Life As We Know It: A Father, a Family, and an Exceptional Child

by Michael Bérubé

When Jamie Bérubé was born with Down syndrome in 1991, he was immediately subject to the medical procedures, insurance guidelines, policies, and representations that surround every child our society designates as disabled. In this wrenching yet ultimately inspiring book, Jamie's father, literary scholar Michael Bérubé, describes not only the challenges of raising his son but the challenge of seeing him as a person rather than as a medical, genetic, or social problem.

Genres: Memoir, Nonfiction, Disability

304 pages, Paperback

First published January 1, 1996

About the author

Michael Bérubé is the director of the Institute for the Arts and Humanities and the Paterno Family Professor in Literature at Penn State University.

Reviews

[Clare · Rating 5 out of 5]

Absolutely the best book about parenting a child with Down syndrome. So many books make these kids out to be super-human, like angels, sent from above. I'm fine with whatever your faith leads you to believe, but Michael's approach to people with disabilities as participating citizens is really refreshing. He has a very accessible writing style and infuses humour throughout. My son and Jamie are the same age and now that they're both in high school I think a sequel is long overdue.

[Karl Steel · Rating 5 out of 5]

Seems that most of my reviews respond to other reviews....

Currently, the only other review for this book refers to it as prone to "ranting, pontificating or just being condescending." Clearly the reviewer has Bérubé mixed up with David Horowitz, or perhaps the stable of writers at the National Review. Bérubé's prone to sarcasm, of course, but reading him and taking him to task for his sarcasm is akin to taking Smokey Robinson to task for plaintive smoothness. Sheesh. Know your authors.

Furthermore, there's a reason MB writes about ethics, politics, social policy: because all of these matters directly affect how his son James can live, and because he wants to develop an ethics and politics that doesn't fall into the trap of pure discursive contingency or faith in some transcendental signified (a term he doesn't use in this book, but the idea's there).

Can I take the book to task for some things? Yes. Its falls into a neat anthropocentrism at its end, setting up a relation between 'self awareness' and ethics: sounds to me like Tom Regan's 'subject-of-a-life' and other rights-based ethics. But as these ideas didn't begin to become commonly known as problematic until recent years, Bérubé simply didn't know. Maybe.

Oh, it's about his son James, who has Down Syndrome. It's very moving. Should be supplemented with the 'Jamie' material in 'Rhetorical Occasions.'

[Alaina · Rating 5 out of 5]

Wonderful, caring, and thoroughly unsentimental book. I really enjoyed how the author infused his personal experiences & anecdotes of raising his child, Jamie, along with how those experiences relate to philosophy and language (and how philosophy and language, in turn, influence our social systems and politics). I most appreciated the questions the book asked and how it compels the reader to imagine people with Down Syndrome as people deserving of full participation in public life, and how that act of imagination and empathy is key to creating a world where that can happen.

[Melody · Rating 4 out of 5]

Life As We Know It: A Father, A Family, and an Exceptional Child is part memoir, part philosophical reflection part social and political commentary: the curious academic genre known as “autocritography.” For Michael Berube, a young academic at the time his youngest son Jamie was born with Down syndrome, this book grapples with how the theories that shape his academic work also inform his personal life. Evolution and postmodern philosophy lead Berube to reject the notion that human beings are inherently valuable, but his work tries to make society a better place for all human beings. He demonstrates that extreme representations of Down Syndrome children—as either radically incapable at one extreme, or as miraculous gifts at the other—limit our ability to imagine a world in which people with Down Syndrome are understood to be capable of participating in public life. Drawing on theorists as diverse as Foucault, Wittgenstein, Habermas, and Rawls, he critiques Western society’s tendencies to view people as objects, and offers a celebration of society’s creation of social systems that support parents caring for a Down Syndrome child. Regardless of whether you agree with Berube’s philosophical positions, his challenge to live as people of empathy and imagination will be welcome to all who long to create a more just world.

[Ron Christiansen · Rating 4 out of 5]

Recommended by Middlebrow, as many books here have been. A wonderful combination of theory and life.

