Monday, October 31, 2011

Autistics Speaking Day: For the People Who Speak With Me

This is sort of about allies, but not exactly.

This Autistics Speaking Day, I want to give a shout-out to the people who stand with me while I speak. The word ally works, ish, but that's not their primary role in my world.

They're my friends.

A lot of allies have that ally mentality, where they have chosen a just cause to do right in the world. And good for them-we need people who see the concept and are like "yeah, I'm all for that concept!" and spread the meme. People who speak truth to power in a general sense are a good thing.

But that's not the same thing.

A friend, at least a friend of mine, they have a choice. They'll have to probably make it pretty early in knowing me, because there's a lot of anti autistic and other ableist bigotry that I see every day, & I point it out (and this is why I am always SO. DAMN. TIRED). I see it, I call it, and then they have a choice:

They can minimize, justify, otherwise derail.

Or they can choose to be a decent human being.

As soon as someone starts saying "it isn't that bad" or "you're too sensitive", they have chosen to not be my friend. The ones who choose to be my friend, they consider things and come to a conclusion that ableism or anti autistic bigotry or strobing a light in my face or whatever isn't ok.

And they stand with me. Not like in the abstract "making things uncomfortable for disabled people isn't ok" way (and seriously, keep doing that), but in a bigger way.

In a "that is wrong and unacceptable and don't ever do it again and fuck you straight to hell for doing that shit to my friend" kind of way.

People can be attached to an idea. People are downright fierce about their attachments to people.

And for friends-at least the kind of friends I have-it is personal. Doing something bigoted isn't throwing some vague oppressive vibe into the air; doing something bigoted is directly hurting a real person with real characteristics besides being disabled. You aren't just shitting on "the disabled" when you do that, you aren't just excluding some vague potential people when you don't make things accessible-you are engaging in behavior that makes someone, a real someone, actually in someone's monkeysphere, uncomfortable or unsafe.

It's not really a 'thing' to speak for or on behalf of one's friends, so people doing stuff like leaving a persistently ableist pizza place for good isn't doing a deed for the disabled-it's "FUCK YOU! STOP HURTING MY FRIEND". There's a difference. If someone talks to an ally about how to, say, make people like me understand that they are just concerned about my safety in a rock climbing class, the instinctual response isn't necessarily going to be a condescending "she's right there. Tell her". It's just a different mindset.

So yeah. You want to be a fucking amazing ally? Don't become my ally. Don't work on behalf of me and my community. Become my friend and channel your inner fierce loyalty. It does way more good in my day to day life.

Besides, I am freaking awesome.

(oh, and my friends are pretty ok too).

Thursday, October 27, 2011

Advocacy: Everyone Can Do It.

This story happened a long, long time ago, almost 10 years now. It's still exactly what I think of when people tell me about their kid who will "never" self advocate.

I worked for a few years with a boy who we will call C. C was about 9 when I met him. He was nonverbal, really hated typing on the computer, knew a few signs, and had a PECS book. He had experienced many years of ABA therapy, which is very much therapist directed, and he was growing increasingly frustrated with how things in his life were going. His frustration was pretty clear-he was angry a lot of the time and he was lashing out physically when a lot of demands (or unpleasant demands) were made. His PECS book often didn't have what he wanted to communicate in it, so that added further to his communication challenges. What he was left with was behavior as communication.

I'm pretty sure C's parents weren't exactly looking for self-advocacy teaching, at least not what I do. They had the whole "autism as tragedy" thing going on, were into quackery, kind of seemed to resent C for existing (ok, so very much resented C for existing) and wanted compliance and normalcy, not what I was offering. But C and I hit it off right away & I wasn't completely horrified by his expression of his anger. I avoided getting hit, obviously, but I wasn't going to restrain him or, nearly as bad, throw more and more demands in his face when he was upset. That's silly. It does not work. Typicality is not a realistic goal, but being able to express wants and needs is, and it was quite likely that C could learn a more expedient way to make his wishes known.

