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Lisa Belkin

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Does Illness Define A Child?

Posted: 10/25/2011 6:07 pm

A new prenatal test, called MaterniT21 was made available to the public yesterday (in 20 cities across the U.S.), one that can detect Down syndrome early in a pregnancy with far less risk.

Odds are good that it will decrease the number of women who have amniocentesis or chronic villus sampling, the existing tests, both of which are more invasive. Odds are also good that there will be fewer babies born with Down syndrome, as women get earlier information more easily and decide to terminate their pregnancies.

This particular test is controversial for many reasons (you can read about that here and here) but what I want to talk about today is the philosophical underpinning of the tests.

Are children their illnesses? That is an ongoing question of parents whose children are diagnosed as having Down syndrome and autism spectrum disorders, and a host of other conditions that often define them to others. Decades of insistence by parents who know the power of language have made it clear to those who are paying attention, for instance, that there are no "autistic children" just "children with autism."

And yet, if you could somehow erase the condition, would you be left with the same child? And if you could avoid having a child with that condition, would you? Should everyone? Would there be something lost to the world if -- many would use the word "when" -- we can screen many in advance and reverse others after birth?

Temple Grandin, among the best known adults with autism in the country, has said that she would not accept a "cure" were one available. It comes up often when she is interviewed, most recently on the Brian Lehrer Show on NPR yesterday morning:

Amy Julia Becker's daughter Penny is a little girl with Down syndrome. Her mother writes about her often, on her blog, Thin Places, and most recently in her new book, A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny http://www.amazon.com/Good-Perfect-Gift-Expectations-Little/dp/0764209175/ref=pd_sim_b_1. A year ago, when she was pregnant with her third child, she wrote about her decision not to have any existing tests for Down syndrome, in spite -- or more accurately, because -- of the fact her daughter lived with the condition. Today she is here to write about the new tests, and her realization of how an extra chromosome does, and does not, define child.

So go on off to read what she has to say (as always, she says it beautifully.) Then use the comments to discuss a world in which some lifelong conditions are optional.

READ: Explaining Down Syndrome, To My Daughter, And Myself