Atti and I were out running errands together, and like any six year old boy he was testing my patience. We were in Bath and Body Works picking up some presents for Bear’s staff, so I had him in his wheelchair and had the unenviable job of trying to shop, listen to saleswomen, keep an eye on my kid, and block the doorway against a sudden sprint to the parking lot. Imagine a six year old with the bodily experience of a toddler. That’s what I’ve got. Experimenting with independence, learning consequences, asserting his will, but with twenty extra pounds and wheels.
One of Atti’s early therapists drilled it in to me that I can’t treat him like he’s made of glass. His body is no more vulnerable than anyone else’s, he just can’t control it. In fact, he’s actually MORE impervious to pain than a typical kid because of the way his nerves don’t talk to his brain. This kid bounces.
So it’s a running joke with all of my mom friends that I blithely sip my cocoa while they’re nervously hovering afraid he’s going to fall off his chair. In the words of that therapist: “:shrug: Then he’ll learn not to do that.”
Of course, the rest of the world didn’t get that memo.
At Bath and Body Works I was loading the car while Atti was in his wheelchair on the sidewalk. I was talking him through watching where he was going, looking out for the curb, being patient until I could help him, but like most kids, he didn’t listen. He saw the wheelchair ramp and decided to try and do it all by himself, but one of his wheels went off the curb and he fell forward into the parking lot right on his little face.
Experienced moms know, this sucks. When you’re talking skinned knees and not blood or broken things, it sucks way more for mom than it does for the kid. You have to console your child, you feel the typical “I let my baby get hurt” guilt, but since it’s just skinned knees and everyone’s fine it becomes one more pain in the neck hassle you have to deal with in your day. If it was serious you’d drop everything and run to the doctor. But since it’s not serious it’s just aggravating.
But when your kid is in a wheelchair, the world thinks that every fall is serious. When Atti fell over he started crying, but I knew it was an angry cry, not a hurt cry. So because the day had already been long and there were still four more errands that had to get run I was frustrated. And then I saw the people running and I had to put on my show for the public. People were sprinting from across the parking lot, a lady ran out of the store with her basket she dropped in the middle of the sidewalk, all because a kid fell from a sitting position onto the ground. The wheelchair makes it look scary.
Let me pause here in case I sound totally callous. Atti’s fall was roughly the equivalent of a kid sitting on a swing not in motion, and falling out onto their stomach. This happens on playgrounds everyday so frequently that notes don’t even get sent home about it. I asked my mom friends what they do in this situation and they said, “I say, ‘whoops! hop up!’ so they know it’s no big deal.” I’m talking your typical kid learning how to use their body and not paying attention kind of fall. And since Atti fell in his chair, the chair takes most of the impact.
But to people who don’t see wheelchairs every day, it’s terrifying. So then it becomes about their emergency, not my son’s.
Atti was pissed off that he fell over. He was mad he didn’t navigate the wheelchair ramp by himself, but he was WAY MORE upset that a crowd of people were standing around gawking at his humiliation. So he’s screaming and crying because he’s embarrassed, but the crowd of people think he’s crying because he’s hurt and want to help the little disabled boy and his mom, and I want to tell them all to shoo and let me tend to the hurt feelings of my little guy. Atti won’t stop crying until they go away, and they won’t go away until Atti stops crying.
In that moment I feel the burden of representation. That’s my show for the public: the educator. The charming and approachable advocate of disability. The adorable little boy who makes disability not so scary. And in that moment when I want to tell them all to go away I think about my little friends whose disabilities carry disfigurements that make the world not so kind to them. I think of the kids without parents who can force a path in the world for them. I think about all the people with disabilities who are invisible to the rest of the world, who are pushed aside, who are unwelcome in public, who are vulnerable, and I think that doing a little education is not such a burden.
So while my child is crying I’m explaining Cerebral Palsy to the crowd. I’m helping them understand Atti’s speech and that he’s telling us how mad he is he fell on the ground. I’m showing them his chair and how lightweight it is. And inside I’m torn between wanting to respond to these people’s kindness with kindness of my own, and just shoving them aside to tend to my child.