One day in my comment section, several people discussed the difficulty they face having a child that is “secretly disabled.” I made that term up, but I’m talking about child and adults who who don’t have outward signs of their disability–or those whose outward signs aren’t obvious.
For the first three years of Charlie’s life, we lived as secretly disabled. We pushed him in a regular stroller, he eats by mouth, blonde curls cover the shunt in his head and clothes cover the scars on his body.
But there were questions. Charlie could “pass” for normal, but not perfectly. His eyes have nystagmus (shake), he slumps and has trouble sitting up straight. He looks sleepy. So there were questions–lots of questions–and comments: “He’s so sleepy!” “Somebody’s sleepy!” or “Is it nap time?” It was grating. I could lie and agree or say nothing at all. I never corrected people–to do so would be uncomfortable–so I let it go, the whole time feeling like a liar and a fraud. That’s a lot to handle when you just ran to the store for some peanut butter.
For school, we ordered Charlie’s wheelchair. I take him to school in it and it’s his main mode of transportation when he’s there. Sometime we use it in restaurants or to go for a walk around the neighborhood.
With the wheelchair, we are out. No one asks if he’s sleepy. There’s no confusion if he doesn’t respond to a greeting or question. The world sees him as he is–disabled. The chair doesn’t change Charlie’s abilities. It doesn’t make him different in any way. But I love it (except for how much it weighs–I don’t love that). I love not having to explain or excuse ourselves. I love just being rather than faking something that we’re not.
I wonder about the people who don’t have wheelchairs, though. People who don’t have an option. People standing on the edges of who they really are because honesty and openness would make people uncomfortable. I wonder how many of them are out there and are they grateful they can “pass?” Or do they wish for their own version of the yellow wheelchair?