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: