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Literature and Medicine 21.1 (2002) 106-111

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Life Stories:
In Response to Deborah Minter

Michael Bérubé

I have not had to make any decisions about my ten-year-old Jamie that involve fifty-fifty chances that he will lose his bowel function. I have not had to consult with him about his death, contact the Make-a-Wish Foundation, or submit him to chemotherapy. Jamie has Down's Syndrome and will have Down's Syndrome all his life, but on most days, for most purposes, all that means to his mother Janet and to me is that he's sometimes hard to handle, sometimes impervious to danger, always impervious to the benefits of fruits and vegetables, always willful. He does reasonably well with his fourth-grade homework in spelling and math, but has no idea how to write a paragraph describing the differences between his school and an Amish school. And no matter what time we put him to bed at night, no matter how strenuously we've tried to wear him out all day, he will be awake, chirping, and in our bed before seven the next morning.

There exists for our benefit—Janet's and mine—an emergent discourse of Down's Syndrome, a technology of coping, a branch of developmental pediatrics, and a whole literature of stories . . . and essays. I even have the luxury of being impatient with some features of that discourse; I have grown weary of the unreflective insistence on why these kids were "put here," and I sometimes want desperately to criticize that little parable about Italy and Holland. Only once have I broached this subject with another parent of a child with Down's Syndrome: I was in Seattle, giving a talk at the University of Washington, and one of my dinner companions was a woman from the history department who thanked me for contributing to the literature on Down's Syndrome such a stingingly unsentimental book. I thanked her offhandedly, and admitted that actually, I'm quite sentimental about Jamie and can tear up in the middle of the slightest anecdote about his latest adventure in living. "No, that's not what I mean," she said. "It's just that so much of the literature about our kids has been useless to [End Page 106] me, and if I hear about Italy and Holland one more time I swear I'll scream in the street."

I sighed deeply: ah, yes, Italy and Holland. The narrative goes like this: you are prepared for a trip to Italy, you've taken your Berlitz course and bought all your guidebooks, you've been looking forward to the vacation for about nine months, when all of a sudden your pilot announces that the flight has been diverted to Holland. The moral is clear enough: you can gnash your teeth that you've landed in Holland and that all your plans have been dashed, or you can take a look around and realize that, hey, maybe it's not the Italy I planned on, but this here Holland is worth taking a look at on its own merits.

What exactly is the value of criticizing this parable? Surely it helps any number of parents acclimate to the experience of having a child with a disability; surely it reminds thousands of people that the child they've borne may be, in his or her way, every bit as delightful and surprising and engaging as the child they'd expected. If the narrative does good cultural work on that scale, who were we, a pair of professors dining on salmon in Seattle, to complain?

I like to think we were complaining—and finding profound relief in being able to complain—not because we were smartass intellectuals who wanted to hear more about John Rawls and Peter Singer than about Italy and Holland. I like to think we weren't just whining about a parable that has, for some parents of children with disabilities, acquired nearly the iconic status of the Christian-wall-poster narrative of the Footprints in the...


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