Sunday, April 28, 2019

Jerron Herman: The 2019 Felix Award Recipient

In honor of Jerron Herman, 2019's Felix Award honoree, we are reposting his wonderful advice to kids--useful for adults, too. Come celebrate him on May 15 at the Felix Awards!

Definitions for Kids

Upon reading this know that I’ve just turned 26. I’m officially in my mid-twenties, an old man. (Don’t laugh!) But I’m writing to my younger self--my silly, creative, bolder self--and I’m remembering how much that person still exists. One of the realities of being a disabled person is the question, “what’s wrong with [insert body part]?” as in, “what’s wrong with your eyes?” or “what’s wrong with your speech?” In my case, it was “what’s wrong with your arm and leg?” I have Hemiplegia Cerebral Palsy. It’s a neuromuscular disorder that keeps the left side of my body from moving voluntarily. Synaptic nerves travel from my brain, but misfire along the way, cutting off signals to my muscles.
And that would be my response, every single time. I would say it as I hung on the monkey bars with one-hand (and totally nail it); I would say it in line for Four Square and Wall Ball, where I would inevitably reign as king of the game. I said it when I turned six, and seven, and eight, but around sixteen they stopped asking. I started to get more looks than questions and though there was less talking to do, I still had to explain how capable I was. I did this by being silly, creative, and bold. By telling killer jokes as I tripped over my left foot, or learning to cut my waffles with a pizza cutter instead of a knife and fork, I became invincible. When I gave someone the definition of Hemiplegia Cerebral Palsy, I was ready.
Here’s a secret, though: I find it easier to just give a medical definition to a six-year-old when they boldly ask than it would be to live without the question at all. This is how I move through life; you may have another way, to which I would say, Yeeehaw! Please email me at… Ultimately, friends, I’m here to encourage you to be your version of silly, creative, and bold. Silliness tells the world you understand your value. Your disability doesn’t keep you from laughing because it offers the same ups and downs as grades, friends, and pizza slices – it’s a part of life, and life is funny. Creativity communicates to the world your higher intelligence. As you adapt to an environment with your disability, be it taking an elevator or striking up a conversation with a stranger, your brain is used a little differently, but always with cool results. Boldness changes as you grow, so there is no one way to be bold, either.
One way to be bold as a young person is to be unafraid to try new things. Once I wanted to rock climb, but I couldn’t do it because the equipment didn’t help me. But notice, I wanted and tried to rock climb, knowing there was a 50% chance it wouldn’t work. Boldness is also not being afraid of your own disability but embracing it as part of you, just like your hair and smelly feet are part of you. You might be thinking, “hey, I can change my hair color and change my socks! I can’t change my disability.” You’re right.
But here’s another secret: you can change how you think about your disability. I used to think my CP was an alien from another world; I didn’t know its language, and it seemed like it didn’t like or listen to me. Now I think of it more as a rambunctious cousin that just needs a PB&J to calm down. That same cousin, though, is the main reason I’m a professional dancer in New York City, working with Heidi Latsky Dance. As I learn to use him, I create really cool art that I never thought was possible. I think my CP and I speak the same language now, but sometimes we still don’t. Changing how you think about your disability opens up opportunities that you can’t imagine.
Back to this scary question of “what’s wrong?” I have rethought why people even ask. I used to think they wanted to hurt or ridicule me. Now, I think they’re curious. I’m so deliciously different from anything they’ve seen that they must know more. I’m an expert with all the answers to the universe (not really).
That’s why I think it’s a good idea to have your answer in mind, friends, to the question, “what’s wrong with [insert here]?” The answer could be a medical definition, or an entire life of rock climbing, laughing with your friends, dancing, or doing good work. Or the answer could also simply be, “nothing.” Each answer would be right.

