A bunch of stuff that needed saying

The following stuff is important stuff I wrote elsewhere on the net. If some of what I'm saying doesn't make sense, ignore it, it's just context that I'm not able to describe right now. The main thrust of what I'm saying should make sense without understanding the full context of what I wrote. And I can't rewrite it all right now for this blog. So the following is pretty much as I wrote it. Also sorry for all caps in places, it was because where I was writing it I couldn't use other forms of emphasis. And please don't assume that this is all about autism. Everyone always assumes that everything I say is all about autism. It isn't. Most of it isn't. Not even the stuff that talks about autism is all about autism. I am fed up with just about every such assumption because my world isn't made up of only or mainly autistic people and when I talk about things I always get replies saying “This applies to people without autism too” and I want to say “no shit Sherlock, that's what I meant in the firs

This turned into a long post, and it may not apply to the people I’m replying too, but this conversation just brought up a lot of things I’ve been thinking but having trouble saying.

Thank you for writing that. It’s really important.

Also another point I want to make. There are many autistic people whose best method of communication is nonverbal. By which I mean, not speech, not writing. Some of us this is true of, can communicate well by speech or typing also. Some of us can’t. But we usually have trouble with receptive language — either some of the time, all of the time, or especially, during the early formative years of our lives. I’m one such person.

Most people don’t know this because the current theories of autism all involve us being terrible at nonverbal communication. By which people mean, terrible at one specific kind of nonverbal communication that most nonautistic people are good at. Also, most autistic people who can talk about their experiences in words, are (or believe themselves to be) bad at nonverbal communication, and their experiences get seen as applying to all of us, when this is not true.

So for many of us — nonverbal communication, and the world of things outside of words, are our best way of communicating. Whether we can also use words or not. I wrote about one such group of autistic people in my contribution (“Untitled”) to the Loud Hands anthology. Because I want people to know we exist. Because I want other people like me to know they aren’t alone, in an autistic community made up mostly of people who experience themselves as terrible at nonverbal communication. Where people even say that autistic communities are communities where people can use text or other forms of language, rather than having to deal with nonverbal communication. Even though there’s plenty of us who do better in person, BECAUSE we communicate best nonverbally, because words, whether we can do them or not, whether we are or seem good at them or not, are so hard and so difficult and so painful to keep using.

There are entire groups of autistic people out there who communicate with each other using our own unique forms of body language that are different from nonautistic body language, different from other autistic people’s body language, specific to ourselves, specific to each other. Who communicate best reading each others writing, looking for the patterns that exist between the words, rather than inside the words themselves. Who communicate best by exchanging objects, by arranging objects and other things around ourselves in ways that each other can read easier than we can read any form of words. Who share the most intimate forms of communication, outside of words, outside of anything that can be described easily, in between everything, seeing each other to the core of our awareness. Who see layers upon layers of meaning outside of any form of words.

In “Untitled” I was writing about my favorite communication ever, my video chats with AnneC (and her cats, when they show up, which Shadow absolutely loves communicating with me over video and reminds her every Friday at the right time because he loves it so much). I don’t necessarily do the best at visual stuff the way most people think of it. But I can see the patterns of movement in other people, including cats, whether or not I see them well in the usual forms of visual perception. And those patterns of movement tell me more than any word ever could.

I can even read nonautistic people fairly well at times — just not in the ways nonautistic people read each other well. That’s one of the problems with nonautistic research into autistic people’s abilities to understand nonverbal communication. Most of it relies on the understanding and use of words at the same time as understanding the nonverbal communication. And most of it relies on the kinds of nonverbal communication that nonautistic people are most aware of. This frustrates me to no end — how can people research forms of understanding that they don’t themselves have and therefore they don’t themselves understand even exists? I’ve actually told researchers ways they can research autistic people’s understanding of nonverbal communication without having to resort to the faulty methods they usually use.

And one researcher told me, when I asked, that every parent of an autistic child she ever met said that their child picked up easily on things like stress in the household, but that SHE ACTUALLY DISREGARDED IT UNTIL I ASKED HER, BECAUSE SHE’D BEEN TAUGHT THAT AUTISTIC PEOPLE COULDN’T READ BODY LANGUAGE. I’m totally serious. If researchers are that biased themselves, how can they possibly hope to even notice that we can understand things they assume we don’t understand?! I taught that researcher a bunch of very simple ways to test that without relying on the painfully stupid research methods that guarantee researchers will find only what they expect to find — relying on us to use and understand words, relying on our understanding of actors and stage conventions rather than real people’s real nonverbal communication, relying on nonautistic people’s limited ability to read autistic body language, all sorts of other flaws that seem obvious but that researchers themselves seem never to notice. So hopefully she will set up some real experiments that show our real abilities.

