I’m at a sort of weird point in my life where I have too many things to say and therefore difficulty focusing on any one of them. I have two drafts written but not yet edited to make a succinct entry, and here I am adding another one. But sometimes life’s like that, things just keep popping up.
Last night I had a very distressing (to me, I suppose other people might not be fazed at all) incident on my bus ride to work. I love and hate the bus system. I think it’s great that public transportation around here is so readily available. It’s enabled me to have a job, to get around the city when I have things to do and no one to drive me, and both of those have given me a degree of freedom and happiness that allows me to work on getting a license where before I wasn’t doing much of anything. I love being able to get up and go whenever I want to, provided I want it enough to brave the hazards of bus travel.
And that’s the hate part. I love the freedom of having the bus as an option, I hate using it. It’s a very stressful situation for me almost every time. There was exactly one time when I got on the bus and there was no one on it so I was able to easily find a seat and sit down. That was pretty nice. And there have been a few other times when I was doing well enough and excited enough to get out not to be bothered much by the stress. But most of the time, it’s terrifying. Why? Well, there are a couple of reasons, but one in particular I want to explain today. First let’s start with a quick, one-word vocabulary lesson.
Proprioception: “the sense of the relative position of neighbouring parts of the body and strength of effort being employed in movement” (found on Wikipedia, quoted there from Mosby’s Dictionary of Medicine, Nursing & Health Professions). Here’s another definition which includes the fact that neurological disorders interfere with it and sensory integration therapy is used as treatment.
Sensory integration therapy was the treatment I received. The therapist never used the word “proprioception” and just told me I had trouble figuring out where I was in space, which never really made any sense to me. Like many autism-related things, I really only learned about this in detail during the past few years, and the more I learn, the more so many things from my childhood make sense. I was so terrible at sports, and I never knew why. I knew that I got confused with everyone moving around and I couldn’t figure out what was happening even though technically I could see it. How do you voice something like that as a kid? I just assumed everyone experienced the same thing but were better at working through it, that if I wasn’t so fat/lazy/stupid like everyone kept telling me I was, I’d just figure it out and move like everyone else. When I froze up in the middle of a field/court/whatever, the teachers just thought I was out of shape and didn’t want to play. No one treated it as a neurological condition, and I didn’t understand that it was at all related to the therapy I was given.
Now I understand I wasn’t lazy, I was dizzy and terrified. I could see everything happening, but I couldn’t make sense of it. The idea of moving made my head spin and my heart speed up. I was sure I’d bump into someone and cause a problem. Most of the time when I did move, I did either bump into someone I could see but not react to in time, or I’d drop the ball, or get in the way of catching it, or something along those lines. And then experience the wrath of the whole team, which doesn’t really help with the panic of not being able to tell what’s going on.
When I get on a bus, something very similar happens. First, I think the movement of the bus under me (not moving forward, but like the vibration?) while I walk throws me off a little, but I’ve mostly gotten used to it. But as soon as I run my ticket through the reader and turn the corner, there are all these faces just looking right at me. Too much. I can’t actually see any of them in the sense of recognizing them or reading the expression or anything. I don’t see people, just faces. So many eyes on me. So many unreadable expressions. So much going on between me and the next available seat. I can’t even see the seats. Again, in terms of processing. This is so hard to describe. I know they’re there, technically I can see them. But it’s like I can’t tell where they are. The distance between me and them seems so far, and I can’t map out a path to get there, and the bus driver is wanting to move. (Half of them will start driving even if you aren’t seated yet.)
So usually what happens is that I do a quick look to find an open seat, get overwhelmed, and collapse against the wall in the standing space. As far as I know there are no rules against standing there, several people do it and most of the time no one seems to mind. Every once in awhile someone grumbles about it because they think you don’t want to sit by them specifically or because they think it’s weird or whatever. I do feel guilty for taking up the space and will squish myself as far against the wall as I can to let people through. I’ve never seen someone who didn’t have plenty of room to get past me, though I did once have a woman growl at me about it. I still feel bad about that.
Last night I had someone get upset at me because they couldn’t see their stop. From the few times I’ve sat on the bus, my experience is that you can never see your stop from the seats. That’s why there’s a sign at the top and front of the bus that has the next stop written in lights. But if he’d asked me to move, I probably would have tried. In fact, even when he got in my face and said cryptically “You know, not everyone can see through you” and it took me about another minute after he was gone to figure out what he meant, I tried. I found an empty seat and started to move towards it, but I got dizzy and anxious and had to lean back against the wall. There were only two other passengers on the bus at the time, as far as I was able to see, and one of them is a co-worker I know well enough not to be thrown by his presence. All I can think is that it was anxiety from being singled out like that and having all three of them (the two passengers and the driver) watching me so closely.
I stayed where I was and got off the bus a few stops later as usual, and then went off by myself to think about it and wonder what I should do differently to avoid this. I still don’t really know. I can try to move to the other side, which is already obscured by the driver. I’ll keep trying to sit down. I can see it as another project pushing my limits. I don’t expect everyone to understand what I’m going through or make concessions for me, and I definitely don’t want to be an annoyance to other people. It’s just so frustrating sometimes, trying so hard to get through a situation like that with my head spinning and my stomach churning and generally just trying to hold on until I get to my stop and can escape, and then having someone point out that I am exactly as weird and obnoxious as I tell myself I am in my worst moments.
I guess I just needed to share that so I can let it go. Not really looking for advice or anything, I just need someone to understand what it feels like to be in that situation, how what seems like an ordinary activity can be so scary and disorienting. You never really know what people are going through (and I realize I don’t know what the guy who confronted me was going through, so I don’t want to make this about him). It helps not to be too quick to judge and assume they see it the same way you do. I already feel self-conscious about this post and wonder if I should publish it. It’s embarrassing, I worry it makes me look incapable. On the other hand, I think that’s an important part of disability advocacy. Yes, disabilities (surprise) make it hard for us to do some things that seem easy to everyone else. That doesn’t mean I’m not also a functioning adult capable of success. It just means some things are harder, and I’m working to overcome them. Really, I think that’s a strength. I’m going to try to look at it that way.