I’ve noticed a few things where I know what I’m seeing but I’m not sure quite what to call it.
I keep coming back to the reactions to “In My Language” (which, remember, I didn’t know would get more than a few people even viewing it, I expected no wider an audience than any of my other videos). As I’ve said countless times before,, I made it in response to the dehumanization of a girl with severe cerebral palsy. I made it to address a problem that affects not only autistic people or other disabled people, but also anyone whose language is considered lesser than the dominant language. Among autistic people, I did not mean it to be specifically about non-speaking auties, but about all auties whose communication and interaction is not recognized unless we speak what is essentially a foreign language to us — no matter how well or how poorly, or in what manner, we speak that foreign language. Language was after all at least as foreign to me, if not more so, when I spoke, and my communication through music, art, and my natural interactions with my surroundings was largely ignored and ridiculed at least as badly then as now. It was also about people, autistic and non-autistic, whose way of thinking is so different that it becomes regarded as not really thought at all, and the people thinking that way ending up thrown away and discarded as defective, “crazy”, or “vegetables”, or even “not having personhood”. And it’s about the focus on particular dominant kinds of thought and language as the only real ones or the only desirable ones, and everyone who differs, biologically or culturally, becoming automatically inferior.
That’s a pretty wide scope, and covers a lot of things that a lot of people don’t want to have to think about, or find difficult to think about.
Maybe that’s why it’s been packaged as “non-verbal autistic woman lets us into her world”, despite my constant protestations both in the video and out of it, that it’s not about that. It’s not about one individual person, it’s about a broader set of issues. It would be like saying that because I’m a woman then what I have to say only applies to women.
But if all I am doing is talking about my experience as an autistic person, then that’s all anyone has to take out of it. They don’t have to change or acknowledge much of anything, and if they do acknowledge anything, they will be acknowledging it about as narrow a group as possible. If not only me, then only me and other people who share a particular trait or two in common with me. No wider context need be looked at, the context has all been jettisoned already with the packaging of this as merely an individual story.
Something similar happens with the psychologizing of self-advocacy. Instead of being about people noticing and trying to correct injustices in the world around us, it becomes about people being driven by specific internal and individual psychological forces to doing this kind of thing. It again becomes really easy to dismiss what someone is actually advocating for, if you can turn it around and make it all about them, their supposed desire for attention or self-aggrandizement or whatever. I’ve seen these accusations leveled not only against me but against Larry Arnold, Donna Williams, Michelle Dawson, Temple Grandin, and nearly any other autie who’s received any degree of media attention, no matter what our true reasons for it (or whether we’ve even sought it out, or for what reasons we’ve sought it out if we have sought it out). Whether people agree with me or Larry or Donna or Michelle or Temple or any other autie is irrelevant, the problem is that gossip-fodder becomes more important to people than the substance of what any of us are saying, doing, or trying to accomplish. If you focus constantly upon our psychological motivations you can ignore the injustices that each one of us tries to bring to light.
The same thing, by the way, happens to autistic people who end up using some more direct and violent methods of asserting their rights or personhood. People who self-injure or attack other people or destroy property are said to merely be acting on pathological behavior, possibly entirely biological (mine was once blamed on “septal rage syndrome”, another time blamed on poor functioning of my prefrontal cortex), certainly tied to the “pathology” of being autistic in and of itself, and the idea that we might be reacting to real injustices the same way anyone else might when put in our position, is ignored entirely. I knew a girl who tried to pull the (abusive) staff off of me in a mental institution and all they did was regard her as manic and psychotic. Another girl had organized ward rebellions in a different mental institution and gotten the label of borderline personality for her efforts. And I went to school with an autistic girl who’d been labeled oppositional-defiant for organizing a protest at her previous and highly abusive school. This is not to say violence is the best way of handling these problems (or else I would still be handling problems this way, which I don’t), but you can’t divorce it from the situation and act like it’s just an individual pathology borne of mysterious internal forces. Or just people who have the supposed character trait of just being “angry” or “unable to let go of the past” or some other nonsense of that nature.
All of this psychologizing conveniently (whether intended or not) draws on the stereotype of autistic people as fundamentally selfish, self-contained, and self-centered (after all, autism literally means “selfism”). Never mind that some of the most selfless people I’ve known have been autistic (not that we have a corner on that or special powers in this regard or anything). Never mind that most autistic people I know are caring and empathetic about people besides ourselves, or else we wouldn’t be doing the advocacy work, whether in public or behind the scenes, that we’re always doing. We are supposed to do things only for the fulfillment of internal, psychological desires and needs. And we are supposed to stay in the role of only speaking about our own situations.
