Jul 13, 2017
Michael Berube’s book, Life As We Know It, was an absolute lifesaver for me after my eldest son, Graham, was born with Down syndrome in 2006. I was looking in vain for any story that would tell mine back to me. What did it mean to be ushered into this particular set of the human family with whom I felt so little affinity, at least at that time? The literary world is full of the most drippy purple prose about developmental disability, and perhaps especially about Down syndrome. So little of it was of any use; my husband and I weren’t looking for rosy redemption stories about “angelic,” “always happy” people like “they always are.” We had no need of a they, but we did need a sense that we, all of us, were part of something bigger—a much more profound historical invitation that would affect how we lived but also attach us to a discourse and a politics, things that came before our family and would proceed after us. Berube’s book was that. It’s astonishing in its lucid oscillation between the tiniest details and the most dense theoretical power, all told with Berube’s singular, liquid-casual prose.
I won’t be writing much about my own story in my book. There are now scores of disability parenting memoirs out there, and I’m not interested in unpacking our own experience so much. (I also worry a lot about how I’d represent Graham without speaking for him, but that’s a subject for another day.) To be sure, as I trace the origins of design and disability and the lessons they pack for an inclusive future, I’ll certainly be re-examining Berube’s book in part for its continual nourishment when I’m worried about Graham and his place in the world. But mostly I’ll read it for craft.
“Almost as a form of emotional exercise, I have tried, on occasion, to step back and see [my son Jamie, born with Down syndrome] 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. I have even tried to imagine him as he would have been seen in other eras, other places: This is a retarded child. And even: This is a Mongoloid child. This makes for unbearable cognitive dissonance. I can imagine that people might think such things, but I cannot imagine how they might think them in a way that prevents them from seeing Jamie as Jamie. I try to recall how I saw such children when I was child, but here I guiltily draw a blank: I don’t remember seeing them at all, which very likely means I never quite saw them as children. Instead I remember a famous passage from Ludwig Wittgenstein’s Philosophical Investigations: ‘Seeing-as’ is not a part of perception. And for this reason it is like seeing, and then again not like.’ Reading Wittgenstein, I often think, is something like listening to a brilliant and cantankerous uncle with an annoying fondness for koans. But on this one, I know exactly what he means.”
This citation of Wittgenstein is just magical in all the work it’s doing here: introducing a heady concept in a couple of sentences while signaling to the reader who you’re dealing with, author-wise: someone interested in ideas but able to avoid getting bogged down in jargon. Winking at you, the reader, about how impossibly airy and diffuse these philosophical giants can be, but connecting that tradition all the same. It’s a little bit like the “free indirect style” that James Wood writes about in How Fiction Works: a mix of limited and omniscient narration where the author breaks from the declarative and closes the gap between himself and the reader, momentarily, and without announcing it. That tension can make the prose come suddenly alive, in either fiction or non-fiction. Berube’s use of this citation in the introduction of the book hints to the reader what’s to come: a big story, fortified by ideas from unexpected places, with the highest stakes involved.
(Thanks to journalist Jina Moore, who brought Wood’s ideas to a narrative journalism conference I attended in the spring and had good things to say about how it can work in non-fiction.)
(To read How Fiction Works is to wonder whether James Wood admires many women authors, but I am overlooking it, people. I am overlooking it.)