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February 22, 2005

Life As We Know It

I was reading Thomas Frank's What's The Matter With Kansas this weekend. It's a good book so far, though I'm stunned that any liberal pundit could read this eloquent telling of plain, obvious fact and find it surprising or "eye-opening." [ed. note: I'm also stunned that I originally got the title so badly wrong. Thanks to my brother for the correction.]

I was about halfway through the first section of the book when a package arrived. It was another book. I put down the Frank and picked up the new book, Life As We Know It: A Father, a Family, and an Exceptional Child by Michael Bérubé. I devoured it in a day and a half.

In 1991, Bérubé and his wife Janet became parents of Jamie, their second son, born with the rather common chromosomal anomaly that causes a suite of conditions collectively known as Down's Syndrome. The book is a rather intensely personal rumination on disability, intelligence and mind, politics and health care and the meaning of meaning. Bérubé, a lit professor at Penn State, writes with a disarming self-deprecation that will be familiar to readers of his blog. He doesn't succumb to the tempting mawkishness that is probably close to inevitable when writing about plucky, upbeat kids like Jamie. Where some (myself included) would have powered the discussions of political issues - especially as regards access to education, or the heinous early stereotypes of and prognoses for Down's kids - with a fair amount of anger, Bérubé's hand is restrained. He does not compromise his left P.O.V., but you get the feeling he's used to discussing heated issues so as not to wake the kids. That hearth-side feeling is central to the book, the best I've read in years on any aspect of fatherhood. It isn't giving much away to mention that the ending is upbeat: you can see happy photos on Bérubé's site of now-adolescent Jamie eating pizza and enjoying family trips.

Especially striking was the very end of the book, in which Bérubé addresses a conflict inherent in writing about disabilities which the writer doesn't share. About twenty years ago I went out to eat with my friend and occasional boss Herb, who was in what we then thought were the later stages of Amyotrophic Lateral Sclerosis, Lou Gehrig's disease. Herb was a quadraplegic, fully able to converse but confined to a power wheelchair he piloted with his chin. (Yes, yes, I know, he was also freed by his wheelchair.) The waiter took my order, then asked me what Herb wanted, and I stuttered in disbelief. Herb answered politely. The waiter wrote down Herb's order, then asked me what Herb would like to drink. Someone with two 21st chromosomes is in much the same situation as I was when he writes about a person with three, even if that person is his toddler son at the time words are set to print. Bérubé handles the issue elegantly, saying at the book's end that his intent has been merely to set a place for Jamie at the discursive table. When Jamie's ready, Bérubé says, he'll speak for himself. I look forward to that, and will set aside whatever I happen to be reading when the UPS guy delivers Jamie's book.

Posted by Chris Clarke at February 22, 2005 10:45 PM TrackBack URL for this entry:

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Thanks, Chris, for this positive start to my day today.

Posted by: beth at February 23, 2005 06:20 AM
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It is indeed a fabulous book. I am also the parent of a child with Down syndrome and Michael's book was the first one I read that didn't call people with DS "special angels" or other saintly labels. Because of that reading more than 5 years ago, Michael was my first choice for a keynote speaker at our Canadian Down syndrome conference (which my city is hosting in May/05). I'm so thrilled he said yes and look forward to his talk.

Posted by: Clare at February 23, 2005 07:42 AM
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Sounds like a good conference, Clare. Will proceedings be made available online?

I should note parenthetically that I am aware of the tussle over the proper orthography of the name of the syndrome, and chose the possessive apostrophe more or less at random out of professed ignorance of the issues invoolved.

Posted by: Chris Clarke at February 23, 2005 09:31 AM
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That's a good question. We are making a CD for all participants with each speaker's notes. I suppose we could do something with that. It's more of a family conference rather than a professional one but we have some great speakers.

And don't worry about the apostrophe (or lack of one). It's more a matter of style than substance. In NA we don't use it, in Britain and other places they do. I'll admit to cringing when someone exclaims, "Oh cool - I didn't know you had a Downs," but that's another issue altogether.

Posted by: Clare at February 23, 2005 10:07 AM
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Yikes. Another several issues, I should think.

Posted by: Chris Clarke at February 23, 2005 01:05 PM
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Hello, Down, not Down's syndrome. Small point, guess I feel guilty about using that damn apostrophe.

Posted by: dr at February 23, 2005 04:48 PM
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Ok, Bub... my turn to correct you. The actual name of the first book you mentioned is What's the Matter with Kansas? Full title: What's the Matter with Kansas? How Conservatives Won the Heart of America.


Double HA!

Posted by: Craig at February 23, 2005 10:08 PM
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Bérubé writes at some length about the apostrophe issue in his book. Suffice it to say that there are people of good will on each of the several sides.

Thomas Frank's book, What the Hell Happened To Be the Matter With Kansas, is definitely worth reading, even if you know everything in it already. Frank spells out the process by which working class people became persuaded that voting in the interests of the very rich was a good idea.

And I think I know now, having finished the book, why liberal pundits call iit "groundbreaking" and "eye opening." It's because Frank's last chapter is a searing indictment of the Democratic Party's move to the right, not just on moral grounds - which the DLC answers with pragmatic tactical concerns - but on those very same pragmatic tactical concerns. Frank says "here is why the DLC's strategy is inevitably an absurd failure." And I suspect that since they can't rebut his point, they'll just hail the book as "groundbreaking" and hope interest in it subsides.

Frank doesn't let the left off the hook, either. And justifiably so. He points out how the left essentially abandoned the unions startng in the 1960s, which rang true to me. Even in rock-solid union town Buffalo in the progressive 1970s, we lefties definitely thought of AFL-CIO activists as some sort of quaint species of beast with whom we felt we really ought to make common cause, but somehow they just seemed too uncool to actually hang out with.

Posted by: Chris Clarke at February 24, 2005 07:45 AM
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