On Squids and Togetherness

The following is an adaptation from my speech at the Felix Awards on May 19, 2016.

I wrote this when I was pregnant with Felix:

If you were a squid,

We could get rid of the baby clothes

And wooden blocks.

We’d put you in a sea chest

Glassy, sadly square, but filled with the best in pebbles and shells.

We’d watch, noses smushed,

Landlubbing bugs with big eyes and tentacled fingers,

Asking each other: do you think it’s happy?

What would it like to eat?

It wouldn’t be that bad,

Except for the neighbors,

The snuffling relatives,

The asinine commentary.

And what, pray tell, is wrong with a squid?

My spittle spotting the sidewalk.

Passersby would shudder or smugly pity.

But when they were gone,

We’d have fun, swirling the water and wondering.

At the time I wrote this, I was in my second trimester and recovering from a bad case of the chicken pox.  The doctors had told me that if you have to get the chicken pox when you’re pregnant, the second trimester is the best time to get it.  There was only a one-in-one-thousand chance that the virus would permeate the placenta.  So I told everyone not to worry. But Felix had stopped kicking.  For a long time, he didn’t move at all.  Then he started too swoosh. Hence the poem.

As I got my energy back and Felix started swooshing more vigorously, I forgot about the poem.  But a few months after he had been born, when Jason and I began to notice that our baby was floppier than other babies, I remembered it.  Felix’s muscle tone was so low that he could barely lift his head. He did loll about in a squid-like fashion.  Oh, my god! I thought.  I must have known, even when he was in the womb! The poem foretold other things, too:  He did attract asinine commentary.  And Jason and I did have fun, when we were alone with him, swirling the water and wondering.

But the poem told me only what I already knew—it did not hint at what I would discover. The poem speaks to the safety and pleasure of a home where you are loved and accepted as you are. I grew up in a home like that.  I knew what it felt like.  I knew that Jason and I could make a home like that for Felix.  But as Felix got older, home was not enough for him.  From the moment that he could move himself about on a walker, he would wheel that walker to the front door and bang it against the woodwork.  He wanted to go out. He wanted to explore the bigger world.

So began the walkabout period.  Sometimes this meant Felix, on his own steam, wheeling his walker down the sidewalk.  But this was a strenuous activity for him and he couldn’t keep it up for more than a block or two. So most of the time, Jason, a babysitter, or I pushed Felix in his stroller, his folded-up walker dangling from the handlebars, for miles and miles around Brooklyn and Manhattan.  When I was at the helm, we had plenty of encounters of the sort my poem had foretold: nervous shuddering, smug pitying, strangled looks of alarm.  But I had been expecting that sort of thing and barely noticed after a while.  What I hadn’t been expecting were those people whose eyes lit up when they saw us, who would break into grins or more contained nods of recognition. Not loads of people, but a far greater range than those who usually acknowledged me when I walked around the city alone or in the company of my able-bodied daughters.

There was an elder panhandler in Brooklyn Heights who effusively blessed Felix as he tucked a five dollar bill in his stroller. There was a black street preacher shouldering a placard warning about white devils who gave Felix a cheery wave before catching himself and retracting. Another memorable encounter happened on a muggy summer day when Felix was nine or ten and I was picking him up from his school in midtown Manhattan. He was in a terrible state.  I did not know why.  It could have been heat, hunger, thirst, frustration. It could have been something else entirely.  Because Felix rarely uses words, there is much about him that I cannot know.  But he makes his feelings clear. At that moment, he was screaming louder than the accumulated honking of all the taxis in New York City, and hitting his face with merciless passion. All my attention was focused on getting us to our car. I felt an instinctual need to shield him from the public when he got like that. I pushed his stroller with my body, while holding his wrists in an attempt to restrain him.  We had to stop for a red light at Park Avenue.  Beside us stood an Asian guy in a business suit.  He took Felix in and nodded in commiseration--not at me. At Felix.  “I feel just like you,” he said.

