Modern management manuals devote a great deal of thought to how to get parents to go along with suggested treatments. Clearly it is a matter of great delicacy. And so it must be, because parents can be intractable. Sometimes they assert their own views about their child’s sex and about the degree of surgical alteration they will permit. In the 1990s, Helena Harmon-Smith’s son was born with both an ovary and a testis, and doctors wanted to turn him into a girl. Harmon-Smith refused. ‘‘He had parts I didn’t have,’’ she wrote, and ‘‘he is a beautiful child.’’53 Harmon-Smith did not see the need for surgical intervention, but against her express instructions, a surgeon removed her son’s gonads. In response she has become an activist, founding a support group for parents called Hermaphrodite Education and Listening Post (HELP).
Recently Harmon-Smith published instructions, in the form of Ten Commandments, for physicians who encounter the birth of an intersexual child. The Commandments include: Thou shalt ‘‘not make drastic decisions in the first year’’; thou shalt ‘‘not isolate the family from information or support’’; thou shalt ‘‘not isolate the patient in an intensive care unit’’ but shalt ‘‘allow the patient to stay on a regular ward.’’54 Kessler suggests a new script to be used in announcing the birth of an XX child affected by CAH: Congratulations. ‘‘You have a beautiful baby girl. The size of her clitoris and her fused labia provided us with a clue to an underlying medical problem that we might need to treat. Although her clitoris is on the large size it is definitely a clitoris. . . . The important thing about a clitoris is how it functions, not how it looks. She’s lucky. Her sexual partners will find it easy to locate her clitoris.’’55
Parental resistance is not new. In the 1930s Hugh Hampton Young described two cases in which parents refused to let doctors perform surgery on their intersexual children. Gussie, aged fifteen, had been raised as a girl. After admission to a hospital (the reason for hospitalization is unclear), Young learned (from performing a surgical examination under general anesthesia) that Gussie had a testis on one side, an enlarged clitoris/penis, a vagina, and an underdeveloped fallopian tube and uterus but no ovary. While the child was on the operating table, they decided to bring the testis down into the scrotum/enlarged labium. They then told the mother that the child was not a girl, but a boy, advised her to change h/her name to Gus and to have h/her return for further ‘‘normalizing’’ surgery.
The mother’s response was outraged and swift: ‘‘She became greatly incensed, and asserted that her child was a girl, that she didn’t want a boy, and that she would continue to bring up the patient as a girl.’’56 Parental resistance put Young on the spot. He had already created a new body with an external testicle. Ought he to accommodate the mother’s insistence that Gus remain Gussie? And if so, how? Should he offer to remove the penis and testicle, even though that would leave Gussie without any functioning gonad? Should he attempt to manipulate h/her hormonal productions? These questions remained unanswered; the child never returned to the hospital. In a similar case the parents refused to allow even exploratory surgery and, following an initial external examination of the child, never returned. Young was left to ponder the possibilities that lay beyond his control. ‘‘Should,’’ he wondered, ‘‘this patient be allowed to grow up as a male. . . even if [surgery] shows the gonads to be female?’’57
Young also discussed several cases of adult hermaphrodites who refused not only treatment but the chance to getafull ‘‘scientific’’ explanation oftheir ‘‘condition.’’ George S., for example, raised as a girl, ran away from home at age fourteen, dressing and living as a man. Later s/he married as a man, but found it too hard to support a wife. So s/he emigrated from England to America, dressed again as a woman, and became some man’s ‘‘mistress,’’ although s/he also continued to be the male partner in intercourse with women. H/her fully developed breasts caused embarrassment and s/he asked Young to remove them. When Young refused to do so without operating to discover h/her ‘‘true’’ sex, the patient vanished. Another of Young’s patients, Francies Benton, made h/her living as an exhibit in a circus freak show. The advertisement read ‘‘male and female in one. One body—two people’’ (see figure 4.1). Benton had no interest in changing h/her lifestyle, but sought Young’s expertise to satisfy h/her curiosity and to provide medical testimony verifying the truth ofh/her advertising claims.58
Dogma has it that without medical care, especially early surgical intervention, hermaphrodites are doomed to a life of misery. Yet there are few empirical investigations to back up this claim.59 In fact, the studies gathered to build a case for medical treatment often do just the opposite. Francies Benton, for example, ‘‘had not worried over his condition, did not wish to be changed, and was enjoying life.’’60 Claus Overzier, a physician at the Medical Clinic at the University of Mainz, Germany, reports that in the majority of cases the psychological behavior of patients agreed only with their sex of rearing and not with their body type. And in many of these cases, body type was not ‘‘smoothed over’’ to conform to sex of rearing. In only fifteen percent of his ninety-four cases were patients discontented with their legal sex; and in each of these it was a ‘‘female’’ who wished to become a ‘‘male’’. Even Dewhurst and Gordon, who are adamant about the importance of very early treatment, acknowledged great success in ‘‘changing the sex’’ of older patients. They reported on twenty cases of children reclassified into a different sex after the
