We cannot know what to expect

From an email exchange between blogger-professor Michael Bérubé (the father of a child with Down syndrome) and ethicist Peter Singer (who, in the course of a 1994 argument linking our duty not to kill something with its cognitive ability, rattled off a list of limitations parents of Down’s kids must expect: never “to play the guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete, basketballer or tennis player”). But wait, Bérubé wrote, my son can do most of those things! Singer eventually got in touch to say that he’d been wrong in this particular case, but a couple exceptional individuals shouldn’t change our general expectations for people with Down’s. Bérubé replies here with some very telling comments about expectations and how they really do make and remake the horizons of the possible.

The larger point of my argument with your claim is that we cannot (I use the term advisedly) know what to expect of children with Down syndrome. Early-intervention programs have made such dramatic differences in their lives over the past few decades that we simply do not know what the range of functioning looks like, and therefore do not rightly know what to expect. That, Professor Singer, is the real challenge of being a parent of a child with Down syndrome: it’s not just a matter of contesting other people’s low expectations of your child, it’s a matter of recalibrating your own expectations time and time again—and not only for your own child, but for Down syndrome itself. I’ll never forget the first time I saw a young man with Down syndrome playing the violin—quite competently, at that, with delicacy and a sense of nuance. I thought I was seeing a griffin. And who could have imagined, just forty or fifty years ago, that the children we were institutionalizing and leaving to rot could in fact grow up to become actors?  Likewise, this past summer when I remarked to Jamie that time is so strange that nobody really understands it, that we can’t touch it or see it even though we watch the passing of every day, and that it only goes forward like an arrow, and Jamie replied, “except with Hermione’s Time-Turner in Harry Potter,” I was so stunned I nearly crashed the car. I take issue with your passage, then, not because I’m a sentimental fool or because I believe that one child’s surprising accomplishments suffice to win the argument, but because as we learn more about Down syndrome, we honestly—if paradoxically—don’t know what constitutes a “reasonable expectation” for a person with Down syndrome.


from “More on Peter Singer and Jamie Bérubé,” by Michael Bérubé, Crooked Timber, 1 December 2008 :: via Brainiac

Originally published at culture-making.com.

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