Funding Streams

If you start a nonprofit and you live in New York City, you will probably find yourself attending your fair share of charity galas. Some are in support of an organization you love. Sometimes you are currying favor.  Always you have the fantasy that you will find yourself chatting with a kind, thoughtful multi-millionaire who grasps the subtle power of your organization and is eager to help. 

From time to time I buy tickets to these galas.  Sometimes they are given to me.  Occasionally Jason gets me into galas that would normally not be on my radar.  So it was last week.  Jason was asked to a black-tie dinner-dance at the Grand Hyatt, hosted by a consortium of New York real estate and construction interests.  Tables cost from $7,500 to $50,000, and the proceeds were to go to a charity called National Jewish Health. 

We arrived late, as I had been trying to get a stain out of Jason’s tuxedo shirt, which may not have been laundered since college.  Cocktail hour was in full swing.  We mingled with the crowd, trying to fit in, observing their behavior.  One of Jason’s colleagues greeted a real estate mogul by saying, “The last time we met, you told me to go fuck myself.”  No offense was taken.  Someone pounded on a xylophone.  We were herded towards the elevators like a group of well-dressed cattle. 

The last time I’d been to the Grand Hyatt had been for the Brooklyn Community Services gala, an affair that featured earnest speeches about poverty in Brooklyn, radishes done up as flowers, and Mayor Dinkins.  I expected more or less the same thing, if from a different political slant: Larry Silverstein instead of David Dinkins.  Health instead of poverty.  Kosher instead of crustacean. 

That’s not exactly what I got.  The elevator doors opened to a corporate Hyatt hallway, resounding with music as warped and insistent as the bass from a muscle car. We wondered if we were on the wrong floor, but we were caught in a sea of dinner-dance guests, most of whom looked as bemused as we felt.  Dotted around the hallway were Lycra-clad dancers vamping on platforms, their faces painted with glitter, their scalps topped with shag carpet wigs in yellow and orange.  A guy in a darkly mirrored body suit jumped around a fake manhole in a vaguely sinister manner.  Silver spray paint on black banners proclaimed Anarchy! Chaos! Lunacy!  Could this scene possibly be self-referential? An acknowledgement of the disruption that can be caused by development? No. We entered the ballroom, disco balls everywhere, strobe lights flashing, women dancing in cages. Jason saw my face. 

“Relax,” he shouted over the beat.  “You are supposed to think Studio 54.”

Fuck Studio 54. I don’t like seeing men behind bars, either.  We found our table near the back, decorated with a heap of silver and black disco paraphernalia, plates with thinly sliced beets, and sardine tins stuffed with lobster salad.  So much for kosher.  Apparently, National Jewish Health was Reform. 

I felt like an extra in American Hustle, but this was real.  Seventy or so tables were arranged around the room, around each of which sat real guys from the construction industry, with real wives in sequins, eating real lobster salad.

At least the lobster salad was good.  And I got to sit next to a friend from Jason’s firm.  Only a third of the people there were in construction, he told me. The rest were in real estate and law.  No one wants to go to these things, he explained. You just do. It’s the price of doing business. Their law firm had coughed up $10,000 or $15,000 for the table.  Not enough, apparently; their name was misspelled in the brochure. 

Up at the podium, Mr. Silverstein, whose company owns the World Trade Center, thanked person after person.  He was followed by the organizer of the gala, and then a representative from National Jewish Health, which we discovered was a hospital.  In Denver.  It had been founded in 1899 to serve the poor.  Now it is a world-class institution specializing in asthma and other inflammatory diseases.  We watched a five minute movie demonstrating how the hospital had cleared a child of disfiguring eczema, how it had helped a firefighter with a puzzling respiratory ailment breathe again, and how it had helped a middle-aged woman with acute asthma live a life outside of respirators.  I have asthma.  I understand the visceral joy of lungs opening up, allowing oxygen in.  I’m grateful for any institution that’s trying to make breathing easier.  But it was hard to breathe in that ballroom.  

The band began to play.  I will survive.  People got up to dance.  I was surprised.  It’s hard to get people to dance.  Then again, the dance floor was filled with young people in Lycra and rhinestones, paid to shimmy and smile.  And they were handing out glowing rubber rings and flashing plastic necklaces, which the crowd eagerly snatched up. The party painter, behind his easel, captured the scene in oil. He couldn’t tell me how much he was getting paid, he said, but he’d charged less, due to it being a charity event.

