Thursday, February 10, 2011

Recommended Reading (and Donating)

I have a lot of links to talk up and that means it's time for recommended reading!

Asher wrote Critical Condition about a clinic in San Francisco called Lyon Martin. Lyon Martin provides respectful health care on a sliding scale to women and trans people. One of my friends gets hormones from Lyon Martin, and it has really made a difference for them to have access to this level of care. But Lyon Martin may have to close, and they're asking for donations so that they can stay open. If you can afford it, please donate on their website!

Amanda, Julia and I are starting a new disability group blog! It's called LOVE-NOS, and it's filling the hole that FWD left in our lives. If you want to be a contributor or write a guest post, please let one of us know. All the posts that are currently up there are great, and you should definitely check it out.

Amanda and I also started bad brains wearing clothes, which is kind of silly but also awesome. It's basically a brain disability fashion blog.

Finally, please read Insanely Cruel, which is everything I wanted to say after the Giffords shooting even though it was written before the Giffords shooting. It's about the assumption that anyone who would kill a lot of people must be "crazy," and how that comes from people's unwillingness to acknowledge their own capacity for evil, and how it's really ableist. This piece is short, too, and it's really important and you should just go read it.

Saturday, February 5, 2011

Quiet Hall Woes

When it's midnight on a quiet hall and your next-door neighbor, who is ill with Random Fever Illness and has mostly lost her voice, knocks on your door and asks politely whether you and your guest will please stop singing along to YouTube videos because she can hear you, the correct response is a quick apology followed by compliance. The correct response is most emphatically not to turn to your friend and burst into giggles, then turn back to your next-door neighbor and say "We half-expected this."

A woman with Multiple Chemical Sensitivity told me once that people sometimes like to "test" her by wearing scented products around her to see whether they will trigger an athsma attack or some other kind of reaction, and then when they inevitably do, these people will say something like, "Sorry, I worried that might happen."

If you were aware of the possibility of that happening, WHY would you do the thing that causes it to happen?

Okay, some background on next-door-neighbor girl, who I'm going to call Judy. Judy is a very nice person and is usually really pleasant to me. But she does enjoy lound noises, and this means that several times this year, I have had to knock on her door and ask her to turn down her music/ flute playing/ midnight singing. And she always complies with my request, as she did tonight, though sometimes not without passive-aggressive comments. (To be fair, I have to add that I was definitely passive-aggressive earlier today when I responded to her friends' shrieks of laughter by asking if they were okay.)

And I had sort of thought that Judy's repeated rule-breaking and noise-making was just done out of her desire to hear loud sounds and not with any thought of me. I didn't judge her for this because everyone sometimes does things that they think are fun without considering what the implications will be for other people. But when she said to me -- through giggles! -- "We half-expected this"... That kind of changed my mind.

Because if you're doing something and thinking "This will probably make the person living next to me feel so bad that she is moved to ask me to stop," isn't the right response to refrain from doing that thing?

This might be unfair to Judy for a number of reasons. Probably the most important reason I might be shortchanging her is that, while I have asked her on several occasions to turn down her noise, I have never explained my disability or sensory issues to her. I have never told her that last year I was trapped in my room for four hours because loud music from the floor above messed with my brain so much that I couldn't remember how to get out. I have never explained to her that even a faint noise, even a constant noise, even a noise that she would easily tune out can make me feel like six kinds of shit. I've never told her that from my room I can hear the house fellow's baby crying and cars backing up and people taking showers and pulling paper towels from the paper towel dispenser, and layering her singing over all this -- at midnight, when I'm sick and exhausted and even more lacking in spoons than usual -- is just too much. I probably should tell her all this, and maybe I will, but at the same time I feel like I shouldn't have to.

Because this is a quiet hall and I chose to live on a quiet hall for a reason, and that reason is that in a quiet hall you are required to keep noise down to a level where it can't be heard in the hallway or other rooms. And you're required to comply with requests to turn down your noise.

I feel like people who want to be loud at all hours but still choose to live on quiet halls are like non-disabled people who use disabled parking spaces. They can live anywhere they fucking want; I can only live here.

Wednesday, February 2, 2011

Community: I don't think it means what you think it means

I've been noticing something that's been bothering me a lot, and that is the way the phrases "autism community" and "autistic community" are used.

I find that when these phrases are used, in all sorts of media, they tend to refer to parents, siblings, grandparents, friends, and lovers of autistic people, as well as doctors, therapists, behaviorists, staff, and other professionals who work with autistic people. Who is not likely to be consulted when some journalist or blogger needs the perspective of "the autism community"? Actual autistic people.

Guys, I think this is a problem.

For those of you who like analogies (and I really do), imagine if whenever someone used the phrase "the gay community," they were actually referring to PFLAG, a group for straight allies. That would be not so good, right? Because as lovely as PFLAG is, they are by definition mostly straight people (not that gay people can't be parents and friends of other gay people, but I don't think that's what PFLAG is for) and therefore not a good choice to be the voice of "the gay community."

But actually, the way the phrase "autistic community" gets used is even worse than that hypothetical situation. Because PFLAG is at least genuinely supportive of gay rights. On the other hand, a lot of the parent-and-professional groups that get referred to as "the autistic community" really want autism -- and therefore, autistic people -- to go away forever. In my opinion, this is not good community-building sentiment.

I think this is fairly self-explanatory: if you want a community to be eliminated from the planet, you are not part of that community. You are not even an ally. Hell, why would you want to be part of that community anyway? You obviously don't like us very much.

If you're reading this and wondering whether it really matters how people use the phrase "autism/autistic community," let me tell you what I believe the misuse of this phrase does.

It perpetuates the idea that autistic people as a group can't represent ourselves and need non-autistic people to speak for us. It centers the concerns of neurotypical people in discussions of autism, when really it is our needs, our concerns, our rights that should be prioritized. It means that there are people claiming the support of "the autistic community" for positions that a lot of autistic people find morally offensive. It's one of the tools people use to keep our voices from being heard. In other words, yes, it matters. This is really bad news.