The Epiphany of My Son’s Disability
I knew we would love him – I just didn't expect the world to do the same
When I was 4 months pregnant with my son Felix, I contracted the chicken pox. The doctors told me that if you have to get the chicken pox when you're pregnant, the second trimester is the time to get it. There was only a 1:1000 chance that the virus would permeate the placenta and harm him. So I told everyone not to worry.
But then Felix stopped kicking. For a long time, he didn't move at all. Then he started to swoosh. It felt a bit like an aquatic creature was living inside me. I wrote this poem:
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.
As I recovered and Felix began to swoosh more vigorously, I forgot about the poem. But a few months after he was 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.
I thought, "Oh, my god!" Had I known? Had I sensed his muscular abilities leaking away? Although science doesn't have an exact answer for us, that seems to be what happened. The virus significantly altered the architecture of his brain, leaving him severely disabled, physically and intellectually.
The poem foretold other things, too: Felix did attract asinine commentary. I can't tell you the number of times strangers advised me to give Felix a nap, assuming his floppiness resulted from exhaustion, rather than his inability to sit up in a stroller. And Jason and I did have fun, when we were alone with him, swirling the water and wondering.
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. And I knew that Jason and I could make a home like that for Felix. But as he grew older, home was not enough. From the moment he could move himself around with a walker, he wheeled it over to the front door and banged it against the woodwork. He wanted to explore the bigger world.
So we did. Sometimes this meant Felix wheeling his walker down the sidewalk. But 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.
We had plenty of encounters of the sort in my poem: nervous shuddering, smug pitying, strangled looks of alarm. I had expected that sort of thing and barely noticed after a while. What I didn't expect were the people whose eyes lit up when they saw us, who broke into grins or more contained nods of recognition. Not loads of people, but a far greater number than those who usually acknowledged me when I walked around the city alone or in the company of my able-bodied daughters.
There was the elderly panhandler in Brooklyn Heights who blessed Felix as he tucked a five-dollar bill in his stroller. The busload of passengers who applauded Felix the first time he rolled onto a city bus wheelchair lift. And that man on Park Avenue. I had just picked up Felix from school, and he was in a terrible state. I did not know what was wrong. It could have been heat, hunger, thirst, or frustration. It could have been something else entirely. Felix rarely uses words, so there is much about him that I do not and cannot know. But he makes his emotions 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. But we had to stop for a red light. Beside us a young Asian guy in a business suit nodded in commiseration (with Felix, not me) and said, "I feel just like you."
Sometimes it sucked 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, and messes. But those encounters with other people, no matter how fleeting, buoyed me. Felix was acknowledged, kindly. I was also acknowledged as an equal, often by people with lives that were far more difficult than mine.
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. Little was ever said. Mostly these were chance encounters, a glance, or a smile. But their impact went straight to my soul. It made me feel that I was not alone – that it wasn't just me and Jason, swirling the water and wondering. There were other people swirling the water too.
We are all so much more than what is obvious to everyone else – 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 genuine connections happen, they are immensely powerful. That's what those walks with Felix really drummed into me.
It got me wondering whether it would be possible to design a space that would get those zaps of connection happening more frequently and predictably, so I started Extreme Kids & Crew, an arts and play-based community center for families with children who have disabilities. 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 now feel confident answering yes. The interaction between families from all walks of life, the relief at being accepted, and the children's pleasure create an atmosphere that works like a tonic. The experience of mothering Felix and overseeing Extreme Kids & Crew makes me believe that disability can bring out the best in us, and that it has a great, untapped power to bridge cultural and class divides.
We are all touched by disability, whether it's our child's dyslexia, our mother's Alzheimer's, our brother's autism, our sister's war wounds, our friend's car accident, or 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? And that trying to force a body or mind into fixed contours is a waste of energy doomed to fail?
What if we put our energy toward opening our hearts and taking care of each other instead? 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 by imagining Felix running for office and 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 ability to bring people together.
A version of this piece was published on the blog Broken and Woken and is reprinted here with permission from the author.