A couple of real estate guys came up and introduced themselves.  Here was my chance.  One of them might have had a kid with disabilities.  One of them might have been a multi-millionaire.  They might have been kind and thoughtful.  But in that atmosphere, I didn’t have the energy to find out. I told them I was married to one of the lawyers at Table 40. They walked away. 

What if Extreme Kids lasts 100 years? Will our funding streams resemble those of National Jewish Health? It’s already happened on a smaller scale.  A couple of years ago, the Aqueduct Racetrack tossed us some change.  We were grateful for it.

Outside the hotel, Santa Clauses taking part in Santa Con stumbled about drunkenly.  We saw an empty cab and grabbed it.  The cabbie was a young man with delicate features and a shaggy blond beard.  “Fort Greene,” Jason said.   The cabbie giggled, his voice high and piping, shot through with tremors.  Jason and I put on our seatbelts.  The cabbie kept giggling, his thin shoulders trembling.  But his tremors seemed to be contained in his shoulders and his voice.  He drove with a steady hand, and spoke with an openness and sweetness that made me think he might be on the spectrum.  My lungs opened up.  There was that oxygen that had been missing during the gala. We talked about Fredericksburg, Virginia, where he’d grown up and where I’d gone to state fairs as a kid.  He’d moved to New York, drawn by the art, and now was driving a cab six days a week, and sending $300 a week back to a woman he’d married in India.  It had been a mistake, he said, marrying her. He drove us across the Manhattan Bridge, musing about a friend from Sudan, and the possibility of reinstating peace after the civil war.  He drove us down Myrtle, remarking that he had picked us up by the statue of Cornelius Vanderbilt, and that now we were approaching Vanderbilt Avenue.

Jason gave him a big tip, though he doubted the cabbie would be able to keep it for very long before someone took it away from him. Which was funny, because I’d been thinking: God, I wish he was a millionaire.  He’d fund Extreme Kids & Crew.

Back at home, Jason made me guess the contents of the swag bag that we’d picked up as we left the Hyatt.  “Lotion,” I said. I was wrong, again.  Inside: socks decorated with a marijuana motif, presumably a reference to the pot-happy laws in National Jewish Health’s home state.  Plastic martini glasses.  And finally, something useful: a lava lamp!  A sensory treasure for Extreme Kids & Crew. 

Then inspiration hit.   I packed the lamp and the rest of the swag back in the silver sequined bag from which it came. I’m auctioning it off.  Come on guys! Make me an offer worth my while.  I’m starting the bidding at $100. But if you happen to be a billionaire with ties to National Health, we’d take a cool million for the lava lamp alone.

Fabric Art on the Subway

     Kate asked if I could lead a family art project at Extreme Kids, and for once I knew immediately what I wanted to do: textile art inspired by the Judith Scott show at Brooklyn Museum. Judith Scott (1943-2005) was an internationally celebrated fiber artist who spent 30 years of her life in a state institution because she was deaf, mute, and had Down’s Syndrome. Her twin sister Joyce, who got her released and enrolled in an art center for people with disabilities, is now the guardian of the work she left behind.
     I am perhaps particularly drawn to Scott’s work because of Felix’s jingle-jangles. Felix’s jingle-jangles usually begin as key chains. Over time, they grow, acquiring new attachments: multiple key rings, ribbons, bells, beads, tangles of yarn. He can focus on these for hours, swinging them, frowning at them, creating knotted forms and unnamed shapes that don’t conform to conventional measures of beauty, but that nevertheless attain visual and tactile qualities that are mysterious and

Eliza's egg carton construction

compelling. I have long dreamed of creating an installation that would consist of enormous jingle-jangle-like forms that droop from the ceiling. People could walk amidst them, feeling them, swinging them, knotting them more. The dangling forms would be so large that the people investigating them and moving between them would be like unstuck insects within a bulbous and spectacularly irregular spider web. Leading a Judith Scott textile art workshop seemed to me like a first step in this direction.    
     Scott’s work is based on household objects wrapped in scraps of cloth and yarn, so a few days before the workshop, I began ripping up old tee-shirts and trying to figure out how to wrap them around an egg carton. My idea was to create a soft, woven object with twelve cozy fabric nests. But as I went about poking holes in the bottom of the egg cups, seeking passages through which the tee-shirt shreds could pass, the project took on new and strange dimensions. I soon found myself working with an intensity I had not expected, impatiently ripping more tee-shirts when my scraps ran out, fascinated and eager to see how they could be knotted, wrapped, twisted, and looped.
     I realized that I was late for an appointment in Manhattan. Unwilling to leave my project, I stuffed the egg carton, fabric scraps, tee-shirts and scissors into a bag and hurried out the door. I could do it on the subway! When I lived in France, a great number of people, men and women alike, used to knit on the bus. I had thought that they were terribly productive, but now I understood that it was just a compulsion, similar to the urge to whip out a smart phone and check email messages, but much more

