the boy blowing bubbles in the moon

When I was away for my recent conference, there were two things that I read while traveling: Rob Wegman’s recent essay “Blowing Bubbles in the Postmodern Era”and the memoir, The Boy in the Moon: A Father’s Journey to Understand his Extraordinary Son by Ian Brown.*

The first is a meta-musicological meditation on the work of the historian and the inherent constraints we face as individuals in a place and time trying to understand another place and time.

So it is as if we are inhabiting a little bubble: a bubble that’s floating in nothingness, a sealed and self-contained conceptual world called the twenty-first-century West. Trapped within that bubble, we are trying to imagine the one thing we cannot possibly know: what it is like to live in another bubble. (217)

Historians work to collect, sort, interpret the bits of history, placing them in their contexts, constructing identities and nations. Historians look at the cultures from the everyday morsels of life to the ruptures that change those routines. Historians sit at their computer screens in the twenty-first-century writing arguments and citing evidence for historical hunches. (Historical truth is so nineteenth-century.) Historians spend their whole life trying know the unknowable.

It was interesting to me that I was reading this article as I was finishing up The Boy in the Moon, a book by the father of a son who was born with a genetic condition that leaves him so severely disabled physically and intellectually that all the means the father has previously used to get to know another human being are now moot. His son is non-verbal and does not have enough motor control to sign, neither are they sure if he can intellectually ascribe meaning to signs. He can’t express desires. He does laugh and can appear to be either content or discontent. And he can walk.

Not only is Brown trying to understand who his son is, he is also trying to understand what meaning his son’s existence has in present society. If our society values the mind, productivity, economic production, then the boy has no place in that society.

Brown quotes a conversation with a wise geneticist:

The state of non-verbal rapture you describe in your son — who is to say that that is inferior? Who is to say that? We’re arrogant enough to believe that sentience is all that counts. It’s not all that counts. A sequoia is not a sentient being. But they count. There is nothing more magnificent. It doesn’t require me to think about it to be in awe of it…[The difficulty of raising a handicapped child] says something about the place we have reached as a society that doing so creates a serious handicap in these contexts. But it’s just a mistake to think of them as lesser than. There’s no lesser than. There’s just different from. It isn’t just great minds that matter. It’s great spirits, too.

It was a genetic aberration that produced the child and science that keeps him alive. If evolution brings us children like him, then our societies need to evolve with them. An underlying question of the book is, what does disability bring humanity?

Both Wegman and Brown are trying to know an unknowable. Faced with the insurmountable constraints of time-travel and massive genetic overhaul, their tasks leave them with the opportunity to reflect back to themselves. Brown says, “I keep speaking [to him]. Of course it’s not Walker alone who needs to keep hearing me talk; it’s me who needs to keep talking to Walker. I’m afraid of what will happen if I stop.” When faced with the chasms of history, Wegman says, “With great pleasure, I will go on research trips to find watermarks…I will be happy…[and] write about these things in a way that interested readers will find entertaining and enlightening.” In each case, the authors are speaking to their own experience as individuals in the process.

Both authors find the experience of probing the unknowable an occasion to reflect on their own humanity with respect to their tasks. And it is their personhood that gives meaning to otherwise stymieing feats.

The work of history is profound. Raising a severely disabled child is also profound, but in a very different way. I hope I don’t minimize their unique realities by juxtaposing them here. I’m merely reflecting on what was, for me, a fortuitous collision of ideas that seemed to relate on a deeper, human level.

* Ian Brown was interviewed on NPR’s Fresh Air shortly after the book came out.