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.
