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.

"NO!"

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....

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.

No.

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.