Those neither completely male or female speak out

by Will Evans
Sacramento Bee
30 April, 2004


David Cameron feels neither completely male nor female. Born with male genitalia, Cameron began growing breasts during puberty and didn't sprout chest hair until testosterone treatment kicked in. Instead of the typical male XY chromosomes or the female XX set, Cameron has XXY.

"I feel sort of like a blend," says Cameron, 56, of San Francisco.

Some researchers say that's a reasonable conclusion. Humans don't always clearly divide into male and female categories. Some are born with abnormalities that challenge the very definition of sex. The term for them is intersex.

Julia, a schoolteacher from a small town in central California, didn't want to be identified to protect her daughter. Now 4, the girl has a condition that caused an enlarged clitoris. Doctors couldn't tell Julia her baby's sex until after several days of testing.

The concept of intersex that links Cameron and the little girl is too blurry to yield a definition with which everyone agrees. Many people with XXY chromosomes, for example, consider themselves absolutely male and distance themselves from the intersex world.

But prominent academics and activists define intersex as anyone whose sex chromosomes, external genitalia or internal reproductive system is not considered standard for male or female.

Peter Trinkl, a computer specialist in Berkeley, doesn't really know how he looked at birth. All he has to work with are his genital scars, evidence of surgery. His parents didn't tell him much. In school, he was beaten up and called an alien.

Trinkl, 51, considers himself a heterosexual male, but dating brings up difficult issues, and he hasn't tried for 20 years.

"If I'm a man or a woman, I don't want to get too much into that," he says.

Only recently did Trinkl summon the courage, he says, to research the intersex community and hunt for his medical records.

Some infants are born with ambiguous genitalia while others clearly look male or female and may not find out they are different until they reach puberty. Still others bear a visible difference in anatomy - an enlarged clitoris or a tiny penis - but otherwise can be determined male or female. And some have the standard chromosomes of one sex and the external appearance of the other.

Intersex activists decry the shame and secrecy caging their condition. They urge doctors to avoid cosmetic genital surgery on intersex infants until the children themselves can decide if they want it. Cameron is helping to organize a public hearing on intersex issues to be held by San Francisco's Human Rights Commission in May.

Intersex people might make up as much as 2 percent of live births, with between 0.1 percent and 0.2 percent of all infants receiving genital surgery, according to a scientific journal article co-written by Anne Fausto-Sterling, a professor of biology and gender studies at Brown University.

"If you look at this from the bigger philosophical view of, 'Are there really only two kinds of people in the world - either men or women?' - then the answer to that clearly is no," she says.

Human sexuality, instead, can be seen as a spectrum or continuum, she says.

The medical profession has traditionally viewed an intersex birth as a "social emergency," pushing to assign a child's sex immediately and perform corrective surgery as soon as possible, says Celia Kaye, a professor of pediatrics at the University of Texas Health Science Center at San Antonio. Doctors want to avoid traumatizing parents and help the child grow up normally, without confusion or ridicule, she says.

Kaye helped create the American Academy of Pediatrics' policy statement on intersex newborns along these lines in 2000. But the academy might revise its guidelines because of a growing number in the field who question whether surgery and sex assignment should take place so early in life.

A baby with an enlarged clitoris or minuscule penis, depending on one's perspective, conventionally has been more likely to be determined a female because it's surgically easier to make that happen, Kaye says. But it's not clear, she says, whether that child will grow to be a happy, functioning woman. Some activists call it "genital mutilation."

Cheryl Chase, 47, had surgery on her enlarged clitoris, leaving a "big, flat scar." But she says the biggest harm doctors caused was "the idea that this was shameful," telling her parents to keep it a secret.

In the early 1990s, Chase, who identifies herself as an intersex lesbian female, confronted doctors, called the press and founded the Intersex Society of North America, creating today's intersex movement.

Because of pressure from advocates, doctors are now more open with patients and more likely to present parents with options rather than telling them what to do, says Amy Wisniewski, who does intersex research at the Johns Hopkins Children's Hospital.



Resources:

Bodies Like Ours support group with online forums - +1 (610) 258-7466.

Intersex Society of North America:

Klinefelter Syndrome and Associates - +1 (888) 999-9428.

The Johns Hopkins Children's Center guide for patients and parents



Will Evans can be reached at wevans@sacbee.com



© Scripps Howard News Service 2004




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