Held upright by her parents, Emma shows off her church finery. She is a little more than a year old, and the surgery to make her look like a girl has healed. |
Months later, Emma played happily in her mother’s lap. “Hey, punkadoodle,” cooed Vicki McDonald. For 18 years, Vicki, now 43, pursued infertility treatments. Finally, she and her husband Charles turned to adoption, and now they have Emma: a solemn child with a gaze that locks in like a searchlight. She was also neither male nor female. The medical term is intersexual.
In the kitchen of the family’s Gainesville, Florida, home, Vicki changed Emma’s diaper, revealing ambiguous genitals. The child’s phallus was larger than a clitoris, but it lacked many of the structures of a penis and was bound down by foreskin. Emma had one testicle, no vaginal opening, and an enlarged urethral hole located where a vagina would have been. The structures looked lumpy and unfamiliar, but not startling. Within Emma’s abdomen are a rudimentary uterus, one fallopian horn, and an undeveloped gonad. Her chromosomes, Vicki explained, are “mosaic,” a pattern called XY/XO.
Emma’s particular condition is rare. But intersexuality, in a variety of forms, occurs in about one of every 2,000 births—about the same proportion as cystic fibrosis. Sex, in reality, is more than the simple blueprint learned in high-school biology—XX for female, XY for male. All embryos are identical for the first eight weeks of gestation, and then several factors nudge the infant toward male or female development.
But some embryos step off track. The cause can be chromosomal or hormonal. Infants with androgen insensitivity syndrome, for example, have XY cells but cannot process testosterone and look like females. An inherited condition called 5 alpha reductase deficiency, triggers an apparent female-to-male sex change at puberty. Congenital adrenal hyperplasia—the most common intersexual condition—results from hormonal imbalances that masculinize the genitals of XX children. Scientists speculate that such an imbalance may also masculinize the brain, establishing gender. Intersexual infants range from hard-to-classify children like Emma to those with much subtler anomalies. To some degree, intersexuality is in the eye of the medical beholder: A large clitoris may be considered normal by one doctor, ambiguous by another.
One thing all intersexual children have in common, however, is that modern medicine regards them, in the words of the surgical training videotape “Surgical Reconstruction of Ambiguous Genitalia in Female Children,” as a “social and psychological emergency.” Surgeons typically perform plastic surgery early on to protect the child—and, not incidentally—the parents, from any sense of ambiguity. Nearly all intersexual babies are assigned to be female, because the surgical techniques are better. In Emma’s case, doctors planned to remove her testicle, shift her urethral hole, and carve a labia and clitoris from existing tissue. The medical team told the McDonalds that Emma would look as much as possible like a normal girl after the operation. Nonetheless, on the eve of the surgery, Vicki remained in deep conflict—especially about the clitoroplasty, a procedure she feared would harm her daughter’s future sexual sensitivity. “This child,” she said quietly, “is perfect as she is. She was sent to us by God.”
If Emma had been born only a few years ago, Vicki might not have been so tormented. She might not have been told many details about Emma before the infant went into surgery. American medical protocols were established in the 1950s: Assign a sex, operate, and shield the family from the notion that their baby’s gender is in question. Typically, a medical team—made up of a surgeon, an endocrinologist, a geneticist, and more recently, a psychotherapist—reached a committee decision on sex assignment, then informed the parents that their child had a correctable deformity.
That approach was given credence by psychologist John Money of Johns Hopkins University. Money, maintained that gender was plastic until age 2. In 1972 he published a book called Man & Woman, Boy & Girl on the John/Joan case, which appeared to prove his theory. John, a male twin, lost his penis in a circumcision accident, and his sex was changed to female. Money claimed Joan grew up happily feminine. But in 1994, biologist Milton Diamond tracked down Joan and discovered that she had chosen a sex-change operation back to male in his early 20s. Gender, it seemed, was not so easily manipulated.
The John/Joan revelations dumped fuel on an ethical fire that got hot in 1993, when an adult intersexual named Cheryl Chase, now 43, founded the Intersex Society of North America, an organization now with 1,500 members. The group lobbies against unnecessary genital surgery on infants and maintains that current medical protocols are based on stereotypes: Maleness is equated with penis size, femaleness with fertility. Immediate genital surgery on intersexual infants, they say, sacrifices the sexual sensitivity of babies assigned female.
They also claim that medical secrecy intensifies the stigma it is intended to protect against. Therefore, the Intersex Society advocates a noninterventionist approach: No surgery unless medically necessary and full disclosure to parents and ultimately the child. An intersexual child, they say, could be raised with a regular gender identity—sex-stereotypical clothing, name, and hair—without altering the genitals. With therapy and a supportive family, an intersexual could make his or her own decision whether to choose cosmetic procedures—or not.
John Colapinto's award-winning Rolling Stone article, "The Story of John/Joan," describes the origins of and justification for intersex medical protocols. See www.infocirc.org/infocirc/rollston.htm.
The Web site of the Intersex Society of North America is a clearinghouse for information, contact numbers, and support: www.isna.org.
