Life as Jamie Knows It: An Exceptional Child Grows Up

by Michael Berube

Overview

The story of Jamie Bérubé’s journey to adulthood and a meditation on disability in American life

Published in 1996, Life as We Know It introduced Jamie Bérubé to the world as a sweet, bright, gregarious little boy who loves the Beatles, pizza, and making lists. When he is asked in his preschool class what he would like to be when he grows up, he responds with one word: big. At four, he is like many kids his age, but his Down syndrome prevents most people from seeing him as anything but disabled.

Twenty years later, Jamie is no longer little, though he still jams to the Beatles, eats pizza, and makes endless lists of everything—from the sixty-seven counties of Pennsylvania (in alphabetical order, from memory) to the various opponents of the wrestler known as the Undertaker.

In Life as Jamie Knows It, Michael Bérubé chronicles his son’s journey to adulthood and his growing curiosity and engagement with the world. Writing as both a disability studies scholar and a father, he follows Jamie through his social and academic experiences in school, his evolving relationships with his parents and brother, Nick, his encounters with illness, and the complexities of entering the workforce with a disability. As Jamie matures, his parents acknowledge his entitlement to a personal sense of independence, whether that means riding the bus home from work on his own, taking himself to a Yankees game, or deciding which parts of his story are solely his to share.

With a combination of stirring memoir and sharp intellectual inquiry, Bérubé tangles with bioethicists, politicians, philosophers, and anyone else who sees disability as an impediment to a life worth living. Far more than the story of an exceptional child growing up to be “big,” Life as Jamie Knows It challenges us to rethink how we approach disability and is a passionate call for moving toward a more just, more inclusive society.

Product Details

ISBN-13:	9780807019320
Publisher:	Beacon Press
Publication date:	10/04/2016
Sold by:	Penguin Random House Publisher Services
Format:	NOOK Book
Pages:	232
File size:	678 KB

About the Author

Michael Bérubé is the Edwin Erle Sparks Professor of Literature at Penn State University. The author of ten books, including The Secret Life of Stories: From Don Quixote to Harry Potter, How Understanding Intellectual Disability Transforms the Way We Read, he lives with his family in State College, Pennsylvania.

Table of Contents

Reintroducing Jamie Bérubé

His Brother’s Keeper

To His Health

Brainstorming

On the Fields of Play

School/Work

The Meaning of Life

Afterword

Acknowledgments

Notes

Editorial Reviews

While the author clearly paints the life of an adult with Down syndrome as one hinging on the compassion and understanding of others, he also paints Jamie’s experience and immersion into the world as a story of triumph, bravery, independence, and great self-awareness. An inspiring family scrapbook offering hopeful reinforcement for parents in similar situations.”
—Kirkus Reviews

“Bérubé succeeds warmly at humanizing his son.”
—Booklist

“In brilliantly illuminating prose, Michael Bérubé’s joyful and heartfelt book about his son, Jamie, describes with grace and passion the humanity that we all share, no matter how many chromosomes we possess.”
—Marianne Leone, author of Jesse: A Mother’s Story

“Twenty years after Life as We Know It—his groundbreaking memoir of raising a son with Down syndrome—Michael Bérubé’s Life as Jamie Knows It resumes the story with verve. Bérubé’s narrative is loving, unsentimental, and sharply funny, and his insights into disability are unmatched. A necessary book.”
—George Estreich, author of The Shape of the Eye

“In this poignant and genuine collaboration between father and son, Michael Bérubé draws from Jamie’s lived experiences in school, at work, and on the playing field to reflect on the profound philosophical dilemmas surrounding how we measure human worth. Touching and witty without being sentimental, Life as Jamie Knows It should be required family reading.”
—Rachel Adams, author of Raising Henry: A Memoir of Motherhood, Disability, and Discovery

From the Publisher

2016-08-03
A prideful father further memorializes the life of his son, who was born with Down syndrome.In this sequel to Life As We Know It (1996), Bérubé (Literature/Penn State Univ.; The Secret Life of Stories: From Don Quixote to Harry Potter, How Understanding Intellectual Disability Transforms the Way We Read, 2016, etc.) continues his compassionate chronicling of his son Jamie’s life. This book picks up 20 years after the first and finds the boy in adulthood facing the many challenges of being a productive young man in the sometimes-indifferent modern world. The author addresses these contemporary hurdles through illuminating chapters on his son’s emotional development, the protectiveness and nurturing relationship with Jamie’s older brother, Nick, and Jamie’s complex sadness and confusion when his brother left for college. Embedded in a chapter on his son’s physical well-being are the author’s own perspectives on such topics as unnecessary amniocentesis and the state of American health care. In other sections, Bérubé shares anecdotes on Jamie’s trial-and-error exposures to travel and culture and how he overcame a fear of water to become a competitive swimmer at 17 in the Special Olympics. Perhaps most engaging are the stories of Jamie’s educational accomplishments and subsequent search for gainful employment, which became the subject of a heartfelt 2014 essay. To their credit, both the author and his wife have raised Jamie to the best of their abilities as compassionate parents, though the book is very much told from Bérubé’s own perspective. Janet, somewhat disappointingly, appears much less in this book than in the author’s first, and readers may miss her encouraging voice. While the author clearly paints the life of an adult with Down syndrome as one hinging on the compassion and understanding of others, he also paints Jamie’s experience and immersion into the world as a story of triumph, bravery, independence, and great self-awareness. An inspiring family scrapbook offering hopeful reinforcement for parents in similar situations.

Kirkus Review

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