It could suck walking Felix around. We’d go somewhere in the subway, then get trapped underground because the elevator was broken.  We met with all sorts of indignities, injustices, messes.   But those encounters with other people, no matter how fleeting, buoyed me. Felix was acknowledged, kindly.  I was acknowledged, too, often by people with far more difficult lives than mine, as an equal. 

I am a privileged, white lady.  I am well aware of it.  I would not have been able to start Extreme Kids without the resources that come along with that position. But it is wonderful to be seen beyond that.  We are all so much more than our class and race, our size and sex, our abilities and disabilities.  We have so much potential to connect beyond these boundaries, and when those connections happen, they are immensely powerful.  That is what those walks with Felix really drummed into me.

What I could not have understood when I wrote that poem was that living with Felix would change my view of what people can do and how we can be with each other.  As much as the strangeness and difficulties of Felix’s life could isolate us from mainstream culture, he also led me to a marvelously unpredictable collection of people, most of whose names I would never learn but who nonetheless marked me, ignited me, held me up. Blessed little was ever said during these chance encounters, which were usually limited to a glance or a smile. But their impact was similar to music that went straight to my soul, or a book that seemed to be in direct dialogue with my innermost experience. It was that feeling of not being alone—that it wasn’t just me and Jason, swirling the water and wondering.  There were other people swirling the water, too.

I started Extreme Kids wondering if it would be possible to design a space that would get those zaps of connection happening more frequently and predictably. I also wanted to know if Felix’s ability to break down racial and cultural barriers could be applied more broadly: could our children’s disabilities be used as a force to bring people from different groups together?  I suspected so, but I didn’t have any experience other than my walks around New York with Felix.

After five years of directing and overseeing Extreme Kids, I feel confident in saying: yes. The interaction between families, the relief at being accepted, and the children’s pleasure bubbling up around our playspaces create an atmosphere that works like a tonic.  I cannot remember leaving an open play or event feeling depleted. I realize that other people may:  Children can be exhausting.  But based on other parents’ comments, hugs, letters, and the growth of the organization, I’d say the feeling of renewal is hardly mine alone.  The experience of mothering Felix and overseeing Extreme Kids & Crew has led me to believe that disability can bring out the best in us, and that it has a great, untapped power to bridge cultural and class divides.  At our playspaces, it’s not uncommon to see a Hasidic mother and a Hispanic mother trading notes on IEP’s, or a father from an affluent neighborhood swapping advice about child-rearing with a father from the projects. Most of the time at Extreme Kids, there’s an ebb and flow of people from different backgrounds getting along well, and treating each other with respect and amity.  

When I look at the news these days, I can hardly reconcile what I see at Extreme Kids with the vitriol, distrust, and fear gripping the country. It makes me wonder if it would be possible to use disability to act as a unifying force on a larger scale.  We are all touched by disability: our child’s dyslexia, our mother’s Alzheimer’s, our brother’s autism, our sister’s war wounds, our lover’s accident, our own asthma. What if we could let go of the specific cause or diagnosis, and see that our bodies and minds are always in flux--that trying to force a body or mind into fixed contours is a waste of energy and doomed to fail? What if, instead, we put our energy towards taking care of each other and learning from our differences?  This is not liberal thinking or conservative thinking; it’s old fashioned humanistic thinking and it is alive and well in the disability community, even as it has been drained from general discourse. I amuse myself, imagining Felix running for office, and then start to wonder if he might be a better choice than the other candidates. Not because he could or could not govern--but because of that gift I did not foresee when he swooshed in my womb, his wonderful knack for bringing people together.

Go Vanessa!

A guest post by my friend Vanessa Connelly, Extreme Kids & Crew board member, real estate maven, runner.  

I started running early last year, initially to try to take off some weight. I was heavy, stressed and tired, and I figured that if I gave myself the goal of a race—a half marathon, no less--I would have something to keep me motivated. I signed up for the Brooklyn Half and started a novice training program.

