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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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Product Details

  • Paperback: 304 pages
  • Publisher: Vintage (March 31, 1998)
  • Language: English
  • ISBN-10: 0679758666
  • ISBN-13: 978-0679758662
  • Product Dimensions: 5.2 x 0.7 x 8 inches
  • Shipping Weight: 7.2 ounces (View shipping rates and policies)
  • Average Customer Review: 3.6 out of 5 stars  See all reviews (13 customer reviews)
  • Amazon Best Sellers Rank: #412,090 in Books (See Top 100 in Books)

Editorial Reviews

Amazon.com Review

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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Customer Reviews

3.6 out of 5 stars

Most Helpful Customer Reviews

40 of 44 people found the following review helpful By A Customer on August 4, 1998
Format: Paperback
This is not exactly the book its publisher would have you think it. It is a much better book, and a much scarier one.
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.
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11 of 12 people found the following review helpful By A Customer on November 14, 1998
Format: Paperback
Michael Berube's Life As We Know It is both one parent's memoir of raising a Down Syndrome boy and a larger exploration of how our society views those different from the "norm." Berube and his wife had no idea their second child would be "disabled" at birth, and much of the book recounts their joy and struggles in raising Jamie, a very unique and special boy. However, Berube's book also has a larger purpose and context. He tackles how our society labels persons like Jamie, and how this use of language influences the child's outcome. For example, in the early part of this century, the common medical name for Jamie's condition was "Mongoloid idiot." This term certainly expressed what society thought such children were capable of; predictably, the common medical strategy was to give up on these children, institutionalize them, and move on. With the passage of time, terminology has changed, and Berube argues that this change both reflects and directs society's view of its members.
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.
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9 of 11 people found the following review helpful By A Customer on March 5, 1999
Format: Hardcover
This book works best as memoir. Berube is very moving when he describes the first years of his son's life. I too am the father of a boy with Down's syndrome and can vouch for the clarity and truthfulness of the account. The book's many digressions into politics and philosophy could put off some readers, but most of them are well-worth reading and pondering. I only wish they hadn't interrupted the flow of the personal story. The only sidebar I really disagreed with was the one on abortion. It was too strident (Berube is pro-choice), especially coming from someone well-placed to see both sides of this issue. That said, I would recommend this book to any parent of a mentally retarded child, or, for that matter, to any citizen concerned about the place of disabled people in our society. I hope Berube writes another book ten years from now and lets us know how Jamie is doing.
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4 of 5 people found the following review helpful By Kathryn Young on October 2, 2005
Format: Paperback
Berube writes a compelling book about his struggles to remain true to the parent/child relationship with his son who is diagnosed with Down's syndrome. Berube's book does a nice job of showing a different side of Downs syndrome - one where a child is a child, not someone (thing) to be feared, locked away or pitied. He writes clearly about the pressures to medicalize his son (meaning talk about him in the ways doctors would) since the medical world is such a part of their history with him. He tells of how he and his wife work to maintain decisions that are respectful of the child they are raising. Berube does a great job of explaining medical processes while also telling where they fall short, how they apply differently to different people and how he can continue to see others' points of view and wish more people could see his. Berube brings up big issues like abortion and (public vs private) health care to name a few. He relates his personal feelings to larger social conditions like how our society treats people with disabilities (which is not very well). This is a must read for teachers, doctors, nurses, and infact everyone, since we, as a society, need to work on seeing disabled people as people.
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