When I started working with C, I had a rule for his ABA therapists and parents: if C made clear a want or a need, he gets it. If he indicates that he doesn't want to do same with same or whatever, he doesn't do same with same. If he indicates that he is not ready to leave an activity, he doesn't have to leave yet. He needed to learn that he has some agency after so many years of following other people's agendas.

What's the first thing little kids tend to learn to take power over their lives in small ways? The word "no", right? I wanted C to learn that he could ask for things and get them, and that he could say he didn't want to do things and get that. A lot of our time was spent playing and him indicating he wanted or didn't want things, and me putting into words "No, don't take your block? Alright!" or whatever when he indicated in any way that he didn't like what I was about to do or did like or want something. Showing him that adults do take his wishes into account.

Then I took C swimming one day. This was something his ABA therapists didn't like to do very much because apparently it's a battle to get him out of the pool, he liked swimming in the deep end even though he wasn't an awesome swimmer & keeping him in the shallow end could be meltdown inducing-he could swim, but needed an adult right there. Not a battle I wanted to fight, but I'm not a fan of the Adult As God paradigm. I liked swimming and I liked C, so it was a good time.

We did some laps, we (well, C) splashed around in the shallow end, and 15 minutes before we actually had to leave I asked C if he was ready to get out.


Clear as day, emphatic, and with feeling.

Yeah, we didn't get out of the pool for another 10 minutes. C indicated no, he was enjoying himself, he did not want to leave. And he did it in a way that no one could deny-no is an important concept in making one's needs known, and everyone knows what it means.

He used the word NO a whole lot-they made him do a lot of inane things (touch nose? Really???) and he didn't want to. I don't blame him; touch nose is not exactly a meaningful activity. He started indicating preferred activities & even started helping make a schedule of stuff he'd do during his sessions (or what toys we'd play with & such...interactive toys for demonstrating "I don't want to" or "don't do that" are pretty great).

Then he stopped & started biting again. Being bitten hurts. Biting wasn't getting him what he wanted. "What. Did. You. DO?" was my question to the ABA people.

"Oh, he didn't want to do (some meaningless task) and I hand over handed it."

"...what the hell is wrong with you?" (insert about 15 minutes of full volume yelling about how it was his body and he had a right to not be touched and he had a right to determine his activities, and she owed him one hell of an apology, and he was going to get that apology. Where C could hear it. And where C's parents could hear it, because they were in the same county).

She thought I was kidding. I wasn't. She quit shortly after-apparently apologizing to a just turned 10 year old was beneath her, or to an autistic kid, or being told to by an autistic adult, I dunno.

And C started saying NO! again. Then we started fixing his book & set up a dynavox, but that's a whole other story....

Monday, October 24, 2011

Just Don't Use That Word.

Two stories, both from this week, both illustrating how far we need to go in terms of the general public acknowledging that developmentally disabled adults out in public are, like, a thing:

Friday I went rock climbing. The facility has started charging an obscene amount for equipment rental, so my friend and I hit the discount outdoor supply (yeah, this city is so awesome that we have one of those). The guys in the climbing section were awesome-they even found a harness to fit me (I'm in a weird 'tweener size range). They were great, especially given that it was towards closing time on Friday and they were suddenly confronted with several people who all had drastically different needs.

So anyway, even though I was dropping a substantial chunk of change, I was pretty pleased. Then we go to check out & the chick at the register calls her machine r*tarded. Really? Really?! I could feel my climbing buddy wince from 10 feet away.

Don't use that word. It's ableist and unacceptable and hurtful. Oh! but it doesn't mean that! she says. It means slowed down and the meaning has changed and she grew up with foster kids and "worked with those people" and endless stream of justification.

Yeah, no, lady. And developmentally disabled people may be dropping $120 in your store right now and may be very much reconsidering that choice. The correct protocol is to apologize and STFU. And if you call me hun again I am going to slap your face off. The only thing that kept me from walking out was the knowledge that the shoes alone usually run around $200.

