Thursday, September 1, 2016

The Challenge Bed

by Kevin Kinsella

One of my daughter's therapists told me
she was glad her work was challenging.
Because if it wasn't challenging,
she would likely be bored and unhappy.
So when I told her that I felt otherwise,
that I would rather that she be bored
and if not unhappy then less happy
and certainly less challenged
than she seemed to be with my daughter,
she disagreed vigorously, insisting
life is too short to avoid the tough stuff,
that she liked going home to her husband
and telling him about the challenges of her day,
Because who wants to hear about how easy it was?
And that was one of the things he loved about her,
that she liked to be challenged so much,
that she never shrunk away from a challenge,
never took the easy way out and, believe me,
he is quite a challenge himself.
But she wouldn't have it any other way,
because It's not about where you want to go
it's about the bus you take there. You know?
Then I imagined how wonderful their life must be – 
the two of them slipping into bed together:
He turning to her, whispering, How was your day?
She, welcoming his challenging yet tender embrace,
Terrific, I met a little girl who can't walk.

photo by Micaela Walker

Kevin Kinsella is a freelance writer and poet. His work has appeared in/on The Believer Magazine, Bomb Magazine, Tarpaulin Sky Magazine, Pif Magazine, and 2River View," among others. He is the translator (from Russian) of Sasha Chernyi's "Poems from Children's Island" (Lightful Press) and Osip Mandelstam's "Tristia" (Green Integer Books).

Micaela Walker is a photographer and freelance photo editor who has worked for Cosmopolitan, Seventeen, Allure, Lucky, Black Ink, Departures, Food + Wine, The Women’s Refugee Commission, Nomad-Chic, and the Go Vap Orphanage in Vietnam.  Her blog is roan and lula.  She serves on the board at Extreme Kids & Crew. 

Monday, August 1, 2016

Sunday, Early Summer

5:30 am.  I hear a familiar squeaking hinge and heavy uneven footfall.  Martin's up.  I wait for him to show up in our bedroom doorway, knowing that even if he doesn't appear, I'll have to get up and figure out what he is doing.

5:45 am. Back in bed. Maybe Martin will go back to sleep. Probably not. He was sitting on the toilet when I got up to look for him, but he didn’t have to go and seemed disoriented but fully awake. I told him to “rest” in his room “for a while.” Maybe he’ll play with his wooden trains. It’s happened before.

6:28 am. Thudding steps in the hallway. I’m up. “It’s not time to get up yet,” I try, guiding him back to his room. I stumble back to bed, glowering now. How does Jeff sleep through this, I think, not for the first time, as I nod off again.

7:15 am. Squeak. Thud. THUD. OK, enough. Martin is standing in the doorway. “Shower,” he says. I guess I’m up. “OK. Shower,” I say. I stretch out on my back and squeeze my eyes shut. I will savor every moment in this bed while I can. I hear the shower turn on. He’ll relish the hot water and steam for at least five minutes, I think, pulling the sheet up under my chin. After that, who knows? He’s been known to splash water all over the ceiling and walls or to squeeze gobs of shampoo and conditioner on the tiles, making a slippery, hazardous mess for the next person who stumbles in there not fully awake. Like his brother, who I am now picturing unconscious on the bathroom floor, having slipped on an invisible slick of Pantene. Shit. I’m up.

7:30 am. “OK, Martin, turn off the water,” I say. I am holding open his big red bath sheet, just like I always do. He complies, and I wait a moment before opening the shower door, watching him as he stands quietly in the warm fog. Then I open the door. He starts to script something under his breath as I tousle his wet head and wrap him in the towel. I can’t quite make out the words, but the volume gradually increases until the last syllable, which he shouts. Loudly.

“Martin!” I scold, but before I have a chance to give him a directive, he is mumbling something again. Something very similar, getting louder and louder and then, he screams. A sustained, ear-splitting shriek.

“Quiet voice, Martin,” I say sharply, “Keep your voice—” [Scream] “Martin, you must stop.” I usher him as quickly as I can out of the bathroom, through the bedroom [Scream], down the hall, and into his room. “Martin,” I say, trying to get his attention, “Martin, look at me.” I point to my nose to direct his attention to my face. Usually he points to his own nose, gives me a fleeting glance, listens. Now he looks past me, continuing the tape loop, something about Mater and the Ghost Light, then [Scream].

“No YouTube!” I announce, playing the only card in my deck, the one incentive that has always worked. The promise of YouTube motivates Martin to comply with almost any request, even hours in advance. He pauses. “YouTube!” he demands. “Yes,” I reply, “First no screaming. Then You—” [Scream]. “Martin!” He does not register what I’m saying. His whole body is caught in the loop of a script he seems compelled to repeat. He turns slightly away, steps forward, nods, mumbles about Mater and the Ghost Light. [Scream]. This time he holds the shriek, his whole face going red and taut with the effort. 

I grasp for a behavior strategy. In the 10 years since Martin’s autism diagnosis, the primary support we’ve received has been from behavioral specialists and special educators. No one can tell us why Martin stims and scripts, why he cannot tell us how he feels, why he can never explain why. We use visual schedules and positive reinforcement and simple directives to motivate him without ever fully understanding what he is thinking. “Martin,” I say, “Try to scream in a whisper.” I model this for him, then say, “You try.” He does. He tries it. I am praising him when [Scream]. “You must stop,” I say. “Mommy is sad,” I say. “You have lost YouTube,” I say. “YouTube!” he pleads [Scream].

8:45 am. We are in the kitchen. Martin has screamed through breakfast. He is pacing and mumbling and shrieking. Jeff and the older kids must be awake. Are they hiding? I can figure this out. I must figure this out. Martin is not responding to my stern voice. I am pleading now. He stares out, repeating his mumbled phrase, punctuating it with shriek after shriek. It looks like a compulsion, but is it? What does a seizure look like? What if he’s been having seizures for years? What doctor should I call?

9:15 am. Redirection. I try setting him up with MarioKart on the Wii. He is playing and mumbling and talking about Mater and screaming. I expect his voice can be heard outside. In a week we are leaving for our annual vacation, where we stay in an old cottage nestled among others near Lake Michigan [Scream]. We already get the side-eye from the cottagers there. I imagine someone hearing what I am hearing and calling the police to report child abuse. What if we can’t go to the lake anymore? Never mind that. What about today, tomorrow, every day? I can’t take him in public like this. What if he can’t go to school in the fall?

10:00 am. I am sitting in the dining room staring at the pieces of a puzzle I spread out on the table in an effort to distract myself. Martin is shrieking like clockwork in the kitchen, having abandoned the calculator and math homework page I offered in a last-ditch attempt at redirection. I hear Jeff on the stairs. He is calm. This makes me unaccountably angry. I want to talk to him, to figure this out with him, but by now Martin’s shrieks feel like blows. I can’t think straight. I keep getting up, yelling at Martin, telling him he must stop, there’s no more YouTube for you, stop, stop, STOP. Jeff quietly suggests that we should ignore the screams altogether. The more we call attention to them, he says, the harder it will be for Martin to stop fixating on the script. Jeff is right, but my ego is bruised. And I’m still mad. I pout over my puzzle pieces [Scream] and imagine that this is my life now. Martin walks into the room. “YouTube?” he asks, desperate. Then he mumbles. Then he screams. “Go away from Mommy,” I say. “Go talk to Dad.” He doesn’t want to walk away. He needs me to reassure him about YouTube [Scream]. I do not do this.

10:30 am. Jeff thinks I should get out of the house. “You need a break from this,” he says, “I’ll take over for a while.” Martin has moved into the living room. He is playing the Wii again, screaming every few minutes. Jeff and I talk in the kitchen, but all I can hear are the shrieks. I’m starting to brace for them now. Jeff does not look worried. He looks ready to spell me—this has been our approach to parenting Martin since his diagnosis. We have been spelling each other through every stage, taking turns immersing ourselves in Martin’s obsessive behaviors, monitoring him in public places, negotiating his outbursts and silences, treating the world to what we like to call Autism Performance Art. [Scream].

10:45 am. It helps to talk to Jeff. I focus on our conversation, willing myself to stay calm, puzzle this thing out with him. Then I hear Martin. “That’s better,” he says, “try marching.” We find him stomping across the living room floor; instead of screaming, he punctuates his script by slamming his feet against the rug with all the force he can muster. “That’s it,” he says, “Works every time!” He stomps again, and this time a picture frame slides off a side table. I eye the TV we recently mounted on the wall and wonder. Then I praise Martin. “What a good idea,” I say, “but marching might break something. Let’s try something else.” He moves to the recliner nearby, sits, mumbles his script. Then he slams his forearms against the upholstered arms of the chair, hard, over and over until the urge passes. “Whew,” he says, “That’s it.”