This ties into our role as self-narrating zoo exhibits and nothing more than that. I have a friend who rarely even reveals herself as autistic for fear that she will be asked to either tell her life story or educate parents, and be regarded as selfish and not fulfilling her natural role in society if she doesn’t do these things (and I’ve been told not only those things, but that as an autistic person I have no right to privacy and that if I believe in privacy then I must not be autistic!). When I say things like this, people think I’m against educating people about what it’s like to be autistic. I’m not, at all, or I wouldn’t do it so often. But it needs to be on our terms. Our lives are not textbooks for other people to pry open and read as they see fit. People have no intrinsic right to our lives and our self-dissections. For them to alternately insist, threaten, flatter, and wheedle us to give up those things to them is a problem, no matter how pure they think their motivations are. And anyone who does that should be aware that we can usually recognize the flattery and wheedling a mile away.
It’s also clear something’s wrong from what happens when we step out of that role. Telling our stories is not a particular threat to anyone’s sense of security, except those few who still want badly to believe that autistic people are by nature incapable of doing so. Actively stating ethical ideas (such as when I commented about the problems inherent in the idea of mental age) does step on some people’s toes, especially people who’re wrapped up in seeing themselves as “the good guys” and their idea of “goodness” being wrapped up in never doing anything wrong that one might have to change. Autistic people aren’t supposed to step on people’s toes. And when we do, what we have to say is psychologized, and it goes back to us supposedly being mean people who hate parents. If we’re mean people who hate parents (as someone will inevitably proclaim whenever we start talking ethics), then nobody has to listen to the substance of what we’ve got to say. And if we’re entirely self-narrating zoo exhibits, then the only substance of what we have to say is in the facts of how we function and nobody has to necessarily change their ethical behavior on that basis.
So what psychologizing our advocacy work, confining us to a role as self-narrating zoo exhibits, utilizing every disability stereotype possible, and confining our ethical statements to being “only about one person” or “only about autistic people” or “only about one kind of autistic people” or “letting people into our world of autism,” all have in common, is that they conveniently shrink the influence of our ideas and actions down to as few people as possible. It’s a way of missing the absolute most substantial aspects of what we have to say. If you read everything we write in terms of either our individual and psychological motivations or us “telling our own stories,” you never have to think that hard. And I think some people are doing this by accident, but for others (particularly those who know full well what’s at stake if people listen to us) it’s a very deliberate way of not listening to us, shrinking us down to size, and keeping us in our place.
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I always presumed that your threads were written to draw people’s attentions to whatever you were writing about, rather than thinking they had to apply to you and you alone. You give enough outside references (eg accounts by other people, examples of things that haven’t happened to you) that I thought it was clear you weren’t just writing about yourself. Though obviously sometimes you are writing about yourself, but it’s made pretty clear, eg you’ll say you did something.
Generally speaking, any time you “hit a nerve” with something the “Powers That Be” try to come up with some “excuse” to make it somehow invalid. I wrote more on the subject here.
I wouldn’t know about other people’s reactions to your video In My Language, but everyone I have shown it to is stunned. They gape and flounder for a bit, and then of course they think of my daughter who is non-verbal and apparently retarded. If they have had any interaction with her, they look back and try to think if they were respectful to her or not. Our household has done a lot of introspection because of that video.
Oh, and as long as I am typing to you, I think you would make a good professor teaching human rights. Maybe your health would not allow you to do it full-time, but you would be great as a guest speaker in such classes. I would love to be in such a class and listening to your computer read lecture. You are good at making people think.
We get “thank you for letting us into the world of you and people like you” every once in awhile at the community we moderate. Like we only run it just so people can put stuff on display for singlets or something?
Reading one post by us, or even an explanation of how we work, does not mean that we have “let you into our world.” For one, there’s no letting in to do. We are in the same world that you are. We didn’t go anywhere else. If you’re talking about letting people into our personal world and subjective experiences, wow, people are amazingly self-flattering if they think that we’re splashing it out there every time we post. We don’t talk a whole lot about our personal life on the community. And yet somehow we still get included globally in some group of people who are to be praised for having made some kind of conscious choice to “let others into our world.”
Yeah. That’s the other thing. I don’t talk a lot about my personal life online either. I mostly (with a few exceptions) talk about:
1) Political and ethical ideas.
