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.
Kim Zarins on Goodreads wrote:
This book continues the story of Jamie Berube and his family first introduced in the book Life as We Know It: A Father, A Family, and an Exceptional Child. As someone who has family members with Down Syndrome and other special needs, I was an interested reader. I still am. I have often wondered what happened as Jamie grew. Now -- finally – there is an answer.
This book is an interesting mix of a memoir of growing up with a child and an analysis of how we as a society treat and think about those who have Down Syndrome. It is generally organized by subject: Jamie's relationship with his older brother, Nick; healthcare: Jamie's in particular and how our nation treats and insures the sick and disabled; how Jamie's brain responded to the environment in which he was raised and the expectations for individuals with Down Syndrome; Jamie's participation in Special Olympics, martial arts, and golf; and his education and the search for work after high school. The final chapter, The Meaning of Life, looks at disability studies and arguments for and against eradicating Down Syndrome from the population (if you have forgotten that the author is a brilliant academic, this chapter will remind you).
I found the memoir aspects of the book almost unfailingly interesting. ("Almost" only because I would have happily substituted additional travel and, especially, dog stories for what seemed to me an extremely long chapter on sports. If you are a sports fan you will undoubtedly disagree. ) The analysis was compelling, reasoned, and thought provoking. Few books manage to entertain, inform, and change the way the reader looks at an issue. This is one of them, and I’m glad I had the opportunity to read it.
Such a beautiful bond between father and son. I was chuckling so many times--Jamie is hilarious and really steals the show. He listens to his dad like a good young man but does his own awesome twist on everything (e.g., "merci beaucoup" is a terrific improvement from Dad's advice to thank the audience). I loved all the road trips. I made it through the golf bits (golf is soooo boring, but I love how Jamie got exposed to and excelled at so many sports). You could learn a lot about parenting from this book. You could learn about humaning from this book. Jamie's memory skills astonished me, and every time he called his dad Michael, my heart just melted into an even puddlier puddle. If you are going to make a list of books to read, put this book on the list--it is the meta-choice, as you will see. I am wondering if Jamie ever read "The List" in Frog and Toad Are Friends, by Arnold Lobel? I'd want to overhear the Berube family discussing it together, to get Jamie's insights on list making and list-driven adventures.