Then there was Sunday. As I've blogged about before, I swing dance. I have made some very good friends dancing, and it partially fills a gymnastics-shaped hole in my life. Anyway...

This very nice guy who's been dancing forever brought his nephew or cousin or something (younger male relative, in his earlyish 20s I'd guess). The kid kind of rubs me the wrong way, but whatever, right? There are lots of decent people with whom I just don't mesh, personality-wise. So this dude comes out to Denny's with us after the dance. We played this ridiculous game, Quelf the Card Game-as opposed to Quelf the board game-which involves doing silly, silly things.

Dudeguy pulls a card and says "I won't do this. It's r*t*rd*d." Don't say that word. It's bigoted. "Can I say 't*rd*d?" Well, not if you don't want me to think you're a bigot. Don't spew that hate in front of me.

Insert his not knowing what ableism is here (it's like sexism or racism, except against people with disabilities!). Insert "but I didn't know anyone here is disabled" as a justification here (because it's totes OK if no one is there to be offended, amirite?). Yeah, dude, I'm autistileptic. Nope, your claim of "borderline autism" doesn't impress me-you're still 100% ableist asshat and there's nothing that will justify that.

The guy asked if I'd be offended if he carved "fuck your god" into his arm. Non sequitur much? At this point other people are telling him to just stop, and one friend pointed out that I'm an atheist, if he was going for shock value with that one. I really don't care, it's his arm, though I do wonder what the purpose of doing that would be.

Then we get more word vomit of the R word & "well I don't know what other word to use!" Um. Bullshit. There are lots of other words and after you call me an fing r I have no reason to educate you-you are not worth my time after that. The guy just won't stop with the offensive and my friend tells him he is no longer welcome at our table-I was ready to leave at that point, but apparently I wasn't the one being an asshat?

This guy then goes around with the card that he insists playing would make him look like...well, that word (as though there is no worse fate than the late night crowd at Denny's wondering about you!) and he asks the waiter and all the stoners and other assorted riffraff that frequent Denny's at 1 AM for an adjective that describes the action on the card (please note that I absolutely without reservation consider my group part of that riffraff as well).

He. Asked. The. Waiter. To. Justify. His. Ableist. Hate. Speech.

The waiter was having none of it, fortunately, so this guy just stood at the side of our table for an hour while everyone ignored him. And on his way out he made sure to be vaguely threatening while using the same word about 10 times in one sentence.

But still. Hate speech. He fought that hard for his "right" to use hate speech.

My friends are awesome and wonderful, I must point out. There are so many similar situations where being not-ok with that word is somehow embarrassing or something, and they were pretty solidly "just stop, dude", which is just a symptom of their amazingness.

But this isn't the kind of thing that should happen at all.

In both these situations, people felt they were entitled to use words that the communities they are used against have explicitly said they disapprove of. And then when I, a member of said group, said "that isn't cool" (and according to witnesses, in the kind of way that isn't even offensive, since argument from tone is so damn popular), they felt they had a right to argue their right to use That Word, even though they'd never dream of using similar slurs, because they somehow have the right.


It is not ok to use my people-yep, we're all stuck with each other-as your insult. And you sure as hell have no right to try to argue that because you know a disabled person or don't know that someone is a disabled person it's ok. Your bullshit, it is not flying here.

Saturday, October 22, 2011

For the billionth time: I DON'T HATE PARENTS

Well, not as a general rule. I make exceptions obviously, but someone kind of has to earn my ire.

Some absolutely wonderful people I know are parents (obviously. I work with kids). Some of them are even parents of autistic kids. Some parents of autistic kids have been nothing but lovely to me. I count some of these people as friends, even-a much more exclusive group than "people who are pretty alright".