Anyway. Back to what I was saying. There’s entire subgroups of autistic people out there _ not just my own — who rely on nonverbal means of understanding the world, and nonverbal means of communication. That’s one reason I usually put myself in my videos — because I know that certain other autistic people will be able to read me like a book, even if nonautistic people usually can’t. And that nonverbal communication is a crucial part of my videos. (See why the entire first half of “In My Language” has no words in it. I was trying to make a point about the best way I communicate, the best way many people communicate, autistic or not, verbal or not. Mostly lost on people, who think it’s a video about autism. It’s not. It’s a video about communication and understanding and personhood, that happens to be made by an autistic person. Big difference. I told CNN why I really made the video, and they left out that part of the interview in favor of putting their words in my mouth. I think my real intent was too political for them.)

Anyway. I may be a writer, but my real best form of communication has nothing to do with words. I use words because I have to. Because most people won’t understand me if I don’t. I don’t use them because I like them, or because I “can’t do nonverbal communication so text is best for me”, or any of the usual reasons most people assume. If I could never use language again, spoken or written, I would be really happy. But the world won’t let me do that, so I carry on using a means of communication that is outright painful for me.

I don’t know the people in the video, but I know that the way their bodies move makes intuitive sense to me and communicates things whether they intend it to be so or not. (The forms of nonverbal communication I understand best are unintentional, in fact. That’s one reason tests using actors don’t work on me. I know an autistic woman who failed a test of nonverbal communication because it used actors and she kept describing their real feelings instead of their acted ones. What this says about nonautistic people’s understanding of nonverbal communication is… interesting.) Whether they are able to use spoken language or not, the video would lose a lot if it only relied on showing them speaking or typing the words.

And I really dislike a lot of the self-advocacy movement for relying mostly on the self-advocacy that happens through words, written or spoken. This leaves out people who can’t do either but who are nonetheless quite capable of advocating for themselves through their actions and movements. If I hadn’t spent a lot of my life forcing myself to do words, I might be such a person, so I am always aware of this. Words are not natural to me the way they are to some autistic people. They’re difficult and my development could have gone either way. There are also people who, no matter how much effort they put in, could never have used or understood words, and they are also extremely important, and they are also capable of self-advocacy, and they are still capable of communication that is more full of meaning than the communication of many people who use words.

I wish there were videos using their communication — which by definition wouldn’t involve words. Both people who would have been able to use words had they put in a crapload of effort at critical times in their development, and people who would never be able to use them no matter what. Such people exist. I sometimes wonder if they are too inconvenient for some autistic people to remember. I hate when people tell parents, “If you just gave your child a communication device they would be able to type words (or use picture symbols) and everything would be solved.” You don’t know that. You just can’t possibly know that. I hear that a lot, this idea that autistic people would all be able to communicate in words if only they were given a means to type them instead of speak them. And it’s so not true that its utterly ridiculous. I hear it both from people whose main way of communicating is speech, and also from people who use typing, and people who use both. It’s wishful thinking and it’s not true. There are people whose understanding of the world is just like a typical “aspie” except they couldn’t speak for motor reasons, and they are the most likely of those who use typing, to believe this myth.

Reality is that there are lots of people who will either never be able to use words, never be able to understand words, or both. Or whose use or understanding is so limited that they will never be able to use words as their primary means of communication. But they do communicate, whether the communication is intentional or not. And they do matter. And they are capable of self-advocacy. And they should be included in self-advocacy movements if those movements ever expect to represent autistic people, developmentally disabled people, cognitively disabled people, disabled people in general, whatever group is trying to represent itself in that movement. And in order to include them, you have to show their movements and their sounds and all the things they do that aren’t words.

