Michael Bérubé

Wow! This exceptional memoir and philosophical treatise on Downs Syndrome and disability proved to be everything I'd expected from the book, and then some. I chose this as one of the books I would be willing to critique for LibraryThing's Early Reviewers because I am shortly looking forward to the birth of our second grandchild, a granddaughter, Abigail Rose, who will be born within two weeks of this writing as her birth is a scheduled C-section. When our daughter told us she was pregnant show more she asked us to pray, as our little Abby Rose was initially termed an at-risk pregnancy, and is still to some extent at-risk. While we of course are hoping that all will be well with our precious granddaughter, we recognize that she, in fact, may be born with a so-called disability which will in no way cause us to love her any less than we do right now and in fact have loved her since the day we learned of her existence. Because of Abby Rose, however, I thought it prudent to read about someone's experience who had raised a child with what was believed to be a disability and discover both the challenges and delights of that experience. Michael and Jamie Berube's book did not disappoint. I am not an academic and thus, the portions of the book that spoke best to me were the anecdotal stories that Jamie and Michael provide of Jamie's maturation experiences. But, even though I approach the philosophical problem of the intrinsic worth of any human being from a much different perspective than Mr. Berube (I am a Christian and unapologetically so), there are many points in his personal philosophical journey with which I can identify. This is an important book and I would recommend it for anyone who has come into contact at any point in their life with someone described as "disabled." Highly recommended. show less

I used to read Michael Berube's blog, so I was familiar with Jamie. On the blog and here in the book Michael Berube, like the best teachers, is patient, clear, and passionate. There's so much fatherly love here but the book never comes close to being sentimental. Instead this is a smart, beautifully written memoir of Jamie's life thus far and a powerful indictment of prejudice. Berube points out that as people with Down's Syndrome have gained access to educational and vocational training, show more their achievements have likewise grown. It's not the people with "limitations" who are the problem, but instead our culture's fears and ignorance of those people and their capabilities. Towards the end, Berube writes that maybe Jamie and those like him are not as "eloquent" as others, but that "maybe it would be a good idea if we humans stopped trying to come up with reasons not to treat each other as equals" (201). That kindness and fairness make this book important reading, even if you're not interested in Down's Syndrome specifically. show less

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 show more 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. show less

Reading Michael Berube's second book, I found that his writing style was accessible and conversational, while also dispensing quite a bit of information about disability studies - in a way that a non-academic could easily understand. I especially appreciated this, as I started the book having not read his first book about life with his son, Jamie, and knowing virtually nothing about Down's syndrome - or rather just enough to be misinformed!

While I am sure that there is a rather wide show more continuum of "disability" and ablilty among persons Down's syndrome, I felt foolish that had never considered how intellectually curious, emotionally sensitive, and "able" those individuals COULD be. If for nothing other than debunking my preconceived ideas in that area, the book is a tremendous gift to the reader.

The sensitivity that Berube shows regarding what Jamie would or would not like to be included in the book was also important, as it reminds the reader that Jamie is not simply the passive subject of his father's memoir/commentary on disability. I also had to chuckle, as the mother of 14-year-old twins, when, in observing that Jamie requires some reminding about maintaining personal hygiene, Berube observes that this is "very much like every American male teenager" - TOO true! show less