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Life as Jamie Knows It: An Exceptional Child Grows Up
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. 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.
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.
- GenresDisabilityMemoir
232 pages, Hardcover
First published October 4, 2016
5 people are currently reading
278 people want to read
About the author
Michael Bérubé
33 books16 followersMichael Bérubé is the director of the Institute for the Arts and Humanities and the Paterno Family Professor in Literature at Penn State University.
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Displaying 1 - 14 of 14 reviews
July 29, 2016
When Bérubé's younger son was small, Bérubé wrote a book about his family's experience parenting a child with Down syndrome. Now that his son, Jamie, is in his twenties, Bérubé has returned with another book.
As a memoir, this is structured non-chronologically; although some things, like Jamie's experience with employment and with the Special Olympics, only came about as he got older and are discussed near the end of the book, there's a fair amount of grouping stories by theme. Travel, for example, is a recurring them from early on. On a personal level as opposed to a disability-studies level (more on that in the next paragraph), I'd say the strongest message Bérubé is trying to send is 'what a good kid my son is'—sometimes a little hit-you-over-the-head but generally a pretty feel-good message.
As well as being a memoir, this is something of a lecture on disability and the way it is treated. Bérubé, with plenty of background in disability studies, spends a significant chunk of the book taking apart various arguments and discussions and putting forth his opinions. He makes some interesting points. I was particularly struck by an anecdote about why he and his wife took teaching jobs at Penn State rather than at the University of Illinois at Chicago (which made a better offer): although UI-Chicago had a very reputable programme in disability studies, the school system was such that to find an inclusive school, Jamie would have to go an hour north. It seemed to me a devil's bargain, says Bérubé. I would get to work in a PhD-granting in disability studies, but my disabled son would be consigned to some special ed arrangement from the 1960s. (141)
I read this, essentially, because I like reading about things. Vague, right? I mean simply that I don't have a particular knowledge of disability issues in general or Down syndrome more specifically; I'm not super interested in the academic/policy end (though 'not super interested' can get me through a lot of reading), but I'm generally a pretty curious person. I especially lovelovelove memoirs and the way they show me situations, and perspectives, that I haven't experienced myself. This works to an extent on that end; certainly Bérubé's is a position I haven't spent a ton of time thinking about. At the same time—and I feel terribly middle-brow saying this—I probably would have found a straight-up memoir (in which every other story did not have to lead to a specific point) more compelling overall. While accessible, this might be one best suited to an audience with a stronger connection to disability studies.
Bits and bobs and food for thought:
In the years after the publication of Life as We Know It, I was warned—repeatedly and emphatically—that it's all very well and good to write about a child with an intellectual disability when your child is young and cute. Children with intellectual disabilities go over best, evidently, when they are young and cute, long before anybody has to worry about things like their adolescent friendships (or lack thereof) and their burgeoning sexuality and their thoughts about mortality and their prospects for employment. Adults with intellectual disabilities are another thing entirely: any number of people...who coo solicitously over a toddler with Down syndrome might find themselves recoiling, either from awkwardness or from outright revulsion, from the adult with Down syndrome who sits down next to them on the bus. (2)
I have yelled at Jamie in the course of his life, a handful of times, always when he is being obstinate to the point of extreme orneriness. (My favorite example comes from his early childhood, when Janet, exasperated by his dawdling before bedtime, issued the ultimatum "Get ready for bed or else," and he replied, in precisely the same tone of urgency, "Else!") (46)
Janet and I had discussed this possibility [of putting Jamie in special ed classes rather than mainstreamed classes] when Jamie was younger, wondering when it would be more useful for him to know how to shop, make his bed, and use public transportation than to know the formula for the volume of a cone. That was our way of marking the difference between "life skills" classes and "regular" classrooms, and beside, who remembers the formula for the volume of a cone, anyway? (I once asked this question aloud in a forum on inclusive education. Unfortunately, I did so in an auditorium full of high school teachers, many of whom shouted out variants of "one-third pi r squared times height." Tough crowd, I thought.) (143)
Note: I received a free copy of this book via a Goodreads giveaway.
As a memoir, this is structured non-chronologically; although some things, like Jamie's experience with employment and with the Special Olympics, only came about as he got older and are discussed near the end of the book, there's a fair amount of grouping stories by theme. Travel, for example, is a recurring them from early on. On a personal level as opposed to a disability-studies level (more on that in the next paragraph), I'd say the strongest message Bérubé is trying to send is 'what a good kid my son is'—sometimes a little hit-you-over-the-head but generally a pretty feel-good message.