Another finished piece

satisfying. As I waited at the 2/3 platform at the Atlantic Center, the digital sign informed me that my train would arrive in two minutes. But I couldn’t stand still. I put down my bag, found my scissors and started shredding a green tee-shirt from the clearance bin at Target. Felix had grown so fast that he’d never gotten the chance to wear it. It would finally be put to use.
     A 2 train arrived. I slipped the scissors into my bag, wondering for a guilty moment if scissors are legal on the subway. The car was sparsely populated. I surmised this was due to the homeless person encamped on the far end, his or her scant possessions piled in a dingy baby stroller. I was not sure of the sex of this person as he or she had draped a tattered, off white blanket over his or her head. I assumed that the blanket was for privacy. In my present state of mind, however, I could not help also seeing a living example of textile art. It was a good car, with enough room to shred tee-shirts without
elbowing anyone in the nose. I soon became engrossed in my work, surreptitiously pulling out my

Workshop participant

scissors to start a new tear, weaving and poking, delighting at the knots of blue and braids of green emerging.
     By the time we reached lower Manhattan, the car was becoming crowded, and the homeless person had revealed himself to be a man. He had not removed his blanket, but he had begun talking. I could hear the rise and fall of his voice, deep, affable, and masculine. The rest of the people in the car were very quiet. As I yanked and knotted, my immediate neighbors edged away from me. I realized that my pulling and twisting at the increasingly knotted-over egg carton might be more peculiar than the behavior of the man under the blanket, now busily debating himself in a pleasant and fully engaged tone.
     It probably is peculiar to be happy at the way a torn tee shirt slips through holes in an egg carton, to be utterly focused on creating an object that will not generate income or reviews. Perhaps, the silence of the rest of the car was due to the uneasy feeling of being caught in an underground capsule with two weird people, both unusually immersed in textiles, one wielding a pair of scissors.
     The silence broke at the next station when a woman of some years, who used a walker to get around, struggled to get into the car. “Excuse me,” she said to the homeless man with the stroller. “Would you please move this….this… thing so that people can get by?” The sentiment was evidently shared by not a few others, for there was a general murmur of assent. I am a professional friend of people with walkers and wheelchairs, and I am impressed when I see anyone dependent on wheels brave the chancy and difficult terrain of the subway. So I was pleased to hear this old lady, so mobile and assured of her rights, but I did wince at her tone. This thing, as she put it, appeared to be someone’s home. But the man didn’t take offense, so why should I? The train lurched on.
     The car was now too crowded for me to see the blanketed form of the homeless man or the lady with the walker, but I could feel them, their presence as insistent as my egg carton. We were points of an ungainly and ill-behaved triangle, connected for a brief instant deep below the prosperous streets of Manhattan. I do not always enjoy the subway, but when I do, it often is due to these unspoken alliances and allegiances that can pop into being, only to disperse when the train reaches its station. But do they disperse? Days after my train reached 14th Street, I’m still mulling over my triangle-mates, the three of us bound through fabric, wheels and disruption. I did not see their faces, and most likely, they did not notice me. Yet there they are, entrenched in my mind, making me grin, part of me now.

Interview #4, Victor Calise

    Victor Calise remembers racing down a hill in Forest Park, Queens, out in front of his friends.  His bike hit something.  He flew over the handlebars, and woke up in Jamaica Hospital.  He moved his fingers.  He tried to move his toes.  "Oh crap, I'm paralyzed.  I asked my friend for a gun.  I didn't think I wanted to live.  We had a friend who had a spinal cord injury a couple years before, and I thought it was the worst thing on the face of the earth."

    He was twenty-two, a Queens kids who grew up in Ozone Park and became a plumber.  Twenty years later, he's the NYC Commissioner for People with Disabilities.  He lives with his wife and two
daughters on the Upper West Side.  On the wall of his office, there's a picture of him, looking ridiculously young, in the boxy gear of a hockey player, shaking hands with President Clinton.  He toured Europe on the United States Sledge Hockey Team and competed in the 1998 Paralympics in Japan.

