Tuesday, May 27, 2014

Broken & Woken

Thanks to Felix and EK & C, I get to meet an unexpected, often delightful group of people, many of
whom I can’t help but fall in love with. There’s my favorite plumber-turned-para-olympic athlete-turned
Felix Applauding Rosanne Cash
NYC Commissioner, my favorite famous poet couple, my favorite speechless child who chants with the haunting beauty of a Gregorian monk. I’d like to use this blog to interview the people I come across, to discuss their current projects and ideas and explore how their experience with disability has affected their thinking, working, moving, loving, being, etc. All this to say, I do not want Woken & Broken to focus only on EK & C, but to extend outwards, spotlighting people who are making the intersection of culture & disability flower, ferment, and bubble over.

That said, I am starting local with a completely objective account of EK & C’s May Soiree, held last week at Littlefield. From a scientific perspective, this was the best gala ever. There
were three best things:

Best thing #1: The first ever Felix Awards, EK & C’s humble alternative to the Oscars, intended to honor writers, artists and thinkers whose work teases the line between “disabled” and “abled,” tweaking, deepening and challenging the public perception of disability. What a thrill to see Karen
Andrew Solomon
Pittman present the Felix in Art to Jill Mullin, the editor of Drawing Autism, an electrifying collection of art by an international array of artists on the autism spectrum. And I got to meet the incomparable Rosanne Cash! Who graciously gave the Felix in Writing to Andrew Solomon for his thoughtful, in-depth, and analytical study of the difficulties and beauties of raising children with disabilities, among others, in Far From the Tree. I’m still reeling from the moving speech he gave us all.

Best Thing #2: The party!!! I got to wear my sequined rainbow shirt, dance to Miss Ida Blue, hug old friends and meet new ones. There were so many people! Over two hundred. Best of all, I did not organize it. Board members Micaela Walker and Vanessa Connelly dreamed up the circus theme and brought in all those stilted, fire-throwing, balancing, juggling, sword-swallowing wonders. Vanessa’s husband, the filmmaker and
father extraordinaire Zachary Raines made that beautiful movie. The staff at Extreme Kids and our trusty volunteers glued the whole thing together with their consummate flair. Which brings us to...

Best Thing #3: The number of people involved and the roiling, creative energy of those people
The scene...
indicates how we’ve grown as a community. If we can put on a show like that, our barn-raising can’t be so far away...

Wednesday, May 14, 2014

Broken & Woken

Broken is continuous, a bit of heart break, a knee-twinge, a flaw in mind or memory.  I spend hours throughout the week looking for my keys.  I know that I am supposed to leave them in the same place, but in spite of earnest resolution, I fail to do this over and over again.

Ever since I realized that Felix’s life would be laced with disability, I’ve been mulling over the definition of term.  What is disability but an inability or enormous difficulty doing something that most people can do without much work?  Cannot most people remember where they left their keys?  Why can’t I? Keys. They are so damn symbolic.  Imagine how powerful, not
to mention on time I might be if I always could find the keys.

I got off easy, compared to Felix.  From a medical perspective his body is broken, big blotches of white matter killed off, language centers of the brain mangled, movement severely hampered. And yet there are times, many, when this broken body brings him and those around him unfettered joy.  His laughter arrests conversations, lights up faces, draws strangers to him.  He affects people more deeply than I, notwithstanding my fancy education and highly ranked cognition.

Woken.  Woken in the middle of the night by his whoops.  Woken by his mystery, his silence, his unknowability. The glory of remembering how little I know, about him, about me, nothing really, not even what knowledge is.  Even if I could stay in this broken, woken state, I’d have to leave.  I’ve got work to do. And yet to be here is marvelous.  I thank him for bringing me here as often as he does.  Miranda, his sister, thinks that he can speak with the trees.