People with intersex conditions want the shame and stigma to end
SHARON DOYLE DRIEDGERMay262003
People with intersex conditions want the shame and stigma to end
SHARON DOYLE DRIEDGER
IS IT A GIRL OR A BOY? That’s the first question all new parents ask at the birth of their baby. And one that usually gets a quick and clear answer. So John and Mary—an Ontario couple who want to remain anonymous—were understandably alarmed when the doctor in the delivery room of their small community hospital seemed confused: “It’s a boy. No, it’s a girl. It’s a boy. We don’t know.” The baby—their second child, now five—was born with ambiguous
genitalia, a marker for intersex, a range of conditions in which an individual has a mix of male and female biological features. The perplexed parents had to wait nearly a week while doctors determined their child’s sex. “You’re overwhelmed,” says John. “Your child is not quite right in the genital department. It’s not sinking in.” In the meantime, they couldn’t name the infant and had to fend off family and friends who, naturally, wanted to know the baby’s gen-
der. “We had to hold people at bay,” says Mary. “We said, ‘We’ll get back to you.’ ” Intersex is more prevalent than people realize, occurring in roughly one of every 2,000 newborns. That makes it nearly as common as cystic fibrosis. But it has been wrapped in so much secrecy that many don’t even know it exists. The term intersex is relatively new, adopted a couple of decades ago to replace the more loaded designation “hermaphrodite.” But the con-
dition has been documented through the ages in such authoritative texts as the Talmud. Some historians conjecture that Joan of Arc, Queen Elizabeth I and Wallis Simpson were intersexuals.
Intersex was once considered so shameful that doctors advised parents never to tell their affected children. But the truth usually emerged, and inevitably it came as a great shock. Eden Atwood, a Montanabased jazz singer, recalls her panic when she learned at 14 that she had the intersex condition androgen insensitivity syndrome (AIS). Atwood’s stepmother crudely blurted out the reason she had not begun to menstruate. “She told me, in a semi-drunken state, ‘You’re half man, half woman,’ ” says Atwood. “All I could think of was, ‘Oh my God, I’m a monster.’ I was suicidal.”
The taboo is beginning to fade, partly because of the efforts of intersexuals like Californian Cheryl Chase, who are channelling their anger and frustration into activism. Chase founded the Intersex Society of North America in 1993, and over the past decade thousands of individuals, as well as some highly respected doctors and academics, have joined the fight to erase the stigma. Intersex is not to be confused with homosexuality. But the North American gay rights movement has helped create an atmosphere that is increasingly tolerant of those who differ from the sexual norm. And intersexuals are slowly gaining the confidence to reach out to each other. “We’ve progressed,” says Atwood, remembering how she felt when signing up in 1996 for an Internet support group for people with AIS. “We were too afraid to tell each other our names. It was thrilling and terrifying.”
Intersex is gradually sliding onto the popculture radar screen. Prime-time TV shows like ER and Friends have dealt with it—insensitively. Recent books like Amy Bloom’s essay collection, Normal, and Jeffrey Eugenides’ novel, Middlesex, which won a Pulitzer Prize, present a more realistic and sympathetic view of intersexuals. The central character of Middlesex, Callie, has 5-alpha reductase, which causes apparently normal girls to masculinize at puberty. Eugenides, who describes his book as the tale of “a real person who happens to have an intersex condition,” told Maclean’s: “I used to always think of hermaphrodites as people from literary history, as mythical creations. But Callie is someone everyone can relate to: every-
one’s body changes at puberty. Her experience in many ways is different only in degree.”
Callie’s condition is among the few syndromes—usually genetic—that account for about 80 per cent of intersex cases in North America and Europe. But there was no history of the condition in John and Mary’s family. “It was, ‘Wow, where the hell did that come from?’ ’’says John. “Do we know what causes lightning? It’s an anomaly.” Shortly after delivery, their baby was transferred to Toronto’s Hospital for Sick Children, where a team of specialists examined her. In cases of ambiguous infant genitalia, it can take weeks or months for medical experts to make a diagnosis, says Dr. Daniel Metzger, a pediatric endocrinologist at British Columbia’s Children’s Hospital in Vancouver. But he notes that physicians usually assign gender within a week.
And so it was with John and Mary’s child. The baby had a testis and male chromo-
somes in her skin and organs, but also had a uterus, an ovary and a fallopian tube, as well as female chromosomes in her blood. Doctors concluded she should be raised a female. “Most of her plumbing is that of a girl,” says John. “Three-quarters ain’t bad.” They removed the testis and recommended cosmetic genital surgery. “She was a normal girl in appearance except for her clitoris, which stuck out,” says Mary. She notes that her daughter had a “feminization”— surgery to reduce the size of her clitoris.