It’s true that many people who are thought not to be able to use or understand language, actually are. And it’s terrible that they are overlooked. But in their desire not to overlook such people, many people claim that all disabled people who can’t communicate through speech fall under this umbrella. And that’s simply not true. In order to communicate with people who will never use words, you have to learn their language. (And surprise, that’s one thing that “In My Language” was actually about. And it would be about that whether I used typing or speech to communicate — either one would be my “second language”, and as such I can easily, easily envision a situation where I never learned and never would learn to use speech or typing, both of which I used at different points in my life.) And each person has one. Sometimes several people have a language that is in common but is not words. Sometimes each one has a separate way of communicating that is not words. But either way, you have to learn how they communicate, not force them to either communicate how you best communicate, or else be considered “non-communicative” for the rest of their life. And yes it’s possible to get consent to use their communication, it’s just sometimes harder work than asking a yes or no question in words.

And a community that doesn’t include such people isn’t my community. The developmental disability community is far better at including such people than the autistic community is, even though not all of the DD community manages it either. One reason I’ve spent a lot of time communicating with people who can’t use words in any form is because I’ve been in the developmental disability system for pretty much my entire adult life and have spent a lot of time with a wide variety of people. And I’ve spent a lot of time communicating with people who can’t and may never use speech or typing or even picture boards. And that’s something that certain segments of the autistic community are sorely missing. Even parts of the autistic community that involve people who don’t use speech, are often made up of only those people who were able to learn typing, and often put forth the (false) idea that everyone could learn typing if only they tried hard enough or were exposed to the proper teaching methods.

The response someone made is true: Some of the people in the video use typing, so they could never be shown speaking the words in the video. But I’d like to go further than people who use speech and people who use typing, because unlike a lot of people, my social world is made up of a lot of people who can’t do either one. And also made up of a lot of people who, even if they can use speech, typing, or both, those are not their best means of communication, and it would be better to show us using our best means of communication rather than merely the form of using words. Not everyone has words but everyone has a voice and a means of communicating. And not everyone who uses words sees words as their primary voice or their primary means of understanding things, and that needs to be respected. And I’m sick to death of spending time in communities where most people seem to miss these facts, and automatically see having a voice as the same as using speech or at least using language.

Posted with Blogsy

“I don’t know that person’s program.”

That's a sentence I've heard a lot. And when they don't say exactly that, they say things that mean the same thing. Usually in the developmental disability system, for some reason, although I can easily imagine it in other contexts.

What it really means:

“DD people aren't like regular people. When people do things to them that would be horrible if they happened to other people, there's always a logical reason that justifies whatever is happening. Staff and case managers rarely if ever abuse power. All of their decisions have the best interests of clients at heart. So if something looks terrible, chances are that there's a reasonable explanation behind it. I just don't know what that explanation is. And I likely never will, so I'm not going to judge.”

They say this when staff scream at an old woman with an unsteady gait every time she falls, and refuse to help her get back up or allow her to hold onto things for balance.

They say this when staff publicly humiliate a man who clearly has trouble moving to avoid obstacles, when he accidentally bumps into someone.

They say this when staff do their best to keep a boyfriend and girlfriend apart. Or when staff are okay with boyfriend and girlfriend, but balk at the idea that two women with intellectual disabilities have fallen in love. As if it's even their job to decide who can love who.

They say this when parents simultaneously put on a big public show of wishing their son could move out on his own like he wants to, but sabotage his every attempt to do so. Because they had planned out a whole life for him in the group home they run, and can't handle the idea that he doesn't want to live under their control the rest of his life.

They say this when a staff person kisses a grown man's leg and says “I kiss you boo boo aww betta!” in baby talk.

They say this when, in the name of integration, staff prohibit disabled people from speaking or socializing with each other. I just saw an instance of that last one, which is why I finally remembered to write a post on the matter.

They say this when we get outright tortured. Tied down. Skin shocked. Slapped. Pinched. Made to smell ammonia.

I wish I could upload the scenes from real life that play out vividly in my head. But like as not, people likely to say these things wouldn't consider me a reliable observer. They never do, when you start pointing out the truth. When you see yourselves as people. With all that this means.

Suddenly you are either too severely disabled to understand what's happening, or you're not disabled enough to grasp why treating people like dirt is necessary. Or both at once. And they'd much rather you were highly submissive, maybe even the really cool type of client who helps staff out by giving them information about other clients.

All of this requires seeing DD people as less than. It just has to. There is no other way to justify these actions towards us.

And I know how people see us. As in, I know what we look like inside their minds. Sometimes we're human — almost, anyway. Not quite. There's something vitally important inside every real human. And to them, we either don't have it, or are missing large chunks of it. So we go around in human bodies but there's pieces missing in our minds and our souls. Even people who don't believe in souls in any religious sense, still perceive something inside us as only partial.

