At Once Complicated and Simple

The first part of Michael Bérubé’s Life as We Know It is as emotionally affecting as it is deeply complex. While wading through his extensive knowledge of genetics or his dense critique of the ethics of abortion; his lectures on technology or his views on prenatal testing—(“we can simply scoop up a few of the fetus’s nucleated erythrocytes, no problem, and do a prenatal cytogenetic evaluation every bit as accurate as amniocentesis”)—I have the firm view that he is struggling to provide a solid, simply-stated articulation of the difficulty and joy in having a baby with Down’s syndrome (71).

The heart of his argument, I believe, lies in the notions of societal judgment and guilt, much like previous books for this class have argued against. He advocates against medical establishments “strongly advising” patients to abort or not abort Down syndrome babies, but makes it clear that he does not want to sound as if he is “strongly advising” at the risk of sounding self-righteous (80). He makes the point that “Down syndrome is a disability whose effects are too various to predict and often too mild to justify abortion on ‘quality of life’ considerations for the parents and child” and is, I believe, making a parallel between the historic practice of automatic institutionalizing children with Down’s and the modern-day option of abortion of them when Down’s is detected in utero (79). He is opposed to the idea of necessary guilt: “I believe that no good is achieved by making some forms of childbearing mandatory…just as I would deny that I have the right to make other parents feel guilty for aborting a fetus with Down syndrome, so too would I deny that other parents have the right to make Janet and me feel guilty for having Jamie,” and seems to deftly toe the (difficult) line of the open discussion of abortion (79).

In his recognition that his idealism is utopian he seems to find comfort, but it is only when he delves into describing Jamie himself that he allows himself to write with emotion: “when Jamie is running, swimming, or doubled over with laughter: his little heart is doing just fine, it’s just a beating heart” (83). There are also many similarities with Bernstein’s book, not only because it is a book about a parent and a disabled child, but also in its recognition that “we will never not worry about his future” and the burden it takes up to “represent Jamie as best as I can”, as well as its struggles with medical costs, procedures, adequate care and its exploration of public and private (xi-xix).

The book seems so jam-packed with knowledge of fine literature, complicated biology, medical jargon and political discourse, but by page 94 I find it to be the start of a very simple story told by a hopeful and sad father who had to “intellectualize” his world just to reach a place where he could write about his son’s ability to recognize the desires and needs of other people. “But the ability to imagine what other people might like, what other people might need—that seems to me a more crucial, more essential ability for human beings to cultivate than the ability to ride trains round and round (xviii). This, it seems, is his message to those who would immediately write-off unborn children thought to be unable to someday learn, love or have meaningful lives.