“Post-surgically, it looked so beautiful.” Intersexuals are leading scientists and society to reconsider long-held ideas of what it means to be male or female. “Having my daughter,” says John, “forced me to learn that because you have testicles doesn’t mean you are a male—or if you don’t, you are less a male.” Metzger says medicine is starting to understand that there is a complex interplay between chromosomes, gonads and hormones that affects a child’s anatomy. And he cautions that the biologically perfect male or female may be only an illusion. “We all have little mistakes in our bodies,” says Metzger, suggesting that subtle forms of intersex and other abnormalities are widespread, and often undetected. A misshapen uterus may go unnoticed until a woman finds she can’t get pregnant; an infertile male might discover he has an ovum. Metzger contends that sexuality is a continuum, with many people falling somewhere between the poles of “pure” female and “pure” male—and with intersexuals in the middle.
‘I LIVED UNDER the shroud of secrecy for so long,’ says Atwood. ‘But then I got angry. I don’t have androgen receptors. Big flippin’ deal!’
But that middle ground can be a terrifying place in a society that still has contempt for sexual ambiguity. Atwood spent 15 years hiding her AIS. “I was so consumed with fear that someone would find out,” she says. The 34-year-old singer has XY (male) chromosomes, but developed external female genitalia because of a genetic defect which prevented her body from responding to the male hormones produced by her testes, hidden in her abdomen. In AIS individuals, the gene that makes androgen receptors is either missing or broken. At birth, Atwood looked like a normal baby girl. And the attractive singer, a former soap-opera actress, looks and feels totally female. “In my younger years, I got a lot of male attention,” she says. “I have a normal sexual response.” But, as a teen, the secret shame of being differentknowing she would never menstruate or bear a child because she lacked a uterus—took its toll. “It made me a neurotic wreck. My self esteem was in the gutter.”
Last fall, Atwood decided to come out. “I lived under the shroud of secrecy for so long. But then I got angry. I don’t have androgen receptors. Well, big flippin’ deal! ” The liner notes of her new CD, Waves: The Bossa Nova Session, disclose her secret. “If I stand up and say I have AIS, a little girl can say, T have AIS too,’ ” she says. “I never want a young teenager to go through what I did.” Advocates are working to erase the stig-
ma associated with intersex and to change medical practice—especially genital surgeries. Because it is, in the notorious words of one surgeon, “easier to dig a hole than build a pole,” most infants with ambiguous anatomy have been assigned the female sex and had surgery to create a vagina. The approach has fit neatly with the outdated psychological theory that infants are blank slates—“fix” the genitals and clinch the child’s gender with sex-appropriate rearing.
But in recent years, some intersexuals have come forward with horrific stories of operations that left them with scarred, painful, infection-prone genitalia. “Anytime you cut people’s genitals it compromises their ability to enjoy sexual pleasure,” insists Chase. Intersex advocates also argue that genital “corrections” can inflict psychological damage—because “the surgery is done in an aura of shame and secrecy,” ex-
plains Alice Dreger, a professor of science and technology studies at Michigan State University and chair of the Intersex Society of North America. And, in some cases, the surgery contradicts the individual’s innate sense of their gender. “We hear from a number of people who were born with a micropenis and were castrated and grew up being injected with female hormones,” notes Dreger, “who feel absolutely male.” Advocates argue that children should be able to grow up with ambiguous parts and decide for themselves as adults. The medical community has been listening. “Surgeries are being postponed or not happening as commonly as they used to,” says Metzger. Meanwhile, some surgeons say improved techniques can “normalize” genital appearance without compromising future sexual function. Ethicists have also joined the debate. “Very often, functionally, there’s noth-
ing wrong—the child is just further out on the normal spectrum of variations,” notes Arthur Frank, a University of Calgary sociology professor who specializes in bioethics and is a member of the Surgically Shaping Children project group at the Hastings Center, a U.S. research institute. “But parents want the best for their children, and the best often translates into normal.”
John and Mary wrestled with the issues before consenting to their daughter’s surgery. “In the end, it was an easy decision,” says Mary. “You would have to explain it to a babysitter, to daycare, at swimming lessons, at pyjama parties. Other kids would say, ‘What’s that?’ ” The couple wants to protect her in a world that discriminates against those who deviate from the sexual norm. But the response to Atwood’s disclosure suggests attitudes may be changing. “No one,” observes the singer, “said a damn thing.” li1]
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