shades

The other story I wanted to share from This American Life is the recently rebroadcast of a 2005 Father’s Day special, Go Ask Your Father.

The first major story is about a man named Lenny who finds out that he was conceived through artificial insemination when it was just in the earliest phases of development. Over the course of 20 years, an uncle’s secret revealed, and a DNA test, he finds out that he not the biological child of his father. His uncle most likely is his father. Lenny describes the difficult relationship he had with his father, how he was always being pushed, shamed, upbraided for not being a particular kind of person. Lenny walks the audience through the emotional stages of finding out about his true genetic identity later in life. This is the story. It was moving, interesting, provocative. As Ira Glass is signing off he mentions that “Lenny” is Lennard Davis and a professor at the University of Illinois. That’s it.

I happen to know that Lennard David is a Disability scholar and child of deaf parents. This father that he spent so much time talking about in the TAL episode is Deaf. All the interactions he describes in the episode are in sign language. In his memoir about growing up CODA (child of deaf adults), Davis talks about how his parents pushed him into the hearing world…not to be held back by the social disadvantage that being deaf in the 1950s brought them. The TAL episode doesn’t mention deafness at all. I even listened to it a second time to see if it had been intimated when I was paying as close attention. (The memoir Davis wrote about the experience does mention deafness.)

So many thoughts went through my head as I made the connection between Lenny of This American Life and Lennard Davis, the scholar and CODA. The story that aired would have had to have been so different. So many different shades of communication. Layers added to the complexity of the relationship between Davis and his father. Why wouldn’t he mention deaf in a story about his father? He’s very outspoken about his connection with the Deaf community now. Maybe it was merely to keep the story simpler…to keep the story line harnessed into one track without introducing another. Maybe it doesn’t always have to come out; one doesn’t always reveal that one is Jewish or Italian. But perhaps one would if being an immigrant (and that is best analogy, I think, for this situation) significantly shaded one’s relationship with one’s parent and the episode was about one’s relationship with one’s parent. It was interesting to listen to the episode a second time with this extra shade of information.

Advertisements

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.