By the time I leave for the grocery store, Martin is quiet, only periodically slamming his arms against the pillows we’ve wedged between him and the chair. I am still worried. I think Jeff and I are anxious people who have passed on our broken brains, in one way or another, to each of our children. I think I am uniquely ill-suited for this job. I think it’s my fault. My thoughts are a persistent looping tangle. But at the same time, I wonder whether, even as he screamed, Martin listened to us talking in the kitchen, whether he, too, was puzzling things out, finding his own way around this new compulsion.

11:10 am. Sitting at a red light. I tell myself to focus on the positive. Maybe Martin understood our frustration. Maybe he was frustrated, too. At any rate he figured out a way to stop screaming on his own. I’m certain this won’t be the last episode, though. Will he be screaming when I get home? As encouraging as it is to know he can self-regulate, it would be better to understand why he started screaming in the first place. Why is the question I want an answer to—not just why is he suddenly unable to stop screaming? but why does his brain work the way it does? I think that if I could just understand why, if I could just understand, everything would be OK.

Inhale. Exhale. I will not understand this today or tomorrow or any time soon. I think about my grocery list and how I really should write it down and stop relying on my memory to fill the cart every week. I think about what I will make for dinner. I wonder whether Martin will try salmon again. The morning fades and I think, Jeff is there with Martin. I can worry over screaming and behavior strategies and worst-case scenarios later. I hear honking behind me. The light is green. I drive on.  

Nancy Quick Langer was born and raised in Pittsburgh, and except for the two years she spent in graduate school in Boston, the farthest she has traveled from home is through the Ft. Pitt tunnels to the suburbs south of Pittsburgh.  She is a writer and works as an English writing teacher at Duquesne University and Carlow University. She and her husband Jeff have been married for 23 years and have three children: Bea, Henry, and Martin. Nancy recently published a series of essays about Martin’s Bar Mitzvah journey in her blog not a man of words.

Tuesday, June 21, 2016

Broken and Woken Is Open: Call for Submissions

“Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.”
-Leonard Cohen

When I was rolling pennies to pay the rent, I didn’t enjoy being "broke," but I did take a certain pleasure in the word.

"Broke" spoke of subtle resistance: bosses bypassed, debts dodged, evictions evaded.

“Low income,” on the other hand, sapped me.  Where was the defiance? The soul? "Low income" invoked nothing but numbers.

Alas, it's just this sort of dehumanizing terminology that pays the bills at Extreme Kids & Crew. No bureaucrat will cut you a break, and no philanthropist will cut you a check, if you're merely broke. But you might get a little something if you say: “70% of our clients come from low-income households.”

So I've learned to be strategic.  When writing to audiences that “process requests,” I employ the logic of their organizations, tossing around phrases like “low income,” “at risk” “special needs” and the clunky but unavoidable “families with children with disabilities” without railing against the assumptions and elisions tucked into such language. 

But not here at Broken & Woken.  This blog is a refuge from Official Speak, a place to express thoughts and experiences as freely as possible.

"Disability" doesn't appear in the title of the blog, even though it's been about the places Felix has brought me and the people I’ve met along the way. 

“Disability” isn’t as annoying as many other words in Official Speak. But it's flaccid and vague, and the more you puzzle over it, the flimsier it becomes. Puzzle over it enough and you'll throw up your hands (if you have them) and say (if you speak): "Everyone’s `disabled.'"

Maybe your disability isn't apparent yet. Maybe you’re at the height of your powers -- Muhammad Ali looming over Sonny Liston. But look inside, and you’ll find something, some barely visible wiggle--the beginnings of that Parkinson’s Disease, perhaps, that will someday land you on the canvas.  Disability can't be avoided. It's the human condition. But "human condition" sounded too grand, so I went with "broken."

I'm no longer broke, but I’m still broken: by exhaustion, anguish, asthma, unpublished novels, love that soured inside me, friends I’ve left hanging, resolutions I've abandoned. My womb was broken, too, failing to protect Felix from virus or unknown agent.

No one's going to challenge me if I say I'm broken.

"Disabled," on the other hand, is strictly regulated. It’s an official category used to separate people. Great amounts of time, pixels and money go into maintaining this divide.

