I have written two memoirs that are respectively and in part concerned with the subject of my family and the matter of disability. If you have read those books you know that my mother and father were deeply divided about my blindness when I was a boy. They knew the "facts" concerning my disability but they had little or no emotional language that might enable our family to talk about the daily realities that accompany visual impairment.
The gap between empirical knowledge and emotional intelligence is a common problem for families that are faced with disability. I think it's also the case that this language gap happens when family's face almost anything they weren't counting on: teenage pregnancy, drug addiction, alcoholism, an unfaithful spouse--all these problems naturally come to mind.
The difference with disability is that unlike the other circumstances you can't really deny its existence for more than about sixty seconds, which is about how long the average person can hold his or her breath. You can pretend that grandma is eccentric for years even as she sequentially sets fire to the living room furniture and wrecks several station wagons. She's not a drunk. She's gravitationally challenged; she's "spiritual"; by God she's a genius!
Even though my family liked to pretend that I wasn't blind, I always "was" and the story of our growth together has everything to do with learning the emotional language of disability.
Another way to think about this is to imagine that the idea that you can "not think" about disability is as ridiculous as eating opium. Everybody knows the story of Samuel Taylor Coleridge who began writing his visionary and Romantic poem "Kubla Khan" while under the influence of laudanum. The poem was coming along nicely when suddenly a local laboring man knocked on Coleridge's door and interrupted the poet's "Magical Mystery Tour". Coleridge was never able to complete the poem and it is routinely reprinted in anthologies to this day, largely as an example of "what might have been".
I've always thought of the Kubla Khan story as being a kind of disability narrative. Disability always knocks and interrupts what you were thinking about.
In turn, I guess you could say that disability asks us to live out in the open and to use our poetic gifts in the service of community. This is why I believe that so much good contemporary literary writing has been done by people who have chosen to talk about disability in their lives. Writers like Ralph Savarese, Floyd Skloot, Anne Finger, Kenny Fries, come to mind and of course there are hundreds more.
I owe a good deal to my parents even though they were slow to learn the language of disability. They encouraged me to take up writing and they understood that progress is progress, even if you don't always like the new names you have to give it. My parents didn't like the fact that I was blind but they learned to talk about it and even admire it.
This is what good families do: we learn new emotional languages together. One day your daughter announces that she's marrying someone you can scarcely imagine in your midst. And then you do imagine it. And then, after years, you think it was your idea all along.
Thank God for families, even with all their flaws!