Life As We Know It: A Father, a Family, and an Exceptional Child

Books 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.

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.