Take Felix: His body and the outward manifestations of his mind must be measured and considered once, twice, or three times a year, depending on the cycles of his bureaucratic overlords. This means taking him out of school and trucking him to doctors, or missing work to sit in ill-lit rooms with wilting plants and wilting social workers, spending hours answering the same questions I’ve been answering for 13 years. And only to certify that no miracle has occurred. Felix’s white matter has not spontaneously generated.  His gait is still hobbled. His speech is still strange.

Broken is not yet codified. May it never be. I can join Felix in my brokenness, and it’s a good place to meet.  It’s where the light shines in.


The staff of Extreme Kids & Crew asked me to start this blog in 2014 to work towards our mission of challenging cultural assumptions about disability. Liz Wollman soon stepped in to help edit, and it’s been great working with her.  But one small voice piping up out of Fort Greene, Brooklyn, is just that: one small voice. Liz, our new co-editor Andy Dunn, and I think that it’s time to invite more voices to join us, to create a reading and writing community as far-reaching and inclusive as disability itself.

We’re asking writers and artists from all over the country and beyond its borders, of many ages and backgrounds, to share experiences of disability, their own or another's.

Please note that we see disability as integral to life. We're not setting out to heal, remedy or "fix" disability. You may dress a wound, but a new one will appear. That’s nature. Our culture’s aversion to disability interests us; advice on how to "rescue" a child from autism doesn’t.

Here are the details:

Posts will appear monthly (for now).

Payment will be on publication at standard blogger rates. (Don’t quit your day jobs.)

We'll consider poetry, art, personal essays, fiction, memoirs, interviews, photographs and whatever else fits.

E-mail pitches of no more than 200 words to this address: We'll try to respond to every submission, even if we don’t use it.

Thursday, June 2, 2016

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.

Thursday, March 31, 2016

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. 

Monday, March 7, 2016

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:
Photographer:  Julie Lemberger:

Friday, December 11, 2015

On Violence


In my early twenties, I found myself, quite by chance, working as a sound technician for a joint Jewish Heritage Museum/Yale University project to compile a library of oral history interviews with Holocaust survivors.  Two or three times a week, I would take the subway to a bland midtown office, shake hands with that day’s interviewee and interviewer, plug the sound cables into the appropriate holes, then sit down and listen, making sure the needle didn’t travel too far into the red.  In the beginning, I drank in each word like a draft from a mythical cup. The Holocaust was so towering in its scope and cruelty that it seemed to belong to another plane of existence, one not entirely human.  I would write down the stories I had heard in my journal, my fingers trembling, my mind taut with the fear of forgetting. 

I remember in particular a woman whose family had been evicted from her home and reassigned to a Jewish ghetto when she was barely a teenager. She was too young to work, but her family needed the money, and she had an adventurous spirit.  So she dressed up as a young woman and got a job in the hospital.  She admitted that even amidst of the misery of the ghetto, the starvation, the typhoid, the ever-growing lists of missing and dead, she loved her job.  She loved fooling the adults and wearing a pair of otherwise forbidden, glamorous, high-heeled shoes.  She would have been wearing those same shoes when her family was rounded up for transport.  When she arrived home from her shift to find an empty apartment, she knew what had happened.  She raced through the ghetto, searching for them.   On the main street, Nazis were forcing a procession of men, women and children to the train station, her family among them.  She pushed her way through the onlookers, but a Nazi guard pulled her back.  She couldn’t believe it.  She knew him.  They had gone to school together.  She wriggled out of his grasp, saying that she had to get to her family. He yelled that that wasn’t allowed and kicked her so hard that she fell to the pavement.  Her pain was enormous, but what struck her more was the viciousness of her former classmate.  Later it would occur to her that he might have been trying to save her.  He knew that the transport was headed to Auschwitz.  He knew what her chances of survival would be.  She never saw her family again.  

At the end of the war, the hospital was liquidated, and she too was sent to Auschwitz.  She told of the horror of the train platform, the angry German shouting, the dogs barking, the dread of what was to come.  And yet, in the midst of the chaos, she was helped into a cattle car by a boy she’d had a crush on for years.  According to her memory, he and she sat in a fetid corner, squeezed tightly together and holding hands the whole way, treasuring one another.  I have thought about this woman often over the years, impressed by her ability to live--not just to survive--but to experience such breadth of emotion, to grow as a human being under the most devastating circumstances.  