I know this because this is one of those viewpoints that isn't content to stay in the minds of others. It tries to force its way as deeply into us as it can manage. Until many of us look in the mirror and see only part of a person.

I can't describe the violence that involves. It's horrible. And a whole system of relating to us, forces its way into our lives. It tells us that we are taken care of, that we can relax, go to sleep, almost. And then it suffocates from inside. There's no words for it.

I suspect the drive to say this about people comes from several places at once.

If you work in the system, there's not wanting to see yourself or your coworkers or people who could be you, doing something horribly wrong. Much less on a regular basis.

I also suspect a strong desire to trust the society they live in, not to do horrible things to people. Or at least, not to do horrible things to certain kinds of people.

A member of my family once told me that it took him a long time to believe what happened to me in mental institutions. He said that in order to come to terms with the reality of the abuse, he had to destroy a strong desire to believe that the society he lived in was safe and just. Him telling me that was far more honest than a lot of people are.

That desire to trust society gets in the way of understanding every kind of injustice. I am amazed that people trust a society that does its best to shut out and destroy all but a handful of people. But they do.

And not seeing us as quite exactly people, is the one thing that you can't avoid if you think like this. Because if you see us as people, you have to see what happens to us as dreadful. And you don't immediately, upon being told of the latest awful thing, say any variant on “I don't know that person's program.”

Posted with Blogsy

Making everything clear.

[Well not everything. I hope to write more posts going into detail on this topic. But this is the most general one I mean to make.]

I am not part of the Internet “social justice” community.

I am not part of the Internet “anti-SJ” community.

Both communities have, at different times, tried to claim me. At different times, I have joined in with both, knowingly and unknowingly.

But I can't be in either. Because they are both part of a larger pattern that does great harm.

Each one contains people who are there for sincere reasons. And also people who use these communities to play with power in devastating ways. But the way these communities work, even people's best intentions get turned around until they range from ineffective to destructive. I'm only going to be talking about people who join in for good reasons, because it's already obvious that manipulative power trippers and trolls are bad news, whether they're cloaking themselves in fake good intentions or not.

I can't be there. Not because I think I'm better than the very good people I know who are involved in both. Not because I don't care what is happening. I can't be there because I see what is happening, and if I join in, I will only be joining in with destruction.

I see what is trying to pull me in. I will not be pulled in. I will stand next to and apart from these communities. I will not fight against them, or, like Devil's Snare, they will only pull me in tighter.

The pattern works kind of like this: There is a monster. That monster runs around trying to devour everything in sight. When it can find nothing else to devour, it devours itself.

The whole thing is set up in a way where the only way to move forward is to find something to oppose and devour. There is never a point where the way you do things is good enough. You have to find more and more words and ideas to oppose. Words and ideas that mark who is in the know, and who is bad. These things constantly change. The monster never stops looking for more.

People are judged by how well they can keep up and remember these things. Even when people say it's a bad idea to just memorize everything by rote, that's what most people are actually doing, because that's what this culture encourages. Pretty soon, most people fall into a pattern of dodging and weaving, trying to say the right things, not say the wrong things. And above all not admitting it, because this culture simultaneously encourages this kind of behavior, and says you're wrong if you behave this way.

Within this culture, you stop noticing your surroundings. Instead, you see a network of lines representing various power dynamics, bad words and ideas, good words and ideas, and the way this community responds to them. You stop being able to see that this is not the only way to respond to injustice.

When people start noticing what is wrong, and wanting out, things twist around until they are absorbed into a different part of the same pattern. They fill the part of the monster that, in the absence of anything else to eat, turns around and begins devouring itself. And so people become part of the same thing they wanted to stop. And the fight between these two communities goes around and around forever, providing infinite food for the monster.

In this way, the pattern tries to pull in those of us who try and talk about it. It sucks people in until before they know what is happening, they are part of it. Few people intend to be sucked into either part of the pattern. People mean well, and are not stupid. But this is a whole pattern of connections between people, set up to perpetuate itself. And that pattern ends up hurting both the people caught up in it, and people outside of it, through the actions it encourages people to take.

It feeds on opposition of all kinds. It even makes things work so in the end, the only conversations that take place are arguments against this or that person, this or that action, this or that thing.

Which is why I will stand outside the pattern. I will describe the pattern. I will encourage more people to step outside of it.

