John Money’s views on the need for surgical reconstruction for intersexual infants were to remain virtually unchallenged for decades. Though the goal of such surgery was ostensibly to maximize health and well-being, when intersexual people themselves began to speak out about the effects of these surgeries on their physical and emotional well-being, their testimony directly contradicted that of the psychologists and surgeons who had instituted the neonatal intersex protocol. In contrast with the “health and well-being” predicted by Money, intersexual patients suffered physical pain and scarring from repeated genital surgeries, and emotional torment as the secret of their births was withheld from them by parents trying desperately to adhere to the facade of normalcy. Very few genital anomalies were “fixed” by a single surgery in the weeks after birth; instead, intersexual children often endured repeated surgeries and doctor visits focused on their genitals throughout childhood—often without any explanation by their parents or the physician about the nature of their problem. The secrecy created a deeply rooted feeling of shame and isolation, akin to that suffered by victims of childhood sexual abuse. Like sexual abuse victims, intersexual children suffered from an excess of adult interest in their genitals, and their privacy and bodily integrity were violated systematically by various health care providers over the years of “treatment.”
In 1993, Cheryl Chase founded the Intersex Society of North America (ISNA), a support and advocacy group, which began to break down the walls of “shame and secrecy” that had imprisoned intersexual people, ending their isolation. At the first weekend retreat of ISNA, participants spoke eloquently of their rage and pain, and their videotaped conversation was distributed by ISNA under the title Hermaphrodites Speak! On the tape, participants lash out at both physicians and parents who, attempting to follow the advice that they “uncompromisingly adhere” to the sex of assignment, had concealed from the patients their medical diagnoses and histories—even when surgeries and follow-up surgeries were performed in childhood, not infancy.
“I remember them removing my penis when I was five—oh, I’m sorry,” one participant says mockingly, “reducing it to the size of a normal clitoris.” The participant was diagnosed at birth as a “pseudo-hermaphrodite whose testes hadn’t developed properly, giving me ambiguous genitalia,” and the child’s parents were told instead that their baby was a girl whose ovaries hadn’t developed properly. “Basically, they [the doctors] lied to my parents, coercing them into letting the doctors perform plastic surgery, and giving me female hormones at puberty.” Unlike many intersexual persons, this patient received counseling, which was, she says “more like brainwashing sessions in which they tried to convince me that I was a normal little girl.”
Another participant says, “I was always led to believe that I was male. No one ever spoke to me at all about my state or condition,” even though it was clear that his penis was not at all like those of other boys. “I did have genital surgery” in childhood, he says, “though it was not called that.” Another participant recalled that his own surgery, for hypospadias (incompletely differentiated penis), was presented to him as a hernia operation. “For such a long time, I knew there wasn’t something quite right, but it took me quite a while to figure out what it was,” he says. Born with “a too small penis with a hole somewhere near the end and a femininized scrotal sac,” he says, “I wish people would have just stopped ‘helping’ me. Why do they insist on ‘fixing’ things?”
“Hopkins is where all this comes from,” says one participant bitterly.
In 2002, I sought out Dr. Paul McHugh, chair of the department of psychiatry at Johns Hopkins from 1975 to 2001—after John Money had repeatedly refused to speak with me, pleading old age and illness. McHugh frankly admitted that mistakes had been made. “We’re now seeing plenty of people who are saying, ‘Gee, why didn’t you just let me alone,’ “ he says, adding that in his opinion, “the best thing to do at that time would have been to let these kids grow up and see, to decide themselves”—precisely the point made by intersex activists. He is nonetheless quick to point out that “Dr. Money didn’t do this out of evil. He was trying to think about what would be the best [for the patients]. But we didn’t know enough—even though by that time the organizing force of prenatal hormones on the brain and on sexual behavior was well known in the animal literature, well established. Therefore, in my opinion, we should have held back.”
Dr. Ben Barres, the Stanford neurologist, proposed a different interpretation in our talk, one that acknowledges both the pioneering nature of Money’s intersex research and its limitations. “Money had an idea, a real hypothesis. He studied these issues and asked questions about them, and that’s the way that science gets done. You ask a good question, then you propose a good hypothesis, and then you test the hypothesis. Money did that. And that was pioneering on his part, and I think that he deserves an enormous amount of credit. Unfortunately, the problems begin in the way that he collected his data and designed his studies, and it ended up being an anecdotal report. I think the big moral of the story, as Simon LeVay has said, is that one should be careful about anecdotal evidence.”
The distinction that Barres draws between anecdotal evidence and hard data is an important one in science and medicine. It’s the difference between story and statistics, between my telling you that an herb has alleviated my depression and a clinical trial with 1,400 patients showing that a placebo is just as effective as the herb 90 percent of the time. Most scientists greatly mistrust anecdotal evidence. Until anecdotal evidence is rigorously challenged by laboratory experiment or in a large clinical trial, it remains closer to myth than to fact. The puzzling thing about the intersex research that John Money and the Hampsons conducted in the 1950s is that anecdotal evidence based on a relatively small sample was quickly accepted and assimilated by physicians despite the paucity of hard data supporting their sweeping assertions. As Ben Barres asks, “How could so many physicians, intelligent physicians, base so much treatment on one case study?”
