My first post on this--though more specifically about the "eugenics" rap--has sparked an important and somewhat heated discussion about Down Syndrome. I want to address a few things and cede a few others. First, when I described Down Syndrome as "medically disastrous" I was quoting language from a different blog post, written by somebody else. Nonetheless I did endorse that description (and still to some extent do), and I want to put some of the criticism front and center:
- Kathy G: The fact is, most people with Down Syndrome have IQs in the mild to moderately retarded range -- very few are in the severe or profound range. People with Down Syndrome are at higher risk for a range of physical problems, but proper physical therapy, medical care, and education at an early age has dramatically improved their health, life span, and cognitive functioning....[T]hrowing around terms like "medically disastrous" and "tragic" is highly stigmatizing and helps spread damaging misinformation about Down syndrome kids. The fact is that most people with Down syndrome are only mildly or moderately retarded and most have no serious physical problems (although they're at greater risk for a variety of physical problems). And unfortunately when you describe Down syndrome in such a negative, highly charged, and misleading way, you only add to people's fears and prejudices about this subject.
- Dave White: I just want to emphasize that so much is now known about the condition that parents can very easily anticipate complications, be they thyroid related, hearing or gastrointestinal, or even something as serious as CHD. We've (happily) progressed to a stage where raising a child with Down syndrome is not as difficult or heartbreaking as it was even just a generation or two ago. My fear is that, due to ignorance of the condition itself, we now have too many parents choosing to terminate a potential gift out of a misguided fear.
- Michael Bérubé: Roughly one in six babies with Down syndrome are born with heart anomalies. But mostly they're the kind of heart anomalies that don't kill infants anymore in the industrialized world. As for "extreme" mental retardation . . . sigh. "Severe and profound" is the term given to people with IQs below 20. Most people with Down syndrome, as Kathy points out, have mild to moderate retardation....Raising a kid with Down syndrome is tough work, no doubt about it. A little tougher, on balance, than raising a kid.
In light of this, I want to concede that--though I used the word "extreme" and not "severe and profound"--my description was a bit overheated. Likewise, I want to refine here the language I used in my description of Down Syndrome death age. I wrote unclearly. My understanding had been (correctly) that people with Down Syndrome have, in the last 20 years or so, enjoyed an increased life expectancy of about 30 years (now about age 50). Still a very early age to die. But my original language could have been read to imply that DS life expectancy was much lower yet. It's not. What is true, though, is that infant mortality is still rather higher in babies with Down Syndrome than in babies without.
Obviously, any normative claims about how "disastrous" a disorder like Down Syndrome is don't really solidify all that much. To somebody like me--somebody extremely unprepared to raise even an unusually healthy baby--adding Down Syndrome to the mix would constitute a serious, serious complication. To somebody who has successfully raised a child with Down Syndrome--and cherished the experience--it wouldn't seem nearly as bad. What's always been plain is that Down Syndrome is nothing like Tay Sachs.
What still seems plain (at least to me) is that, though most parents-to-be expect their lives to change drastically in many different ways, they do not expect an in utero diagnosis of Down Syndrome. When the diagnosis does come, some I'm sure handle the bad news better than others, but all I imagine are aware that they are no longer going to get what they had been expecting out of parenthood and that their child's life will be beset by any in a wide range of associated maladies. That fact is enough to, I think perfectly reasonably, drive some parents to choose abortion. I get the sense that among my commenters (including the estimable Michale Berube) there is wide agreement on that point. I've tried to treat the actual disorder more clearly in this post, but it still seems to me that the maladies that, to Michael, make raising a child with Down Syndrome "a little tougher, on balance" might constitute a real catastrophe for others. And that severe Down Syndrome really does rise to the level of medical disaster.