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.From the Hardcover edition.
Excerpted from Life As We Know It by Michael Berube. . Excerpted by permission of Vintage, a division of Random House LLC. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.