144 GENITAL ABNORMALITIES AND HERMAPHRODITISM
he did not have intercourse as a male again until ten months later. He had entered the show business and exhibited himself as an hermaphrodite in a side-show. Figure 104 depicts the patient in female garb about this time. Figure 105 contains photographic copies of the advertising matter he distributed. At these exhibitions he said both men and women would be admitted into the tent. He would tell them the story of his life, ask the women to move over to the right side of the tent, the men to the left, and then draw a curtain between them so they could not see each other, hut plainly see him as he disrobed. He said the exhibitions were thronged with people of both sexes, and were very profitable. About a month ago a man and his wife, also in the show business, were in his hotel room, and quizzed him about
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Fig. 104. Case 15. Photographs of patient as a female, showing marked breast development. BUI 24902. |
his double life. Doubting his statements they dared him to prove his prowess both as a male and female by having intercourse with each of them. He agreed, and the three stripped. He then went to bed with the woman, “had a splendid erection, carried out his part as a male admirably, had a very exciting ejaculation after a few minutes,’’ and thinks the woman also had an-orgasm. About a half-hour later he went to bed with the man and took the female r61e in a coitus which was nothing like as pleasurable to the patient as the one with the woman, but was apparently entirely satisfactory to the male partner. During this performance the young woman was an interested spectator.
The three occasions described above are the only times the patient had coitus as a female. He asserted that since menstruation came on he felt
figure 4. і: Francies Benton, a ‘‘practicing hermaphrodite,’’ and his/her advertising copy. (Reprinted with permission from Young i937,pp. 144—4^.)
supposedly critical period of eighteen months. They deemed all the reclassifications ‘‘successful,’’ wondering whether sex ‘‘re-registration can be recommended more readily than has been suggested so far.’’61 Rather than emphasize this positive finding, however, they stressed the practical difficulties involved with late sex changes.
Sometimes patients refuse treatment despite strikingly visible consequences, such as beard growth in females. Randolf et al. discuss one girl who ‘‘has adamantly refused further surgery in spite of the disfiguring prominence of her clitoris,’’62 while Van der Kamp et al. report that nine out of ten adult women who had undergone vaginal reconstruction felt that such operations should not be done until early adolescence.63 Finally, Bailez et al. report on an individual’s refusal of a fourth operation needed to achieve a vaginal opening suitable for intercourse.64
Intersexual children who grow up with genitalia that seem to contradict their assigned gender identities are not doomed to lives of misery. Laurent and I turned up more than eighty examples (published since 19^0) of adolescents and adults who grew up with visibly anomalous genitalia (see tables 4.3 and 4.4). In only one case was an individual deemed potentially psychotic, but that was connected to a psychotic parent and not to sexual ambiguity. The
case summaries make clear that children adjust to the presence of anomalous genitalia and manage to develop into functioning adults, many of whom marry and have active and apparently satisfying sex lives. Striking instances include men with small penises who have active marital sex lives without penetrative intercourse.65 Even proponents of early intervention recognize that adjustment to unusual genitalia is possible. Hampson and Hampson, in presenting data on more than 250 postadolescent hermaphrodites, wrote: ‘‘The surprise is that so many ambiguous-looking patients were able, appearance notwithstanding, to grow up and achieve a rating of psychologically healthy, or perhaps only mildly non-healthy.’’66
The clinical literature is highly anecdotal. There exist no consistent or arguably scientific standards for evaluating the health and psychological wellbeing of the patients in question. But despite the lack of quantitative data, our survey reveals a great deal. Although they grew up with malformations such as small phalluses, sexual precocity, pubertal breast development, and periodic hematuria (blood in the urine; or in these cases menstrual blood), the majority of intersexual children raised as males assumed lifestyles characteristic of heterosexually active adult males. Fifty-five intersexual children grew up as females. Despite genital anomalies that included the presence of a penis, an enlarged clitoris, bifid scrota, and/or virilizing puberty, most assumed the roles and activities of heterosexually active females.
Two interesting differences appear between the group raised as males (RAM) and the one raised as females (RAF). First, only a minority of the RAF’s chose to feminize their masculinized genitalia during adolescence or adulthood, while well over half of the RAM’s elected surgery to masculinize their feminized bodies. Second, 16 percent of the RAF’s decided as adolescents or adults to change their identities from female to male. Individuals who initiated such changes adjusted successfully—and often with expressed delight—to their new identities. In contrast, only 6 percent of the RAM’s wished to change from male to female. In other words, males appear to be more anxious to change their feminized bodies than females are to change their masculinized ones. In a culture that prizes masculinity, this is hardly surprising. Again we see that it is possible to visualize the medical and biological only by peering through a cultural screen.67