But I will not set myself up in opposition to it, or else I will just be pulled in and become part of it. So I am outside of both pieces of the pattern, but I will not fight them.

And I will remind people, there is a huge world out here. There are other ways to do things. Not just my way, either. Lots of ways. You will always be welcome to step outside, to join me and many other people who live out here.

And, together or apart, we can find other ways to make a difference in the world.

[With credit to a friend of mine, who first characterized the pattern we were watching in terms of the self-devouring monster.]

Posted with Blogsy

Breaking out of sheer monotony.

For the next disability blog carnival, with a theme of “breaking out” (but not in rashes) (hosted by Andrea of Andrea’s Buzzing About, I was going to write something all about the fairy tales people tell themselves in their heads about disabled people. I was going to talk about the fact that when you’re not one fairy tale, they go “Oooh, so you’re this other fairy tale then.” And of course the consequences of not living up to other people’s fairy-tale versions of disability, or of being some weird hybrid of them that nobody expects.

However, I’ve been ill lately, and that’s made it difficult to write about that particular thing, but necessary to break out of something entirely different. A strange, monotonously repetitive mindset that seems to go along with some levels of pain and weakness.

It goes something like this (translated into words, of course):

• Hmm, there is something I think I might want to be saying or doing right now.
• That means I have to translate it into the right words or actions.
• So here I go, translating.
• I need to connect to my body more in order to do all this. Right now, my mind is sort of floating off and detaching to try to deal with this.
• Okay, there’s the body, that’s what I’ve got to figure out before I can type or otherwise move.
• YEEEEEEEEEEEOOOOOOWWWWWWWCH.
• Okay, need to find a way to deal with the pain.
• Brain is floating off and disconnecting again.
• Thoughts are turning into all these little wispy fragments again.
• Got to try to make at least some sense out of what’s going on, because it’s purely miserable otherwise.
• Hmm, there’s something I might want to do or say…

Only, repeat it. And repeat it. And repeat it. And repeat it.

Until it turns into, not a bunch of separate things occurring in a particular order like I describe above, but a whole rhythm of experiences where different things sort of pulsate in and out of awareness in a regular pattern, and the whole thing is covered over, no matter which part is going on at that moment, by feeling really, really lousy and ill. And it gets mostly tedious and monotonous, of all things, because the rhythm sticks in my brain even if memory of what’s going on keeps sliding out of it.

And I’m not really talking about anything minor, either. Even before I realized anything was up, people were telling me I looked really crappy. At the worst of it, someone called 911, and the paramedics tried to test my level of alertness by pressing as hard as they could on a nerve that was near the surface and already irritated. I felt the pain, but failed the test completely because I couldn’t do anything other than stay limp. (Which might be good in a way, because normally if someone inflicted that much pain on me I’d fight back.) The whole lack of response == lack of awareness idea is one that really bugs me, although I know there’s some kind of protocol that requires the whole pain-infliction routine.

At any rate, even when things haven’t been that bad, things haven’t been the best circumstances for a long, eloquent post on disability stereotyping either.

So instead of the post I was after about breaking out of stereotypes, you get this one, where I get to attempt to break out of the rhythmic monotony of thoughts being thwarted by pain and exhaustion. Please try to avoid those pesky stereotypes while reading this, though; they get old.

There are a few reasons I made this post:

One is what I said, to break out of the monotony. Not that this is the only time I’ve done so (the repeating-thing seems to come and go), but it’s one time. And even lying around not doing much gets a bit old even when I am doing better than before.

Another is just in case it describes an experience that someone else might’ve had but had trouble describing. Because that’s something that’s often important to me. It took a lot of work to ask someone if this was common, and it turns out it’s a pretty common response to pain and illness in general if it’s bad enough. I’ve experienced it before, but of course at the time when I’m experiencing it, I don’t usually have the capacity to remember any other time, nor to imagine it stopping or anything changing in the future. It’s only in retrospect I can put it in any kind of perspective, because at the time my already-tenuous grasp on time is, to put it mildly, not there anymore.

And the third reason is that I can now at least post the thought that most commonly leaps to mind during the phase when there’s something I want to communicate that ends up getting cut off before I can say anything. It’s something that goes, as well, for every other time I either can’t think or move in standard enough ways to generate responses other people understand. It translates best as, “Please remember I’m a person.”

So maybe my inability to post what I was intending to, isn’t so bad after all.