Someone recently brought to my attention that Arthur Miller, thePulitzer-winning playwright, had a son named Daniel, born with Down Syndrome. Apparently, Miller sent Daniel to an institution and visited him rarely, if ever. He neither spoke about Daniel, nor did he mention him in his autobiography. It was almost as if Daniel didn’t exist for him.

It is deeply troubling to note today that in many sectors the medical establishment appears bent on making sure that children with Down Syndrome actually don’t exist. The American College of Obstetricians and Gynecologists (ACOG) now recommends screening all pregnant women for Down Syndrome, and the latest prenatal tests allow doctors to determine whether a baby might have the abnormality as early as 11 weeks gestation. In fact, studies indicate that more than 90% of unborn children who test positive for Down Syndrome are aborted.

There is, of course, a name for what is happening here. It’s called eugenics—or, more precisely, the “new eugenics” (a topic on which I’ve written before). While we can wholeheartedly embrace genetic research that strives to prevent or eliminate Down Syndrome, we simply cannot tolerate a biomedical ethos that strives to eliminate Down syndrome children.

In the wake of the new ACOG recommendations, the Washington Post ran a touching first-person account of parenting a child with Down Syndrome. The mother who wrote the piece noted quite cogently:

Certainly, these recommendations will have the effect of accelerating a weeding out of fetuses with Down syndrome that is well underway. There's an estimated 85 to 90 percent termination rate among prenatally diagnosed cases of Down syndrome in this country. With universal screening, the number of terminations will rise. Early screening will allow people to terminate earlier in their pregnancies when it's safer and when their medical status may be unapparent to friends and colleagues.

I understand that some people very much want this, but I have to ask: Why? Among the reasons, I believe, is a fundamental societal misperception that the lives of people with intellectual disabilities have no value -- that less able somehow equates to less worthy… [W]e're assigning one trait more importance than all the others and making critical decisions based on that judgment.

In so doing, we're causing a broad social effect. We're embarking on the elimination of an entire class of people who have a history of oppression, discrimination and exclusion.

This also brings to mind a New York Times story from earlier this year which described how parents of children with Down Syndrome are trying to create a greater awareness about the positive aspects of parenting these children:

Sarah Itoh, a self-described “almost-eleven-and-a-half,” betrayed no trace of nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.

She likes to read, she said. Math used to be hard, but it is getting easier. She plays clarinet in her school band. She is a junior girl scout and an aunt, and she likes to organize, so her room is very clean. Last year, she won three medals in the Special Olympics.

“I am so lucky I get to do so many things,” she concluded. “I just want you to know, even though I have Down syndrome, it is O.K.”

Sarah’s life, and the lives of other individuals with Down syndrome, add a richness to society that cannot be measured. And this is so for one simple reason: Sarah, and all children with Down, are human persons. But we live in a culture that is rapidly losing its capacity to recognize human personhood where it is to be found. We well have reason to fear that, in our technical sophistications and narcissistic obsession with the unimpeded pursuit of every personal preference, there is very little separating us from a new barbarism.

In a recent Vanity Fair article about Arthur Miller, the writer speculates about what the playwright lost by living his life as though his son, Daniel, didn’t exist:

“A writer, used to being in control of narratives, Miller excised a central character who didn’t fit the plot of his life as he wanted it to be. Whether he was motivated by shame, selfishness, or fear – or more likely all three – Miller’s failure to tackle the truth created a hole in the heart of his story. What that cost him as a writer is hard to say now, but he never wrote anything approaching greatness after Daniel’s birth. One wonders if, in his relationship with Daniel, Miler was sitting on his greatest unwritten play.”

A thought to ponder.

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