As well as being a memoir, this is something of a lecture on disability and the way it is treated. Bérubé, with plenty of background in disability studies, spends a significant chunk of the book taking apart various arguments and discussions and putting forth his opinions. He makes some interesting points. I was particularly struck by an anecdote about why he and his wife took teaching jobs at Penn State rather than at the University of Illinois at Chicago (which made a better offer): although UI-Chicago had a very reputable programme in disability studies, the school system was such that to find an inclusive school, Jamie would have to go an hour north. It seemed to me a devil's bargain, says Bérubé. I would get to work in a PhD-granting in disability studies, but my disabled son would be consigned to some special ed arrangement from the 1960s. (141)
I read this, essentially, because I like reading about things. Vague, right? I mean simply that I don't have a particular knowledge of disability issues in general or Down syndrome more specifically; I'm not super interested in the academic/policy end (though 'not super interested' can get me through a lot of reading), but I'm generally a pretty curious person. I especially lovelovelove memoirs and the way they show me situations, and perspectives, that I haven't experienced myself. This works to an extent on that end; certainly Bérubé's is a position I haven't spent a ton of time thinking about. At the same time—and I feel terribly middle-brow saying this—I probably would have found a straight-up memoir (in which every other story did not have to lead to a specific point) more compelling overall. While accessible, this might be one best suited to an audience with a stronger connection to disability studies.
Bits and bobs and food for thought:
In the years after the publication of Life as We Know It, I was warned—repeatedly and emphatically—that it's all very well and good to write about a child with an intellectual disability when your child is young and cute. Children with intellectual disabilities go over best, evidently, when they are young and cute, long before anybody has to worry about things like their adolescent friendships (or lack thereof) and their burgeoning sexuality and their thoughts about mortality and their prospects for employment. Adults with intellectual disabilities are another thing entirely: any number of people...who coo solicitously over a toddler with Down syndrome might find themselves recoiling, either from awkwardness or from outright revulsion, from the adult with Down syndrome who sits down next to them on the bus. (2)
I have yelled at Jamie in the course of his life, a handful of times, always when he is being obstinate to the point of extreme orneriness. (My favorite example comes from his early childhood, when Janet, exasperated by his dawdling before bedtime, issued the ultimatum "Get ready for bed or else," and he replied, in precisely the same tone of urgency, "Else!") (46)
Janet and I had discussed this possibility [of putting Jamie in special ed classes rather than mainstreamed classes] when Jamie was younger, wondering when it would be more useful for him to know how to shop, make his bed, and use public transportation than to know the formula for the volume of a cone. That was our way of marking the difference between "life skills" classes and "regular" classrooms, and beside, who remembers the formula for the volume of a cone, anyway? (I once asked this question aloud in a forum on inclusive education. Unfortunately, I did so in an auditorium full of high school teachers, many of whom shouted out variants of "one-third pi r squared times height." Tough crowd, I thought.) (143)
Note: I received a free copy of this book via a Goodreads giveaway.
December 10, 2021
I had no idea there was a "sequel" about Jamie growing up. I enjoyed it very much. It reminded me a lot of _Adventures in the Mainstream_ by Greg Palmer (travel, how hard it is for an adult with Down Syndrome to find a job.) In the 1990s when I read the first book about Jamie, I was very interested in the academic/bioethics/philosophical portion of that book. Now that I'm old and jaded, I was not very interested in that side--yeah, I get it, life is complex and a lot of bioethicists like Peter Singer are knobs. I just wanted to read fun stories about Jamie losing his retainer and doing Special Olympics and stuff like that. This all sounds very flippant, but for anyone who doesn't already see people with disabilities as their own individual selves and worthy of respect, this book can show them. Bérubé's book also illustrates how a child with Down Syndrome's infancy/earliest years can be pretty fraught or scary, maybe with surgeries and feeding tubes, and then perhaps become closer to the fare that parents expect, with their kids having trouble with school or dating. I appreciated the author's care in not revealing things his son didn't want him to and trying not to speak for him.
September 3, 2017
Full disclosure: Berube was one of my all time favorite professors, so I'm sure that I'm a bit biased in my assessment of his writing, but I truly enjoyed this book and can hear the artful storyteller that he is in every line. As a mom, I could relate to the stories of raising a young person, wanting to give space for growth and independence, while also wanting to keep your people safe. I also love the way that Berube presents Disability Studies and activism in a way that is stimulating, motivating, and provocative, but also completely accessible and human. I loved "Life as We Know It" (released when Jamie was very young), but I learned so much more from Jamie and Michael's perspectives now that Jamie could be a more active and complete contributor. A great read.