I have reached a point in my life where I‘ve more or less figured out the things that I'm good at, and have gotten pretty adept at avoiding the stuff that’s harder for me. That said, I've never been particularly athletic, and the training program, novice though it was, proved a challenge. I had a lot of doubts and struggled with the fact that the running wasn't coming easily for me. I was red-faced, sweaty and slow in what seemed to be a park filled with dewy gazelles.  But I kept it up and soon realized an unexpected bonus to running: quiet time alone to think.

On my runs, my thoughts often turned to my boys, and especially Silas. Silas is Autistic, and has a hard time

with verbal communication. He is very expressive, but getting words out isn't easy for him, and on some days is pretty much impossible. More often than not, he handles what I know is a very frustrating situation with a lot of good humor and grace. He's crafted ways of stringing memorized text from his favorite shows and movies together to get his point across, usually humorously. For example, A recent game of "dentist" ended with him examining my teeth and saying "the tooth, the whole tooth, and nothing but the tooth!" 

Seriously, Silas is just that awesome.

When I'm feeling up against it on a run, I’ll often think about how hard Silas works to navigate a world that isn't very friendly to his neurology, and that helps me push myself to get uncomfortable—and then to get through it. This, in turn, seems to help me sling off some of the stress that comes with being a mom to a boy in a world that isn't always so kind or accommodating to kids like him. 

When race day finally arrived and I got to the starting area of the half, I felt awkward and nervous. I was doubting myself for signing up for such a long distance, and worried about finishing. I sat down on the curb in my starting corral and started chatting with a young man and his father, who were sitting next to me. It was clear after a few exchanges that the young man, an avid runner, was Autistic. He had attended schools in Manhattan that we were considering for Sy, and he and his father told me about them and gave me some pointers for the run. They told me about the many races they had run together, and about their future plans to run a marathon. I thought about them a lot as I ran the long alphabet stretch of Ocean Parkway toward Coney Island.

I also thought about Silas--how he had somehow overcome our short-legged body type, how he is so joyful when he is running, how easy the wide strides seem to come to him. I thought about how years down the road, if I can continue the training, I may be able to keep up with him on the races we will run together. 

Silas looked great wearing the medal I got for finishing that day. 

Interview #6: Rebecca Alson-Milkman

A few weeks ago, while I was scouting for this year’s Felix Award, I went to see No Clean Lines, a show curated by the dancer and choreographer Rebecca Alson-Milkman, which featured three generations of choreographers making work about disability from three different perspectives. I had organized similar evenings myself, though centered around writing, and had found them immensely rewarding. But this was even better: I didn’t have to do any planning.  All I had to do was buy a ticket, and get to the Muriel Schulman Theatre at Triskelion Arts on Calyer Street in Greenpoint.  

I once lived in Greenpoint, 27 years ago, and back then I loved nothing more than tramping through the neighborhood’s abandoned factories and lots, some of which were filled with old sewing machines, and escaped threads from moldy spools that flew from I-beams.  I knew that a lot had changed since then, but I had glanced at a map and I had my phone, so I wasn’t worried about finding the theater. I climbed out of the G train and confidently set down Manhattan Avenue, buttoning my coat against a piercingly cold wind, which I would subsequently blame for freezing that part of my brain that knows how to orient itself. A series of unfamiliar street signs ensued, all of which I ignored. Eventually I realized that I should have long since been there.  I checked my phone, only to discover that I was late, and had been walking several blocks in precisely the opposite direction of where I was supposed to be going.  And so it was that I reached the theater out of breath, my heart pounding from running half a mile in heeled boots, my face red from embarrassment at the effort—and my error.

no clean lines in the drying concrete  photo credit:  Julie Lemberger

I did not start this article intending to write about getting lost, and yet I find that I cannot broach the show until I explain the getting there. For the dances were similarly disorienting, though purposefully so.  There was no curtain, no introduction, no one telling us what we were about to see.  It began with this: a young woman, walking with a strange gait, setting a tape recorder on the floor, speaking the same phrase into it, looping the phrases over each other, providing a muffled rhythm to which she danced, her movements jerky and yearning, her aloneness palpable. This was Alyssa Gersony, performing in her own piece, this place with the pretty-sounding name, a meditation on the incarceration and de-institutionalization of those children with disabilities who had been trapped in Willowbrook, a state-run facility on Staten Island that called itself a school, even though no lessons were ever taught and its living conditions and overcrowding rivaled those in the worst prisons.  