Jerron Herman is a principal dancer and Company Associate at Heidi Latsky Dance, joining the company in 2011 having never danced before. Since then, Jerron has been featured with the company at venues like Lincoln Center, NYU Skirball, American Dance Festival, and the Whitney Museum. Through press and interviews Jerron was featured in an LA Press Club winning piece by John Bathke, Open Studio with Jared Bowen for PBS, and for his work in the world premiere of HLD's TRIPTYCH, the New York Times called him, "...the inexhaustible Mr. Herman." Jerron came to New York from the Bay Area in 2009 to pursue art and consumes it in varied forms, as a writer, lyricist, dancer, and history buff. 

Tuesday, March 19, 2019

Diversity and Disability

Print by Eliza Factor

For four years, my son went to a New York City public school that is coveted among parents in Brownstone Brooklyn, and that enshrines the false belief that it is inclusive to all. Among a handful of schools, it offers a progressive curriculum, opportunities to connect with similar parents, and what journalist Nikole Hannah-Jones has termed “curated diversity”: the kind of diversity “white parents like . . . so they’ll still be the majority and there won’t be too many black kids.” Its website features the ubiquitous collage of smiling black and brown faces. For the last three years, the school has participated in New York City’s Diversity in Admissions pilot, under which low income children receive priority for a percentage of kindergarten seats. In classrooms, PTA meetings, and on the playground, there were earnest and well-intended discussions about race, gender, and sexual orientation.

But like many progressive-minded schools that attract well-intentioned, well-off families, the school had little interest in nurturing neurodiversity. Although the principal often referred to the school as an “inclusion school,” which means that students with disabilities learn alongside their neurotypical peers and instruction is differentiated for all, it has a massive flaw when it comes to special needs diversity, and that flaw reveals itself in every layer of the community:  the administration, the teachers, the parents, and the kids. 

During the time my son attended the school, both kids and parents stigmatized the Integrated Co-Teaching (ICT) classroom in each grade, which is where many kids with Individualized Education Programs (IEPs) are placed. A student told me he was glad he wasn’t in the class “with the bad kids,” and parents lobbied the administration to ensure that their kids were not placed in that classroom. Kids who struggled to adhere to behavioral norms were particularly singled out. A parent told our sitter that my son, who has ADHD and other special needs, was “dangerous.” One of my son’s classmates referred to him as “a bad boy” throughout the four years he was a student there. The school did little to stop this kind of stigmatizing, despite my requests to teachers and administrators. Parents shrugged it off.

These statements and attitudes harm everyone, but they harm kids with disabilities most directly. The school’s inability to reflect on the damage this stigma inflicted on children with special needs seems at odds with its espoused commitment to restorative justice, which encourages members of the community to reflect on harms, consider their root causes, and determine how to make amends. 

My son, who is now 9, has struggled at school and at home as a result of his disabilities. This past fall, in fourth grade, things got worse, and the school responded by cracking down in ways that flew in the face of its restorative justice ideals. The school suspended my son several times. Each time, administrators violated the Chancellor’s Regulations in numerous ways – including not providing appropriate notice, not collecting appropriate documentation, and not contacting me within appropriate time frames. When I inquired about these issues, school personnel told me that because the school operates within a restorative justice framework, they don’t know how to follow the regulations that govern a suspension.

In one written statement, a sports coach described my son’s behavior as “completely unhinged.” When I pointed out to administrators that it was inappropriate to refer to a 9-year-old child in that way, I received no response. The school social worker then told me there was nothing they could do about it, because it was the coach’s right to use that language. I suggested that similarly derogatory language around race, gender, or sexual orientation would not be deemed acceptable – and received no response. The community’s flaws around special needs allowed the school to overlook the language.

In December, we left the school, where my son had been since kindergarten. I stayed in touch with a handful of parents. Beyond those people, not a single teacher, administrator, staff person, or parent has reached out to ask how we were doing.

Actually, one person did reach out. My son played on a baseball team last spring with several kids from the school, in a league unconnected to it. He loved baseball, and was looking forward to playing this year, so I signed up early. In late February, after sign-up for all baseball leagues was closed, I got a call from the team’s coach. Several school parents had expressed concern about my son being on the team, after word spread about an episode during an afterschool basketball practice that none of them had observed. I can’t put both of us under such scrutiny, so he will not be playing baseball this spring, despite the fact that he has been looking forward to it all year. This is the kind of bullying that highlights the community’s lack of inclusion. When I contacted the school to ask them to intervene, I received no response. 

I am an entitled white person. I have a law degree and a PhD. I don’t have a lot of money, but I know how to access it. I took out a $200,000 loan to pay for a new school, because the public school system cannot educate my son. I recognized when my son’s rights were being violated, and I spoke up. When my son was suspended without due process, I complained. He has me to defend him. I worry about kids whose parents don’t have the resources I have. Those kids, apparently, can still be suspended based on the statement of a principal, without any verification of the statement, in contradiction of the Chancellor’s Regulations. 

As I work through my anger and sadness over how my son and I have been excluded from a community that celebrates its embrace of diversity, I think about an interview I heard with a woman whose child was mentally ill. She said “it’s not a casserole illness” -- people don’t bring you food, check on you, and offer help. My son’s special needs didn’t merit a casserole, let alone a friendly email. They fell outside of the concerns of the school, and of many of the families that seek out schools like this one. We have a long way to go in terms of understanding that diversity includes supporting kids with special needs and their families.

Hilary Botein is an associate professor at the Marxe School of Public and International Affairs, Baruch College, City University of New York (CUNY). She studies the social politics of low income housing and community development. She lives with her son in Brooklyn.

Wednesday, August 1, 2018

The 2018 Disability Pride Parade

The Disability Pride Parade, held annually in New York since 2015, promotes awareness, increases visibility, and encourages support of people with disabilities. It's gotten bigger, more colorful, and happier every year. It's great fun, and something Extreme Kids and their people look forward to. This year, the weather was cool, the humidity broke, and the rain stopped just in time for the parade. Extreme Kids & Crew had a large presence--and a heap of fun.

Don't believe us? Look at our pictures--and come join us next year!

For the first time ever, we had a float, thanks to Caitlin's dad, Jim. He outfitted the back of his truck with a ball pit and decorated the top with festive regalia. Here's the float arriving at the starting point.

 We met at the designated area with plenty of time to pose for pictures...

....grab some balloons... up our parasols...
...and get our signs and posters ready.

When the parade started, we got ready to cause a scene. 

Somehow, Rosey and Marisa commandeered the banner...

...and we all followed them and the float along
the parade route.

We chanted, cheered, and wore clothing that spoke volumes.

We all totally called each other the night before and arranged to wear the same clothes (just kidding, but how awesome is it that the shirts match the parasols?)!

Plenty of friends and fellow-travelers were there to cheer and support us along the way.

We ambled along and took pictures as we went. Sometimes we even took pictures of other people taking pictures of us!

Costumes and capes were optional.

Jumping into the ball-pit afterward was optional, too, but a very popular choice.

We gave our staff and volunteers big love...

...and posed for some group photos....

before going our separate ways. See you next year!

-Liz Wollman (Board member, B&W editor, mom to the pizza-eating dude above)

Friday, June 1, 2018

Student Film: Special Education and the Constitution

by Marisa Luft

The assignment was for one of my classes, which was called Government and You. In the class we began by studying the constitution and learning how to create a film on iMovie. We then prepared and submitted a film for a CSPAN Student-Cam competition. The task was to create a 5-7 minute-long documentary film about a provision of the U.S. Constitution and explain why it's important to us. My group chose to do special education, since I know so much about that topic from my daily life because of my sister, Abby. I thought it would be really important to create this film to inform the public about the topic of special education and its current state in America.

Marisa lives in Brooklyn with her parents, brother, and sister, Abby. Marisa is a talented trombone player and volunteers at Extreme Kids & Crew where her family have been members since 2011.

