Talk calls for fair treatment of intersex children
By DAVE GOLDBERG
SPECIAL TO THE JOURNAL NEWS
(Original publication: March 22, 2004)

Most expectant parents look forward to hearing the announcement in the delivery room, "Congratulations … it's a boy!" or "Congratulations … it's a girl!"

But at least one out of every 2,000 births brings a child into the United States that does not fit so neatly into those two categories.

These children have a condition known as intersexuality — an umbrella term that refers to a child that is not definitively male or female due to an atypical sexual anatomy. Hermaphrodites — those born with both male and female genitalia — are one example of intersexuality.

How these children have been treated, and how one group believes they should be, was the topic of a discussion last night at Nyack Village Hall called "Intersexuality: First Stop the Harm."

For more than 50 years, doctors have advised scared and worried parents that they can "fix" their child by making them conform to one sex through surgery, often with disastrous physical and emotional side effects, speaker Janet Green said.

"There's no reversing these surgeries. And very rarely is there a medical need," said Green, co-founder of the intersex advocacy group Bodies Like Ours. "We say wait."

Green spoke of the "secrecy shame, isolation and fear" that has scarred the lives of thousands of intersex people who underwent surgeries in their childhood only to discover that they were not the sex that was surgically assigned to them.

Green, 46, said she was born with congenital adrenal hyperplasia, which is a deficiency of an adrenal enzyme. She had several "corrective" surgeries when she was young to enlarge her vaginal opening. She said no one gave her the diagnosis, and she discovered it at age 41 when, she said, she "Googled my way to the truth."

Because secrecy is encouraged as a way to protect the child (and the parents) from shame or embarrassment, many intersex people are not even aware of their condition, she said.

"These children are born with great fear. Instead of being nurtured, they are secluded, hidden away and lied to," Green said. "To sacrifice a healthy adulthood for acceptance as an adolescent is not right."

Green said the intersex lobby would like to see the current medical practice that advocates surgery replaced with what she calls a patient-centered protocol.

Such a protocol would bring together the parents and a neurologist, endocrinologist, a psychologist as well as another parent of an intersex child, or an intersex adult, to help the parents understand their child's condition.

"We need to calm the parents. Too often they are told their child is the only one. It's not true," Green said.

Amy Silverzweig, 34, was one of about 20 who attended. "I found it very moving," the South Nyack resident said. "The more I know, the more I can go out and be an activist."

The intersex lobby does not support a third-gender designation, but it does recommend that a gender be assigned to that child without surgical designation. The parents would raise the child as either a boy or a girl but with the understanding that the designation may change in time.

"The child should have some say," she said.

Elizabeth Green found the medical treatments on intersex people disturbing. "I don't think enough people know about this," the 24-year-old Pomona resident said.

Green said that the medical establishment is slow to change, but that progress is being made. She said a number of pediatric centers across the country have quietly changed their policies regarding intersex births.

"Little by little, we're making progress. We are changing doctors' minds," she said.

The event was part of the ongoing Lesbian, Gay, Bisexual, Transgender Community Education Series, sponsored by the Volunteer Counseling Service Community Change Project.

The Intersex Society of North America has a Web site, www.isna.org, that gives information on the topic. The Web site for Bodies Like Ours is www.bodieslikeours.org. Intersex Initiative, which advocates to end surgeries on intersex children, is at www.ipdx.org.
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The Journal News is the leading provider of news and information for New York’s Westchester, Rockland and Putnam counties. The Journal News is a Gannett publication with a daily circulation of 145,000.

At least the reporter got our website link included in the article!

If you would like to respond to any of the inaccuracies in the article that would be great and I think it would have more impact if other advocates wrote letters to the editor to show we have an expansive network of concerned activists.

By the way: I showed “First Do No Harm” which was very well received.

Janet

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Co-founder
Bodies Like Ours

It would be good to cut and paste the article because the link will probably expire in a week.

Thanks,
Betsy

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Until you've lost your reputation, you never realize what a burden it was or what freedom really is. --Margaret Mitchell