Sending this along because it’s good. Disability and Representation has many good words to say about the social issues of disability, this is only one example
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I was going to write a post about disability and accessibility, and the different ways people can view this issue. Now I think I am going to write about the process of what getting the post together felt like, and the sorts of things I experienced.
It started with this post from Disability and Representation. More specifically, it started with this paragraph:
I know that our society, by and large, does not yet see disability as a civil rights issue. I know that when people see stairs but no elevator, most of them don’t realize they’re looking at a civil rights violation. I know that most people don’t even blink when they see a sign that says that people with disabilities have to enter through the back door.
That got me thinking. It got me thinking about the fact that I had not thought about it. Why had I not thought about it? Because I am able-bodied and it does not apply to me? That’s not a very good reason at all. I also wondered about what other people think. I decided that instead of just taking the blog’s word for it, I would solicit some opinions. So I created a facebook poll on the matter, in which I asked “When you go to a place of business and see a sign saying “disabled entrance in rear” (or something along those lines), what do you think?” I tried to word it as neutrally as possible in order to see what people thought or felt.
A few people did see it as a civil rights issue. But most people clearly viewed the issue in terms of the business and compliance with the law. A small number of people also mentioned how it smacked of Jim Crow laws. Mostly, though, people answered in terms of businesses trying to comply with the law and how that costs money, rather than in terms of a group of people being relegated to the back entrance and how that might feel.
And I found it interesting. I found it sad. Many people did have good points in terms of cost, architecture, historical value, whether or not it is legal to renovate the front of the building in the first place, etc. They were valid points. But I still found it sad that there was so little about a group of people being treated as second class citizens. So little about the fact that it might be a sticky issue where the right answer in terms of money or legality or some such is still, in a sense, a wrong answer, what with that second class citizen thing going on.
So I tried to talk to a friend about it. And that’s where it all went horribly horribly wrong. I was really trying to make the point I was just talking about, but instead I was told, again and again, that I was wrong. I was looking for even one word of validation, that maybe I have a point that is worth thinking about, but I got nothing. No validation at all. It hurt. It was upsetting. My friend even accused me of having an implicit assumption of ablism in my question that was influencing the answers, but then refused to elaborate. I asked elsewhere, to see if anyone could see an assumption, but all I was told was that it could be seen in the line “disabled entrance in rear” but that it was about the sign, not about the question itself. So I don’t know.
The point is, I felt entirely unheard. I was trying so very hard to make my point, but instead there was all sorts of disagreement that wasn’t even about what I was trying to say. I was told I was misinterpreting the comments, failing to understand that it’s a legal issue, that the question had an implicit assumption, but there was nothing about my point that being treated as a second class citizen is maybe not so cool.
Then I tried talking to another friend about it. Much the same thing happened. I was told I was not understanding the comments, I was told I was using the word “wrong” wrongly, I was told that many businesses CAN’T allowed disabled people in the main entrance, that all I’m trying to do is make people feel bad about an issue that cannot be changed, on and on and on. Yet not one single word about how maybe that’s kind of discriminatory and wow, hardly anyone is talking about that.
I was going to write about how with some of the sticky issue, we have apparently, legally and socially, decided that the historical value of a building is more important than making sure no one has to use the rear entrance. That we do not value disabled people enough to help businesses that face prohibitive costs to renovating their main entrance. That maybe it’s worth talking about this and taking into account the points of view of the disabled people who have to use those rear entrances, who maybe feel discriminated against. I would have talked about the different answers I’m getting over time, the different sorts of answers I’m getting from different groups of people, which answers are popular and which ones are not.
Instead I am talking about how hard it is sometimes for me to feel heard. About how valuable even a small amount of validation of my point can be in a discussion, and how much it can hurt when it is simply not forthcoming at all. I got all muddled and confused in the conversation. I was still trying to figure out how to articulate my points, and instead of trying to figure out where I was coming from and what I was trying to say, my friends simply refused to listen. I can’t even properly feel like I was disagreed with, because they never bothered to hear what I was trying to say in the first place (to be fair, one did try a bit eventually). It hurt. Was it my fault? Were the things I was trying to say just horribly wrong? Do I actually not have a point? Am I simply not articulate? Is it wrong to draw conclusions based on the answers I was given to my poll? Were people unduly influenced by the wording of my question? I am full of self-doubt now and have lost all confidence in this as a blog topic. Is it wrong to say that maybe we should change some things? Is keeping the primary focus on the business bothering to comply with the law at all the right way to look at things? It is not worth discussing the topic from the point of view of discrimination and/or civil rights?
I still don’t think so. I still think it’s worth a conversation, at the very least. I think it’s worth validating the feelings of disabled people who feel singled out and discriminated against. But I no longer think that it is something I can write about.
But not a bad aspie moment. No, it was a very enjoyable aspie moment. My bf Nee and I went to the bank today, and while there he wanted to open an account. So after I did my things I joined him with the bank fellow. While there I spotted something on his desk – a sticky note dispenser! Nothing special or extraordinary, but I wound up fixated on it for the entire time, and needed to practice significant restraint to keep from asking a bunch of questions about it.
So while I was trying to act like I was participating in a relevant way, my brain was off obsessing about sticky notes. I pondered how they would have to be different in order to work in a dispenser (the glue would have to alternate sides). I wondered where he got that particular kind. I imagined ways a factory could make those kinds of sticky notes on very large pieces of paper, that could then be cut to size. One time when they guy had to do things elsewhere for a bit, I picked it up and inspected it, noting the bit that was spring loaded, and how the bottom was weighted.
