I never knew until I had a child with disabilities that it was possible to be the center of attention and invisible at the same time.
Taking the Girl in Charge out into public can be a very lonely experience. Because of her non-existent proprioceptive system, she is constantly seeking sensory input which causes her to move her body in unusual ways. She also makes loud, unintelligible noises. She cannot speak but she still likes to hear the sound of her own voice. So, when she enters a crowded, public setting, she, and therefore I (or our family, if we are all together), become the center of everyone’s attention very quickly.
But that overt focus from the strangers around us doesn’t last for long. It doesn’t go away, mind you, it is just no longer overt. Most people in the room continue to very much pay attention to us, but what happens in the few seconds after everyone notices us, is that they quickly look away. They haven’t stopped paying attention to us, they just refuse to acknowledge us. And this happens everywhere- in restaurants, in libraries, in museums, in school hallways…. It is a common experience. And it is isolating. At times, painfully so.
I don’t entirely know why people look away, but my guess is that there are several reasons.
For some, I think they just outright feel uncomfortable. There are still those in the general American population who feel keenly uncomfortable in the presence of people with disabilities. I wish this wasn’t the case. But it just is.
Then there are those whom, I assume, are disinterested. When they look away, we aren’t the center of their attention anymore because they quickly refocus on their own lives- which I actually think is great. I have no issue with those who live and let live. I don’t actually want us to be the center of people’s attention when we walk into a room.
But then there is another group of people who I completely relate to because… well… I used to be one of them. They look away because they think it is the polite thing to do. They’ve been taught their whole lives that it is impolite to stare and so when they notice people who are acting in a different (maybe embarrassing) way, they don’t want to be rude, so they look away. But what this group of people doesn’t realize is that looking away doesn’t come across as polite. It comes across as the exact opposite. And it is very isolating for those who are being avoided.
Going out into public is difficult for people with disabilities and their caretakers for so many reasons. Despite the ADA and other such laws, many places aren’t as accessible as they need to be. And many people with disabilities depend on the kindness of strangers to get them through their trip to the grocery store, or in and out of a restaurant. So when other people refuse to acknowledge them out of a misguided sense of politeness, it makes life outside the safety of their own home very difficult to navigate.
It took becoming the mother of a severely disabled child for me to come to realize this. And it took experiencing this public isolation for me to discover for myself what the solution is. And it is really quite simple. The first thing the disabled community needs from their able-bodied neighbors is acknowledgment. Simply put, please don’t look away. Instead, TRY to make eye contact. And then once you make eye contact, do one simple thing: Smile.
It’s so simple. Or better yet, say “Hello.” Even better, ask them, “How are you today?” Most public interactions need not be any more complicated than that.
Most people with disabilities and their caretakers are really quite self-sufficient. We’ve learned to plan, predict, and accommodate for our needs very well. But it’s that sense of being invisible that makes everything out in a public setting just that little bit harder. So in most cases, just a simple acknowledgment from those we come in contact with makes things that much easier. It gives us an idea of who we can turn to for help if the need should arise. It gives us that basic sense of community, the reassurance that even though we may be a bit different, we still belong. It’s as though our fellow citizens are saying, “I see you, I’m here for you, I’m happy to help.” And when you are on the receiving end of that acknowledgement, it makes all the difference in the world.