Most of the survivors’ tales were more one-note, with anger or grief presiding.   As I listened, week after week, month after month, their stories took on a bleak predictability: the yellow stars, the loss of family income, the forced move to the ghetto, the transports, the separation of husband from wife and parents from children, the camps, the lice, the hunger, the death. The familiarity of these descriptions did not numb the pain of listening, but my shock and wonder eventually wore off.  The Holocaust ceased to be mythical. It was as real as the beige nubby office chair that I sat upon, as real as the people testifying: middle-class white people for the most part, with thin, papery skin, bluish veins, and orthopedic shoes.  Some of them wore pants-suits.  Some had their hair blow-dried into a stiff swirl, like my high school French teacher, Madame Kitzes.   

Their ordinariness suggested to me the ordinariness of those people not being interviewed--those who had carried out the orders.  This has long been a core question posed by the Holocaust: how can ordinary people turn into such extraordinary killers? But it is hardly a question unique to the Holocaust.  Much to my confusion, many of the survivors would end their testimony with a clenched fist, and vow Never Again. Didn’t they read the papers? It was the early 90’s. Serbians were massacring the Muslim and Croat population in Bosnia. In Rwanda, Hutus were murdering 800,000 Tutsis and those moderate Hutus who defended them.  The Nazis killed more, but the transformation of students, shopkeepers, farmers and tradesmen into mass slaughterers was hardly unique to Germany.

In the spring of my second year, I left the office and wandered down 26th Street, drained by the ordeal that I had just recorded.  The sun warmed my skin and shone through the white blossoms of the trees. I basked in it, hoping to replenish myself. Instead my mind conjured the eyes of a mother whose child was being ripped from her grasp, the swiftness and power of human arms and legs, the shouts of men at their most merciless. The analyst within me, who usually interprets conflict and injustice through the lens of economics, psychology, social history, and power dynamics was quiet.  I had no cultural or historical context.  All I could see were people, in a dark field, their eyes flashing, their bodies breaking and being broken.  The mother’s anguish was so palpable that I could barely breathe.  I knew that she was a figure of my imagination.  But I was also terribly aware that her plight was not imaginary.  Somewhere in the world, as surely as a young girl was experiencing her first kiss, another was being killed. The knowledge of this terrible truth invoked all the other families being rent apart at that moment, the lovers who would never see each other again, the endlessness. My usual casting of blame and impassioned protests were gone.  I had no energy for them. I was shattered by sorrow. The only words that came to me were quiet, but they struck me to the core: We do this to each other.   A homeless man, sitting on the stoop of the Armory, brought me back to 26th Street. His voice was friendly, almost wondrous.  “You have the most beautiful smile I’ve ever seen.”


Felix’s furies began when he was five and a half, on a Sunday afternoon, in the month of October, 2008.  We were sitting on the couch after having returned from the playground, cuddling and talking about dinner, when a shriek cut through the air and Felix hit himself with a fierceness that beggars description.  For a moment, Jason and I froze.  We had never seen Felix strike himself, or anyone else for that matter. He was, for the most part, a gentle and curious appreciator of wind, swings, music.  To the best of our knowledge, he had never even been in a fight.  This was not because he was an angel.  Rather, he had little interest in interacting with other children and could not walk independently.  At the playground, he had to be closely accompanied by an adult to help him maneuver his walker or climb onto the swings.  There was little opportunity or motive for him to engage in playground combat. Even if he had somehow joined in a melee, we would have been shocked.  It is shocking to see anyone attack himself, especially when that person is your affectionate and charming son.