    I met Victor in 2012 when Extreme Kids & Crew needed a space in which to create an indoor play environment for kids with disabilities.  By this time, I had a fair amount of practice knocking on the doors of officialdom, and I knew what to expect: I would be greeted warmly, told that I was a great person, then kindly ushered away, with vague promises for future meetings.  Perhaps some forms that I could fill out would be slipped into my hands.  But when I told Victor that the City should give us space, he swiveled his wheelchair to his computer, and immediately began calling and emailing people.  I watched in astonishment.  A few months after this meeting, Parks allowed us to convert a little brick house in a Clinton Hill playground into CAP House: the cozy home of our bubble tube, ball pit, and squeeze machine, and the site of many a happy playgroup.

    Victor can also jump up curbs on his wheelchair.  He played sports when he was able-bodied, and sports integrated him back into his life when he became disabled.  To help kids with physical disabilities enjoy the confidence and sense of belonging that sports can offer, he and Bill Greenberg founded a kids sled hockey team a couple of years ago--the WSF New York Sled Rangers.  The team has grown quickly, and now has thirty children.  The Sled Rangers' traveling team just came back from competing in Minneapolis.  Victor's face lights up when he talks about the trip.  Some of the kids are from lower-income neighborhoods in the Bronx.  They'd rarely left their borough.  "Now they're on an airplane! Leaving the city! Their self esteem is through the roof."


Definition of Disability:

Someone who needs a little help.

What drives you nuts about disability?
People.  People with disabilities let able-bodied people into their world.  You get a temporary disability, you get all the perks--parking, speedy wheelchair through airport security.  Able-bodied people take advantage of these conveniences.  But they don't let people with permanent disabilities into their world.  There's an enormous lack of access for people with disabilities, whether we're talking about buildings, transportation, or jobs.

Current Project:
Meeting with DeBlasio's new commissioners and pushing the disability agenda.  A bunch of these new commissioners are into equality and they get it.  The Department of Transportation just hired an ADA coordinator, which is great.

Recent Wonder:
We hired a new counsel with 27 years of experience with ADA, Kleo King.  She's general counsel with a background in stadium design and housing.  She's going to be talking to the general counsels of all the other agencies, changing the infrastructure, making NYC a better place for people with disabilities.

Here's the interview, conducted by Eliza Factor and Julia Rothwax.

Interview #3, Christopher Noel

     Christopher Noel (38) grew up in New York City.  At 6'5", he's a big guy whose sport, growing up, was basketball.  He studied business management at Amherst, then returned to the city to begin his career at a publishing firm.  But when he was 28, he fell.  His spinal cord was injured, and he lost the ability to move his legs.  After ten years in a wheelchair, he might still consider himself a "newbie" in the world of disability, but he has made his mark.  As he became more aware of all that was inaccessible to him due to his wheelchair, he became an advocate.  He was on the team that sued the state for more accessible voting booths, and served as a plaintiff in the suit that made the NYC Taxi and Limousine Commission provide more accessible taxis.  This last initiative was one that the Bloomberg administration fought, but is now finally being implemented.
     Chris still enjoys playing basketball, along with football and polo, but he's taken a temporary leave from sports to focus on his job.  Since May of 2013 he's been the ADA Accessibility Coordinator at the Department of Parks and Recreation.  He works on capital projects, conferring with and educating landscape architects, engineers and construction managers on ways to make playgrounds and parks more accessible: more ground-level features, more sensitivity areas, more ramping.  He also develops partnerships between parks and disability groups, creates new adaptive sports programs, and works with members of the general public who have questions about disability.  One of the perks of his job is a nifty adaptable car, emblazoned with the maple leaf Parks Department logo.  It has a hand brake and accelerator instead of foot pedals.  He hops into the driver's seat, folds up his wheelchair and is off.

How would you define disability?

Something that limits you due to x, y or z.  Everyone has a disability of some sort.  No one's perfect.  Everyone has a flaw of some type.  In terms of ADA, we should all be treated the same, because we are all disabled.

How did you get involved in disability?
I was injured in a slip-and-fall accident.   Boom! You become disabled one day.  I went to therapy, therapy, therapy.  After a while I didn't see the return I expected.  I said, let me learn more about disability.  I went to peer sessions, clinics, started speaking to people, even people who didn't have spinal cord injuries, people more in tune with the disability world.  If this is the world I'm going to be in, let me learn more about it.

