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?
Cal.
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.
Recent
wonder:
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.
Current
project:
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
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