When Jamie Bérubé was born with Down syndrome in 1991, he was immediately subject to the medical procedures, insurance guidelines, policies, and representations that surround every child our society designates as disabled. In this wrenching yet ultimately inspiring book, Jamie's father, literary scholar Michael Bérubé, describes not only the challenges of raising his son but the challenge of seeing him as a person rather than as a medical, genetic, or social problem.
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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.From the Back Cover:
"An astonishingly good book, important, literate and ferociously articulated." --The New York Times Book Review
"Outstanding . . . deeply affecting." --Portland Oregonian
"Eloquent . . . compelling . . . a humane and entirely necessary book." --Cleveland Plain Dealer
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