There are a lot of things people don’t understand about what it’s like to live with a disability. I think it’s hard for a lot of people to fully grasp something that doesn’t affect their day to day. That’s not an excuse, and that doesn’t mean people shouldn’t try, but that’s why I write this (however infrequently) and talk about my disability on social media…to hopefully help people understand a little better.
One of the biggest things that I don’t think people understand (that I only recently understood fully myself), is that when you live with a disability, you’re faced with living in a world that doesn’t generally understand or care about you. And on top of that, you are faced with that reality on a daily basis. Every time someone parks in a handicapped parking spot they don’t need. Every time someone uses the handicapped stall in the bathroom that doesn’t need it. Every time a place isn’t accessible. Every time you’re treated as a nuisance for just asking for the same rights and accessibility to things as other people. I experience these things on almost a daily basis and I think it’s safe to say everyone else that lives with a disability does too. These types of things aren’t just an “inconvenience” or “frustrating” though they’re certainly both. The message these actions send to those of us living with a disability is that people don’t care about us. That the world doesn’t care about us because you can’t even go to Western Europe without facing accessibility challenges. Actions speak louder than words is a very true statement because actions send feelings and messages that can be much more powerful.
In terms of my own life, I’ve realized just how deep these feelings go for me in recent years. Things like dropping stuff, bad stuff happening (i.e. 4 car accidents that weren’t my fault), etc — this happens to all of us but for me, it often feels like a punishment. Like, on top of my disability, I now have to deal with all this other stuff too. It’s a lot. When people in my life do certain things that don’t take in to account what I might need or how it might affect me, it isn’t just frustrating, it sends the message to me that they don’t even care.
This feeling of frustration and hopelessness comes from my feeling that I already have enough to deal with. Yes, my MD is mild but it still affects me in one way or another every single day. It makes things that are supposed to be easy, hard. It makes people not want to date me. It makes it hard for anyone to understand me. It makes me fall and causes me pain. It makes me gain weight and not be able to work out in a way that I can lose it. So anything else that goes wrong in life, just feels like adding pounds of salt into the wound. I think it makes me need even more caring and understanding from people too. I think I feel like I need extra support. Things that maybe other people might be able to let go, I have a harder time with because they represent so much more to me.
So why do I, or why do we get so upset when an elevator isn’t working? When there’s only stairs to get somewhere? When we can’t fly on a plane? When we don’t have a place to park or a toilet we can use? When someone abuses some form of accessibility? When someone makes a joke at the expense of disabled people or uses the word “cripple”?Because we’re dealing with a ton of shit on a daily basis already. Shit that is hard, that is frustrating, and can be really really challenging to deal with every day.
Instances like this aren’t merely crappy things that happen to us. Examples of people being shitty (though they’re certainly that), are a direct message to us that people don’t care about us. We’re not even a thought in people’s heads if they’re able to do these things. We’re represented very few places. Our stories don’t get told on a public forum nearly as often as others. All of this compounds. All of this tells us that we’re not cared about, that we’re not worthy. Then we have to spend our entire lives trying to build that worth ourselves. Trying to break ourselves out of how society sees us and treats us and find some iota of confidence. To constantly remind ourselves of why we’re more than our disability and all the things we contribute to the world.
I’m sure there are a lot of other groups out there that feel this exact same way too, and I know how doom and gloom this sounds. I really wish I had more of a positive spin to share on all this lately, but the reality is, after dealing with this for over 3 decades, it just gets harder and harder to deal with sometimes. I wish I could say it gets easier…I’m sure it does for a lot of people who have more mental strength than I do. But for me, it’s only gotten more difficult. I don’t care as much what people think of my limp or if they stare when I get up out of my chair “weird”, but I do care a whole lot when people tell me they don’t care about me by doing all the things I’ve outlined. That I don’t matter. That they’re need to just “run in somewhere” or use the “bigger” bathroom stall is more important that what I need. That I’m not worth being with because of something I can’t control.
Deep down, I know I’m worth something. I know I’m more than my MD. I know I have something to contribute. I know I’m funny. I know I’m a good friend. I know I have a lot of great people who care about me and I know I try really hard to be considerate and think about other people’s needs (probably too much, in fact). I just wish the world would extend that same courtesy.