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What can we "expect" from a Down syndrome child?

Posted by Christopher Shea  December 2, 2008 03:04 PM

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countusin.jpgBack in September, the Penn State English professor Michael Berube rebutted a claim by the controversial ethicist and animal-rights advocate Peter Singer. It happened during a conference on cognitive disability and moral philosophy, at Stony Brook University's Manhattan campus. Berube, who has a son with Down syndrome, objected to claims that Singer had made about such children in a 1994 book, "Rethinking Life and Death." Rearing a Down-syndrome child "can still be a warm and loving experience," Singer had written, " but we must have lowered expectations of our child's ability. We cannot expect a child with Down syndrome 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." Those observations were part of a larger argument Singer mounted linking our duty not to kill someone or something to cognitive ability (assuming the absence of a soul).

At the New York conference, in remarks later reprinted in part on his blog, Berube said that he "might have fallen for" Singer's argument in 1994, when his son was three. But no more. (Singer attended the conference, but he wasn't in the room at the time.) "I once believed -- and wrote -- that Jamie would not be able to distinguish early Beatles from late Beatles or John's songs from Paul's," Berube wrote. However,

now he knows more about the Beatles' oeuvre than most of the people in this room. His interest in Star Wars and Galaxy Quest has given him an appreciation of science fiction, just as his fascination with Harry Potter has led him to ask questions about innocence and guilt. He is learning a foreign language, having mastered the "est-ce que tu" question form in French …

Neither Michael nor Jamie had much of a taste for Woody Allen, admittedly, but they had had spirited discussions about animal rights, a Singer specialty, inspired by the film "Babe."

This week, at Crooked Timber, Berube reports that these comments only recently came to Singer's attention (via Berube's blog), whereupon the philosopher initiated a friendly email exchange. Singer said he was delighted to hear of Jamie Berube's abilities, and intrigued by the challenge they posed to his theory. He asked for evidence, however, that Jamie was not an anomalous case -- and this was not an idle challenge. "If he is mistaken about Down syndrome," Berube wrote, giving the gist of Singer's remarks with the professor's permission, "he will correct himself in the future."

For non-anecdotal evidence of the abilities of Down syndrome children, Berube steered Singer to the National Down Syndrome Society, and to a 1994 book by two young people with the condition, "Count Us In." But Berube made a broader point as well about kids like Jamie: "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 …"

Being a parent of a Down syndrome youth, Berube said, is not just a matter of countering other people's low expectations for him, but of "recalibrating your own expectations time and time again -- and not only for your own child, but for Down syndrome itself."

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About brainiac Brainiac is the daily blog of the Globe's Sunday Ideas section, covering news and delights from the worlds of art, science, literature, history, design, and more. You can follow us on Twitter @GlobeIdeas.
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Leon Neyfakh is the staff writer for Ideas. Amanda Katz is the deputy Ideas editor. Stephen Heuser is the Ideas editor.

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Guest blogger Sarah Laskow is a freelance writer and editor in New York City. She edits Smithsonian's SmartNews blog and has contributed to Salon, Good, The American Prospect, Bloomberg News, and other publications.

Guest blogger Joshua Glenn is a Boston-based writer, publisher, and freelance semiotician. He was the original Brainiac blogger, and is currently editor of the blog HiLobrow, publisher of a series of Radium Age science fiction novels, and co-author/co-editor of several books, including the story collection "Significant Objects" and the kids' field guide to life "Unbored."

Guest blogger Ruth Graham is a freelance journalist in New Hampshire, and a frequent Ideas contributor. She is a former features editor for the New York Sun, and has written for publications including Slate and the Wall Street Journal.

Joshua Rothman is a graduate student and Teaching Fellow in the Harvard English department, and an Instructor in Public Policy at the Harvard Kennedy School of Government. He teaches novels and political writing.


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