/ 13 August 1999

Lifting the veil on intersexuality

Angie Small’s daughter, Mary, looks and acts like any other toddler. But because of a rare condition, Mary was born with testes in her abdomen rather than ovaries, and without a uterus.

Her body, completely insensitive to hormones produced by testes, cannot develop along masculine lines. The hormones turn into oestrogen, which makes her body type feminine. Puberty will be a difficult time for Mary. While she will develop breasts and look like any other teenage girl, Mary will never menstruate, grow pubic or underarm hair or be able to conceive a child.

In cases such as Mary’s, there is a small chance that the testes will become malignantly cancerous before adulthood, but Small believes that waiting for her daughter to choose surgery is worth the risk. “I think it’s up to her to decide,” Small says. “I don’t want to play God for her.”

Mary’s condition is called complete androgen insensitivity syndrome (CAIS), and is one of many forms of intersexuality. More commonly known as “hermaphrodites”, many intersexed people have ambiguous genitalia, and some have both ovarian and testicular tissue. It is conservatively estimated that one in every 2 000 newborns has ambiguous external genitalia or is affected by a condition like CAIS.

The term “hermaphrodite”, with its origin in Greek mythology, has negative connotations for some of those living with the condition. Cape Town intersex activist Sally Gross, herself intersexed, says that it “makes it sound as if people like us are creatures out of the writings of Ovid rather than real people”. Using the term “hermaphrodite”, she says, “makes it easier for some implicitly to deny the phenomenon of human intersexuality as an integral part of human physical variability”.

Owing to its relative rarity and the threat it poses to society’s inflexible norms of sex and gender, intersexuality is often met with misunderstanding, denial and secrecy, not least within the medical community.

“They just didn’t know what to say to me, and they still aren’t comfortable talking about it,” Small says of her doctors. “To back away isn’t really the right reaction. I think doctors should be educated about how to treat people and parents who have a relative with this condition.”

While there are some support groups in countries like the United States and Britain, there is currently no network for intersexed people in South Africa, says Gross. She hopes that publicity about intersexuality will bring the issue out into the open, help to remove the stigma attached to it, and help intersexed South Africans to make contact with one another for mutual support.

Gross, a long-standing African National Congress member, lived in exile, mainly in Britain, since 1977. She returned to South Africa this year. In the early 1990s, at the age of 40, she discovered that she is intersexed, knowledge for which she has paid “a considerable personal price”.

“Something which helped me to cope, and to realise that I was not the only such creature in the world, was making contact with other people who are intersexed,” Gross said. “Many people who are intersexed are kept largely in the dark about their bodiliness and well away from information, access to their medical records, and from peer support. This also holds true of most parents of intersexed children. It is typically a long and hard battle to uncover the truth about oneself or about one’s intersexed child.”

She noted that many standard textbooks recommended that intersexed people and their families not be told the truth, supposedly in their own interests. Invariably intersex activists and support groups note on the basis of their own experience, as do increasingly many researchers, that this practice has done much harm.

In what is perhaps an indication of a professional medical disinclination to engage seriously with intersexuality in South Africa, the editor of the African Sexology Journal, Dr Bernard Levinson, said he really had “no idea” about the concept of intersexuality. “It certainly has not come my way,” he said, although he did express a willingness to learn more.

Families of those born intersexed often shroud intersexuality in secrecy, an indication of the degree of stigma which attaches to it. Small says she once attempted to talk to another parent whose daughter had been born with the same condition. “I have two boys and we don’t talk about it,” was the woman’s brusque response to Small’s query.

Small says: “There is really no one for me to discuss this with, and it’s terribly frustrating. Wouldn’t it have been nice for these two children to know each other, to know that they’re not alone?”

The standard protocol for handling intersexuality has also been called into question by researchers and intersex activists. It is based on the work of John Money, who wrote extensively about what is known as “the John/Joan case”.

The penis of an infant, “John”, was accidentally ablated during a circumcision. In keeping with Money’s theories, gender- reassignment surgery was performed to turn him into “Joan”. Money followed the case up over several years, and reported that “Joan” had adapted to the female gender role unproblematically, as his theory predicted.

His reports became a standard textbook justification for Money’s protocol. They support his two key-assumptions.

Firstly, until a child is about two years old, it is possible to change the child’s gender, and if rearing is appropriate, the change in gender will “take”.

Secondly, it would be disastrous psychologically for a child to grow up with non-standard genitalia – as a boy without a penis or with an unusually small one, or as a girl with an unusually large clitoris. The protocol recommends early surgery to carve the genitalia into cultural acceptability. This has now been called into question by some researchers.

“The cases that need medical treatment are relatively few, and even fewer need surgical treatment,” says Milton Diamond, a leading United States researcher, who argues that intersexed people should not be operated on without their free and informed consent unless the surgery is genuinely needed to preserve life or physical health.

“Much depends upon the condition since there are many, many types of intersex conditions. They can’t all be painted with the same brush.”

He argues that most of the 100 to 200 paediatric surgical sex reassignments performed in the US annually, and the thousands performed globally, are unnecessary and harmful.

In 1997 Diamond and Keith Sigmundson published the results of their re- evaluation of the “John/Joan” case. They showed that Money’s periodic reports on the outcome were very misleading.

“Joan” had not adapted to the female gender role, as Money presumably knew, and by the age of 14 insisted on living as a male despite not knowing that she had been born male. “Joan” became “John” again, and is now a husband.

The increasingly vigorous voices of intersexed activists, many of whom are living long-term outcomes of the first generation subjected to Money’s protocols, are given increasingly more credence. In the past, they tended simply to be ignored. Now, intersex advocacy and support groups are seen by many as crucially important.

A recent South African case parallels the “John/Joan” case. Faced with a baby boy whose penis had been cut off in a muti attack, doctors at Chris Hani Baragwanath Hospital evidently recalled Money’s textbook-paradigm claims about the outcome of the “John/Joan” case. They decided to perform gender-reassignment surgery on him.

It soon became evident that the new gender didn’t “take” in the way Money’s theory predicted. The toddler refused to wear dresses or to play with other girls. His mother told the Sunday Times: “We thought we could change him after the operation, but he is more like a boy than ever.”

Doctors conceded failure, and may consider reconstructive surgery – to try to build a new penis – when he turns 18.

The boy’s case suggests that a similar sea change is badly needed in South Africa. The apparent invisibility of intersexuality and of intersexed people, and the coyness of the medical establishment about the issue despite the debate elsewhere, also make it clear that intersex advocacy and support groups are needed here to encourage the necessary changes.

For information about intersexuality in general, consult the website of the Intersex Society of North America at www.isna.org