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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. At four he is like many young people his age, but his Down syndrome leads most people to see him only in terms of his disability.
Twenty years later Jamie is no longer little, though he still loves The Beatles, pizza, and making lists. In Life as Jamie Knows It, Michael Bérubé chronicles his son's growth and his growing love of the world, writing as both a disability studies scholar and as a father. He follows Jamie through the transitions within his family and home life, through his school years, through the complicated process of entering the workforce with a disability. In a book that joins stirring memoir and sharp philosophical inquiry, Bérubé guides us through the labyrinth of ethical issues surrounding how we approach disability and uses Jamie's story to argue for a deeper understanding of disability that challenges us to move toward a more just, more inclusive society.
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By Rebekah Anderson on 08-06-18
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.