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November 21, 2005 | Read comments | Post a comment

The 'Almost Perfect' New York Times story

I'm not sure, but I think perhaps the New York Times had a "first" in its Week in Review section yesterday -- a story leading off with a quote from a person with Down syndrome. And not just in aid of a "gee-whiz" inspiration story, either. This was an in-depth trend story: The Problem With an Almost-Perfect Genetic World .

"I don't want to think like we're being judged against," Ms. Peterson said. "Not meeting their expectations." Mia Peterson, identified as the "chief of self-advocacy for the National Down Syndrome Society," was only one of a number of people talking to Times reporter Amy Harmon about the potential fallout from the new prenatal test announced recently that can detect the presence of Down syndrome in fetuses in the first trimester.

The story is amazing -- in the good way -- on many levels. After I got over my shock at seeing an analysis story -- on the front page of the Sunday NYT Week in Review, no less! -- about what disability rights movement people think about the idea of abortion for disability, I read on, marveling:

for people with Down syndrome and the cluster of other conditions subject to prenatal screening, the new test comes with a certain chill.

Because such tests often lead to abortions, people with conditions from mental disability to cystic fibrosis may find their numbers dwindling. As a result, some fear, their lives may become harder just as they are winning the fight for greater inclusion.

"We're trying to make a place for ourselves in society at a time when science is trying to remove at least some of us," said Andrew Imparato, president of the American Association of People With Disabilities, who suffers from bipolar disorder. "For me, it's very scary."

Leave it to Michael Bérubé to make cogent points. Harmon quotes him as well:

Mr. Bérubé, whose 14-year-old son has Down syndrome, worries that if fewer children are born with the condition, hard-won advances like including them in mainstream schools may lose support. "The more people who think the condition is grounds for termination of a pregnancy, the more likely it will be that you'll wind up with a society that doesn't welcome those people once they're here," he said. "It turns into a vicious cycle."

Anthony Shriver, founder of Best Buddies, a nonprofit organization that helps people with intellectual disabilities form friendships, said smaller numbers will mean even greater social isolation for the people his group serves.

Well, you need to read the story yourself -- this link to The Problem With an Almost-Perfect Genetic World should work to get you there without having to register with the New York Times.

Amy Harmon is good on disability issues, no question about it. A technology reporter for the Times who seems to be particularly interested in reproductive technology and what's happening with youth today, she's the one who did the wonderful pieces last year on autism and "neurodiversity": she listened to, and gave credence to, the autistic people. Sad to think that this should be so amazing -- after all, it's a basic tenet of journalism that one interview and quote the people one is writing about -- but unfortunately, when it comes to disability, that's often been the exception rather than the norm. Read her May 9, 2004 Neurodiversity Forever: The Disability Movement Turns to Brains and her December 20, 2004 article, How About Not 'Curing' Us, Some Autistics Are Pleading.

I do find myself wondering how much of the Week in Review editors' decision to run yesterday's article was influenced by the Oct. 18 Washington Post op-ed, The Abortion Debate No One Wants to Have by Patricia Bauer. Bauer, a former Washington Post reporter and bureau chief, has a daughter with disabilities. "Whenever I am out with Margaret," she writes, "I'm conscious that she represents a group whose ranks are shrinking because of the wide availability of prenatal testing and abortion," Bauer wrote.

This is such a thorny social issue -- and so misunderstood by liberals (to get an idea, click here then scroll down to the comments)-- that its heartening to know it's getting some serious coverage.

Posted by mjohnson on November 21, 2005 10:01 AM


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