Tuesday, March 20, 2018

The First Double Helix Felix!

This year, Extreme Kids & Crew is honoring Sam Gold and Amy Herzog with our first Double Helix Felix. Everyone knows who Felix is (if you don’t, you can read about him here), but why a Double Helix, other than the niftiness of the rhyme?

As we’ve learned from countless detective shows, we are identified by our DNA. By and large, our cells are guided by the same instructions for growth and propagation as everyone else’s, but there are tiny differences in pattern and expression that make you you and me me and the magnolia tree in my back yard exactly that magnolia and none other. The similarities of our collective DNA speak to the connectivity of all life, while the differences help define and record the uniqueness of each individual. Celebrating uniqueness and commonality is what Extreme Kids & Crew is all about, so it makes sense to invoke this mother of all molecules in our awards. But I wouldn’t have thought of the double helix were it not for the doubleness of our honorees. Amy and Sam are both recognized for their significant contributions to theater: Gold won a Tony for his direction of Fun Home and Herzog’s 4000 Miles won an Obie for best new American play. They are married, and the parents of two young girls, 2 and 5 years old. They allow me to see a double helix somewhat removed from biology. Picture instead a twisted ladder, the sides the parents, holding and being bound by the rungs, which are the children and perhaps their careers in the theater, and all of these elements are in motion, spiraling around, together.

Herzog and Gold’s family has been given a further twist due to the DNA of their firstborn.  The instructions for her cells include a rare genetic pattern known as nemaline myopathy. This means that she lives with significant physical disabilities. I met her a few months ago when her family came to visit an Extreme Kids’s playspace in a public school in Red Hook. I am proud of our playspace and was trying to show it off; she was proud of her power wheelchair and trying to show it off. Guess who won? Picture her blithely disregarding my instructions, zooming around the halls of the school, a pack of adults running after her, laughing.

As gleeful as she can be, life is difficult for her and her parents. The knowledge that comes from frequent hospitalizations and dependency on complicated, bulky and expensive medical equipment has seeped into their work, alongside deep insights on how disability shapes family life. This understanding took theatrical form in 2017 with Gold’s Broadway production of The Glass Menagerie, featuring Madison Ferris, an actress with muscular dystrophy, and the debut of Herzog’s play Mary Jane, about the mother of young boy with multiple disabilities.

Last March, when The Glass Menagerie was running at the Belasco Theater, Broken & Woken’s Liz Wollman wrote a great review in which she praised Gold for emphasizing the role disability plays in Tennessee Williams’s masterpiece, and for highlighting Laura’s dexterity, awkwardness and strength, and the toll that simply moving from one part of the room to another can take on her and her family. Actors with disabilities have long been fighting for the right to play themselves on stage, instead of watching able-bodied actors be celebrated for how realistically they can pretend to limp. So I was surprised that some critics questioned Gold’s choice of Ferris, even calling it “exploitative.” I shouldn’t have been. “Exploitative” and “inappropriate” are words people use when they are uncomfortable and don’t have the words, inclination, or desire to explain why. My son’s body makes people uncomfortable, too. Discomfort is a natural reaction that goes away with exposure. All the more reason to have more Ferrises on the stage.

Madison Ferris, Sally Field and Joe Mantello in Gold's The Glass Menagerie
credit: Julieta Cervantes
I saw Mary Jane at New York Theater Workshop back in September. Herzog’s play, brilliantly and empathetically directed by Anne Kaufman, with a stellar cast and set design, holds a vivid and powerful place in my mind.   The first of its two acts takes place in Mary Jane’s “junior one bedroom” apartment in Queens; the second is in the pediatric intensive care unit (PICU) of a Manhattan hospital. Four of the five cast members take double, complementary roles. In the NYTW production,Liza Colon-Zaya played the home nurse in Mary Jane’s apartment and the doctor in the PICU. Susan Pourfar was a marketing professional with a disabled child and the Orthodox Jewish mother of seven, one of whom is disabled. Brenda Wehle played the super of Mary Jane’s apartment building and the chaplain at the hospital; Danaya Esperanza was the nurse’s niece and a hospital music therapist. At the center of the piece is the titular character, played by Carrie Coon.