At the same time I also started being very amused at myself for being so fascinated by something so trivial. I love my tendency to fixate on random little things, and office supplies are frequent targets. Aren’t office supplies great? Yes they are!
“Autism isn’t something a person has, or a shell that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion and encounter – every aspect of existence. It is not possible to separate the autism from the person – and if it were possible, the person you’d have left would not be the same person you started with.”
I really need to figure out a good appearance for this blog. I’ve tried a few things so far, but I haven’t liked any of them so far. gah!
I occasionally poke around internet forums for people on the autistic spectrum. It’s possible that a number of my posts will be inspired by things I read there, much like this post is.
In this case, it’s about how some people tend to generalize about neurotypical people, or NTs for short. Most days there will be at least a few new topics titled things like “Why do NTs do blah?” or “All NTs are blah!” and such. They usually contain a few anecdotes about behavior the poster has encountered in people, which have then been generalized to all NTs, often in a derogatory way. Granted, not everyone does this. In fact, it’s a possibility that only a minority of people do this; I have never personally counted. That said, it happens frequently enough that it feels like a trend, and I don’t like that one bit.
Personally, I really dislike it when people generalize about groups I’m in. It’s not fun for people to have assumptions about what Aspies “must” be like, and then assume that I must be like that too, especially when those assumptions are insulting. It’s also not fun for someone to tell me “I know someone who has Asperger’s and they aren’t like you, so you must be wrong about having Asperger’s.” Believe it or not, that has actually happened to me. Broad generalizations are really harmful when they are applied in a concrete way. As such, I really wish I didn’t see that kind of behavior so very frequently within the ASD communities I’ve seen. Surely we can be better than that.
So. I was diagnosed with Asperger’s Syndrome in the middle of July of this year. I decided that it might be worthwhile to start a blog about Asperger’s, my journey with Asperger’s, and maybe anything else related. I have no idea whether or not this is a good idea, or whether or not I’ll actually do much blogging, and if I do, how much I’ll blog. It’s all very up in the air at the moment. To add to this, I have never used blog.com before, so I’m still sorting through what everything is and how to best use all these features. And seriously, there are a lot of features. Wow.
I figured I might talk about the process of getting this diagnosis. It’s something I’ve been talking about a lot lately, what with my new diagnosis and everything, so having it all laid out in print might be nice. Digital print, but still.
I’ve always been a little (well, a lot) weird. I hate being lightly touched by anything or anyone, ever. I cannot stand mushy food. I get overwhelmed in crowded places with too much noise or flashy lights or people bumping up against me. In fact, I am not exactly a huge fan of being touched by people I don’t know, and sometimes I get in moods when I can’t stand to be touched at all, by anyone. I could probably continue like this for a while, but I don’t think there’s much point. Suffice to say, I was weird. I had (and still have) sensory issues, odd obsessions/fixations, and – most importantly – huge problems figuring out how to socialize. Have you ever had trouble telling the difference between a joke and the truth? I have that problem very frequently. It’s difficult for me to tell people apart without distinct clues. This made certain school years very difficult when nearly all the boys were tall, skinny, brown-haired, with goatees, and nearly all the girls were shorter with blonde hair they put in ponytails.
I first got wind of the idea that I might, maybe, have Asperger’s when I was 18 years old. I was talking about one of my oddities, I don’t remember which one, and someone suggested that I might be and Aspie. I thought it might be an interesting idea, and I did seem to fit, but I didn’t really pursue it all that much. I came from a conservative Christian family and I was attending a conservative Christian college, and looking for a diagnosis for mental illness just wasn’t done (nevermind the fact that I was having SERIOUS issues at the time. but we don’t need to get into that).
Over the next many years various people speculated that I might be an Aspie. Slowly, over time, I warmed more and more to the idea of going to a professional and finding out for sure. Actually finding someone to diagnose me was really difficult, though. It turns out the Penn Medical has an Adult Social Learning Disorders program, but finding that program took a long time and a lot of help. Eventually I found a psychiatrist, and she told me about the Penn Medical program. So, I went ahead and did it.
That was terrifying, by the way. All my life I had been weird and odd and not-right, and this had caused me many, many problems. I had suspected for 12 years what it might be, but suspecting is not the same thing as knowing. Plus, what if they told me no? What if I went through all that, got an assessment, and they said I did not have Asperger’s? Then I would have to start over at square one, wondering what’s wrong with me, why I’m so weird, without even the benefit of an idea of what it might be.
Luckily, it didn’t turn out that way. I filled out tons of paperwork, called my mom and interviewed her, and two people went with me to the assessment itself to also get interviewed. So much stuff! And after all that, the psychologist told me that I do, indeed, have Asperger’s. Not “mild” Asperger’s either, but really all-the-way totally Asperger’s. That was such a relief! Since then I have had additional confirmation that suspecting is not the same thing as knowing. Now that I know, for sure, for real, it’s… well, I’m still figuring that part out. Mostly so far it’s been like permission. Yes, I’m weird, I’m not like everyone else, and it’s ok! This is just the way I am; I am neurologically different.
I have my first therapy appointment for early September. I do have any number of issues and problems which would be very useful to address with someone who works with Aspies as a career. I figure we could work on addressing certain problems I have, work on capitalizing on my Aspie-strengths, and maybe a little bit of integrating having Asperger’s into my overall identity. Or maybe I’ll do that last one on my own.
In any case, there is it.