Life As We Know It: A Father, a Family, and an Exceptional Childby Michael Berube
When James Berube was born in 1991 his parents knew little about Down syndrome other than that it would render their child "disabled." As they sought to understand exactly what this would mean, they learned not only about the current medical and social treatment of developmental disabilities, but also about the history of how society has understood - and failed to… See more details below
When James Berube was born in 1991 his parents knew little about Down syndrome other than that it would render their child "disabled." As they sought to understand exactly what this would mean, they learned not only about the current medical and social treatment of developmental disabilities, but also about the history of how society has understood - and failed to understand - children like James. In telling the story of his son's development during the crucial first four years of life - learning to walk and talk, to move into the world and the lives of those around him - Michael Berube engages the charged issues that each stage of James's growth leads into: I.Q. testing, the politics of education, disability law, social services, health care, and entitlements. Framing these issues is the larger debate, which Berube brilliantly illuminates, over concepts such as social justice, what it means to be human, and, ultimately, what kind of society we value and by what means we determine it. James's story is at the heart of this debate.
Although Bérubé (English/Univ. of Illinois) and his 36-year-old wife, Janet, chose not to have amniocentesis, their decision to forgo prenatal testing, and by implication abortion, is not one he would mandate for others. He argues persuasively that there are some areas of human life in which individuals must be free from political coercion and must be given the private legal space to make exceedingly difficult life-and-death decisions. For him, a larger concern than the abortion issue is the risk that disabled children like his Jamie will come to be regarded by society as unproductive citizens and therefore unaffordable luxuries. By writing about Jamie, he hopes to correct that notion, arguing that such children can become productive and making Jamie's claims on society loudly and clearly. Interwoven with this story of Jamie's physical and cognitive development in the first four years of his life are Bérubé's discussions of the changing laws concerning the rights of the disabled and the various ways in which disabled children are educated. He gives an especially lucid picture of the variability and inconsistency with which individual states handle special education and of the incentives for school districts to segregate students by mental or physical ability. By raising questions about what it means to be human and by showing us that his son is indeed fully human, the author helps us to understand what it is to be a person with Down syndrome.
A staff nurse at the hospital where Jamie was born, taking notes on how the Bérubés were coping, wrote that they seemed "to be intellectualizing." Bérubé's ability to do so is precisely what distinguishes this thought-provoking account from the usual overcoming-handicaps narrative.
- Knopf Doubleday Publishing Group
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- 5.77(w) x 8.59(h) x 1.10(d)
Read an Excerpt
We Americans argue about representation all the time: the representation of poor people in Congress, the representation of African-Americans in the wake of the O.J. trial, the representation of African-Americans who aren't represented by the best lawyers money can buy.
Representations matter. Our world, as William Wordsworth once put it, is that which our eyes and ears half create and half perceive; and it is because Wordsworth is right that we need to deliberate the question of how we will reprsent the range of human variation to ourselves. How we understand people with Down syndrome will become part of what it means to have Down syndrome.
In these pages I have tried to represent my son James to the best of my ability. Nothing I write will redraw a political district; nothing I write will change the chemical composition of Jamie's cells.
My job, for now, is to represent my son, to set his place at our collective table. But I know I am merely trying my best to prepare for the day he sets his own place. For I have no sweeter dream than to imagine that Jamie will someday be his own advocate, his own author, his own best representative.
From the Trade Paperback edition.
Meet the Author
Michael Bérubé is director of the program for research in the humanities at the University of Illinois at Champaign-Urbana. He is the author of five books, including Public Access: Literary Theory and American Cultural Politics, and has written for The New Yorker, The Village Voice, and many academic journals. He lives in Champaign, Illinois, with his wife, Janet Lyon, and their two sons, Nick and James.
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