The second piece, Tourette Flouret, was choreographed by the LA-based Victoria Marks for the dancer Alexx Shilling, who stood before the audience in a black dress and presented us with her face, upon which she performed a remarkable and lighthearted procession of tics and eye pops.

no clean lines in the drying concrete   photo credit: Julie Lemberger

The show was anchored by Rebecca Alson-Milkman’s own piece, no clean lines in the drying concrete, with original music by Aaron Drake and a set by Piper Mavis.  If the first two dances were brilliantly disorienting solos, this one grounded me in the deepest of ways.  no clean lines in the drying concrete examines disability through the lens of family, and was inspired by Alson-Milkman’s own experience as the mother of a child with a rare neurological condition called Jacobsen syndrome.  The three dancers, Donna Costello, Jamie Graham, and Alexis Steeves, by turns graceful, staggering, exhausted, energetic, broken, revitalized, together and apart, invoke the difficulties and friction, tenderness and care, interdependence and solitude of family members as they seek to support one another and grow on their own.  Pop a couple more children in there—along with an anxious dog and a territorial cat--and I could very well have been watching my own family.  I imagine I was not alone; the dance brilliantly suggested the age-old struggles and joys of family life, particularly the intricacy with which the bodies intertwined to hold each other up. 

 no clean lines in the drying concrete  photo credit Julie Lemberger

When I reflect on this evening, I keep going back to the feeling of being lost and then found--that moment when I thought I knew what I was doing, then realized that I didn’t; that disorientation, and then the strange shame at disorientation, as if we are always supposed to know what we’re doing; and then the shame dissolving into warmth and intimacy as I found myself among people bravely exploring interdependence and imperfection.  I had not, until lingering on this evening, so clearly grasped the relation between disability and disorientation.

The following week, I met with Rebecca Alson-Milkman, eager to hear more about her son Elliot, and how he has influenced her art. I soon found myself in one of those effortless, far-reaching conversations that burble up when people who have learned similar life lessons meet. Rebecca told me that for many years, she was reluctant to integrate her experience with her son into her art, both to protect her son, and to keep something of her own that wasn't affected by his disability. But after completing two projects that were more overtly political in nature, she found that everything she had left to say artistically had been shaped by the new information she was gathering as Elliot's mother, and by seeing the world through his eyes. I am glad she took her art in this direction. She will be honored for it at Extreme Kids & Crew’s third annual Felix Awards Benefit, to be held May 19, 2016, in Brooklyn. Mark your calendars!

The Rebecca Alson-Milkman Interview

1. What is your definition of disability?

This is so hard, because it is so personal. I think with my son, Elliot, I have strived so hard not to categorize him in any one way or let him fall into people's diagnostic boxes. Of course, this runs into some problems with receiving funding to meet his needs, since diagnostic categories are the basis for children with special needs to get served by both medical and government institutions. But I have felt strongly that the way he perceives the world and acts in it are highly individualized, and based on extraordinarily creative neural and anatomical connections that deviate from what a "healthy," neurotypical person experiences. This sometimes makes life much harder for him, because the world is not set up for him. But when we are able to get him the additional support he needs and find people who make the extra effort to adapt to him (and there are so many wonderful people working in the world of disability or special needs), he flourishes and shows us all of the amazing ways he has come to understand the world.

I guess one other answer that takes into account the above and is part of how I have come to integrate disability into my recent choreography--sometimes marginalized, always living in a state of transition in between two worlds: the state of individual perception and the state of others' expectations.

