One of the things that most exhausts me and drains my energy is being out among people. Certainly, this is partly because I am naturally an introvert and enjoy being home reading a book or other low-key activity. But I know it’s also because sometimes the world is just exhausting.
When I give it a thought after a long day: why am I so tired? I can see where it comes from. First, I have to struggle against a world that seems to have purposefully built barriers to my participation. By this I mean accessibility struggles with my wheelchair and mobility disabilities from rheumatoid arthritis.
Why do I experience RA energy drain?
Just commuting sometimes feels like a constant battle. I have to jockey for the ramps and find the elevators to the train. If an elevator is broken I have to figure out an alternate route that will invariably take me much longer and out of my way. Through it all, I am trying to claim some space on the sidewalk and not get trampled by the other people. It feels goddam exhausting!
The daily battles of limited physical accessibility
While physical accessibility has slowly improved over the years, there are still plenty of problems. For example, I’ve been complaining to the local government for nearly a year about a patch of broken sidewalk that is impassable in my wheelchair. I have to go into the street to navigate around it. I know they are busy, but I find it hard to believe it is so hard to answer an email or pour some concrete. I’m contemplating seeing if I could mix some up and haul it on the back of my wheelchair. Just kidding—kind of.
The barriers are getting fewer, but they are definitely still there. Sometimes the remaining challenges feel even harder and bigger, because of lack of importance or concern. The local department of transportation doesn’t seems to care that I’ve been emailing about a broken sidewalk for a year. “It’s no big deal. Just one little problem.” But there’s a lot of these in my daily life and they add up to wasted time, broken wheels, and energy drain.
Constantly educating people is exhausting
I have to be honest that sidewalks are easier to repair (in theory! Haven’t actually seen it happen yet) than attitudes. Concrete is cheap and quick. Changing a mind takes time. Changing many minds… Well, I’m not sure what that takes! I have been working on it, believe me.
I don’t mind spending time educating people, but sometimes it feels constant and repetitive. Yes, when an elevator to the train breaks it is a serious problem. No, I can’t go up the stairs or escalator in a wheelchair. No, “only” one step is not accessible. Yes, I do need that ramp. No, rideshare companies are not accessible. Yes, please hold the door for me. No, please do not lean on or try to push my wheelchair. Yes, I did run over your foot and, no, I’m not sorry that you didn’t see my bright red wheelchair sharing the sidewalk before you stepped in front of it. (Really, I am not that easy to miss!) And so on, and so on.
Having time to recharge is essential
Sometimes I just need some extra time at home or with people that just get it. I need time where I am just me, not the lady who uses a wheelchair or the lady with RA. I think of it as turning on the off-duty light. I can just relax and not have to explain or navigate. I find a comfy spot where I don’t have additional barriers or people misunderstanding or questioning me.
It’s a huge relief to put a pause on the energy drain and refill my tank awhile. In these moments I understand being out in the world can be a real energy drain, that I need to be aware of the energy I lose when I spend too much time in unfriendly (or just plain exhausting) environments.
Have you shared tips on how to manage RA with anyone before?