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.