause will be investigated.’’77 This group of Dutch physicians and psychologists often treat androgen-insensitive (see table 3.1) children. AIS children have an X and an Y chromosome and active testes, but because their cells are insensitive to testosterone, they cannot develop masculine secondary sex characteristics and often respond at puberty to their own testicular estrogen by developing a voluptuous female figure. Such children are generally raised as girls, both because of their feminine body structure and because past experience has shown that AIS children usually develop a female gender identity. Often the AIS child’s testes are removed but, caution the Dutch researchers, ‘‘we speak only about gonads, not testicles. If the gonad contains ovarian and testicular tissue we say that the gonad is not entirely developed in a female direction.’’78
Other physicians are aware that they must reckon with their patients’ knowledge and curiosity. Because ‘‘sex chromatin testing may be done in high school biology courses and the media coverage of sexual medicine is increasingly detailed,’’ writes one group of researchers, ‘‘one dare not assume that an adolescent can be spared knowledge about his or her gonadal or chromosomal status.’’ But they also suggest that an XY intersex raised as a girl never be told that she once had testes that were removed, emphasizing that nuanced scientific understanding of anatomical sex is incompatible with a patient’s need for clear-cut gender identity. An intersex child assigned to become a girl, for instance, should understand any surgery she has undergone not as an operation that changed her into a girl, but as a procedure that removed parts that didn’t belong to her as a girl. ‘‘By convention the gonad is recorded as a testis,’’ these physicians write, ‘‘but in the patient’s own formulation it is best regarded as an imperfect organ. . . not suited to life as a female, and hence removed.’’79
Others believe that even this limited degree of openness is counterproductive. One surgeon suggests that ‘‘accurate patho-physiological explanations are not appropriate and medical honesty at any price is of no benefit to the patient. For instance, there is nothing to be gained by telling genetic males raised as females about the maleness of their chromosomes or gonads.’’80 In their suggestions for withholding information about patients’ bodies and their own decisions in shaping them, medical practitioners unintentionally reveal their anxieties that a full disclosure of the facts about intersex bodies would threaten individuals’—and by extension society’s—adherence to a strict male-female model. I do not suggest a conspiracy; rather, doctors’ own deep conviction that all people are either male or female renders them blind to such logical binds.
Being coy about the truth in what doctors consider the interest of psychological health, however, can be at odds with sound medical practice. Consider the controversy over the early removal of testes in AIS children. The reason generally given is that the testes can become cancerous. However, the cancer rates for testes of AIS patients don’t increase until after puberty. And although the androgen-insensitive body cannot respond to androgens made by the testes, it can and at puberty does respond to testicular estrogen production. Natural feminization may well be better than artificially induced feminization, especially with regard to the dangers of developing osteoporosis. So why don’t doctors delay removal of the testes until just after puberty? One reason is surely that doctors might then have to tell a truer story to the AIS patient, something they are extremely reluctant to do.81
Kessler describes just such a case. A child received surgery when s/he was too young to remember or fully understand the import of the changes in h/ her anatomy. When s/he reached puberty, doctors told her that she needed to take estrogen pills for some time to come, explaining that her ovaries hadn’t been normal ‘‘and had been removed.’’ Apparently wishing to convince h/her that her femininity was authentic despite her inability to have children, the doctor explained that her ‘‘uterus won’t develop but [she] could adopt children.’’ Another physician on the treatment team approved of his colleague’s explanation. ‘‘He’s stating the truth, and if you don’t state the truth. . . then you’re in trouble later.’’ Given that the girl never had a uterus or ovaries, however, this was, as Kessler points out, ‘‘a strange version of ‘the truth.’ ’’82 In recent years patients have had more than a little to say about such halftruths and outright lies, and I will consider their viewpoints in the next chapter. For now, I turn from the treatment protocols developed with an eye toward keeping intersexuality within the bounds of a two-sex gender system, to experimental studies conducted by physicians and psychologists on human intersexuals. In the long tradition established by Saint-Hilaire, such investigations use intersexuality to reflect on the ‘‘normal’’ development of masculinity and femininity.
The Uses of Intersexuality