[eagerreader · Rating 3 out of 5]

The book is a direct description of what it's like for Bérubé to have a child with Down syndrome, with the unique perspective of 1. Being a philosophy professor and 2. Opting to not have prenatal testing, so they were surprised during their son Jamie's birth. The early ethical descriptions and details about raising Jamie are captivating. Towards the end of the book, the sections about different philosopher's approaches to an ethical issue were distracting -- I ended up quickly skimming and skipping pages towards the end, which I never do while reading.

Overall, I would recommend this book to people who are interested in the topic of prenatal testing, Down syndrome, and healthcare overall to get a unique perspective on the matter. Bérubé excelled at representing both sides of the issue, and instead wants more emphasis to be on the existing children and adults with Down syndrome.

[Bartosz Bartkowski · Rating 4 out of 5]

If you expect a simple narrative story about raising a child with Down syndrome, this is the wrong book for you. Somewhat meandering at times, Bérubé is pondering about the place of people with disabilities in modern societies, our representation of them, our expectations of them, our responsibilities towards them. He does this at multiple levels, from the very practical everyday struggles of being a parent of a child with Down syndrome through political questions of regulations and funding to deeply philosophical issues of difference and uniqueness and justice. Overall, a pretty great and thought-provoking read. I stumbled here and there upon (minor) statements that I found somewhat naïve and/or simplistic, and the meandering can be somewhat challenging at times. But these are minor flaws in an overall great read.

[Diane · Rating 4 out of 5]

This is an inspirational book. The book deals with the challenges and small, but encouraging victories of raising a child with Down Syndrome. Even though the story will make the reader weep at times, there's much hope as well.

[Chelsea · Rating 2 out of 5]

ok... i hate to do this. i usually don't. but i just can't finish this book. i am actually having a feeling of dread everytime i go to read it.

i really enjoy the parts where he talks about his son and their family but there are many, many parts where he moves into heavy political and social commentary/analysis. don't get me wrong... i think the things he is writing about (abortion, health care, etc.) are extremely important and must be addressed... but to be frank... he often sounds like he's ranting, pontificating or just being condescending. or maybe i just have trouble focusing.

a better book on this topic is "choosing naya". can't remember the author. doesn't seem to be listed here.

i think there are people out there who would benefit greatly from this book... i'm just having a hard time with it.

[Lynne · Rating 4 out of 5]

An interesting discussion of a father's angst about his son born with Down's Syndrome and what it entails to raise him in today's world. Michael Berube' is a literature professor at University of Illinois, and he covers a wide range of topics in this book, from medicine, abortion, genetics, occupational therapy, language, economics, legislation, ethics and philosophy and how those help shape and define our perceptions of individuals, particularly physically and intellectually challenged individuals, and their context in "society." Although it was written in 1996, the issues the author raises are still pointedly relevant today. Surprisingly so, particularly when he comments on conservative pressure to cut back on government services and education funding. Well worth the read.

[Rebekah · Rating 2 out of 5]

I don't know what to classify this as...it's part memoir, part history of special education, half philosophical musings. Not what I expected it to be. I had thought it would be something of a memoir, with a parent's look at the special ed system, but it was less memoir and much more musings on systems of all sorts--from health care to language to inclusion to altruism. By the end, I just couldn't take any more philosophy--I need something more tangible just now. But it was still an interesting read and helpful to look at my work and everything I'm being taught through the eyes of a parent who lives it every day.

[Jennifer · Rating 5 out of 5]

As I told the author (who is, admittedly, one of my all time favorite professors): I enjoyed this book when I first read it, as a twentysomething with no clear plans to ever have children. But now, as the mother of two children, both exceptional in their own ways, I recognize this not just as an excellent exploration of the philosophical issues surrounding the rights of children with Down Syndrome, but also a powerful narrative that reflects the experiences of children and parents in many distinct situations trying hard to make sense of what it means to raise children who are outside the larger society’s picture of “normal” (whatever that is).

[Karen · Rating 4 out of 5]

My parent's closest friends lived next door and they had a daughter with Down's syndrome who was my frequent playmate. She was 4 years older than me and very high function so I have a very special place in my heart for kids with Down's. Berube's book was great in many ways - he was very open about his experiences and he raised many interesting moral questions. Two things I didn't like was that he sometimes switched into a very dry, professorial style and that he wrote this book while his son was still so young so it doesn't really get to talk about anything beyond preschool. I think a sequel is in order!