2. How did you get involved in the disability community?

Growing up, my parents were both special education teachers, so I always had an awareness of learning differences. Then, when I was in my twenties and trying to support myself as a dancer, one of the many jobs I did was being a part-time tutor, exercise coach and afterschool babysitter for a girl with pervasive developmental disorder. But I didn't really get involved until I had my son, Elliot, who was born with a rare genetic syndrome called 11q terminal deletion, or Jacobsen syndrome, which has a lot of medical and learning effects or implications. 

         

3.  What drives you nuts about disability?

Mostly the way it is still treated in society- that different is somehow less than, and still a punchline. My husband and I seethe over the way "retard" is dropped in mainstream comedies, or even out of the mouths of friends of ours. We seem, as a society, to be becoming quickly aware of all sorts of ways that different cultures perceive the world, how people perceive their own race, gender and sexuality, but there is still a hair-trigger denigration of people who have some level of disability, and a lack of adjustment to that by societal institutions like schools, playgrounds, medical facilities, government funding, etc.

4. Any recent wonders you'd like to share?

A wonder or maybe just an act of hope- I am due to give birth any day now to another child. And so glad I completed a dance about three before my family becomes four.

For more about Rebecca, check out her site:  www.alsonmilkmandance.com

Photographer:  Julie Lemberger: http://julielemberger.com/

A guest post by my good friend and Extreme Kids & Crew board member Micaela Walker, taken with her permission--and after some struggle with my computer--from her wonderful blog, roanandlula.blogspot.com:

The First Annual Disability Pride Parade took place in NYC on Sunday, July 12. It was hot as blazes but scores of people of every degree of ability walked and rolled in support of better access, greater resources, and louder voices.

I like to think that "Pride" stands not only for a refusal to be ashamed or silent about disability, but as with a pride of lions, a family of people of all ages and strengths looking out for each other.  And as there isn't a single one of us that will escape needing to be cared for at some point in our lives, it behooves us all to protect our pride when we are best able to do so.

Extreme Kids was out in full effect, wisely outfitted with colorful parasols.

Hilt Projects contributed cut out signage.  Thanks Sam!

Extreme Kids & Crew Founder Eliza and Director Caitlin

Felix came all the way down from New Hampshire to participate.

Maeve and her dad, waiting for the parade to get going.

The parasols were key to keeping cool.

Spray bottles helped, too.

Ready to roll.

The parade celebrated the 25th Anniversary of the Americans with Disabilities Act.

The homemade signs were bold...

And seriously on point.

It was a pretty inspiring scene.

These two were in training as service dogs.

Love the ears!

So many different groups were represented.

Voices were heard in so many different ways.

Many different languages were spoken.

SAG-AFTRA (the actors union) represented (shout out to my dad!).

The heat necessitated some breaks.

And then we marched!

The march ended at Union Square.

Eliza, Happy, Felix and Arun.

Eliza and her muse.

Micaela

Abby.

Extreme Kids & Crew

Disability Pride

A friend remarked to me what a bad shot of luck I’d had, having a child like Felix. Her comment took me by surprise, because  she understands that my love for Felix, and his influence on my life, although at times excruciating, has been overwhelmingly positive. There was no pity in her remark and it did not offend me--it just struck me as funny.  I do not think of Felix as bad luck, though perhaps I might once have.  To say that Felix himself had a shot of bad luck makes more sense.  No one would wish brain damage on their child, and if I could, I would breathe back into life all the white matter that died when he was in my womb. I would give him freedom of movement. I would give him the freedom to speak the thoughts, emotions and observations that animate his mind.  But I cannot, and Felix has figured out other ways of being and communicating.  He has turned out to be as powerful and beloved a personality as any I know. He is growing.  He is learning.  He is making his mark. More times than not, he changes the air in the room for the better.