June 23, 2019
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.
July 9, 2023
The parts about Jamie, as well as Michael's self reflection on raising Jamie, were stellar. Jamie's deflation after listening to the interview questions at the employment assistance agency - ugh. We go through this every year with my son's medicaid wavier, with me wishing every year that he wasn't ever more able to understand the questions. This book was SO RELATABLE in those parts, despite the rather high functioning of Jamie and the extremely privileged life of the family. These parts get five stars.
And then there were the parts where Michael droned on about his political thoughts. Many of these were in easily-skimmable chunks, but the book was peppered throughout with obnoxious political asides. These parts get 1 star, because at least it had good grammar.
And then there were the parts where Michael droned on about his political thoughts. Many of these were in easily-skimmable chunks, but the book was peppered throughout with obnoxious political asides. These parts get 1 star, because at least it had good grammar.
August 30, 2017
Story of Jamie's early school years up to early20's.
I enjoy true stories about people and I enjoyed Jamie's triumphs, his growth in certain areas, and also his interactions with others.
I'm a retired teacher. The book started out as a 5 star for me but dropped to a 3 star when it got technical or I guess a manual for those in the business or a required book for a college course.
All in all it was a good book although I skipped some pages.
I enjoy true stories about people and I enjoyed Jamie's triumphs, his growth in certain areas, and also his interactions with others.
I'm a retired teacher. The book started out as a 5 star for me but dropped to a 3 star when it got technical or I guess a manual for those in the business or a required book for a college course.
All in all it was a good book although I skipped some pages.
January 20, 2020
Bereube provides first hand insight on raising his son with Down syndrome. As a scholar of disability, his perspectives are both authoritative and deeply personal.
April 7, 2022
One of my few 5 star ratings. Such a great writer.
August 31, 2016
Life as Jamie Knows It, by Michael Bérubé, is in many ways a typical memoir of a parent’s fears, frustrations, and joys. The difference is that Bérubé’s son has Down syndrome. Bérubé successfully avoids the maudlin, and succeeds in introducing the reader to a young man deserving of our respect, but never our pity. Bérubé has clear biases regarding a variety of issues impacting his son, education, medical care, and governmental bureaucracy foremost among them, but he is honest about them. Any parent will relate to what Bérubé has to say on these and other topics that we deal with every day.
Among the most interesting parts of this book is Bérubé’s discussion of Down syndrome as a “disease” that might be eradicated. I confess that before reading this book, I would probably have agreed that if Downs could be completely done away with, as we have eradicated smallpox, that would be a good thing. Bérubé, however, presents the rather convincing argument that this is not a disease to be conquered, but a different way of being human that requires all of us to accept others in all their many forms. Perhaps Jamie Bérubé can be the catalyst for us to pursue acceptance rather than assimilation, and to encourage everyone to be who they are rather than trying to become the societal ideal.
Personally, I feel that Bérubé’s book will ultimately be one that truly transforms my life. I have a child with attention deficit disorder. I do not mean to suggest that the medical issues she will face in life are in any way comparable to those Jamie Bérubé has had to deal with. But reading this book has made me consider more carefully how and why I seek treatment for her. The pills she takes enable her to focus in school and get better grades. But would she be better off without those pills? Before she started them she was upset and frustrated by her inability to follow the school lessons. But is part of her frustration due to my insistence on doing her best in school, or following in the footsteps of two older sisters who excelled in academics? The medication suppresses her appetite, so we don’t give her pills during the summer in the hope of “bulking her up.” But are we hurting her by allowing her emotions to pinball around? Is ADD necessarily a bad thing? Is it bad for her? Is it just a part of who she is that we should respect and not try to control? Should we encourage her to learn how to deal with it without the use of medication? I’m not sure what the right answers to these questions are, but I hope that by thinking about them, I will be able to be a better parent, and help my daughter grow up to be the adult she was meant to be. And I believe that Bérubé’s example of helping his son become the person he was meant to be will positively impact our family.
Among the most interesting parts of this book is Bérubé’s discussion of Down syndrome as a “disease” that might be eradicated. I confess that before reading this book, I would probably have agreed that if Downs could be completely done away with, as we have eradicated smallpox, that would be a good thing. Bérubé, however, presents the rather convincing argument that this is not a disease to be conquered, but a different way of being human that requires all of us to accept others in all their many forms. Perhaps Jamie Bérubé can be the catalyst for us to pursue acceptance rather than assimilation, and to encourage everyone to be who they are rather than trying to become the societal ideal.
