09 January, 2011

small things

(This is kind of a messy post, because I started wanting to write it a few days ago and when I don't write things immediately they become disjointed. But I think I'm possibly hitting on some useful stuff.)

Recently Dave Hingsburger wrote a post (which I really liked) about riding a renovated elevator with his partner and a woman with an intellectual disability whom they both knew. The numbering system for the floors of the building had been changed in the renovation, and the woman was confused and scared that the floor she usually got out on had a different number. In his post, D.H. used the incident to discuss different kinds of accessibility--like, people are supposed to understand that, as a wheelchair user, he needs an elevator. But even if people can understand that, or at least accept it when they're told, they can still be unaware (and unsympathetic) when they're creating a barrier for someone with a developmental disability.

Something that I thought was interesting, though, is that D.H. put a disclaimer on the post, apologizing because he hadn't written it carefully and it might be offensive. I'm really unclear on how it could possibly be offensive--because he's calling out his readers who don't accommodate people with DDs when they should? I'm pretty sure that's not it. So I found myself wondering if he was worried that he was making people with intellectual disabilities look bad, or being patronizing, or something, because he was talking about the issue that this woman had.

And, you know, I get that. Being confused about things that other people don't get confused about is one of the most embarrassing things there is. Personally, I have often thought that one train station, or street, is a completely different one. I also misremember times; nothing falls into place for me, things always have to be completely thought through which is something I don't have time for, so: mistakes. And if some new option appears in the middle of a day that I had laid out for myself, I'll do anything to avoid it. It just feels miserable (which has kept me from getting jobs, and so on, because I didn't interview when they first contacted me).

I'd pretty much happily try to keep people in the dark, just because it's frustrating; the moment you realize, for example, that this isn't the train station you thought it was, so what you were saying doesn't make sense, and your friend is waiting for the rest of what you were going to say; everything becomes perfectly clear, so clear that you can't believe you didn't understand it before. So you want those other parts of you to disappear, the parts that existed a minute ago and had everything wrong. You just want the past to drop out of sight so you can move forward like you were never wrong.

The thing is, though, that my instinct feeds something dangerous. The problem with mistakes and slowness and confusion is that they can't necessarily be measured or felt as easily as blindness--and, for that matter, they can't be felt as easily as other aspects of intellectual disability or autism or other disabilities that result in these kinds of small problems. Because they are small problems, and looked at one by one they're not worth worrying about. They're funny. So you got confused about the new elevator. Just laugh at yourself and move on.

The problem is that we have to take stock of small things if we make regular mistakes or are very easily confused. Small things become impossible to laugh at, and even worse because other people don't understand the drain on your time and energy that it takes to recover from so many small things; because other people are just slightly annoyed with you every time.

The problem is that these things seem so embarrassing and stupid that you kind of want to forget they were ever there at all. If it's you, it makes you feel bad about yourself. If it's someone else, maybe you feel that you're airing their dirty laundry. D.H. makes a point of saying that the woman in his post is "bright and competent," as if the events of the post would cause his readers to assume otherwise. Which is probably a reasonable fear because the small things don't even exist in our conscious mind as disability, exactly; at least a lot of people try to understand that you respect someone even if they can't see, can't walk, can't talk--but the small things are still so invisible that they can just completely bias us against someone else or against ourselves, because we see them as an indicator of being inferior in some way.

One of my big issues with disability services at school is that they're completely ignorant of the small things. Accommodations are always about specific things that are agreed on beforehand. There are never accommodations for after you make a mistake (forgetting to show up for an exam, forgetting to turn in a paper that you actually finished). You just have to hope you'll be lucky, because the idea is that people (even disabled people) who work hard and concentrate don't make mistakes. There is no room for that.

I think it is easier, in terms of understanding and accommodation, to be unable to do a particular thing than it is to be able to do it some of the time, or to have it be a lot harder for you than it is for other people but to always be able to do it eventually if you put in the maximum amount of effort and time. Obviously, part of treating disabled people fairly has to be understanding complexities of disability and understanding that it absolutely isn't fair to expect someone to be at the top of their game all the time or working ten times as hard as everyone else--even if they technically can do the same things, with unlimited time, in a vacuum. And I think a really important part of talking about the complexity of mind disabilities is talking about times when people misunderstand things and make mistakes. This is such a timesuck and can make you miserable--and, yes, mistakes seem stupid after, but that doesn't stop the effect of making a ton of them.

But it's really difficult to talk about these kinds of incidents--confusion and fear and mistakes--because we think that they reflect badly on us, you know? Maybe we're immature. We should have done something different. But we really have to talk about them, or there will never be support for people who need it, because a lot of us will always keep making mistakes.


  1. This is really interesting.

    First off, it reminded me of my most recent trip where I took a Greyhound to the east coast during x-mas, and there was a part that got very stressful because my luggage had gotten lost and was found, but then the baggage people refused to put it on the bus because they had different rules for baggage handling than any other Greyhound station I had been to (including on that very trip). So I had to go back and get a baggage claim and hope they didn't leave without me. They said they wouldn't leave without me but you know how hard things like that are to believe at times.

    So then I went back with my baggage and its baggage claim and the guy was still not putting it on the bus! And then he wandered off, came back, finally put it on the bus, but now the door of the bus was closed and I couldn't get on!

    And this was when I started seriously freaking out and biting my hand. But apparently the bus driver wasn't on the bus yet, so it wasn't going to leave without me. But it was still freaky, you know, because it was off script. I was close to panic.

    Um, I finally got on the bus. Obviously. But yeah. It was one of those thing where my 'normal' facade cracked. And it's always embarrassing because it's like people can see how much of a little kid I really am inside.

  2. Yeah, I really relate to this, especially the part about unexpected things throwing you off. I always ask my teachers a bunch of questions, probably for this reason. The good teachers enjoy the questions, or at least don't seem to mind them.

    Reading that Dave Hingsburger post reminded me of something. I was at school, and I walked into what I thought was my classroom, only to realize that I didn't recognize anybody in the room, and they didn't seem to recognize me. The door to the room was on the same side of the hallway and in the same position as my classroom. It turned out I was on the wrong floor. If I had been on the right floor, it would have been the right classroom. Fortunately, I realized my mistake fairly quickly, but it was still kind of alarming. I don't remember exactly why I was on the wrong floor. I probably had a class on that floor and just forgot to go downstairs or something.

    I don't know how common this is, but most of my nightmares seem to be the kind where I have to do something but I can't do it for some reason, and it's always something that should be really simple.

  3. I read that post at Dave's blog as well and couldn't figure out why he thought it would offend people either. I really appreciated that he wrote about it, though, and thought it was a good post.

    Your comment about accommodations only including what was specifically agreed on beforehand made me think of how most job descriptions include a list of specific responsibilities and then usually have a bullet point that says something like "Other duties as assigned due to the evolution of the business."

    Perhaps there should be a similar agreement with the disability services office that they would provide other accommodations as needed when they arise.