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...

....open 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)

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.

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! 

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.

Love and Memory

by Hilary Reyl

Before her dementia, my mother was the rational one among us.  As the daughter of a psychoanalyst, she had learned to indulge the emotional outpourings of others. I have endless memories of her on the phone to her friends, asking leading questions, providing supportive, feminist responses.  But I cannot recall hearing her confide.  Her manner and vocabulary were so straightforward that there was nothing confused or needy about her.  She had no place for histrionics in herself.  I supposed she didn’t think her own emotions would be particularly interesting to others.  Yet I longed to know them.  

The author and her parents.          photo credit: Joanne Leonard

When she met my father in the early 1960’s, he was suffering from throat cancer and had been given three months to live, a reality she successfully denied.  She acted as though it were the doctors’ job to be conservative and hers to keep life moving along.  Buoyed by her stubbornness, and soon by two daughters, my father lived on for thirty-four years.  Having lost his voice to the cancer, he spoke in a whisper that sounded like static to the untrained ear.  Only my mother, my sister and I could understand.  We translated for him to the outside world.

When our mother talked about the early touch-and-go years when my father was in and out of surgery, she did not discuss passion, but neither did she discuss duty.  She let the fact of her loyalty speak for itself.  It was left to my sister and me to overlay her story with our own considerable romanticism.  We told it to each other as a miracle, a leap of faith, an epic of sacrificial love.  But these were our own notions. Our mother made it clear that she was not a nurse, and that our father had to care for his own wounds in private.  Ours was not a sick person’s house.  We had a disabled father, like we had a pianist father and a Chinese scholar father.  She did not indulge in any cult of victimhood.

Our mother was realistic about the fact that she would be the family breadwinner.  Once my father had exhausted a series of academic grants allowing us to vagabond through Europe for a few years, we moved back to start middle school in Pasadena, California. It was decided that my father would be the parent at home. My mother would support us and make sure we had health insurance.  Since she was a visual artist, she said she wanted to use her eyes; she turned to cytotechnology, screening cells under a microscope for signs of cancer.   She trained for two years and went on to work for twenty-five.  

When my sister and I told her we felt guilty that she had to spend her days in a lab instead of an artist’s studio, she replied that we shouldn’t worry about her: if she’d had the burning desire to be an artist, she would have found a way.  Others had: she mentioned Toni Morrison, writing all night surrounded by babies.  It wasn’t our fault that she didn’t have such ambition.  She said this with a smug optimism, pleased with herself for coming up with an airtight, logical argument.  Her smile was unassailable.  She was fantastic at strategy games, even though she said she didn’t care about winning.

My sister and I were sometimes frustrated that our mother didn’t have more ego.  Seeing how smart she was, we felt she could have been “somebody”: a big lawyer or a judge, maybe, or an art director or bestselling crime novelist.  But she liked to read crime novels, take baths, and help people.  

She helped found an alternative school to combat segregation in the Los Angeles school system.  She went to Guatemala to screen pap smear slides because cervical cancer was the leading cause of death for women there.  She talked her friends through endless troubles and joys.  She nurtured my sister and me with beaming pride and her conviction that we were wonderful.  Once we were off to college, she opened our house to groups of Central American refugees.  She went to Ohio during the first Obama election to help people get to the polls. 

When our father died, he left a letter asking for his ashes to be scattered in a stream in Tuolumne Meadows in the High Sierras--his favorite trout fishing spot.  He died in January, 1997.  We had to wait for the snow to melt to drive up to Yosemite with our mother, our fiancés and our father’s two best friends.  The night before we left, our mother stayed up all night, sewing silk pouches for us to carry his ashes in.  When we told her she should get some sleep, she said quite firmly that she felt sewing these pouches was what a wife should do.  But otherwise, there were few words.  She took care of us by giving us beautiful vessels, by comforting us, by not drawing attention to her own pain.

Nearly ten years ago, when our mother began to lose her memory, my sister and I came unmoored.  We argued with her when she misremembered, trying to bring her back to reason, to set things right again.  She was the rational one, after all.  How could she not remember which granddaughter did gymnastics and which one loved dogs?  How could she not remember the plans for tomorrow that we had discussed over and over again?  How could she not know how to roast a chicken anymore?  Where was she?

Over time, slowly, we began to let go.  There was a moment when a close friend’s father died, and I called her for comfort.  This was a man my mother had liked immensely.  He had thrown an engagement party for my husband and me.  He was part of the fabric of our life.  My mother gave me generic words of support over the phone, but I could tell she had no idea who I was talking about.  She could no longer nurture me.

These days, as her hold on the present continues to loosen, the emotions our mother long left unspoken are surfacing.  As her rationality dissipates, she is becoming sentimental in her own right.  And she is letting us into the private landscape she shares with our father in her mind.  She speaks of him often, extolling him, missing him, making sure we know how much he mattered to her--and to us.  Her logic is fantastical, but then, the truth is no longer in fact.  She tells us that he is responsible for all good things in our life.  When we are driving now, no matter which car we are in, she invariably says how lucky we are to have such a good, safe car, and how thoughtful it was of my father to buy it.  “He took such good care of us,” she says.  Often she follows this by “Do you remember him?  He was a wonderful man.”  We tell her that he lived until we were twenty-seven and twenty-nine.  And she exclaims, “So you did know him!  I’m so glad.  I have to write that down so I don’t forget.”    

Last time I was in California, I took one of my daughters swimming and my mother watched us.  Afterwards, she told us that my father had taught her to swim, and that swimming was one of their favorite things to do together.  I did not remind her that my father had had a tracheotomy and that if his neck was ever submerged, he would drown.  She was channeling the stories of his prowess as a young man, when he was a star on his high school and college swim teams.  She had forgotten the many anxious hours she spent while he fished for trout on motor boats on Sierra lakes.  If he ever capsized, he would drown.  But not anymore.  Now, in her romantic delusions, he is her strong partner in the water. 

Our mother lives in a retirement community called Ocean House, on the water, across from the Santa Monica Pier.  She goes for long walks on the beach.  When she takes off her shoes, she sighs and tells us how much she loves the feel of the sand between her toes.  The mother who raised us would never have bothered us with her own physical impression of sand.  It is a gift to discover now.

She tells us that she is having memory problems, that she can’t understand what is happening to her, that she hasn’t always been “like

this.”  Often she will attribute her confusion to something physical: low blood sugar, or a concussion from an ice skating fall when she was a girl.  But more and more, she talks about missing her husband.  

“Do you know why I am like this?” she asks. 

“What do you mean, Mommy?”

“I’m like this because I lost the love of my life.” 

Hilary Reyl is a writer who lives with her family in New York City.  Her latest novel Kids Like Us was recently published by FSG.