Mary Jane’s almost-three-year-old son is Alex. We never see him, but we hear his ventilator, and the beeps that signal trouble. We know that he is loved, but we can’t see who he is or even guess at his personality until the last scene. Thus he first appears to be a problem, a burden, a worry. Only later do we learn that he is also a stubborn, funny, animal-loving little boy who has brought his mother joy and reckless abandon. This is not a play about Alex; it’s about the web of women keeping Alex alive, and his influence.

Before giving birth, Mary Jane was married and studying to be a teacher. After, she is single and struggling to keep her job as an administrative assistant, a job she needs for health insurance and that she loses once Alex is admitted to the hospital for a weeks-long stay. The facts are grim, but the play is not maudlin, nor is it a tragedy, though it skirts with the tragic. Mary Jane has lost the comforts of a conventional middle-class life and the pleasures of an ordinary motherhood, but she has not lost her humor, her capacity for love, or her deep appreciation of her world. Her life might seem circumscribed to an outsider--an effect generated by the cramped interiors of the set design--but she is not imprisoned.

In other words, this is not a conventional narrative, where the heroine starts off stumbling in the dark, and eventually wakes up. She is awake, though exhausted and struggling, from the beginning. The dramatic movement is more an intensification of experience. When we last see Mary Jane, her son is in the O.R., his condition precarious. Nothing is resolved. Nothing is “better.” Mary Jane is with the chaplain, discussing the goldfish she bought for Alex, when she gets one of the visual auras that often precede her migraines. She studies it, fascinated, aware of its beauty, even as the pain is closing in.

Carrie Coon & Susan Pourfar in Herzog's Mary Jane
credit: Joe Amarante
I see this as an inquiry play. Questions are scattered throughout--”Where are we?” shouts the niece, needing an address to give the ambulance driver; “What is it, mom?” asks doctor, when Mary Jane can’t decipher a medical question that she had wanted to ask. The last line of the play, spoken by the chaplain, is a question. A central query the play investigates is not why, but how its characters deal with suffering. There is the husband who had a panic attack the night his son was born and subsequently left. There is the plunger-wielding super, who believes the body turns suffering into cancer, and that cancer may be outwitted by yoga, fresh vegetables, adherence to building codes. There is Chaya, the mother of seven who understands suffering to be a reality of life. She and Mary Jane meet when Chaya is visiting her daughter at the PICU and pumping milk for her two youngest at home. They get into the sort of candid conversation that mothers in such situations sometimes do. Much of it is funny, but some is groping and unadorned, as when Chaya tries to explain the relief she can feel at the hospital:

There’s so much worry, it’s going in a thousand directions all the time, all I can do is keep track of the things I’m worried about. But mostly I’m worried about: will we have to go back to the hospital, will we have another month in the hospital? Because that’s the worst thing, right? The worst thing that can happen. But when we decide, okay, the disaster is here, we’re going, it’s…

Suddenly it’s quiet. It’s like…

…everything I have been doing, that was very nice, but it wasn’t real. This is real. And it’s a relief, that’s what it is, it’s a relief to get back to it.

Mary Jane left me shaking, overcome with awe and gratitude. I was very pleased when the community education liaison at NYTW asked me to come back and lead a post-performance talkback (Strange Beauty, my memoir about growing up with my disabled son, had just come out, and it seemed a good fit). When I returned for the discussion, I spoke about how well the production captured my own experience during Felix’s hospitalizations: the bureaucratic, stifling atmosphere; the feeling of forever waiting, shot through with dazzling moments of clarity and humanity. It also shone a light on the bonds formed between the families of special-needs parents and the people—overwhelmingly underpaid, overextended, barely acknowledged women—who help them. It was good to see these women honored on stage, as it was to see such humor, liveliness and kindness in the face of disability and dying.

