(I was inspired to write this after taking a sign language class. It had an effect on me I never could have anticipated.)
Deaf by Design
You’re a parent. You just found out your newborn baby has disability. But you’re in some weird, parallel universe where the parent can choose which disability the child will have. Still there’s a catch. It’s multiple choice: autism or deafness. Choose.
Easy, right? Deafness is the obvious answer because it can be overcome. They may never know the aching beauty of a circa 1970 Eric Clapton solo, but Clapton, despite what’s written on highway overpasses, is not God. And a diagnosis of deafness brings to mind an obvious, objective list of options that even hearing people are aware of: sign language, lip reading, cochlear implants. There is no such “list” either obvious, or obscure, that springs to mind when one hears a diagnosis of autism. “Rain Man” is about all that springs to mind. When a parent hears that their child is deaf, they will be understandably stricken, but their child will still have nearly every opportunity a hearing person has to live a full and productive life. When a parent hears that their child is autistic, they grieve. All that the world typically whispers when a child is born is now gone silent. The promises customarily attendant every child are not merely un-kept, they are unmade. All of life’s landmarks crumble: proms, weddings, grandchildren...
Let’s go back to our weird universe. You are the parent who willingly, purposefully chooses deafness for your child, but add this: You choose deafness for your child, knowing that within many, very well-populated corners of the deaf community, he will be ostracized if he learns lip-read, and to read and write in their native language. That could never happen, right? Not here on earth, in the Milky Way, right?
That’s kind of thinking is all too common in deaf America. Now. Here. 2008. America. Planet Earth.
When I decided to take a class in sign language, I never expected to quit in a fit of righteous indignation. When I started, I was genuinely interested in learning another language, one that would put my naturally demonstrative Italian hands to good use. But my teacher not only taught sign language, she took it upon herself to teach us “deaf culture,” and that’s when she lost me. And if you’ll forgive the pun, I couldn’t believe my ears.
Some deaf, she said, eschew learning lip reading because they feel it is somehow “giving in” and that the hearing world needs to, not to put too fine a point on it, accommodate them. Some deaf, when they marry, will not only hope for a deaf child, but seek out ways to insure that their unborn child is deaf, or refuse intervention that will provide full or partial hearing for their deaf child once born. Some deaf parents of deaf children will perpetuate their isolation by refusing to let their children learn to lip read or read and write. The deaf even have, she revealed, a sort of internal discrimination reported among blacks in America. We’ve all heard of blacks saying of another black that he or she is not “black enough.” Evidently, there are those among the deaf community who are not “deaf enough.” Depending upon what kind of deafness you have, you may be ostracized. Deaf at birth is different from deaf as a teenager. Deaf after having fully participated in a hearing world until adulthood is different from the deaf who spent life insulated inside deaf culture. Deaf with cochlear implants is different from deaf without. Deaf with hearing aids is different from deaf without. Literate deaf are different from illiterate deaf. In fact, my teacher relayed that substantial numbers of deaf people are functionally illiterate. I actually raised my hand in class to ask why, and the hush in the room was palpable. It seemed an obvious question. After all, they’re not BLIND, they’re DEAF. So why can’t they read? It was explained to me that because those who are deaf from birth have no idea what, for example, an “s” sounds like, connecting an abstract sound with that shape on the page, and therefore assigning it meaning, is profoundly difficult.
People with autism and people who are deaf both have disabilities which isolate the from society. Both groups live in a world full of people with mouths that move on faces that make expressions which are mysterious and confusing. Autistics struggle all their lives to focus not just on the moving mouth, but on the entire face, and then the whole person, and take in the entirety and subtlety of body language and what it all means. Some will “learn people” like some learn the piano. Practice, practice, practice. But they will never fully emerge. Deaf people can. They have the luxury of choice. My autistic daughter doesn’t, and that’s what hurts.
She will never learn enough to live on her own. She will remain with us, her parents, and as we say, “There are worse things than always having a child with you.” I never thought specifically, other than the death of a child, what that worse thing is. I now know. The worse thing would be to be the deaf child of a parent who think that deafness is some philosophical charge, rather than what we all know it to be: a disability with a way out.
How dare they not take it.
As the parent of a child with a disability that isolates her from society, I find that profoundly, personally offensive. It angers me to the core. I wish we lived in yet a third universe on our tour of the galaxy of the fantastic. I wish we lived in a universe where the deaf who throw away, literally with both hands, the chance to integrate more fully into the world, could give that chance to my daughter, for even if she were unable to catch it herself, I would catch it for her, and set her free.
Just back from another gourmet New Year's feast at a neighbor's house--mercifully just around the corner, but a daunting trek through foot high drifts of snow--but before I retired for the evening and wished all well for 2009, I wanted to post this picture I took this afternoon out of my living room window into my front yard. Somewhere out there is the Atlantic ocean... Way beyond those windswept, frozen trees. Please note, the photo isn't meant to be high art! Merely documentary of the weather.
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