Farewell to a Blogger: On Michael Bérubé and Life As We Know It
When she heard that Charlie had been diagnosed with autism back in 1999, a very good friend urged me to read Life As We Know It: A Father, a Family, and an Exceptional Child (1998) by English professor Michael Bérubé. The title immediately caught my ear: I had already gotten a taste of how life as I had thought I had known it was changing rapidly, with my new knowledge that Charlie was disabled. (I should add, while the road has been at times rocky, Charlie has brought us into some very fine adventures.) We bought the book when we saw it at the bookstore, but it sat for some time on our shelves, as we read our way through autism book after autism book, most of a very practical nature like this or this.
Bérubé and his wife, Janet, were both English professors at the University of Illinois and the parents of Nick when their second son, Jamie, was born. Jamie has Down Syndrome and Bérubé’s book narrates his son’s early life (Bérubé’s account of trying to insert a nasal feeding tube into his infant son’s tiny, tiny nostrils is truly harrowing) along with often impassioned and always thoughtful analysis of what it means to be disabled—and specifically to be a disabled child—in our society today. He discusses abortion and eugenics, the lackings of our health care system, and public policies towards the disabled. Ever since I started blogging in June 2005, I have been reading Bérubé’s blog, which combines discussion on contemporary politics, the academic world, cultural studies, literary theory, hockey, contemporary culture, disability studies and Jamie (not necessarily in that order).
Today, Bérubé announced that he will no longer be blogging, and I will especially miss his disability advocacy and his accounts of life—as he knows it and now we do, too—with Jamie.
Here is an excerpt from Life As We Know It: A Father, a Family, and an Exceptional Child that refers to much I think about when writing about my son Charlie.
…………………..How we understand people with Down syndrome will become part of what it means to have Down syndrome.
In these pages I have tried to represent my son James to the best of my ability. Nothing I write will redraw a political district; nothing I write will change the chemical composition of Jamie’s cells.
My job, for now, is to represent my son, to set his place at our collective table. But I know I am merely trying my best to prepare for the day he sets his own place. For I have no sweeter dream than to imagine that Jamie will someday be his own advocate, his own author, his own best representative.
Thank you to Michael Bérubé, thanks to Jamie, and thanks for providing a lively, witty, humor-tinger, passionate, provocative, thoughtful model for what a blog can be.
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POSTED IN: Books, Disability Rights, Family, Health, Parenting, Weblogs
1 opinion for Farewell to a Blogger: On Michael Bérubé and Life As We Know It
Autism Vox
Jan 9, 2007 at 11:49 am
[...] reads a headline in today’s New York Times: Due to new, less invasive screening techniques—-an ultrasound exam that can detect whether or not a child might have Down Syndrome as early as eleven weeks into pregnancy—American College of Obstetricians and Gynecologists (ACOG) is recommending that all women who are expecting be screened. Previously, only women 35 and older have been routinely tested for chromosonal abnormalities in their fetuses. The new ulstrasound exam, a nuchal translucency test, measures the fluid that accumulates in the back of a fetus’ neck: There is a “strong association” between this thickening of the back of a fetus’ neck and Down Syndrome, and studies that use this measurement along with two blood tests have been shown to detect 82 to 87 percent of Down Syndrome cases. Having just posted on English professor Michael Bérubé’s book about Jamie, his son who has Down Syndrome, Life As We Know It: A Father, a Family, and an Exceptional Child (1998), I wanted to point out two quotations made in the New York Times article and then a passage from Bérubé’s book, all while keeping in mind my recent post on Procreative Beneficience, PGD, and the Selecting of the “Best” Children in light of the issue of [...]
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