Conflicted Emotions.

This is what I wrote down trying to process my feelings & thoughts after learning of my mother's death. It's all very jumbly & confusing

So this weekend my mother died, & I'm not sure how I feel or how I'm supposed to feel or really anything. Those of you who know me know that I've not had a relationship with my mom for years, but that doesn't prevent the emotional confusion.

The last thing my mother said to me was "get a real job or die on the street." I was extremely, obviously ill at the time, & that was what she had to say. She had spent the previous several years hurting my physically-I have dents in my skull that I was not born with-and verbally abusing me and justifying her husband's abuse of me. So, if that is my mother, if that is who she is, then how I feel right now is probably appropriate and normal. Mourning one's abuser and tormentor isn't something that is reasonable to expect of anyone. Numbness, if not outright relief, is a reasonable thing to expect.

But my mother wasn't always like that. When I was young, she fought for my intelligence and capabilities to be recognized. When I was being tormented at school by teachers and students alike, she logged many many hours talking to teachers and parents of other kids in my classes. I've been having roughly identical "WHY IS EVERYTHING SO DAMN DIFFICULT?!?!?" meltdowns since I was about seven years old. When I was little she'd squish me tight, stroke my hair, & say "I don't know, punkin. I just don't know." She didn't understand me by any stretch of the imagination, but the mom I had when I was little sure tried. She made mistakes, as do all parents, some of them pretty huge, as with all parents, but the mom I had when I was little was doing everything in her power to do what was best for me.

And that's what makes this so complex & difficult. The mother of Little K was a woman worth mourning. The mother of Adult K was scary & upredictable & abusive, and not ever dealing with her again is a relief. But I had it in my head that Little K's mom could be somehow revived.

That's probably not the case though. Little K's mom died a long time ago, I think, even though her body never went anywhere. I think I knew that and did my mourning and mental burying a long time ago. The scary person occupying her body is not the mother I could once depend on to always be on my side, even when she didn't understand why that was my side.

So being numb is probably ok. I think I came to terms with my mother's death years ago and just hadn't thought of it that way. Feeling guilty about being numb, probably also ok, but not necessary. Or something. I don't know.

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.

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.

Body policing & erasure & such

-Yes, I realize I have some thin privilege. That doesn't stop what specifically I am writing about from bothering me.-

There's no good way for me to start this. So I'm just going to start throwing words out there and it'll sort of maybe make sense.

One of the big slogans, for lack of a better word, that I've heard a lot of in reaction to the predominant unrealistic female body type seen in the media is "real women have curves!".

By that measure, I am not a real woman. That measure excludes many many women. Many athletic women aren't particularly curvy. Many trans women aren't particularly curvy. A lot of women of all sizes are, in fact, not particularly curvy. It's body policing to exclude even one of these groups of women from the category "real women". Those skinny models who it's fun to hate on? ALSO WOMEN.

This is something that has bothered me for a while, because, well, I am a woman and I have no curves. I wasn't going to say anything about it until a website that seeks to have photos of women of "all" body types came to my attention.

"All" body types includes:
-banana (straight up and down, shoulders and hips and waist all pretty much the same width).
-pear (wider hips than shoulders)
-apple (widest in the middle)
-hourglass (I'm gunna go on a limb and assume you know what that is)

According to their classification of "all" female body types, I don't have one. I'm much wider at the shoulders than the hips, & pretty much straight up and down from the armpits on down. There's no cute fruit name assigned to that. I know quite a few grown women who are shaped like me, and a lot of growing young women who are going to be shaped like me. As a teenager and young adult, some of the adults in my life joked that I was built like a very tiny man, but I was under the impression they were kidding.

So there's a whole visceral "well that sucks, yet another way women who happen to be me don't exist". But there's also the whole thing where body acceptance isn't a zero-sum game. Or shouldn't be.

We shouldn't police women for having the "wrong" shape or size in any direction. I wouldn't dream of saying something hateful about someone larger or rounder than me, but when in the name of empowerment someone (a real someone, not a strawwoman) yells at me to eat a fucking cheeseburger or calls me anorexic or pinches me somewhere not soft (pretty much anywhere) and proclaims that real women have curves...well, I don't see how that's empowering. Disempowering someone else isn't how empowerment works.

(and that isn't even getting into how being a disabled woman intersects with this, or how accusing someone of anorexia maliciously is ableist bullshit, or a lot of other things).

"What Would Meeting You Halfway Be?"

My friend asked me this after class with an "aware" teacher. And I was flabbergasted.

I have no answer to that question. I don't even have the shape of an answer, much less words, a description.

