Sunday, July 19, 2015

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,

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.



Extreme Kids & Crew

Wednesday, June 24, 2015

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 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!

Sunday, May 17, 2015

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  

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!

Monday, February 23, 2015

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.

Monday, January 12, 2015

Interview #5, Emily Holl

It started when Miranda, Felix’s younger sister, was about six months old.  She would be strapped to my chest in the Baby Bj√∂rn, her back to me, her arms and legs jouncing in the beguiling way of a typically developing baby.  Felix, then four, would be in his stroller, whooping or wailing or jingling a jangle, his feet encased in braces, his walker precariously balanced on the handlebars. More than a couple of people, people I had not met before, complimented me on my children and then, after excusing themselves for their presumption, begged me to have another.  They would explain that they grew up with a disabled brother or sister, whom they loved, but who made everything difficult. They would express gratitude for their other, typical, brothers or sisters, who understood the strangeness of their family.  If they didn’t have this other brother or sister, they told me, they had always wished for one.  I did not usually appreciate unasked-for advice, but it was hard to take offense at these people.  They spoke from their own histories, their voices often quavering.  

That was my introduction to the passion of siblings, which in the disability world refers to the neurotypical brothers and sisters of people with disabilities. Much has been written about the emotional, physical, and financial strain a child’s disability can cause his or her parents.  Less attention has been paid to the complex and shifting net of emotions experienced by siblings.  This is beginning to change, partly because people with disabilities are living longer, and are more often outliving their parents. Siblings are thus increasingly looked to as the next generation of caregivers.  

In 1990, the Sibling Support Project was founded to help connect the millions of brothers and sisters of people with special health, developmental and mental concerns. Perhaps the most well-known initiative of the Sibling Support Project is Sibshops, a peer support program for school-age siblings, which now has 475 groups in eight countries.  Older siblings can connect on SibNet, an online community that counts thousands of members from around the world.  And now Don Meyer, the creator of Sibshops, and Emily Holl, a founding member of sibsNY (a local chapter of the Siblings Leadership Network), have co-edited a handbook intended to help siblings at every juncture of their lives.  The Sibling Survival Guide  addresses issues that come up in childhood, adolescence, and adulthood, including “the g word” (guilt), caregiving and self-care, dating, starting a family, future planning, the end of life, and everything in-between.  The handbook aims to give siblings both practical advice and emotional support.

My friend and collaborator Julia Rothwax--herself a sibling--and I interviewed Emily Holl in December in her cheerful little office at the New York League for Early Learning, a YAI preschool on the West Side Highway in Manhattan.  

Working definition of disability:  We all have disabilities and we all have abilities. We’re all good at some things and not so good at some things.    

Entrance into the world of disability:   Peter, my older brother, is diagnosed with Fragile X Syndrome.  I did not realize that he was different when I was young.  He could ride a bike before me.  He could shoot hoops before me.  He was my big brother, my first friend. It wasn’t until I went to the same public school as he, and saw that he was given extra supports, and that the kids teased him, that I understood.   It was a horrible experience.  

Your disability: I am terrible with direction: north, south, left, right. . . huh?  I have a tendency to automatically turn right.  Peter could look at a map from the time he was five years old, and could tell exactly where we were. 

Recent wonder:  It’s more of a constant wonder.  Over the years, just working at YAI, I’ve seen people get involved at YAI who have no connection with disability.   They haven’t lived with it.  It hasn’t affected someone close to them.  I often wonder why. What enables certain people to have that sense of graciousness, and compassion, and giving?  Why are they the ones who step up and make a difference?  They just get it. Somehow they just get it.

Current project: Why, The Sibling Survival Guide! Which I co-edited with Don Meyer.  All proceeds of the book will go to the Sibling Leadership Network.  For those of you interested in purchasing a copy, the best way to buy the book and simultaneously support the Sibling Support Project (at no extra cost) is to order it through its A-Store

Thanks to Julia Rothwax, who has become my co-interviewer and sound person, you can now listen to Broken & Woken interviews!     

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