On Disability and Community

Julian and I went to the Children's hospital for his EEG today. A routine appointment and just a precaution as he is seizure free, thank God. I power walked to the entrance pushing him in his chair, a little bit late as always, walking past the long row of accessible parking spots, all filled by wheelchair vans like the one we hope to purchase soon. Reflecting as I always do when he and I walk/roll through these doors on the feeling of camaraderie that comes from places like this, places where children with differences are more of a majority.


I see the way that most people look at him. They look, then look away, their pity and deeply rooted discomfort clearly visible on their face. But some people, OUR people, look at him differently.


We see them in the line at the pharmacy, in the line to check into the Complex Care waiting room, in line for a bagel at the little coffee shop downstairs. The parents and I lock eyes, nod, a smile that's not quite a smile. I see you. Sometimes we chat, greet each other's beautiful children, comment on their super cool chairs or walkers or therapy toys. Share a few tips maybe, if it's a long wait, about where we got this or that stroller, this or that cool shirt that allows for easy g-tube access. I squeeze Julian's shoulder as I push him on by, heartened, strengthened by the sight of them. It's one of us.


Last summer it was a pair of Somalian twin girls, their eyes like pools of dark water, leaning into each other from where they lay in their stroller, a large bicycle trailer turned double stroller for two beautiful, immobile girls. Their father, in all white, turned to me as he saw me looking, defensive at first until he took in the smile on my face, and the little boy in the chair beside me. I tell him how beautiful they are and his face lights up; he can tell that I actually mean it. We talk about how he came up with the stroller idea, commiserating about living in a society that cannot imagine a family with TWO non-walking members, much less invent a product to serve them.


Last fall it was a baby boy in a stroller, his oxygen tank clipped to the side. His foster mom lifts him proudly in her arms as we chat, introducing him to me and the other mother in the waiting room. My boy sings from his chair as her baby works to hold his little head up and the third mother's son turns circles around us in his bright green walker. We talk without pause until the doctors call us back.


Today our people were conspicuously absent, in hiding, the virus keeping all of us from our usual therapies and nonemergency checkups with various specialists. I ran into no one in the hall but a few "typically developing" parent and child pairs. They look, then look away, pity all over the parents' faces, one mother even going so far as to turn her son's body away from us as they pass on the opposite side of the hall.


But the parking lot tells a different story, I know as I pass by that special row of vans that we're not alone, and I see as I drive away that many of the vans sport the same sticker that sits proudly on the rear window of my own car, the 3elove sticker: a person seated in a wheelchair that makes the shape of a heart.







Our sense of community may be a bit shaken by this isolation, but I know that our people are out there.


I see you. You're one of us.









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