I bring this up because people have come to me in confusion regarding New York City’s upcoming Disability Pride Parade.  Is it for gay people with disabilities? Well, sure.  But also for straight, asexual, queer, noncommittal, nonaligned. The pride referred to does not refer in this case to gender or sexual identity, but instead the pride of being a person with a disability.  My friend’s comment reminded me that for those steeped in mainstream culture, the very concept seems strange:  why would you be proud that part of you is broken, lopped off, erratic, weird? This makes me start laughing again.

I am not proud of Felix’s disabilities per se.  I am proud of what he has done with them.  I am proud of his spirit--that humorous, indomitable, passionate spirit that characterizes him, a spirit that surely has been influenced by, but is also deeper than his paralysis and autism.   I am proud of the world he has made for himself and the world we have made for him. I am proud of what we have worked for, together. 

I have my hesitations about identity politics.  We  separate people according to sex, sexuality, race, religion, or (dis)ability, let them squabble over ideas and definitions while those who wield the most power--no matter what their ethnicity, gender or culture--continue to hoard the resources, produce more armaments and gizmos, ransack the earth. Talk about divide and conquer. But here I am now, excited about the Disability Pride Parade, planning Extreme Kids & Crew’s gerryrigged pickup truck float, hoping that you’ll come march with us. 

Let me explain. Disability is the most inclusive of identities. It cuts across the lines we commonly use to separate each other: rich, poor, black, white, American, immigrant, man, woman, child.  The 20% of Americans legally considered disabled encompass a wider swath of humanity than the 80% considered “fully functioning.” They are those who see visions and those bound by the literal. They are child prodigies and children locked away in juvenile detention.  They are professors, movie stars, homeless people, veterans, mothers. They are blind, deaf, dyslexic, epileptic, bipolar, amputated. They have Aspergers, ADHD, and Alzheimers. They are all, in some way or another, stigmatized.

The stigma associated with disability may come out in a hushed tone, an averted gaze, or in outright discrimination.   People with disabilities are systematically marginalized, ignored, impoverished, and barred from much of American life. Get yourself into a wheelchair and try taking the subway or seeing high enough to read the names of the politicians on a ballot in a voting booth. Try getting a job with a mention of mental illness on your record.  Trying finding an adequate public school for your child with multiple disabilities.  The one arena in which people with disabilities are overrepresented is in the prison system.  The vast majority of youths in juvenile detention have learning and behavioral disabilities.  Of the entire adult prison population, 40%  has a significant mental illness. About 75% are functionally illiterate, suggesting that a great many of these prisoners have learning disabilities that were never addressed as children.  This is not surprising:  Poor children with dyslexia and ADHD rarely get the help they need.  As a result, they are cut  out from the literate world, denied the possibility of decent work, not given a place at the table. 

You may not identify as disabled, yet. You may never identify as disabled. Disabled people, as my daughter Miranda once said, may “freak you out.”  Yet the chances are that at some point, you will be disabled, whether you like it or not.  We are all born disabled, unable to walk or talk, dependent on caregivers to keep us alive.Most of us, too, end up disabled, and a great many of us are confronted with new and strange disabilities  during that great in-between that spans birth and death.  My father’s mother used to rail against sidewalk curb cuts for people with wheelchairs, strollers, walkers. Too much money to help too few people!  It was difficult for her later on when she had emphysema and we had to push her around in a wheelchair. Her path was made so much smoother by those curb cuts, her ability to pee made possible by wheelchair-accessible bathrooms. 

Those curbs and those bathrooms did not appear out of nowhere: they were hard-won victories.  The disability movement has been called the last wave of the civil rights movement, although disability rights activists have been laboring for change since World War I vets returned, expecting to find jobs and rehabilitation after losing their limbs in battle. Over the years the movement has grown to encompass groups representing disabilities of all kinds.  Their work began to pay off in the 1970’s with the Rehabilitation Act--which, for the first time in history, protected the civil rights of people with disabilities by law--and the Education of All Handicapped Children Act, later IDEA--which guaranteed children with disabilities equal access to public education. In 1990 ADA, the Americans with Disabilities Act, was passed, ensuring equal access to employment and public accommodations.  Clearly, enforcement of these laws leaves much to be desired, but they are powerful tools with which to advocate, and should be celebrated.  This year’s Disability Pride Parade honors the 25th anniversary of ADA.

