Why should a John be a Joan?

October 8, 1999

Hermaphrodite Cheryl Chase was declared a boy at birth, a girl at 18 months. Now she is fighting to stoproutine surgery on the genitalia of intersex babies. Kathryn Jackson reports

Boy or girl? That is the first question we ask of any newborn child. Normally the answer is clear-cut, an open-and-shut case. We wrap the girls in pink blankets, the boys in blue. But what do we do when that first peek between a baby's legs is more confusing than reassuring? What if there is something that looks either like a large clitoris or an extremely small penis? What if there is a vagina and a penis, or a scrotum and a vagina? Are these children a challenge to theories about the nature of gender, or are they genetic accidents in need of surgical correction?

Over the past three years, academics - spurred, in some cases, by traumatised patients - have been challenging assumptions about intersex children. The result may be the overthrow of medical procedures commonplace since the 1970s.

At present, it is the doctors and parents who decide whether an intersex baby will be a boy or a girl. It is a practice based on the assumption that gender identity depends on socialisation, on being reared as one sex or the other. Just as surgeons can mend a cleft lip, so they can "repair" ambiguous sex organs. Most often intersex babies are assigned a female sex, because, as one doctor notoriously quipped: "It is easier to make a hole than build a pole."

The practice of gender assignment was developed by John Money, a researcher at Johns Hopkins University. In 1972, Money found the perfect case on which to test his theories, a seven-month-old boy, "John", who had suffered a botched circumcision. When the desperate parents sought out the famous doctor, he suggested John should become Joan. Money was convinced that surgical reassignment, along with firm socialisation, would yield a well-adjusted girl. That Joan/John had an identical twin brother meanta built-in control for what he was doing.

Year after year, Money met with Joan and her brother, and reported success. At the age of 12, Joan refused further contact with Money, but by then she had become one of the most influential cases of modern medicine. Based on Money's reports, thousands of intersex children were assigned a sex.

In fact, Joan says she had a miserable childhood - tormented at school and tortured by a sense of alienation. Despite having had a sex-change operation, followed by 12 years of social, mental and hormonal treatment, Joan never felt like a girl. As an adult, she had an operation to change her back to a man. John, who now lives with his wife and her three children, describes his experiences as "brainwashing".

Melissa Hines, director of the behavioural neuro-endocrine laboratory at City University, London, studies the way in which hormones affect sex differentiation. Intersexuals are rare - about one in 12,000 births - but they are a good basis for such research. Male and female foetuses have identical genitalia until the eighth week of pregnancy. Then hormones from the male foetus's testes (such as testosterone) begin to stimulate development of a penis and scrotum. Lacking these hormones, female foetuses develop a clitoris and labia. If testicular hormones are low or if female foetuses are exposed to high levels of androgens, ambiguous genitalia result.

"We cannot give people sex hormones as an experiment, the way we do with rats," Hines explains. "But we can get a lot of information about hormonal influences (on gender) by looking at intersexuals whose hormones have gone haywire while they were in the womb."

Chromosome tests are usually carried out at an early stage to find out whether a baby has the xx chromosomes that normally denote a female, the xy that normally denote a male, or, rarely, other combinations. But Hines says chromosomes are only part of the diagnosis -hormones are far more important to gender identity.

A member of the first class at Princeton University to admit girls, she has been interested in hormonal influences on gender development since the late 1970s. Now she runs two labs: one at City, one at the University of California, Los Angeles. Her research focuses on girls who have one of the most common intersex conditions, congenital adrenal hyperplasia, which results in high levels of androgen. CAH girls are born with genitalia somewhere between a penis and a clitoris. "Typically, the genitalia is made to look female," Hines says. "Their hormones are regulated with tablets, and they are brought up as girls. We lack reliable statistics, but most intersex individuals who have been assigned a gender are comfortable with it."

Most, but not all. Cheryl Chase was born in 1956, a true hermaphrodite with both male and female genital tissue. Initially, doctors declared her a boy. She was named Charles: 18 months later, another medical team decided she should be brought up as a girl. After surgery, she became Cheryl. Her parents never told her what had happened to her. She ran away from home at 15 and was suicidal in her mid-twenties. "I did a lot of research," she says, "and realised that I'd had a clitoridectomy. When I tried to discuss it with my mother, she refused. She never spoke to me again."

Six years ago, Chase founded the Intersex Society of North America. It was the start of the hermaphrodites' rights movement in the United States. Its goal is to end the routine surgical alteration of intersex children. "How we treat intersexuals is not a medical matter," Chase says. "It's a political and social issue. The surgery that disfigured me, that left me inorgasmic and with a profound sense of shame, was politically motivated."

Suzanne Kessler, a psychologist at State University, New York, has taken up ISNA's cause. She claims that doctors find genital ambiguity intolerable "not because it is threatening to a child's life but because it is threatening to the infant's culture".

So was Money wrong?

Hines says: "It is easy with hindsight to see that he made mistakes, but he was working in good faith." She notes that the John/Joan case suggests that gender may not be completely malleable. Neither is it biologically fixed. "There are powerful socialisation influences. There are people born with an enzyme deficiency on a specific androgen pathway who, at birth, have an appearance that is essentially female. They are brought up as girls. At puberty, however, their androgen levels are so high that they virilise - they get a beard, a phallus, they develop the usual secondary sex characteristics. In some places, such as the Gaza Strip, these people are more likely to start living as men. This tends to happen where, culturally, it is bad to be an infertile woman." That it is an option supports the idea that gender identity is partly culturally determined.

In Hines's lab, CAH girls, aged from three to eight, are surrounded by toys: cars, trucks, dolls, blocks, board games and books. They spend more time with the cars and trucks and less with the dolls than do other girls, Hines says. Though most grow up heterosexual, "they are more likely than the general population to be homosexual or bisexual".

Knowing that these individuals were influenced prenatally by high levels of androgens brings us closer to an understanding of the impact of hormones on sex differentation. It takes us a step closer to putting together all the pieces - genetic, hormonal, psychological and social - that go into the development of sex differentiation. Greater scientific understanding of the processes involved could help us predict which children are likely to be unhappy with a particular gender assignment, Hines suggests.

But she acknowledges that it is not purely a matter of science. "In a perfect world, we might let these children develop as they are," she says. "But this world is not perfect. There is a baby there that has to have a decision made for it. Doing nothing is a decision in itself."

The children with whom she works are aware of their condition, and she believes that full disclosure, along with counselling, should be widely available. "I can understand why some individuals are angry about what was done, but it would be unethical to change what is now an accepted medical procedure without evidence. By changing our procedure - leaving these children intersexed - we might do worse for a larger number of individuals."

Hines wants money for more research into what happened to those intersexed children who were not operated on. There are some in Britain. The problem she faces is that funding bodies are not keen to pay for sex research. But "only this kind of evidence can resolve the debatesI in these very real human dilemmas".

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