Meeting us halfway just isn't done. No one considers it as an option. It's a tidbit of ableism that is so entrenched that I never considered it; autistics do all the work is just how it is. We give 95%, everyone else complains about the 3% they grudgingly give & then they demand that we meet them halfway-because 97% is the new half.

It never occurred to me that they are fully capable of giving more. I don't know why, just that they don't. A communication problem must have at least 2 sides, yet "I have a communication disorder, so this is my problem" is the way it is. It's how it has always been. It's how things will continue to be for the forseeable future.

I still don't have an answer to my friend's query. I guess part of meeting me halfway would be ditching preconcieved notions that I can (or cannot) do something based on my skill-or lack thereof-in another area. Part is not assuming or using communication between the lines. Take stims as they are. Take me as I am-everything I do has a reason, but fretting about that odd thing I do isn't meeting me halfway; it is othering. Don't other me.

But really, I do not have an answer. I could not tell anyone how to meet me truly in the middle. I don't know what it feels like. If it's like my social experiences at conferences, it's both a freeing level of acceptance and something the NT majority will never achieve in my lifetime. It's not something they can or will do.

I don't know where halfway is, and I quite likely never will. There, I guess, is the answer.

First Responders & Me.

One of the topic suggestions I was given was "how to handle any paramedics or police officers who should happen to arrive during a seizure". This is very much a my-preferences entry. Other people will have different protocols. Some of them may even involve not being terrified of first responders and law enforcement and hospitals.

Let's say it's a partial complex seizure, since even the police officers who stop me for Walking While Autistic can manage to not fuck up too badly in face of a generalized tonic clonic. I hope.

So you're walking down the street with me and my eyes go all vacant and I'm doing the hand thing and all I can say is "I dunno". You're not letting me walk into the street, and I appreciate that. You're calm and not making sudden movements or touching me suddenly and anything like that. Then, a wild police officer appears!

He probably addresses me and asks if I'm alright. Assuming he isn't so aggressive I turn and run, the answer will be "I dunno". That's where things get bad for me really quickly. That's when his (or her, but all the ones who stop me for WWA seem to be male, hence the pronoun) cop reflex jumps from 'different' to 'seriously fucked up'.

The single best thing someone can do for me at this point is to tell the officer that I have epilepsy, this is a seizure, everything will be fine as long as no one gets in my face, thank you for your concern. If you can make him go away, so much the better, but I don't know how to make that happen. Getting in my face-which law enforcement officers DO-is just asking for a bad situation. Under no circumstances let him get in my face or touch me. The self preservation reflexes that are still active are the kind of things that get people tazed. I carry identification that say I have epilepsy for a reason, and this is one of them.

Now let's say the cop happens across us walking down the street when I'm postictal. I'm kind of surprised this hasn't happened already, since there comes a point that I am bone-tired but have access to almost-coherent speech. If I don't want to walk, or am disoriented and afraid to walk, I'll whine and that's a whole bag of "that doesn't look right". Tell them that I have epilepsy, I am recovering from a seizure, and I'm probably still pretty disoriented. I don't know if I'd actually talk to them or not at that point, and if I just had a seizure I can only sign (and am probably not so OK with the walking at a normal rate thing. And will pretty certainly flip my shit if someone I don't know gets in my face. Especially if they do so aggressively). I can register that my bracelet may be useful post-seizure, but for some reason officers of the law aren't willing to read them in my experience. If you can get them to understand that yelling at me isn't going to do anything but cause problems, please, please do. Being aggressive doesn't cure epilepsy.

Or. Let's say for some reason a wild paramedic appears! If they have an ambulance, they need to turn that shit off. I have a visceral hatred of loud sirens and of flashing lights, & she's going to have to suck it up and deal. I didn't want them there anyway. I. Do. Not. Want. An. Ambulance. I am not on drugs. I take my medications religiously. I do not like being touched at tickle-pressure, or at all by strangers. Even if I'm still out of it, any poking and prodding she insists on doing, she's going to have to move slowly, explain everything, and keep everything where I can see it. I probably will be uncooperative and resistant or completely passive because I want her to fuck off. If you can get a good samaratin wannabe paramedic to go away, you're my hero.

The generic themes here are get them to go away, I do not want to go to the hospital, their flashy lights can go play in a fire, and I am very particular about how I accept being touched, especially after or during a seizure, and they will do it wrong. Everything goes much more smoothly if intrusive, aggressive people who I don't know just aren't around me-hence my hatred of hospitals. There are too many ways for them to fuck up, and that has lead too many people into injurious or fatal situations. If I'm going to be a statistic, I'm going to be a living statistic, thanks anyway.