Yesterday, Felix, Miranda, Happy and I went for ice cream cones at the Harvest Market in Greenfield, New Hampshire, down the hill from his school. Felix is too heavy for me to lift out of our car these days--an accessible van is in the works, but the paperwork involved in these things is glacial. So for now, an aide helps me get him in, and there he stays until I can find someone to help me get him out.  At the Harvest Market, the girls sit at a picnic table, while Felix and I stay in the car.  It’s not so bad.  The door slides open, letting in the sunlight and the breeze.  I hold his cone for him and he licks the chocolate ice cream.  I tell him about the Disability Parade and how we’re going to take him to it so he can participate.  He chuckles.  He waves his head in approval. He likes to be in the spotlight. 

I am marching for Felix.  But I am also marching for myself.  The touchstone of the disability rights movement is inclusion. I am marching for this ideal, for flexibility and openness, for an understanding of the harm isolation causes. I am envisioning a world where we all have a voice, even if that voice is computer generated, or like Felix’s, mainly wordless. Where real disabled people get to play the roles of disabled people on TV. Where the monoculture of standardized thinking is pollenated by the perspectives and patterns of those who think and perceive the sensory world differently  

I am marching for the kind of world that Felix sometimes lets me experience. Walking the streets of Brooklyn with him is different than walking those same streets alone or with my daughters.  Different people recognize us.  Felix’s laughter, his situation, his difficulty melt through barriers of class and culture like a magic wand.  When I am with him, I feel my whiteness less and my class less. I am acknowledged as an equal by high-fiving panhandlers, women in veils, Asian men in dapper suits, homeboys in hoodies. I feel myself recognized as a person far closer to the one I feel inside.  It is a great release. I want more people to experience that kind of altered universe, more moments of unspoken solidarity flaring up on the sidewalk, more understanding of our deep connections to one another.  I am marching to fan the flames of that. 

People with disabilities have much to contribute to the larger culture.  They are, by and large, masters of humor, grit, endurance, wiliness, originality, and empathy.  If we give them what our laws decree, all of us will benefit.  This is what inclusion means to me.  Come march with Extreme Kids & Crew and tell me what inclusion means to you.  

The parade is on Sunday, July 12. It will begin at Madison Square Park, and end at Union Square Park. There will be a small stage at the start line with some entertainment. The main stage will be in Union Square. The parade will conclude with a festival including entertainment, vendors, and speakers. 

Contact me at elizafactor@extremekidsandcrew.org if you want to march with Extreme Kids & Crew. I’ll set you up with a tee shirt and further details.  I hope to hear from you!

The 2015 Winner of the Felix Awards: Maysoon Zayid!

Maysoon Zayid grew up in Cliffside Park, New Jersey, the fourth of four daughters, in a close-knit immigrant family.  She speaks fondly of her childhood and her hometown.  Her cerebral palsy did not incite bullying, nor did her Palestinian background. Her neighbors may not have caught on to their roots.  Her family could have been taken for a darker shade of Italian.  Yet as she reveals in her immensely popular TED Talk, there was a difference.  All her friends got to go to the Jersey shore for summer vacation.  Her family took her to a war zone, where her father tried to cure her palsy in the magical waters of the Dead Sea. 

The Felix Awards were conceived as a way to honor individuals who are using the arts to change the public perception of disability, and Maysoon Zayid is the very embodiment of this idea.  In her routines, she turns her cerebral palsy into a subject for laughter, pointing out that it’s just one of her many problems: she’s a woman, she’s Muslim, she’s Palestinian, and she’s from Jersey.  She helped introduce stand-up comedy in the Middle East, even though her condition will not allow her to stand up for more than three minutes.  She co-founded the New York Arab-American Comedy Festival, and she has challenged mainstream America’s understanding of disability by contributing to  “Countdown with Keith Olbermann,” appearing on ”The Queen Latifah Show,” and starring in ”In Deep Shift” on the Oprah Winfrey Network.