What drives you nuts about your disability?
The walking aspect.  I was an athlete.  I used to be able to dunk the basketball.  The walking, that's the only thing I would say.

Recent wonder:
Chris used to do outreach at ICS, a nonprofit that manages long-term care for seniors and people with disabilities.  He recently bumped into some old co-workers who told him how much he was missed, and reminded him of this story:  When ICS first hired him, the company was under pressure to expand or lose its funding.  It was a home-grown nonprofit, more like a family than a corporation, and people were crying, afraid that they were going to lose their jobs.  Chris's task was to increase membership by 1000 plus.  He was given a staff of five, all of whom had disabilities: cerebral palsy, spina bifida, spinal cord injury.  None had been to college.  Not all had been to high school.  They were "the disabled people."  They got a part-time paycheck and that was it.  Now they were told to save the company.  They were scared.  They hadn't been given this kind of responsibility before.  They didn't have confidence.  Chris organized them into a team and explained that they'd all take the blame or the credit together.  They got ICS to buy them tables and materials and they went out into the streets.  They chose highly trafficked areas near where Medicaid is, projects and low-income housing and shopping areas around the five boroughs.  They set up their tables and the numbers started coming in.  They saved the company.  "Who would think a group of 5 or 6 people with disabilities would keep people's jobs that weren't disabled?"

Current project:
I've got two favorites:
1. The adaptive hubs.  Last year, Queens was the only borough that did adaptive sports.  Now we have at least one recreation center in each borough that has adaptive sports or programming.  We've got wheelchair basketball in every borough, flag football in two boroughs, softball in three boroughs, wheelchair yoga.

2. The Fifth Annual NYC Parks Paralympics Track and Field Open coming up on Friday, October 17 at Icahn Stadium in Randall's Island.  This is for kids of any ability and should attract 150-300 kids. Parks and the schools work on this.  School buses provide transportation and the event is treated as a field trip. Interested parents should contact christopher.noel@parks.nyc.gov or 646-632-7344 for more information.

Interview #2, Starrleen Simmons

         Starrleen Simmons has shiny bright eyes behind thick glasses, and a snappy haircut that she insists is a mess.  Her voice punctuates the air with enthusiasm, laughter and protest.  She was born with cerebral palsy, and got through high school in spite of her learning disabilities. I met her in 2012, when she volunteered to “play with the kids” at Space No. 1.  One or two days a week during the spring of 2012, she greeted families, played, cleaned up, closed up. She was one of our most valuable workers.
         One day, my daughter Miranda and I were talking with her about dreams, and Starrleen said that her dream was to have a baby. Walking is difficult for Starrleen, as are picking up toys from the floor, and taking off a coat and putting it on a hanger.  I wondered how she would manage the immensely physical parts of parenthood.  Her biggest challenge, however, was what half the women in New York seemed to face: finding a man. Nothing is impossible these days, but still, it is hard to make a baby without one.  Maybe even beyond Starrleen.
         Time passed. Schedules changed.  Extreme Kids grew.  We didn’t see Starrleen so much. Then in the summer of 2013, I noticed a post on FB. Starrleen was pregnant. In the fall, there were pictures from the hospital. There was Starrleen, in the arms of a handsome bearded man, holding a baby to her breast.
         Miranda asked me: what’s Starrleen going to do now she’s gotten her dream?
         I drove over to Williamsburg to find out.  Starrleen lives in a first-floor apartment in a 1970’s behemoth by the J/M tracks and a sprawling Food Bazaar Supermarket. The apartment had been big enough when it was just for her.  Now there is Maurice (36), Kasuan (10 months), and a full load of baby gear.  A recent flood in the building led to the displacement of much of the contents of the apartment, further adding to the clutter. But there is room on the couch to settle down and hold a chubby, curly haired boy on your lap and admire his big, wide smile.  There is that familiar, tired, homey haze of new parenthood, of interrupted sleep, and of life revolving around the diapering, napping and feeding of a child who stops your heart when you look at him a certain way.
         I asked Maurice if he ever thought he’d be a father, and he shook his head.  He didn’t know if he could do it.  Turns out he can. Much of our conversation revolved around how impossible it is to keep babies in their cribs at night, for they are so insistent on snuggling up with their parents.   Because both Starrleen and Maurice have disabilities, home health aides come to help during the day. But Starrleen and Maurice are always in charge. I liked Georgia, the woman who was working there the day that I visited. When she went out on break, Starrleen informed me that not all of the health aides were as good.  “Some of them want to raise the baby themselves. I have to tell them, ‘he’s my baby.  I’m the mother.’”  Her exasperation reminded me of professional mothers I’ve met, struggling with the dynamics of raising a child with the help of a babysitter or nanny.  It’s a complicated situation.  Then again what about parenthood isn't complicated?