If you are a parent & feeling like I hate you because I call you on something that's a problem-NT centering, for example, or calling yourself the autistic community when you aren't autistic, or for accidental use of silencing tactics or whatever-that does not mean I hate you! If I hate you, I'll probably say so, in so many words.

It is not an attack on all parents when I speak the ugly truth that many, many parents are horrible. Don't tell me that doesn't happen. It does. Been there, done that, paid the therapy bills. Don't tell me that parents don't center themselves in discussions on disability. A lot do. Many probably don't mean to. The ones who persist in doing so are irritating. That doesn't mean I hate them, unless they're really egregiously obnoxious about it.

I am not demonizing parents as a group pretty much ever. Those of you who think so really need to get over yourselves. If you feel 'demonized' by someone with a disability calling out problematic behavior, then maybe you need to look at yourself and why you feel hurt, especially if you insist you aren't Like That. If you are so deeply hurt by hearing about specific things that specific shitty parents have done, dig deep inside yourself and figure out why that is. Is it a knee-jerk feel-offended-because-someone-didn't-glorify-parents-of-disabled-kids? That's a personal problem that you may need to work on. Is it an I-feel-bad-because-I-empathize-with-these-shitheads? That's a different kind of personal problem. But it isn't me demonizing parents (I keep using that word because it keeps getting thrown around and I don't really know what the users are using it to mean, except "making out to be a demon") when I give specific examples of parenting choices that are shitawful.

But I don't hate parents! I hate certain things some parents do! I hate parents who are horrible people. That isn't unreasonable! I hate when parents tell me I need to shut up because of whatever stupid reasons! Also not unreasonable. And I think it's fair that I hate the dad who decided that stabbing an autistic teenager in the arm because of...whatever reason he gave, something about his wife and crying...was a good idea. Don't tell me that's unreasonable either!

So, if you think I hate you because you engage in any of those things, I don't, probably. But I sure think they're shitty things to do. If you want to know if I hate you, specifically, you can ask instead of assuming.

But I probably don't. I just won't hide what I think to make people less uncomfortable.

Thursday, October 20, 2011

Both of these things are GABA!

The molecule? That's gamma amino-butyric acid, as represented with a molecular model kit (and yes, I know that gamma is a Greek letter. I don't have a Greek font).

That cat? Her name is GABA. She's very mellow & relaxing to be around.

Friday, October 14, 2011

"Just be NIIIICE": Argument from tone is BS

Let's say you're talking about social justice with someone of an oppressed class (and, for sake of argument, in that particular arena you have privilege). They're saying things you don't want to hear, uncomfortable things that hurt your feelings or make you feel bad. And let's say this person is saying what they mean, rather than sugarcoating it or apologizing.

You turn to the guaranteed conversation stopper: Argument from Tone. "You don't have to say it that way!"

Yes. Yes I do.

It's incredibly arrogant to dictate to someone how they say say things. Most of what gets brought up in these sort of discussions is difficult, it's real and it is raw. And we get told by privileged people all the time that what we have to say does not count because we are not them.

In autism discussions, this already huge problem is worse. Not only is it privilege abuse, but to tell people who are often neurologically incapable of tact and sugar coating that they have to say something 'nicely' or you won't listen to them, that is why it's so obvious that many allistic people want disabled children to talk and disabled adults to shut up.

It is utter ableist crap to say "talk like an allistic, and then we might listen to you." See, we can't talk like allistics. We have a disability that involves social and language differences! Can no one see the problem with demanding that people who tend to have language problems and social differences carefully phrase their language (which can be a battle to put together in the first place) with feelings in mind more than content?

Tone doesn't change what people are saying or why they are saying it. Those extra words, that padding, isn't going to change truth, it's just going to make privileged people feel less guilty. It isn't always about the comfort of privileged people, and it's never about feelings.