By way of contrast, Paul McHugh points to research being conducted today by William G. Reiner, a pediatric urologist who advises a reexamination of the practice of sex reassignment of intersexual children. Reiner, says McHugh, is “a wonderful pediatric urologist and he’s catching a lot of heat from people within the medical profession who have these very strong feelings about what should be done and why. But all he’s trying to do is collect data, and that’s what should have been done years and years ago.” In a 1999 paper, Reiner indicates that his data show “that with time and age, children may well know what their gender is, regardless of any and all information and child-rearing to the contrary. They seem to be quite capable of telling us who they are, and we can observe how they act and function even before they tell us.”
“This guy is terrific,” says Ben Barres. “He’s getting some papers in the journals. He feels very strongly, based on his research, that to operate on intersexual people before they can tell you is a tremendous mistake. And this is based on hard data.” Regretting that research like Reiner’s was not being conducted forty years ago, when the neonatal intersex protocol was being developed, Paul McHugh says that “maybe if all that kind of data had been collected, we would have known better. We would have our feet more firmly on the ground.”
Scientific hindsight is, of course, not very comforting to intersexual people who have suffered a lifetime of physical and emotional pain as a result of the recommendations that began flowing from Johns Hopkins in the fifties. However, in one of those painful paradoxes that often characterize biomedical research, the same theory that created agony for the intersexual has helped make surgical and hormonal treatment for transsexual people more accessible. Although the surgical reconstruction of the anomalous genitals of intersexual children was becoming standard practice in 1965, the sex reassignment of genitally normal adults was still taboo. Christine Jorgensen was not the only American who sought what was then called “sex-change” surgery in the fifties an
d sixties—far from it. As previously noted, Harry Benjamin alone saw more than 1,500 patients from 1953 until his retirement in 1978; no doubt thousands more were unable to find the help they sought, or were inhibited by shame from seeking help at all. Well-informed, well-connected, affluent people were able to travel overseas for medical assistance, but many who sought counseling, hormones, or surgery in the United States were turned away or, worse, subject to various forms of “aversion therapy.” My Unique Change by Hedy Jo Star, published in 1965, attests to the enormous difficulties and challenges faced by transsexual people in this era, and testifies to the great strength of will and determination that were necessary to pursue a “sex change.”
Like Christine Jorgensen and Aleshia Brevard, Hedy Jo Star, born Carl Hammonds in 1920, felt like a girl from a young age—but in Star’s case these feelings were reinforced by physical changes at puberty, including gynecomastia, or breast development. “Besides the rounding out of my hips and the slenderness of my legs (when I got into a gym uniform the boys would whistle and say, ‘Ain’t she sweet’), I noticed that my breasts were filling out. At first this didn’t surprise me, because I assumed that this happened to everyone. But when I saw that this didn’t happen to other boys, I was convinced that I was different from them physically as well as emotionally,” Star writes.
The teenager’s budding breasts were noticed by his mother, who took her child to a number of doctors, including a “brain specialist” who suggested “an exploratory operation to see if I had female sexual organs.” Though Mrs. Hammonds refused to consent to the surgery for fear of complications, the response of the physicians “proved to my mother that beyond a doubt I was half-man and half-woman,” Hedy Jo Star writes in her autobiography. “They proved her suspicions that my ‘sissiness’ was really inborn femininity.” The doctor’s prognosis was discouraging to Mrs. Hammonds, though she concealed this fact from her child. Years later, Mrs. Hammonds confessed to Star that “a couple of the doctors who examined me said that I would probably not live past thirty-five because of my dual sexual nature. One doctor told her that even if I did live a normal life span, I would probably go insane.”
Instead, Carl Hammonds ran away at seventeen to join a carnival freak show. Dragged back home by his disgusted father, the unhappy teen ran away again and found work as an exotic dancer in carnivals. Living and working as a woman, Hammonds took the name Hedy Jo Star, and by age twenty-four she owned and performed in a traveling burlesque show called The French Follies. “The first couple of years on the road I worked harder than I had ever done before. I painted the scenery for the show, created the dances, trained the girls, made their costumes, and even was the show’s barker,” Star writes in her autobiography. “By the end of two years the show had earned enough money so that I owned my own tent, costumes, scenery, truck, car and a house trailer. I was proud of my achievement.” Despite her business success, Star had one overwhelming problem. She might look like a woman and feel like a woman, but she was not a woman beneath her g-string. Despite her great legs, her rounded hips, and the small breasts that she enhanced with falsies onstage, Star had the genitals of a man—and those genitals were a source of torment to the dancer and to the men who fell in love with her. When it came time to reveal her secret to various lovers, Hedy Jo began the difficult conversation by telling them that she was a “morphidite”—a hermaphrodite or inter-sexual person—before revealing the truth: that she had a penis, but no vagina. Star’s anatomy failed to intimidate her great love, a fellow carny named Red, and the two lived together for over six years. But eventually the relationship began to fall apart, and Hedy Jo placed the blame on her genitals. “Red was a normal man with a normal sexual desire, and I was a physically abnormal woman with emotionally normal wants. I had the sex organs of a man but the sexual feelings of a woman. I knew I could never be fulfilled the way I was, nor could I possibly fulfill a man sexually. If I was ever to be happy, I had to be a woman completely.”
