Life As We Know It

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.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.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.