Life As We Know It

by Michael Bérubé

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Last Updated on September 5, 2023, by eNotes Editorial. Word Count: 521

The book chronicles the first few years in the life of James, or Jamie, the younger son of author Michael Bérubé and his wife, Janet. Bérubé provides both scientific information about Down syndrome, which affects their son, and the personal dimensions of the family’s journey in understanding the condition as he grows. One of the main points that Bérubé makes in Life as We Know It is that each child is a unique individual. While others might see his son Jamie as an interchangeable member of a category, Bérubé has never done so, and he cannot completely endorse any effort in that direction. Down syndrome is one component of Jamie’s makeup, not what completely defines him.

Almost as a form of emotional exercise, I have tried, on occasion, to step back and see him as others might see him, as an instance of a category, one item on the long list of human subgroups. This is a child with Down syndrome, I say to myself. This is a child with a developmental disability. It never works: Jamie remains Jamie to me.

Although he reviews the genetic alterations that cause Down syndrome, Bérubé points out that the manifestations are widely varied. While other types of “major genetic error” have catastrophic results, that is far from always the case when it comes to Down’s. The intellectual aspects are sometimes, but far from always, the primary result. There is neither just one mold into which Down’s children are fitted nor one set of characteristics common to all children affected.

[W]hat’s odd about Down’s is how extraordinarily subtle it can be. Mental retardation is one well-known effect, and it can sometimes be severe, but . . . the extent of such retardation can be next to negligible. The real story of Down’s lies not in intelligence tests but in developmental delays across the board.

Along with the personal and scientific dimensions, the book addresses critical policy issues that have had and will continue to strongly impact his son’s life. One of the challenges that he and the rest of his family must face is that the person who is most directly affected is the one who has serious limitations in his ability to take on the political and medical establishment. The author not only positions himself as an advocate but also raises important questions about the nature of advocacy as a process in which people with diverse intellectual abilities can—and in his opinion, must—become engaged. There is likely to be a large gap between the way that Jamie’s condition is currently understood, he points out, and the way it will be approached in future. Jamie, he notes, is positioned

at the crossroads of individual idiosyncrasy and sociopolitical construction. . . . Perhaps those of us who can understand this intersection have an obligation to “represent” the children who can’t; perhaps we have an obligation to inform our children about the traffic, and to inform the traffic about our children. As those children grow, perhaps we need to foster their abilities to represent themselves.

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