If someone is engaging with you about these issues, they probably think you have potential. Then if you pull argument from tone (by the way, it only seems to run one way. If I tell you that what you do is hurtful, no one gives 2 shits), well, there's more of our time wasted. And if you are going to insist it's my responsibility to educate you about autistic culture, don't fucking dare bringing my 'tone' into it.

In fact, just leave tone out of it altogether. Listen for content, not warm fuzzies.

Tuesday, October 11, 2011

Geek Girl Con Reflections: The good, the bad, the WTF

I went to Geek Girl Con this weekend, and it was all sorts of amazing. It was a creep free con, which pretty much doesn't happen, and most of the panels were actually relevant to my life as a geeky, social-justicey woman. It was pretty freaking fabulous.

As I continue to review, keep in mind that we fans are toughest on the things we love. Think of it as having high expectations-I expect the world of things and people who should be able to achieve that.

Let's start with the good (mostly. I get kind of tangental):

-CREEP FREE WEEKEND. Thank you, that is all that needs saying, except it isn't. At other cons I'm afraid to cosplay, what with objectification and the sheer creepness of people who are threatened by a nerd girl or whatever their issue is. I didn't feel objectified or leered at even a little. Awesome.

-Oh my gosh, I could have spent SO much money in the vendor's hall. If you've never seen Surlyramics, you are missing out. There was so much geekery I couldn't entirely handle it.

-It was more diverse racially than pretty much every con I've ever been to. It was still predominantly white, but there were a lot of women (and men, for that matter) of color there, which I find extremely cool.

-Speaking of Teh Menz, there were way more than I expected. That's kind of awesome, because it means that there are, in fact, men who are interested in going to a con that explores a lot of feminist themes.


-The Women in Science and the Skepchick panels were made of amazing. Oh my gosh, I am such a freaking fangirl. Bitch Magazine had a few people there too, so...well, I'm a fangirl, I guess.

-There were so many families there with their kids. And this is really very cool-it's fantastic for the little geeklets to meet each other (and they were oh so cute-all these little kids in costumes, including a Dr Horrible who couldn't have been more than 7). It was also really rad that GGC made a decided effort to be accessible to parents.

-Speaking of kids, an elementary school student asked how to start getting into science now. Right on! And a young girl-I'd estimate age 8-10ish-corrected an adult on the Women of Harry Potter panel about Professor McGonnagal standing up FOR, not AGAINST, Professor Snape. Yeah, that's right, be certain in your knowledge. It's important for kids to challenge adults, I think.

The Bad:

-I got lost repeatedly. There wasn't enough signage for those of us who are directionally impaired.

-I bought a pair of kitty ears from a vendor. They fell apart before I ever got home. I am disappoint. They were super cute, but clearly the antithesis of, y'know, actually functional, even as a decoration.

-As a woman with a disability, I felt pretty damn under-represented on panels and such. If any of the panelists were neurodivergent, they passed pretty well. If there were presenters with any disabilities at all, I didn't see or hear of it. There were probably other under-representation issues as well.

-Some views expressed by a couple panelists were...problematic. This isn't GGC's fault even a little, but I was still kind of shocked to hear a panelist say "well, that's normal and a happy ending and Harry needed a happy ending" when a woman asked what the panel thought about the extraordinarily heterosexist and family makin' ending of the HP series. Also on that panel, stating that "no one deserves that, but if anyone does, it's [Umbridge}" when someone asked how the panel felt about Umbridge being thrown to the centaurs. Yeah, that one almost fell under WTF. Another one actually does.

The WTF:

-I was in the bathroom and a woman who used a wheel chair told off someone who was using the chair-accomodating stall as a changing booth. That's right, make sure she knows. That's awesome. Less awesome? Brain-breakingly awesome? Said chair user had strobey shit on her wheels. Um. Uh. What?

