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LIFE AS WE KNOW IT by Michael Bérubé


A Father, a Family, and an Exceptional Child

by Michael Bérubé

Pub Date: Oct. 7th, 1996
ISBN: 0-679-44223-5
Publisher: Pantheon

An engaging personal account of raising a son with Down syndrome, by a loving father for whom the experience raises serious questions about the nature of social justice, natural rights, and our obligations to one another. Although BÇrubÇ (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 BÇrubÇ'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 BÇrubÇs were coping, wrote that they seemed ``to be intellectualizing.'' BÇrubÇ's ability to do so is precisely what distinguishes this thought-provoking account from the usual overcoming-handicaps narrative. (Author tour)