When we head out into the world, there is no missing us. I understand that. Not only is Lu in a wheelchair, but she has to have a chest harness in addition to the regular lap belt, or she would fall out. She needs to have her feet buckled in to keep them still, and safe. Then we add the big metal bar holding up a device that most people (oddly) assume is some sort of entertainment apparatus. Her PODD book generally hangs from the handle, and sometimes her feeding pump is clipped to the handle as well. And then don't forget her constantly flapping arms, the noises she makes as she holds her breath, and her sometimes very loud vocalizations. I get it. We are not going to go unnoticed when we venture out into public. What I wish could be different about our society in general, however, is the reactions other humans have to seeing a person with a disability.
I call it the "pity smile". I also completely understand that this type of reaction is 100% preferable to maybe a look of disgust, or annoyance, or hatefulness. I know. But what I wish others would understand is that WE (the entire community of people living with or caring for people with disabilities) do not want your pity. I have, for the most part, just quit even looking at people as we walk through crowded places, but then occasionally I accidentally do, like this past weekend. We had just finished a very nice lunch out with Chad's mom, and as Chad pushed Lu through the crowded restaurant to get to the exit, we could've been suffocated with the pity smiles. This is what I feel that those smiles say:
"Oh how sad." "Look at that poor little girl." "Look at that poor family. I wonder why that happened." And so on, and so forth. To people who have never experienced this type of reaction from others, you may think that I am being overly sensitive, making assumptions, or just being silly. But I promise you, I have seen these looks enough times throughout Lu's short life to recognize them for what they are.
Meanwhile, lunch was a success, Lu ate well, and we are all smiling and happy, so why feel sad for us? Believe me, no one, NO ONE, knows the sadness that comes with a disability as well as the people affected by it. But, what I wish would change about our society is that others could shift their thinking to view the successes, and strength, and possibilities of people with disabilities, instead of just feeling pity for them. I don't want Lu to realize at some point, if she hasn't already, that people often look sad when they look at her, people that don't know her especially. Not everybody delivers the pity smile of course, but sometimes it can just be very overwhelming and frustrating.
In general, the societal view of people with disabilities is that they are "less than." One of the biggest reasons that I write this blog is to share how Lu defies that view everyday, in every way we can manage. I write to present an alternative view of what life with a disability, or multiple disabilities can be, and that no one needs to feel sad for her or us. I would challenge our society to instead of focusing on the things they see that make them feel sad, to try and look past all of that to find the positives. Like, that even though it is clearly quite an endeavor, we are still out eating in a restaurant, or shopping for a new dolly, or going to the zoo. It is just what I wish for, and as long as we keep proving society's view wrong, maybe someday more people will look at us differently.