-The Big Problem that nearly ruined Saturday for me: Geek Girls in Popular Culture panel. I was so excited about this panel. It consisted of 4 women and one man, Javier Grillo-Marxuach. Apparently he's done a lot of important work on Lost and The Middleman and Charmed and other shows I've never watched. Whatever. I don't care.
What I care about is that in an unfortunately not-shocking display of privilege abuse and cluelessness, this guy totally dominated a panel about geek girl characters at a con that was supposed to be woman-centric. Fun Fact: INDIANA JONES IS NOT A GEEK GIRL. HE CANNOT BE YOUR FAVORITE GEEK GIRL CHARACTER. IT IS NOT POSSIBLE. If you're going to dominate the damn conversation and talk over the female panelists (including 2 who seemed quite introverted) at least listen to and answer the actual question. Talking about your work on whatever and bringing it back to teh menz is not, in fact, feminist. Even if you can use the word "problematic" correctly in a social justice context, you can, in fact, still be problematic! A transcript color coded to see who said how much on that panel would be interesting, I think.

Overall I freaking loved Geek Girl Con. I will be back. I expect that as GGC grows, it will get better in addition to bigger. I can't wait to see what next year brings.

Friday, October 7, 2011

Geek Girl Con!

I'm actually on a train to Seattle for Geek Girl Con right now. I'm excited because
a) geekery? Duh?
b) they actually have a harrassment policy

Is anyone else from the autismnet going? I'll be there as Faith from Mirror's Edge the first day, and Chun Li the second day (though Chun Li may, like, put on some pants later. Seattle is cold & damp) & it may be fun to meet up with intertrons people.

It'll be interesting to see how this goes; it's the first one.

Monday, October 3, 2011

Some things shift. Some don't.

This is coming from my personal experience writing for TPGA's dialogue series. This is extraordinarily, probably obnoxiously, me-centering rather than autistic community centering. It's not taking posts about the dialogues on other blogs into account even a little. Those other reflections may come later. They may not.

The post I wrote for TPGA is easily the most emotionally taxing thing I have ever written. There are a lot of uncomfortable associations with what I wrote about, and with the stories I decided to not tell yet as well.

I wrote that post with the full expectation that I'd be yelled at, accused of being unempathetic, have my words or meaning misinterpreted and misrepresented, told that I was "lucky" for whyever (because I could get into a Y? I don't know). That's my default assumption when I write, especially when I write for a mostly allistic audience, and even more especially when I am sharing uncomfortable truths. That's frequently what happens-I get yelled at a lot.

Mostly, my self-protective cynicism wasn't necessary, at least not in regards to my post and reactions to it. This is kind of overwhelming really-I'm not totally sure how to handle people being so nice to me. Don't stop or anything; it's a wonderful kind of unsettling to have people say they've got my back. I just don't really know how to deal with it.

A number of lovely people are encouraging a bit of a shift in my cynicism & knee-jerk wariness of autism community people who aren't autistic community people. It's a small shift for now, but what has to be a few hundred people didn't yell at me. I wrote something uncomfortable and difficult and no one yelled at me. This shouldn't be a big thing, but it is. A touch of the tarnish on humanity's reputation with me was wiped away, just a little.

But don't think for a second this means that I am going to change what I write about or how I write it. I know that I say a lot of difficult, uncomfortable things. I know the frustration from being an autistic in an allistic land and the frustration from living some truly hellish times shows. It's still going to. People are going to find things uncomfortable, but you know what?

It needs saying. Discomfort leads to growth. And barring specific triggers (which I do try to put warnings for), you can probably handle it. Many autistic people have dealt with similar things and said similar things to what I have experienced and what I have said. They know it is the way of things, for better or (usually) worse. Allistic people? You need to-yes, need to-know not just the "heartwarming" or "inspiring" or the nonthreateningly insightful or the sanitized autibiography stuff. You need to know the awful, uncomfortable things too. Those things need to be acknowledged to be abolished.

You acknowledged the ugly side of my truths, allistic allies and potential allies. You acknowledged that they're both ugly and truth. I make you uncomfortable not to be mean, but to create a more beautiful truth in the future.