How would you define disability?

Disability is sometimes a struggle, but you work through it.

What drives you nuts about disability?
The most frustrating thing about being a disabled parent is the looks I get when I’m walking with my son or pushing him. They’re like, “why is this disabled woman pushing a stroller?” They come asking, “are you babysitting?” No, it’s my kid. It’s his kid. We’re both disabled. When I was pregnant, people stared at me like, “oh my god, who let her get pregnant?” Somebody actually said that.  I’m a grown woman. I’m 32. I'm allowed to get pregnant!

Recent Wonder
Kasuan walking, standing up, and trying to balance.

Current Project
Keeping him alive and one day having another one, saving enough to have another one, because, Lord Jesus, people say “oh, it’s going to cost money,” and you’re like, I got it, then you realize you only got 700 a month and you go, huh?

Interview #1: Brenda Shaughnessy

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

---

Lake Therapy

Last week, my iMac crashed. I took it to the Apple Store, to the young people in blue tee shirts designated “geniuses” who are charged with helping the technologically dismayed and uncertain. My genius informed me that my hard drive was too old and could not be resuscitated. A new hard drive was installed and I spent yesterday transferring data to my blank, but apparently fresh and capable new hard drive. A process that entailed several hours on the phone saying “what? what?” to various disembodied voices.  My hearing is not what it used to be.  Nor are phone connections. The more complex the system, the more liable some part of it is to fray, sputter, misalign, conk out.  Computers are like rigid brains, prone to strokes.  I tell myself that I should go back to a legal pad, and leave behind this all-too-fallible, profit-driven, bound-to-crash machine.  But even if I wrote everything out longhand, I’d have to type it into a computer to get anyone to read it. 

After much effort, I have recovered a great deal, although everything from the past six months is gone, and I find myself in a time warp.  Instead of the proposal I was working on, smack in the middle of my desktop appear words that I wrote about Felix two years ago, when we were deep in the misery the electrical mayhem in his brain can cause him:

We strap on his mitts, so his fisted hands will not bloody his still soft skin.  His face is not yet whiskered, on the cusp, beautiful, even with his self-slapped eyes, his nose as swollen as a boxer’s, his ears scabbed and rusty.  The mitts just came, not the oven mitts fastened with clothesline we’d been using, but medically approved, thirty five dollar, double security Posey mitts used at the finest hospitals for patients who yank at the tubes and IVs, determined to get off their beds and walk, crawl, roll away from the infernal blinking and beeping and record keeping.  Mitts that are allowed on the school bus, that pass muster with the Child Service agents with their thin lips and badges and impossible jobs.

I met a boy who was once like Felix, who moved through the world with no words, no language, who bashed his own head until it bruised and bled. At seven he learned to speak.  Now he no longer hits himself, only says, I want to die.  

Words that bring me back to the time when Jason and I realized that love was not enough, that helping Felix required more energy, more people, more space, more opportunity for renewal than we could muster. 

Right after my computer crashed, I left the broken machine on my desk, packed the girls in the van and drove up to visit Felix at his program in New Hampshire. His school abuts a pine tree lined lake, with a sandy beach made wheelchair accessible by ramps that go right down to the shore. The life guard looked after my daughters so that I could help Felix from his chair. He is so big now, more than 120 pounds. We wobbled, laughing at his weight, and stumbled into the water. The lake bottom was mucky and oozed through our toes.  He yelled, outraged at the cold, then calmed down.  The water held him up; he only needed my hands to steady himself against the uneven bottom. His eyes shimmered.  I spun him around and his laughter rippled over the lake.   

I think about this now, back home, trying to install photoshop.  Without Felix here, I feel diminished, fretting about deadlines that don’t really matter, yelling at the girls for crushing crackers on the floor. How lovely to have patterns of memory that can dilute the power of my desk, allowing me to glimpse his splashed face, his yellowish teeth, his enormous smile, the game way he ducked down to lap up water whenever my attention slipped.  

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

Fabulousness

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...

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.