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

Berube, Michael

Couverture rigide

ISBN 10 : 0679442235 ISBN 13 : 9780679442233

Editeur : Pantheon Books, 1996

Synopsis

When James Berube was born in 1991 his parents knew little about Down syndrome other than that it would render their child "disabled." As they sought to understand exactly what this would mean, they learned not only about the current medical and social treatment of developmental disabilities, but also about the history of how society has understood - and failed to understand - children like James.
In telling the story of his son's development during the crucial first four years of life - learning to walk and talk, to move into the world and the lives of those around him - Michael Berube engages the charged issues that each stage of James's growth leads into: I.Q. testing, the politics of education, disability law, social services, health care, and entitlements. Framing these issues is the larger debate, which Berube brilliantly illuminates, over concepts such as social justice, what it means to be human, and, ultimately, what kind of society we value and by what means we determine it. James's story is at the heart of this debate.

A propos du livre

Extrait

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.

Présentation de l'éditeur

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.

Détails de l'édition

• Éditeur: Pantheon Books
• Date d'édition: 1996
• Langue: anglais
• ISBN 10: 0679442235
• ISBN 13: 9780679442233
• Reliure: Relié
• Numéro d'édition: 1
• Nombre de pages: 284
• Coordonnées du fabricant: non disponible
• Personne responsable: non disponible