Because Felix does not use language in a conventional way, he could not explain himself, so we took him to the hospital, thinking that something inside of him must be causing terrible pain. Doctors gave him CAT scans, X rays, blood tests, Valium.  Nothing helped. Over the next few weeks, we took him to the dentist, the neurologist, the pediatrician.  None of them knew what was wrong and their medications had no effect.  A pattern emerged:  for a week or so, several times a day, at unpredictable intervals, Felix would enter into a period of screaming and slapping himself that lasted about twenty minutes. These storm-studded days would be followed by a week or so of calm, followed by another week of what we began to call fits.  We learned to see these fits coming: his cheeks would drain of color, the light in his eyes would shift, and a siren-like wail would issue from his lips. Soon, along with the face-slapping, he also learned to bite  through the skin of his knees and the tops of his hands, drawing blood. Jason, our babysitters and I quickly learned to grab his wrists and position his body to prevent him from serious injury.  But he hated being restrained, and would struggle to get free, pinching and biting our thighs, our hands, our shoulders, twisting out of our grip.  So the weeks went, one colored by violence, one nourished by peace, until right before Christmas, when Felix reverted to his normal cheerful state and remained thus.  Day after day, week after week, the fits did not return.  We rejoiced, our boy was back! By February, I wondered if I’d dreamed the whole thing up, for it seemed impossible that anything so strange could have come to pass. But we had the doctors’ bills, and Felix had retained a telling gesture: the face slap.  When impatient, hungry or annoyed, he slapped his cheek.  But these slaps, however annoying, did not trouble us. They were demonstrative, give-me-that-cookie-now slaps, not I-want-to-destroy-myself batteries of rage.  Life was good.  Until spring came and his furies returned. 
Felix, mid-fit, at the age of seven.  Photo by Andrea Ryder, from her series With Love and Autism.

Over the next few years, we would learn that Felix’s furies descended upon him cyclically.  Each time they came back, they felt worse than before, probably because with each passing year, he became bigger and stronger and harder to restrain.  Eventually I found help in a remarkably talented acupuncturist and heavy doses of Risperidone. But in the summer of his ninth year, the acupuncturist could no longer see him and the Risperidone stopped working. Felix erupted into twenty to forty-minute bouts of violence day after day, week after week, with hardly a break of calm to sustain us. Sleep, never a dependable thing in our house, became scarcer.  Felix’s fits would wake him at midnight and keep him up until dawn. Jason and I napped when we could. If we were lucky, we’d get five hours of sleep, pieced together. More often it was three or four, sometimes two. 

Restraint has a calm, dignified ring to it. To restrain someone caught in the midst of a self-destructive frenzy sounds admirable.  The reality is not so simple.  Restraining Felix meant twisting his arms so he could not move, sitting on his hips and holding his wrists while he tried to buck me off, binding his arms as he fought for freedom.  I had studied martial arts, which came in handy.  Sometimes my techniques worked and I would get Felix into such a good hold that I was hardly straining my muscles, and felt rather proud of myself. I would close my eyes and concentrate on my breathing and wait for his fit to subside, for the screaming to stop, for the boy I loved to reappear, all the while feeling capable, loving and strong.

But sometimes his screaming drove me crazy. I wanted him to be happy!  My world sparkled when he was happy.  Why was he doing this?  Tearing at flesh that I had helped make with my own body? I would grit my teeth. I would yank his wrists to the floor with more aggression than necessary.  Once I roared with all my might and slapped him across the face.  You want to hit yourself? Fine! I’ll help you, you fucker. 

Do moods travel?  At the time, I thought the fury inside of him had entered me through the vibrations of his tongue and the grip of his muscles, but perhaps it was my own fury. Or perhaps fury does not belong to any particular individual. Perhaps there is a common well of it that rises in us at different times under different pressures, and that can overflow from one to another. After I hit Felix, I did not dare restrain him when I was too tired, or too despairing, or when I felt my better side unreliable. But not restraining him felt criminal, too.  He would bang his head on the floor and claw at his eyes alone in his room.  I would go in.  I would do my best to deaden my emotions and get him into a hold. During these times, I felt my sanity as a palpable object. I would straddle Felix, my eyes closed, his screams reverberating through me, and concentrate on keeping my cool, aware as I had never been of how small and fragile sanity could become, how large and close the darkness surrounding it. 

Our house shimmered with violence.  I felt I inhabited the upside-down world of war. I would look at the papers--the massacred wedding parties, the mothers clutching their bloodied children--and think, of course landmines explode in the pasture and bombs drop from the sky.  It even occurred to me, in my sleep-deprived state, that Felix’s eruptions could be retribution for drone warfare. Some knower of ancient lore in Iraq, Afghanistan, Yemen, Pakistan or another country under American attack was brewing up curses that turned American children into self-destructive dervishes.  I couldn’t even blame him; he was only trying to even the scales.  That’s what people do.  What seemed incomprehensible to me were the peaceful people not wielding swords or shrieking over their dead, but wandering around my neighborhood, hello-ing and buying vegetables. I would, whenever I got a chance, rush out into this strange other world and breathe it in, trying to right myself.  But the fact is, the peaceful world seemed surreal.  

