Thursday, August 16, 2007

Down Syndrome

[posted by Callimachus]

You don't expect a great writer to be anything but flawed, and this revelation about Arthur Miller is more sad than shocking:

Only a handful of people in the theater knew that Miller had a fourth child. Those who did said nothing, out of respect for his wishes, because, for nearly four decades, Miller had never publicly acknowledged the existence of Daniel.

He did not mention him once in the scores of speeches and press interviews he gave over the years. He also never referred to him in his 1987 memoir, Timebends. In 2002, Daniel was left out of the New York Times obituary for Miller's wife, the photographer Inge Morath, who was Daniel's mother. A brief account of his birth appeared in a 2003 biography of Miller by the theater critic Martin Gottfried. But even then Miller maintained his silence. At his death, the only major American newspaper to mention Daniel in its obituary was the Los Angeles Times, which said, "Miller had another son, Daniel, who was diagnosed with Down syndrome shortly after his birth in 1962. It is not known whether he survives his father." Citing the Gottfried biography, the paper reported that Daniel had been put in an institution, where Miller "apparently never visited him."

It also reminds me of something I meant to look up. Are there fewer and fewer Down Syndrome people around, or is it just my imagination? They were part of life when I was growing up: The big kid Robbie who uses to sit on his front porch on my walk to school, smiling and waving at everyone who passed as he rocked vigorously back and forth in his rocking chair; a whole classroom full of them in my high school, where the rest of us could hang out on free periods if we chose. A district-wide Special Olympics with dozens of participants.

Now? I don't know if my son has ever seen a Down Syndrome kid. I am sure there are none in the halls of his high school.

So I looked it up: Sure enough, it was predicted in 1982 that the number of Down Syndrome births would rise rapidly "principally as a result of the large increase in the number of women moving into the older age categories," but in fact, such births actually declined. "In 1989, the rate of Down syndrome cases was 15% lower than expected, decreasing to 51% by 1998. Women 15 to 34 had 45% fewer affected pregnancies in 2001, while women 35 to 49 had 53% fewer in 2001."

The reasons are complex, but certainly what looms largely in them are dramatic advances in prenatal detection testing, and access to legal abortion. The New York Times took up the ethical problems of that here and recently revisited them here. "About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion."

Needless to say, this creates painful contradictions for the part of the body politic that is nominally pro-choice on abortion, yet anti-eugenics and supportive of people with disabilities.

Don't expect any Gordian-knot-cutting insights here. All I can add is, as a parent, I would not wish that situation on anyone. Yet I can't help feeling the world is diminished without Robbie in it.