Andrew Statum

A book like The Diving Bell and the Butterfly seems to me one of those cultural artifacts that are all but immune from criticism, like a painting by a retarded person or a symphony from someone with autism. Yeah, their works are all pretty incredible, but they're far from masterpieces. What makes them spectacular to contemplate is their sources, the artists themselves who we think are debilitated beyond all hope but then spin off a piece of art a "normal" person could never hope to create. But at the same time, if a "normal" person did create the same piece as a "handicapped" person, the "normal" piece, I imagine, would be held to a much higher standard than the "handicapped" one. So, it seems to me that there are two sets of standards in play when we evaluate something like Bauby's book.

It's kind of like the Olympics and the Special Olympics. Yes, the "special" olympians are very gifted athletes. But we would never ask them to compete with the non-disabled athletes. That's not fair to anybody. And even when the "special" olympians are competing only against other "special" olympians, all of us are loathe to call those who don't finish in first place "losers." Every single participant in the Special Olympics is considered a winner because all of the athletes had to overcome severe disabilities simply to be able to compete. So, in a way, every "special" athlete's accomplishment, regardless of placement in the race, is on the same level. The gold medal winner and the kid that finishes in last place have all, kind of won the same amount.

But at the same time, doesn't having this separate standard devalue the "worth" of a piece of art created by someone with a physical or mental disability? Are we supposed to judge this work against all other so-called "great" works, or should we only contextualize it within the universe of other works by people with "disabilities?" Or should we abstain from judgment entirely? Rather, should we as consumers of art scrutinize the piece not as a work of art, but as a product of what those in the movie-hype business call, "the human spirit," something that is valuable simply because it exists?

I don't know. On one hand, I thought the book itself was kind of a let down. I felt like there wasn't so much a narrative as there was a loosely related series of anecdotes and observations. Bauby's wife and kids come off as very flat characters and even his strongest memories, I felt, weren't translated well to the page. But on the other hand, the story outside of, and partially woven into, the book is incredible. I mean, a man with locked-in syndrome using only his left eyelid to blink out a book? How can you hate on that? I feel as though a book like this is not meant to be considered for its aesthetic qualities but for the mere fact that it exists at all, the fact of which certainly alters Bauby's work in my estimation. If he didn't have locked-in syndrome and he wrote this as a piece of fiction, I'd say this book sucks.

(As a side note, I wonder how Claude must have felt when she read the parts of Bauby's work that dealt with her. "I study her dark hair," she read back to him, "her very pale cheeks, which sun and wind have scarcely touched with pink, the long bluish veins on her hands." What if, at some point, she was dictated the words, "I think I'm falling in love with Claude"? How agonizingly self-conscious she must have been during every trip to Bauby's room.)