When Gender Isn't a Given
Page 4 of 4 -- Since the 1990's, adults unhappy with the operations have been raising their profile, denouncing a standard of treatment they say is based on cultural biases, and on arbitrary ideas of male and female and of the ability to assign gender.
The most famous case of "gender management" was not intersex but illustrated the point: David Reimer, raised as a girl after a botched circumcision, rejected the identity assigned to him later on in life and lived his teenage years and adulthood as a man, proving wrong researchers who believed sexual identity is made rather than born. He shared his story in a 2000 book, "As Nature Made Him" by John Colapinto, and appeared on "The Oprah Winfrey Show." Last May, depressed after losing a job and separating from his wife, relatives said, he committed suicide at 38.
Some doctors say that even when gender seems certain, as in the case of C.A.H. patients, who can also be fertile and bear children, there are questions surrounding the effect on the girls of high levels of androgens.
Dr. Patrick H. McKenna, chairman of the division of urology at Southern Illinois University School of Medicine and a member of an intersex task force of the American Academy of Pediatrics, said that both the mixed results of surgery on sexual sensation and the idea that some patients may identify more with the opposite gender upon growing up has led him to recommend against early surgery in intersex cases.
He and other doctors said medical centers are increasingly involving psychologists and other specialists in handling intersex cases because of their complexity.
"There's no good scientific data, and more and more we're leaning toward waiting," he said.
The Intersex Society of North America, a group representing intersex adults founded in 1993, advocates that children with anomalous genitals be raised in a specific gender even without surgery, but not be regarded as "a social emergency," as pediatric guidelines have called these cases in the past.
Cheryl Chase, the group's executive director, said its efforts are now focused on influencing how medical schools teach the intersex subject; she said that if doctors learned alternatives to early genital surgeries, including a treatment model that incorporates psychological support for families, they would in turn help parents see their children's condition more as a natural variation than a cause for panic.
In many cases, opponents of the surgery say, parents have hidden the medical history from their children. Betsy Driver, 40, a television news freelancer from Easton, Pa., who runs an online support group, Bodies Like Ours, said she underwent an extreme form of clitoral surgery as an infant because of congenital adrenal hyperplasia but did not fully learn the details of her condition until her 30's.
"I felt my parents could not love me the way I was," she said. "There was nothing wrong with the genitals. They just looked different."
It took her years of therapy to come to terms with her intersex condition, said Ms. Driver, who said she was left with no clitoral sensation. "Dating was exceptionally difficult," said Ms. Driver, who is gay and said she did not start dating until her 20's. "It was body image, fear of rejection and not being able to explain why I was different. Now, because I can explain, it's no big deal."
But she added, "Not doing the surgery is not a magic bullet." Parents need to talk openly about their children's bodies and teach self-esteem, she said.
Ms. Greene said she was trying hard to do just that. She said her daughter was old enough to be curious and constantly asked questions about the way she looked. "Bigger means better," Ms. Greene tells her.
Ms. Greene said she had warned preschool teachers about her daughter's physique "so they're not surprised" if she ever has an accident.
She said she was compiling a huge folder with information so her daughter had the facts as she grew up. "We're not ashamed of it, and she should not be ashamed of it," Ms. Greene said.
"I just came to the conclusion that we'd raise her with as much confidence as we can," she said. "If she chooses as an adult to have the surgery, I'll support her."