I’m going to post a link.
If you ever argue that autism and/or Asperger’s is “not a disability” because you think this configuration of our bodies partially, mostly, or entirely provides something positive in contrast to typical people, then please read it. The person who wrote it directed it mostly at you.
If you ever argue that autism and/or Asperger’s is “a disability” because you think this configuration of our bodies partially, mostly, or entirely provides something negative in contrast to typical people, then please read it. This goes double if you argue it for something you call “low-functioning autism” but not for other autistic people. This goes triple or even more if you want to cut “high-functioning autism” and/or “Asperger’s” off of the “autistic spectrum” because they’re “not disabled” and “low functioning autistic people” are disabled. The person who wrote it only directed part of it at you, but from the standpoint he’s talking about, your viewpoint is nearly identical to the viewpoint I described in the first paragraph.
And of course, the viewpoint he’s talking about is also really important for you to read if you’re the sort of person who says it’s “neither an ability nor a disability,” or “composed of both abilities and disabilities,” or “both an ability and a disability,” or similar wording, because it’s also from the viewpoint he’s talking about pretty identical to the first two paragraphs.
And for everyone else, including those who know the general viewpoint he’s coming from already, the advice he gives is still really good, so go read it too.
His post is called Welcome to the disability community. In general, go read it. Multiple times if necessary. Then seriously consider taking his advice.
Last night, I got involved in a discussion of disability rights with people who mostly had some background in that area. Some of them were autistic and some of them weren’t, but most of them had heard, at least somewhat, of the standpoint on disability I come from, which is that disability is the intersection of your body with a world that has planned for some sorts of people and not others, when you’re one of the “others” that wasn’t exactly planned for. Things that would not be barriers to people that it was planned for, become barriers to you because you weren’t among those planned for.
The most common examples of barriers are physical, both because they’re concrete and easy to describe, but also because there’s an often-unspoken hierarchy in the disability community that has fought for the removal of these barriers, and we’ve got more practice talking about wheelchair ramps in the offline world and blind access in the online world than we’ve got talking about making the online world accessible to assorted kinds of cognitively disabled people or making buildings accessible to people for whom the most common forms of fluorescent lighting impair their ability to think or move.
If either I or my friend want to visit each other in the public part of our building, for instance, it’s almost perfectly wheelchair-accessible. The hallways are wide and flat and there is elevator access to the entire building. There are stairs, but they are optional. Many wheelchair users in the disability rights movement would stop right there and claim that the building is “accessible”. However, the public areas of the building are also fitted with old-style fluorescent lights. This gives us both some combination of migraines, seizures, and general levels of confusion. (How much confusion? When I was a teenager I took a night class under fluorescent lights, they were the only source of lighting and there were lots of them. My mother would pick me up in a brown minivan. I came out at one point and tried repeatedly to get into a little white car. I was pulling on the handle and everything. The driver did not look close enough to my mother for even me to confuse them, and the dog in the car didn’t look like my dog either.) Tinted glasses help to an extent but they don’t fully solve the problem. So the hallways are actually not fully accessible to us.
Cal Montgomery wrote some interesting stuff about this in the essay The Way Things Are. Don’t be put off by the fact that it’s about Foucault if you’re normally (as I am) put off by postmodernism. She makes some good points and she makes them in everyday language. She, like both me and my friend, finds both stairs and fluorescent lights to be access barriers. She writes about a meeting of her local CIL (Center for Independent Living) that she was invited to. They told her it was “accessible” when they really meant wheelchair access. It was really held in a room with fluorescent lights, by people who both knew that was a barrier to her and had access to a room that was both wheelchair-accessible and lacked fluorescent lights. Then she invites us to think about the fact that we often think the way things are is the only way they ever could be. She writes:
Some of us believe that “high-functioning people” or “the invisibly disabled” or “people who only use wheelchairs” don’t face any real disadvantage and therefore don’t need either cures or rights; some of us believe that “low-functioning people” or “mentally retarded people” are disadvantaged by medical conditions alone and therefore aren’t the concern of the disability rights movement; some of us believe that alcoholics drink for moral and not medical reasons and others believe exactly the opposite; and most of us have probably never seriously questioned all of our beliefs along these lines.
The way the “cross-disability” sections of the disability rights and the independent living movements are dominated by certain categories of disabled people seems natural to many people, but it could have gone another way. The movements have come to believe that it’s important to get wheelchairs into classrooms and jobsites and housing and CILs that are built to accommodate them. They haven’t come to believe that it’s important to do the same thing for people who can’t manage under fluorescent lights. But it could have gone differently.
Imagine for a moment that the disability rights movement had not arisen during a time when there were not so many white-collar jobs in America, but rather during a time when the majority of us were expected to do physical labor.
In such a time, with an “able body” being more important than an “able mind” it’s entirely possible that people with cognitive impairments might have come to be the paradigmatic disabled people around whose needs the whole thing was organized. After all, our physical accomplishments would have a whole lot more to do with our places in society than our cognitive accomplishments. We might have come to see a fluorescent-infested environment as unjust earlier than we grasped the injustice of stair-infestedness, and my local CIL might have mentioned, under “Access Accommodations,” that the annual meeting would be held on the second floor of a building with no elevators.
An interesting thing about the disability rights movement, that many people in the autistic community have not yet realized, is that a lot of the fights for access do not depend on what condition you have. Standard fluorescent lighting is inaccessible to many autistic people. It’s also inaccessible to many people with migraines, epilepsy, people who don’t have epilepsy but who are on medications that lower the seizure threshold, multiple sclerosis, and a number of other conditions. And people with these various conditions can all work together to make sure that there is some kind of lighting, whether incandescent, some other kind of fluorescent that causes fewer problems (especially, if bright, if the lighting is indirect rather than direct), or light-emitting diodes, that is accessible to more of us.
At any rate, it makes sense to me that people haven’t heard a lot of these ideas, but there’s a really good reason for familiarizing yourself with these ideas, which is that a lot of the groundwork has already been laid for us, and a lot of us are spending a lot of energy, as Joel put it, reinventing the wheel, when we could go a lot further than that a lot faster if we knew the background of what’s already happened that makes a lot of things possible — and if we knew what was possible.