Many members of the audience noted that they had been struck by Mary Jane in much the way I had. A writer who had been caring for her mother for the past fifteen years shook her head in appreciation. “Not one false note,” she said. But others could not see the humor and warmth, only the sorrow; these spectators found it unbearably difficult to watch. I was sad to learn that this play, which I found so luminous, depressed them. But that’s just it. We don’t see things the same way; we don’t experience pain the same way.

We each have our own wiggles, patterns, and experiences that make us us; that’s how DNA works. And yet we share much more in common. Theater, the best of it, reminds us of this. When disability, in all its knottiness and difficulty, is allowed on the stage, it allows us to more fully grasp who we are. Plays like Herzog’s Mary Jane and productions like Gold’s The Glass Menagerie do just this by giving the public a chance to examine the way that disability is interwoven into our lives, to grapple with it, learn from it, argue about it, and chink away at our fear.

So thank you, Amy Herzog and Sam Gold for contributing to the recent spike in representation. Honoring disability is part of our DNA; we’re thrilled that it’s part of yours, too.

Please, come out in person on May 3 and celebrate their Double Helix with us! 

Thursday, February 1, 2018

Getting to Competent

by Terra Turner

I have been an occupational therapist for 30 years. For the past 20 years, I have treated children with developmental disabilities almost exclusively, in home, out-patient and school-based programs. While I am passionate about this work, I generally don’t talk about the machinations of it away from the job. I embraced this strategy early on. It keeps the intensity of the work out of my house and allows my other interests and needs to be tended to. People who know me well know this and don’t ask. When new people come into my life, however, they have questions. Not long ago, I was at an event and as we went around the table doing the “who are you and what do you do” dance, some folk became fascinated with my answer enough to want details on what my days entail.

I told them a story of a particularly funny tantrum one of my kids had upon learning that he would have to get his coat and hat on without the level of support I had been giving him. I knew he was ready. He was sure he was not. He huffed, puffed, fussed, cried, cursed, snorted, snotted and finally, did what I asked. He nailed it on the third try. He was so proud. He had me tell everyone we saw walking to the bus what a great job he did.

I glanced over noting a couple of my table companions had horrified expressions. They were stuck back at the point in the story where the kid rubs his snotty face up my sleeve, wrist to elbow. “I could never do that," one mumbled. I laughed and told her that's how I came to have such a strong immune system and passed the baton to the next person at the table.

When college students come to shadow me, I tell them what I understand to be the most important aspect of becoming a therapist. A head full of kinesiology, anatomy, physiology, and being able to use the most current equipment and treatment paradigms means you are knowledgeable. But being able to move in the middle of someone’s crisis, be with them, and bring that knowledge to bear toward their growth and healing is what makes you competent.

Getting to competent fundamentally changes who you are; from body function (horrific odors no longer make me gag), to what you find entertaining (graphic violence and cruelty now make me gag). My friends tease me about how optimistic and patient they believe me to be. But I’ve spent my adult life watching people go from being not able to lift their head to being able to wave and laugh as they walk out the door. I may seem patient but, truthfully, it's because I can see progress just from the way a comatose person breathes and know that the next phase is dawning and what we can do to cross that bridge.

Thirty years in, I know in my soul there is no situation where “better” is not just do-able, but already on its way, when we choose to be the people who can get there. This isn't a saintly platitude but my world-view. It's the truth every day is built on. A snotty sleeve will never be my first choice, but it's a small price to pay.

When Terra Turner is not working as a pediatric occupational therapist she is a visual artist, avid sci-fi fan, gardener, elder care giver, foodie, community advocate and traveler. She lives in East Cleveland, Ohio in a bright yellow house.