This period ended in December of 2012, when we finally found a doctor who put Felix on a strong dosage of Zyprexa.  The fits did not disappear, but their frequency and intensity diminished. They became more like temper tantrums, less like encounters with the other side.  After a day or two on the drug, the fullness of Felix reemerged, the bigness of his laugh, the brightness of his eyes, and his ability to sleep, often through the night.  With Zyprexa, and the help of a great new school, he has remained himself—or, better put, the self that I recognize as him, for the past three years. And I have had the luxury of taking my sanity for granted.


Violence is a mainstay of entertainment and news, but discussing it on a personal level veers on taboo. When Felix was still living at home, professionals in the field of disability and education cautioned me to keep quiet about his outbreaks, as they would hurt his chances of getting into programs that could help him.  When I tried to discuss the level of violence in our home with friends, our conversations often faltered.  This was partly due to my exhaustion and difficulty piecing together sentences, but the subject also made people uneasy.  They would make light of it, joking about how their house was a battlefield, too. Or they would offer sympathy and move onto the next thing.  I realized that not only was the content of what I was describing disturbing, but also the very term I was using. How could I call my son violent? He was an innocent boy suffering from a condition no one understood and hurting himself terribly.  Nor should I call myself violent. I was doing what any mother would—trying to protect my child. 

We attribute violence to bullies, psychopaths, religious extremists, enemy soldiers, people whose actions cause such anguish that we lose sight of their humanity.  The violence they do is depraved, senseless, and cruel. The violence we do is not violence per se: it is the necessary use of force, which we would prefer not to use but must. But during those seemingly endless struggles with Felix, my bones throbbed with violence and my mind was numb with the effort of containing it.  Violence became an intimate part of my life, a part that both exhausted and fascinated me, its purity and intensity strangely compelling. I am writing this essay to try to chink away at this fear we have at our own violence.  For the more we are aware of it, the better equipped we are to handle it, both when it manifests in ourselves and in others.

Felix is officially classified as nonverbal, which doesn’t quite fit, as he often laughs at our jokes and understands much of what we’re saying when he bothers to listen.  But he doesn’t use language the way most of us do. He communicates mainly through tonality, gesture and expression, not words or signs.  Every so often, maybe once a year, he will come up with a word or phrase that he will say over and over again for a period of months.  We don’t necessarily understand the meaning of his words, but the sound of them brings us pleasure.  I remember fondly his season of “Eh-zoy-ee” which was preceded by the mysterious but similarly pleasing season of “Odesta.” During the fit-ridden summer and fall of 2012, he came up with a phrase that was striking in its intelligibility.  In those lulls when he was not screaming or hitting himself (he never spoke in the midst of a fury) he would ask, plaintively, “Why do we do?”  

We.  He had never said “I” or “he” or “she.” This was the first time he had ever used a pronoun, and it was we.

“I don’t know, Felix,” I would say.

“Why do we do?” he would say again. And again. And again. I was proud of him. He had taught his mouth and his unruly tongue to ask the most fundamental and unanswerable of questions.  

The simplicity of his phrasing and his curious use of the first person plural brought to mind those words that had so startled me twenty-five years before, as I walked in a haze of sorrow from the midtown office where I recorded interviews with Holocaust survivors.  We do this to each other. I don’t know why, Felix, I only know that we do.  We bite through our own flesh.  We shoot our classmates at school.  We bomb hospitals in Kunduz. 

To go back to 26th Street and the homeless man on the armory steps who informed me of the expression on my face as I stumbled by, on the verge of cracking open. At the time I was astonished.  I was smiling?  How could I have been smiling? But over the years that smile has made more sense. For that phrase We do this to each other has often come in handy, grounding me when fear at terrible events or anger at those I see as responsible threaten to fly away with me. We.  Not they do this to us, or we do this to them. We. We are not that different from our enemies. Violence can work its way through all of us.  We must fight it, but we will never fully conquer it, for it is part of us and integral to life.  When Felix’s fits came along, these words became even more powerful.  For as much as I understood intellectually that “I” belonged to this “we”, I did not fully grasp how I could commit an atrocity until I pinned my son to the floor, and felt that fury within me.