Like many people in the disabled scene, Maysoon does not like the term “inspirational.” Stella Young, a wheelchair-bound Australian journalist and comic who died last year at 32, coined the term “inspiration porn” as an antidote to those who get misty eyed at the mere sight of a person with disabilities. 

I think I understand.  After I started Extreme Kids, a surprising number of people called me an inspiration. I tried for polite puzzlement, but inwardly I bristled.  Maybe some image you’re projecting of me is inspirational, but the real me? That cauldron of black humor that keeps me company as I walk down the street?I’m not a ray of invigorating sunshine, people.  My discomfort stemmed from the sense that I was being awarded more than my fair share of praise.  I had the time, resources, and obsessiveness to lay the groundwork for Extreme Kids. These qualities were not all within my control. Further, the project would have gone nowhere without the encouragement and participation of dozens, and then quickly hundreds, of other people.  The culmination of a great many people’s yearning and will made Extreme Kids work, not me and my circumstances alone.  

But that’s how we operate. We take individuals and pull them away from the clusters of other organisms and people they are bound up in, the generations of family struggle, the oak tree in the back yard. The complexity of life gets simplified so that we can function, and we find ourselves symbols, standing in for much more than we are.

For years, the core of Felix’s exercise routine revolved around him climbing up a flight of stairs.  When his energy was bright, his face would glow with determination and pride, and everyone in the house would gather around, cheering each step. Once, on a particularly good occasion, he managed to do four or five steps all by himself, just him on the banister and the rails, with no adult help.  Gus, my friend’s teenage son, steeped in his own miseries, watched, his eyes clearing.  When Felix attained the top step, Gus said, “That’s enough to get me through the week.”  Felix did not mean to lift Gus out of his blues, but he did.  Is that such a bad thing? 

Maysoon Zayid inspires me and a great many others whether she wants to or not.  She does not inspire because she has cerebral palsy--she inspires because she has the guts to get up on stage and playfully examine the reality of her condition--and ours.  She does not know if she would have had the ambition and strength to do this were she to grow up today.  As a girl, she was unaware of the rancor, brutality and prejudice directed against people with disabilities, immigrants, and Muslims—a sort of innocence that is no longer available to those with access to the internet.  In an attempt to create a similarly encouraging environment for today’s children, she rallies against on-line bullying, but my favorite of her projects takes place outside of virtual reality.  Her non-profit, Maysoon’s Kids, helps to build wheelchair-accessible playgrounds in Palestine.  She has my gratitude and respect for her art, and my undying love for building playgrounds in a war zone. 

Come see her yourself at Extreme Kids & Crew’s Wonderland Gala, which, by the way, is being sponsored by Matt Stone and Angela Howard. Yes, that Matt Stone, co-creator of South Park and the fabulous wheelchair bound Timmy.  For those of you who are out of town, or who have a very good excuse for not attending, you can watch Maysoon's TED Talk and catch up on her latest work at her website www.maysoon.com.  

Tickets for the Gala are free for all those who donate to Extreme Kids & Crew’s A Ball Pit in Every Borough Spring Campaign.  You will get your invitation as soon as you donate.

As you’re stretching those generosity muscles, please consider contributing to Maysoon’s Kids, too!

I think of soul as the feeling of unfettered life that we have within us.  Felix embodies this feeling so fully that he can seem like the soul exposed in all its fury and exaltation. Because of this, I sometimes attribute an age to him that he has not attained. 

The soul is ageless.  My father put it well when he remarked that he sometimes feels as he did when he was a seven year old boy, wanting to jump up and touch the branch of the overhanging tree, other times he feels as cocky and lusty as he did at twenty, or as old and reflective as his current, silver haired age allows. 

Because of Felix’s soulfulness, I forget sometimes that he is a boy with a slapstick sense of humor who laughs when we trip.