- Paperback: 304 pages
- Publisher: Vintage (March 31, 1998)
- Language: English
- ISBN-10: 0679758666
- ISBN-13: 978-0679758662
- Product Dimensions: 5.2 x 0.6 x 8 inches
- Shipping Weight: 7.2 ounces (View shipping rates and policies)
- Average Customer Review: 3.3 out of 5 stars See all reviews (14 customer reviews)
- Amazon Best Sellers Rank: #810,090 in Books (See Top 100 in Books)
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Life As We Know It: A Father, a Family, and an Exceptional Child Paperback – March 31, 1998
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When Michael Berube's second son Jamie was born with Down syndrome, life as he had known it was gone. Suddenly abstract questions the successful academic and author had been too busy to think about were thrust before him. Berube tells how he and his wife came to know this astonishing new person as their son, an individual like their other son and yet who, to the world, was not an individual but the syndrome itself. Berube intersperses the story of Jamie's development with a critical analysis of society's response to disability, the inadequacies of American health care, and a discussion of such issues as eugenics and the priority society gives to budgeting for the disabled. --This text refers to an out of print or unavailable edition of this title.
From Publishers Weekly
The twofold purpose of this impassioned reportage by the parent of a child with Down's syndrome is eloquently achieved by Berube (Higher Education Under Fire). First, he paints a clear picture of his beloved son, Jamie, and of the first four years of his obstacle-strewn life; second, he thoughtfully raises difficult questions "about our obligations to each other individually and socially, and about our capacity to imagine other people." Berube's investigation into the contradictory social effects evoked by clinical procedures in utero, genetic testing and the whole concept of "disabled" children parallels the poignant, intimate chronicle of how he, his wife (also a Ph.D.) and older son cope with the challenge of raising Jamie, whom he describes as "gradually emerging, like a slowly developing Polaroid of a child, into a vivid and indelible creature with a sense of humor." Berube, a professor of English at the University of Illinois, frames advocacy and righteous anger with wry humor. In doing so, he accomplishes the difficult feat of combining an extraordinarily personal narrative with an intelligent, knowledgeable discussion of public issues raised by his private experience.
Copyright 1996 Reed Business Information, Inc. --This text refers to an out of print or unavailable edition of this title.
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Top Customer Reviews
The biggest struggle for Berube as a parent, and for us I believe as a society, is to get beyond -- or change entirely -- the labels given and focus on the persons and capacities behind such monikers. Berube's son, like my three (fortunately not "differently abled") children, is a unique person, and to overemphasize the name given to his condition (or the stereotypes invariably called forth) is to shortchange both Jamie, his parents, and all of us. Berube sensibly does not argue that Jamie would be without problems if everyone failed to name his condition. He makes plain, however, that there is more to destiny and parenting than name-calling. A very important and moving book.
True, in one sense the book is about the happy family pictured on the front cover--Bérubé; his wife, Janet Lyon; their firstborn, Nick; and especially Jamie, born in 1991 with Down syndrome. And that is a book well worth reading, as the author skates Lemieuxlike the daunting line between sentiment and sentimentality, never lurching offside. The story of Jamie and his family is an inspiration, but not of the shallow sitcommy sort. This is a family much like your own, except that they have taken on a challenge you're not sure you ever could. They inspire because they're not sure either, not for a moment, that they can handle it. But after a while the reader notices something that seems to have escaped the author and his family: in living life as they know it, they have not only survived, they have prevailed.
There's another book here, though, a subve! rsive one, a book that the publisher would rather you didn't find out about until after you've made your purchase, 'cause publishers are certain (trust me) that you'd never buy a book like this on purpose. This is a book of--good lord, no!--political philosophy! And that's not the worst of it! It's a potent plea for--dare I say it?--social liberalism!
Let's face it, for a lot of us--certainly for Trent Lott and the Newtlings--the Jamie Bérubés of the world are nothing more than props for that cheap sort of sitcom sentimentality that lets us feel tolerant and open-minded ("Why, the little trooper can tie his own shoes! Good boy!") while we cinch our purses and preach the gospel of social Darwinism. Bérubé senior is having none of that.
Precisely because he sentimentalizes neither Jamie's struggles nor his triumphs, precisely because he represents his son not as type or symbol but simply as a person who gets it right sometimes and screws up sometimes--who, in sho! rt, has to stake out his own 40 acres of humanity, just lik! e every one of us--he makes us see why we owe his kid more than we seem willing to give--his kid, and all the rest of our kids, every one of whom is exceptional.