"Representing" those we love the most

Thanksgiving weekend turned into a bit of a bust. We were originally going to visit my wife’s parents in Rexburg, Idaho but our oldest son got sick and we didn’t want to pass on any germs to the in-laws, in-laws who are already paranoid about germs and mother-in-law who just had knee surgery. We had hoped to help them out—paint a hallway or two and provide, hopefully, some pleasant company. Next, we decided, though we’d already had a pre-Thanksgiving meal with them, to take ham and turkey to my parents. Again, we thought we could provide some company and help out a bit as my dad is basically immobile as he awaits an epidural for his back pain and sciatica. This also almost happened but then my mother got sick, quite sick I assume since she never calls off family engagements.

Instead we had what we believe was our first, after 13 of them, Thanksgiving meals at home. It was nice: a beautiful display of our rarely used china lighted by candles centered around a small bird (oldest son won it in a 2-mile race in Brigham City), a delicious spiral cut ham, funeral potatoes, yams AND some Jersey sweet potatoes that I picked out last minute (light brown skin, less sweet than yams and delicious); fennel apricot carrots; wife’s homemade rolls; cranberries and cranberry jello salad; and Marie Calendar coconut pie, our only non-homemade indulgence.

With all the unexpected extra time I read Life as we know it by Michael Berube (thanks MB for the recommendation). Berube explores issues of identity, representation, and reciprocal ethics through a discussion of his son, Jamie, who has Down Syndrome. It’s an engaging read, on one level very personal narrative and on another theoretical and political. He trounces the right’s rhetoric of limited goods and anti-theory/liberal/university stance but also aptly, and more interesting to me, demonstrates the limits of the left and its theory by critiquing Foucalt’s denunciation of institutional power:

We’ve learned that whatever we may believe about the history of madness, sexuality, incarceration, or mental retardation, we find it emotionally and intellectually impossible to be Foucauldians about the present. We have to act, for both theoretical and practical reasons, in the belief that these agencies can benefit our child, even as the sorry history of institutionalization weights on our brains like a nightmare (113).

Courageously, I think, he constructs a position between the left and right in order to maintain a sense of hope concerning his son’s future. To paraphrase, he points out it’s one thing to theorize about the inability of individuals to act as they are “discoursed” into existence and another to actually try negotiate the institutions where your real child, a child who doesn’t fit into our definition of normal, tries to survive. As Michelle Tepper of Salon.com observes, utilizing Berube’s concluding metaphor, “Bérubé wants no part of any theory that he can't be sure will provide a place at the table for both of his sons.” Of course we have all known this, will know it, and will forget it: a theory is a theory and real life is quite another. Hence, what good is a theory if it doesn’t further our hope about those we love the most? Should we care about a theory at all which does not ultimately create possibilities for change and for discovering a better, even if infinitesimally better, path?

Clearly theory in the air, as it were, can still be useful by helping us imagine new ways of thinking and considering even if these new ways do not lead to hope or do not match up with our real-life experience. But simultaneously these theories are potentially dangerous if we do not allow them to bend, even break apart, when they do not serve to create options, paths, ways of proceeding towards something better.

All and all a good Thanksgiving read, both theoretical and immediatly pragmatic. A read which made me think more carefully about my own children, their limitations, and my ability to impact how schools should provide “free appropriate public education…[in the] least restrictive environment.” This is a federal law written for children with disabilities but it seems applicable to all children. As Berube argues our clear cut distinctions between retarded, delayed, and normal are problematic at best; therefore, kids on either end of the spectrum, labeled as “retarded” or “normal” should be given the best chance of succeeding. Berube’s unique contribution to this law and parental concern and right is to emphasize that Jamie’s well being relies on how well he and his wife can “represent” Jamie as a human being with talents. I hope too that I can best represent my children to the institutions they are asked to participate in. I owe this to my kids however tricky it may be to do my best to represent while not misrepresenting nor subverting their on need and desire to represent themselves.