curate to create


I hate orange, so this is the one orange piece of clothing in my entire wardrobe. I only own it because it’s what was there in my size at a thrift store when I really needed summer clothing. But I’m willing to wear it so as not to be wearing blue today. (And yes, for readers, this is me taking a break from the “don’t write about serious issues” thing because it’s a specific day that won’t come again for a year.)

I’m autistic, and if you slanted my life a certain way it would make for a pretty standard sob story for an “autism awareness day” post. Due to autism (and a related movement disorder which gradually makes hard skills even harder, starting in adolescence) I can’t speak or take care of myself. I require anything from help starting and continuing, to total assistance, with everything from eating to bathing. I would not survive very long if you just plonked me into an environment where I had to do all these things for myself. I get pretty extensive services just to live in my own apartment, and a lot of people seem to think it would be better if I lived in an institution. I’ve had to fight that off several times. People who meet me frequently believe there’s nobody inside me at all, and act accordingly.

But unfortunately for those who would make me a poster child for autism awareness, I don’t think the same way they do. Comparing autism to cancer, diabetes, or AIDS is sickening, having known a lot of people who died from those things. I don’t believe in creating awareness through pity and fear. I actually don’t believe in awareness as a goal in itself, for that matter. And I’m nobody’s inspirational little angel.

The only way for things to get better for autistic people, is for things to get better for disabled people in general. And the way for things to get better for disabled people in general, is to create a society where every one of us is worth exactly the same as every one of you. No more talking about how we’re better off dead (or never having been born), or burdens on our families and on the taxpayers. No more putting us into “special” environments that nobody else has to go in. No more funneling money into institutional care so that we cannot live in our own homes as adults — our own homes, meaning not those of our families unless we want to live with our families. No more withholding medical care because supposedly we don’t have enough quality of life. No more ensuring at every level of society that we are shut out from opportunities and shut into horrible situations.

But that takes a little more than awareness, doesn’t it? It takes restructuring things at every level. It takes understanding that everyone in a society gets extreme levels of support, and the only difference between disabled and nondisabled people’s support is that nondisabled people’s support is taken for granted while disabled people’s support is seen as special and optional. Until people see all support for disabled people as necessary and indispensable on the same level that support for nondisabled people is, things will not change for us. No matter how many people wear blue and support organizations that work on our behalf without being run by us.

Most of the activities during these awareness months, they actually work against these goals for disabled people. They work directly against them.

Here are some organizations, mostly in the USA, that are working for disabled people in various ways. I don’t necessarily support everything they do, but they’re doing a hell of a lot more for us than the organizations most people promote on days like this. Some of them are autism-specific and some of them are not, but they all create real change on various levels:

Some things disabled people actually need:
  • Universally available services, so that we can live where we want, throughout our lives, regardless of income or other considerations. Preferably to such an extent that they are considered just as essential as having roads that work and lighting in public areas at night. Because only then will they not be threatened by people thinking they can cut costs by throwing us off a cliff.
  • Access in as many areas of life as possible. That means things most people think of, like ramps and Braille, but it also means things that most people do not think of, including many things related to autism.
  • When crimes are committed against us, we need to be treated like we’re actually of value. That includes when the crimes are committed by the police themselves, which often happens to disabled people of color especially. And this is an issue we share with other groups of people that society doesn’t value — it becomes much worse when we’re a member of several of those groups.
  • People in all parts of our lives need to value us. That’s actually at the heart of everything. Because if people actually valued us on a large scale, none of these other things would ever be problems. And yes, even many people who think they value us, don’t. Because people who value us don’t use pity to raise money “for” us, don’t make excuses for people who kill us, don’t treat us like we’re a huge expense to society while other people aren’t, don’t have to elevate us to the status of angels in order to see something good about us. I could go on for the length of a book on this. Many people have. But the bottom line is if we had any real value to people in general, none of these things would be happening.
This is something I’ve just written off the top of my head, and a lot of things are missing. But what we don’t need? Most of the stuff that goes on for Autism Awareness Day/Month. That stuff brings us back in the opposite direction.
#disability rights #important! #good words #smart people
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