The lines of disability are always shifting; the whole business is amorphous. Felix was born into this world and here he will remain. I came into it through him, and after some adjustment feel very much at home here. It is a world inhabited by people from every pocket of culture: rich, poor, black, white, Sikh, Evangelical, atheist, gay, straight, illiterate, non verbal, Guggenheimy (I’ve met a surprising number of Guggenheim fellows through Extreme Kids). They may be disabled themselves, or they may care for someone who is, or they may work with the disabled. They may be all of the above. But they---we--are all, on some level governed by disability.
This may result in a deep, abiding understanding and appreciation of the variety of human life. Or it may not. When Felix is happy, I enjoy being here. When he is unhappy, when pain and rage shoot through him, I curse his state. Yet it is the world of disability that most understands my sorrow and props me up.
To flesh out this world, explore the communion and understanding that often comes through disability, and expand my knowledge of disability, I would like to regularly conduct interviews with the remarkable people that I get to meet through Felix and Extreme Kids. I started this project in a very pleasurable manner by asking the poet Brenda Shaughnessy out to dinner.
Brenda’s latest book, Our Andromeda, is an electrifying and candid exploration of motherhood, and her relationship with Cal, her firstborn son, who was born with cerebral palsy. Brenda’s husband, the poet Craig Teicher, explored this territory from the father’s point of view in To Keep Love Blurry. Someday, I will interview him, too. The experience of leafing through the pages of both of their books together, folding my fingers over them and allowing their images of parenthood and brokenness, fury, exhaustion and desire to sink in and meld with my own was one of my great reading experiences of 2012.
What's your connection to disability?
How would you define disability?
That’s hard. It is not one thing. It encompasses a huge range of things. Bodily systems. Emotions. Invisible disabilities. The more I’ve seen my own son as disabled, the more I’ve seen how normal disability is.
We all have our disabilities, stuff that we can’t do, stuff that drives us nuts. What’s something that you can’t do?
Here’s one: being able to sing without embarrassment. Embarrassment in general. Think how normal it is not to be able to dance. Your embarrassment stops you from getting up in a room full of people and moving your body. We say how sad it is that kids in wheelchairs can’t dance (though sometimes they can), when we able-bodied people give up our chances to dance all the time.
Three years ago, the Rusk Center at NYU said Cal did not have the trunk strength to use a walker and wouldn’t give us one. Just last week, Cal started using a gait trainer. His therapist sent me these movies of him laughing maniacally and trying to concentrate super hard, bumping into walls, and walking down the halls of his school.
Singing lessons! I am sick to death of being afraid of the sound of my own voice. Cal loves it when I sing, but I have to sing as well as I can or he gets mad. He can detect the difference between trying your hardest and BS.
Brenda credits her singing lessons with helping her break through a two year writing block. New poems are emerging, words pouring out. I find it fitting that a directive of Cal’s would lead her there.
For more about Brenda: www.brendashaughnessy.com