Life as Jamie Knows It

An Exceptional Child Grows Up

De: Michael Berube

Narrado por: Brian Roberts

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.

Reseñas de la Crítica

“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

An Exceptional Sequel

In his first book about his son Jamie, Life As We Know it, Michael Berube writes candidly about discovering that his newborn son had Down Syndrome, and all the medical, social, political, and philosophical systems that surrounded him in his first few years of life. In this sequel, Berube picks up where his first book left off, painting a picture of child, adolescent, and young adult Jamie, and the things both of them have learned about Down Syndrome and life in general.

I absolutely love Berube's writing. He interweaves his family anecdotes with exceptional journalism on every conceivable relevant topic. He is unflinching in his descriptions of parental hardships and oversights, and gives pride of place to Jamie's experience whenever he can. The narrative includes an essay written by Jamie, many quotes in which Jamie explains his thoughts and opinions, and editorial notes in which Berube explains the conversations he and Jamie had about the book. Berube is very aware of the importance of allowing Jamie to be his own advocate, even when his disabilities make that a challenge.

Life as Jamie Knows it is unflinching, honest, and emotionally powerful. I nearly cried several times listening to it. As a person with a disability, I don't usually get sentimental about portrayals of children with disabilities, which are usually overly dramatized and patronizing. This portrayal is not. It is loving, funny, painful, sweet, and beautiful. I highly recommend this book to anyone with an interest in Down Syndrome or disability.