[Chloe · Rating 3 out of 5]

This is an easily readable, snappily written (sometimes annoyingly so) memoir by an English professor whose younger son has Down Syndrome. It's smart and well-observed and has a particularly thoughtful discussion about abortion and prenatal testing. There are plenty of touching moments -- including the son's various hard-fought developmental milestones and the father's inability to remember parts of the traumatic immediate aftermath of his son's diagnosis -- but sometimes it feels a bit too cheerleadery.

[Julia · Rating 4 out of 5]

An English professor at University of Illinois (now he's at University of Pennslyvania) married to the same, have a son with Down Syndrome. This is a review of many of the books and popular press on the subject, his opinions on abortion, and how that relates to a Down diagnosis, which he discusses for quite awhile, and views of critical thought on difference, on Foucalt, on postmodernism, on special education law. It's well- written and immediate, reads fast and according to an interview Berube did last year, he and Jamie are considering writing a follow- up.

[Greg · Rating 2 out of 5]

I was pretty disappointed with this. I felt it was going to be a father's reflections on raising a son with Down Syndrome. While there were moments and stories that really impacted me because I could relate to them in my own experience or anticipate them in my future, I wanted this for the whole book. Instead, Berube uses this as an opportunity to engage in persuasion regarding political philosophy and policy. Interesting and important though it may be, it wasn't what I was looking for. And seeing as I just read Sandel's "Justice" I didn't need the philosophical primer again.

[N Kathleen · Rating 4 out of 5]

Berube, a literature scholar, writes about becoming the father of a son with Down Syndrome. Part narrative, part philosophical, ethical, moral discourse about the issues that arise from perceived choices we make about raising children with disabilities. Worth re-visiting some of the philosophical issues, with reference books on deck to help illuminate his brief discussions of various issues. Useful as part of a literature collection revealing the broad spectrum of perspectives on parenting, schooling and fatherhood of children with disabilities.

[Jennifer P · Rating 2 out of 5]

For school. This was for a book group we had to do as part of our class. I chose it because I thought it would be more about what it's like for a parent of a child with down syndrome. Unfortunately, that was just a very small part. The rest of the book was very political and I didn't care for it at all.

[Evelyn · Rating 4 out of 5]

True story of life with a Down Syndrome Child. Good but about half of the book was the author philosophizing about the government and education. Good but I was hoping for more details about the family. This was written in 1996 and Jamie would be nearly 20 now. I am wondering how he is doing but can't find any sequel.

[AshishB · Rating 4 out of 5]

1st of all this book makes you realize how lucky you are to be born with no complications, How good is being normal.
I was emotionally overwhelmed while reading this book. story is indeed heart trembling...It's very moving.

Author presented the effects of condition called down syndrome on the society in philosophical and political point of view.

A must read for every one...

[Maria B · Rating 3 out of 5]

A bit preachy but generally informative. I got the feeling that Bérubé was angry while he was writing this. That's okay, but it's hard to slam through all that negativity in two days - which I had to do for the class the book was assigned.

[Cate · Rating 4 out of 5]

One of the better things I've read about Down syndrome. It gets a little academic at times (especially when he gets into philosophers), but overall a good read and one I'd recommend.

[Jenny]

For Interim this year . . .

[Eliza · Rating 4 out of 5]

This book is about a literary critic whose son has Down Syndrome.

[Vanessa · Rating 3 out of 5]

Powerful and honest and heartfelt!

[Brenton · Rating 2 out of 5]

Not what I was expecting. I thought the author was definitely earnest, but I don't know who the target audience is for. Pro-choice literature PhDs who have children with mental disabilities?

[Jessica · Rating 4 out of 5]

Beautiful.

[Monica · Rating 4 out of 5]

A bit over my head w the philosophy, but very good.

[Jtp · Rating 3 out of 5]

true of academics....a little too theoretical.....could have been 50 pages shorter....otherwise a nice treatise on the nature of (dis)ability....