LIFE AS WE KNOW IT: A Father, a Family and an Exceptional Child by Michael Berube (Pantheon: $24, 320 pp.). This important book deals with a wider subject than its title suggests. Michael Berube, an English professor at the University of Illinois who had previously written on public policy ("Higher Education Under Fire"), and his wife, Janet Lyon, discovered in 1992 that their newborn second son, Jamie, had Down syndrome. "Life As We Know It" does indeed describe Jamie's tortuous mental and physical progress and his parents' efforts to provide him with love, medical care and an appropriate education. But it goes further. Berube wants to "represent" his son's claims against those who, in the name of budget-cutting or social Darwinism, would deny Jamie a chance to learn enough to represent himself.
So Berube, in addition to investigating his son's genetic disorder and the history of its treatment (and of society's treatment of the mentally disabled generally), asks big philosophical questions: What do we mean by "normal"? What should the consequences be if a person is "abnormal," "unproductive" or, in the words of a 1927 U.S. Supreme Court decision that upheld involuntary sterilization of the feeble-minded, "sapping the strength of the state"? What policies on prenatal testing and abortion, what kind of educational system, what kind of society, what ethical foundation for that society, would best serve the Jamies of the world? His passion channeled but not muted by his elegant prose, Berube puts in a rare good word for political correctness: It makes a whole lot of difference, he notes, whether his son is a "child with Down syndrome" or a "Mongoloid idiot," as Jamie would have been called a generation or two ago.