Life As We Know It

by Michael Bérubé

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Last Updated September 5, 2023.

In Life As We Know It, Michael Bérubé interweaves the conventions of memoir with those of critical and historical analysis in order to mount a telling critique of “disability” as an idea within North American culture. His critique is founded both in personal experience and the objective findings of his research. Inspired by the birth and life of his son Jamie, Bérubé’s work is founded on his experiences as a father of someone with Down syndrome, touching on the challenges negotiated and rewards reaped by his family in the years since Jamie’s birth in 1991.

He opens his account with his recollections of Jamie’s birth, of his family’s adjustment to the realization that their son had Down syndrome, and of their decision to flout conventional medical wisdom and raise their second child just as they had their first. The text continues with Bérubé’s recollections of how the events of the subsequent years awakened him to the role of medical, societal, and political authorities in defining his son as someone existing at the boundary of humanity. Bérubé’s portrayal of how his son was perceived by the outside world appears in sharp contrast to how his humanity was emphasized within a family environment and how by means of various adjustments he, his wife, and his first son, Nick, were able to create conditions where Jamie was emotionally and intellectually nourished.

This personal aspect of the text renders it an instructive and enlightening read for parents who have children with Down syndrome or other disabilities. However, the author’s purpose is more than autobiographical, and he uses his son’s example as the foundation for a broader and more comprehensive study of what “disability” means for the American people. Unsurprisingly, given his background as a professor of English literature, he is interested in the role of language in establishing and sustaining “disability” as a construct. He proposes that as long as terms such as “mongoloid idiocy” exist within respectable medical discourse, the problematic way in which “disability” is understood by broader society is unlikely to change. He is of the belief that a new linguistic framework is imperative for redefining “disability” in the North American mind. He is also interested by the historical context of “disability” and how events and incidents have contributed to the formation of such notions in societal, medical, and political fields.

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