Personally, I feel that Bérubé’s book will ultimately be one that truly transforms my life. I have a child with attention deficit disorder. I do not mean to suggest that the medical issues she will face in life are in any way comparable to those Jamie Bérubé has had to deal with. But reading this book has made me consider more carefully how and why I seek treatment for her. The pills she takes enable her to focus in school and get better grades. But would she be better off without those pills? Before she started them she was upset and frustrated by her inability to follow the school lessons. But is part of her frustration due to my insistence on doing her best in school, or following in the footsteps of two older sisters who excelled in academics? The medication suppresses her appetite, so we don’t give her pills during the summer in the hope of “bulking her up.” But are we hurting her by allowing her emotions to pinball around? Is ADD necessarily a bad thing? Is it bad for her? Is it just a part of who she is that we should respect and not try to control? Should we encourage her to learn how to deal with it without the use of medication? I’m not sure what the right answers to these questions are, but I hope that by thinking about them, I will be able to be a better parent, and help my daughter grow up to be the adult she was meant to be. And I believe that Bérubé’s example of helping his son become the person he was meant to be will positively impact our family.
October 14, 2016
Michael Bérubé is a scholar of disability studies and father of a young man with Down Syndrome, his son Jamie who is now out of school and trying to make his way in the adult working world. Bérubé chronicles the passage of Jamie through school, sports, family life, travel, and becoming independent. In one way, Jamie was lucky to be born to two such academic parents who bring many tools and knowledge into the challenges of raising a disabled child. On the other hand, they have no doubt become more resilient and accomplished as a result of these challenges. Bérubé states that he "learned to do stuff I didn't know I was capable of doing." Bérubé writes that Jamie is "bright, gregarious, even ebullient in social gatherings".
Bérubé discusses many aspects of bearing and raising a disabled child, including whether life is worth living with a significant disability. He states that their journey has been more complex and wonderful than they could have dreamed, but he doesn't purport that their choices are the choices all parents should make. He speaks warmly of Special Olympics and their motto that people with intellectual disabilities are "human beings, deserving of love, opportunity and acceptance just as they are." He discusses very bluntly the pressure to terminate pregnancies rather than deal with a disabled child. He also discusses the societal pressure to find a "cure" for Down syndrome. He constantly reminds us that disability is not the same as disease. While diseases may be treated or eradicated, disabilities will continue to exist.
Now that Jamie has become a young adult, Bérubé has become an advocate for ways to integrate people with disabilities into the community and to find meaningful employment. The final chapter of the book titled "The Meaning of Life" was rather too academic for me, but I appreciated the overall tone of this well written book on an important topic.
Bérubé discusses many aspects of bearing and raising a disabled child, including whether life is worth living with a significant disability. He states that their journey has been more complex and wonderful than they could have dreamed, but he doesn't purport that their choices are the choices all parents should make. He speaks warmly of Special Olympics and their motto that people with intellectual disabilities are "human beings, deserving of love, opportunity and acceptance just as they are." He discusses very bluntly the pressure to terminate pregnancies rather than deal with a disabled child. He also discusses the societal pressure to find a "cure" for Down syndrome. He constantly reminds us that disability is not the same as disease. While diseases may be treated or eradicated, disabilities will continue to exist.
Now that Jamie has become a young adult, Bérubé has become an advocate for ways to integrate people with disabilities into the community and to find meaningful employment. The final chapter of the book titled "The Meaning of Life" was rather too academic for me, but I appreciated the overall tone of this well written book on an important topic.
December 28, 2017
I did a full review at 3 Quarks Daily: http://www.3quarksdaily.com/3quarksda...
I also wrote an analysis of Jamie's art work, Jamie's Investigations: The Art of a Young Man with Down Syndrome: https://www.academia.edu/29195347/Jam...
I also wrote an analysis of Jamie's art work, Jamie's Investigations: The Art of a Young Man with Down Syndrome: https://www.academia.edu/29195347/Jam...
November 16, 2016
A wonderful and insightful follow up to his original book, Life as We Know It about the distinct joys and challenges of raising a child with Down Syndrome. Michael's writing is utterly engaging and also thought provoking and the book is relevant to all parents of exceptional children.
December 19, 2017
“I think that maybe it would be a good idea if we tried instead to treat people with intellectual disabilities, mild to severe, as if they are people who matter, people worthy of attention, support, and care”
July 17, 2016
It was ok. I won this book from goodreads.
Displaying 1 - 14 of 14 reviews