In 1956 Star traveled to New York to see a female endocrinologist, who performed physical and hormone tests that led the physician to conclude that despite her male genitalia, Hedy Jo Star was female— and to recommend sex-change surgery. The physician, whose name Star does not reveal in her autobiography, brought in a number of other specialists (also unnamed) to examine her unhappy patient. “My face was covered during the examination with a sheet. Then my doctor and her colleagues examined me. Later my doctor explained to me that what she was planning to do was illegal under New York law, which is the reason the other specialists she consulted wished to remain anonymous. It was all right, she said, for a doctor to straighten a cripple’s twisted limbs, but not all right to straighten a sexual cripple.”
Star’s endocrinologist explained that “there wasn’t a single hospital in New York who would take the case.” Her disappointment was somewhat assuaged by the intermediate steps the doctor suggested— administration of estrogen and breast-enhancement surgery. “I was disappointed that I couldn’t have the operation immediately but at least I knew I was heading in the right direction. I knew that eventually I would have the change and that was all that really mattered.” But more disappointments were to follow for Star. Despite the feminizing effects of the hormones, and the testimony of twelve physicians in favor of sex-change surgery for her, the New York State Medical Society refused to grant permission for the surgery a year later. The decision of the society was based not on medical or scientific criteria, but on a fear of legal action. In New York State, as in almost every other civic jurisdiction in the United States, it was illegal to surgically remove a man’s testicles.
These “mayhem” statutes, imported from English common law dating from the sixteenth century, forbade the amputation of any body part (fingers, toes, hands, or feet) that might prevent a male-bodied individual from being able to serve as a soldier. Although castration might not, strictly speaking, fall under the jurisdiction of the law, few American surgeons were willing to risk prosecution by becoming test cases. Christine Jorgensen circumvented the law by traveling to Denmark, where she had family and friends and knew the language. Hedy Jo Star had neither the money nor the connections to make such a trip possible. In the fifties and early sixties, mayhem statutes were the single greatest obstacle faced by every transsexual person in America unable to travel overseas for surgery or locate one of the few surgeons willing to flout the law by performing surgery in the United States.
On the advice of her endocrinologist, Star tried another route. In November 1958, she took a train to Baltimore and presented herself to the researchers at the Johns Hopkins Hospital who were becoming famous in medical circles for their work with intersexual children. Star was hopeful that they would be able to help her, too. “The hormone shots had done wonders. My testicles had all but disappeared. My penis had shrunk considerably. My physique was completely female. How could they refuse me?”
Star’s efforts to convince the Hopkins researchers that she was intersexual, and thus a suitable candidate for corrective surgery, failed. After five days of examinations at the hospital, she was sent home to await a letter. The letter arrived, dated February 24, 1959. Its author (possibly Money, though the name is obscured in Star’s autobiography) says that after he discussed Star’s case with “Dr. Eugene Mayer, Dr. William Scott, Dr. Hampson, and Dr. Shaffer,” the group’s unanimous decision was to advise her “not to go ahead with the conversion type of surgery that you seek.” The decision of the committee was based on both medical and legal considerations. “The studies that we have made would all indicate that your basic structure is anatomically male and that we would not be likely to find any evidence internally of ovaries or any female structures.” The physicians feared that the narrowness of Star’s pelvis would make the creation of a vagina difficult, and the possibility of postsurgical urinary difficulties might handicap her ability to make a living as a dancer.
“We do realize that you are psychologically more comfortable in your role as a fem
ale and perhaps it would be wise for you to continue as you have in the past,” the letter continues sympathetically. “You deserve considerable credit for having been able to adjust as well as you have to some of the difficult situations that you have encountered in the past.” Nonetheless the committee had decided that “there are numerous reasons from both your standpoint and from the standpoint of the surgeons involved that would suggest that the performance of this type of surgery might in actuality constitute mayhem and you must consider that possibility quite seriously before embarking on such a program.”
Sympathetic or not, the letter was a heavy blow to Star, who objected to the physicians’ paternalistic approach and their assumption that they knew better than she where her best interests lay. “I didn’t feel any malice towards the doctors. After all, they were only doing what they considered best for me. But I was sure they were wrong. Not wrong as far as the possible medical consequences of the operation … rightly or wrongly, I felt their decision had been based more on ‘moral,’ psychological and legal reasons than medical reasons. Certainly there was a risk involved, but I felt that I should be the one to decide whether I wanted to take it or not. They were wrong to deny me this decision. But in denying it to me, they only increased my determination to do—somehow, somewhere—what I knew had to be done.”
The Riddle of Gender Page 15