2) Some degree of mechanics-of-how-I-work stuff (which is a choice when and how I do it, I react badly to pressure or coercion in that regard — one large reason I still do it is because other autistic people might find it useful).
I have started talking a little more about my interests than I used to (I actually keep some of my special interests secret so that I can have some things that are just for me and/or my friends) and other personal things. But really the vast majority of what I do in my personal life is not online, for good reason. What I do online is public, and it’s a form of work, and because of that there’s a lot I don’t talk about here, any more than most people bring their entire personal lives to work.
Of course, I might have an idiosyncratic definition of what’s personal and what isn’t, but I still have one, and I don’t cross that boundary often for a reason.
People who self-injure or attack other people or destroy property are said to merely be acting on pathological behavior, possibly entirely biological
Oh, um, yussyuss. Have experienced that. :\ Somewhere in the middle of the post we’re working on about why we don’t fit the “self-diagnosed trendy aspie” stereotype (and it is really sad that we should have to make a post like that at all or that people would have to see this from us before believing or listening to us, and we acknowledged right in the introduction to it that it was, but if people will just keep using the stereotype against us and others unless we detail all this shit from our childhood and teenage years that we’d have preferred not to tell– well, we figured that if it even just saved one autistic person from being harmed or disbelieved, we’d go ahead and do it) — well, somewhere in the middle of that post, we talked about the fact that, yes, we do scream and bang our head, and do various other things that are considered self-injurious behavior. We don’t do this because we have some inexplicable autism-related biological imperative to start hitting our head, it’s because we get into painful and frustrating situations and can’t always find other ways of dealing with things, but most of these situations would not exist if society were designed around people who worked the way we did.
But parents go on attributing that to “autism,” and think they can say things like “I love my child but I hate the autism. The autism is what makes him/her bang her head,” or, when they see a video of an autistic kid being happy, come in and say “You need to show them screaming and banging their head so people can see the REALITY OF AUTISM.” If we could get any video equipment, we’re this close to letting somebody film us having a meltdown and intersperse it with footage of us playing with cats, hiking, studying rocks, doing other things we enjoy, etc, because apparently there’s some zero-sum game going on in people’s minds where you either scream and bang your head and your life is horrible and hellish at all times or you can have moments when you completely enjoy everything you’re doing. We are not more real or more autistic when having a meltdown than when we are enjoying doing something we like.
But… yeah, just seen way, way too much of, when certain kinds of people self-injure or are violent towards others, they have that blamed on their “illness” or “condition” and not ever on anger or frustration that would ever be, you know, understandable. One of the reasons we *avoid* self-injury communities is because we have seen too damn many where people basically end up glorifying it instead of finding ways to not do it (similar to “eating disorder support” groups that basically turn into contests about who can starve themselves the most). We’ve seen people take pictures of their injuries and write poems in praise of razor blades and cutting themselves. But for the most part the people doing this are all “normal teenagers.” No matter what diagnosis they have, people still give them agency for being able to make the choice to do it, and don’t claim that the reason they do it is because of some inherent mysterious feature of autism or dissociation or whatever, and so “this is why we should cure blah blah blah.”
And oh yeah, violence towards others too. Another thing I’ve seen is that people act like you’ve basically thrown out all your right to say you were abused, if you ever fought back, particularly if you fought back in ways that actually injured the person attacking you and/or got them to stop it for the time being. And particularly if you ever attacked them first, even if just because you were basically immersed in an environment where such things were treated as normal and had gotten down to the point where it had become obvious that that was a more effective form of communication than words. It’s like, to ever claim you were abused, you have to not only have never been in any situation where you were not the victim, but never even attempted to fight back or succeeded in doing so, and never have lashed out at the person who abused you in any non-physical way either, because that means you “invited it” and therefore somehow had complete control over every aspect of the entire situation, or that if you ever fought back or lashed out at them it “couldn’t possibly have been that bad.” And therefore you deserve no sympathy, needed/deserved no protection, invited it yourself, etc etc.
What you just posted reminded me of something. I wonder if there’s a way to get video equipment, or other artistic/communication-type equipment, to autistic people who could use it.
Typing is only one form of communication, and one of the reasons I started doing video was because the way I interact with objects and sounds and things around me is a major part of what I consider communication, and the words are just one small part of it.
And a lot of autistic people have trouble affording the supplies for this sort of thing. I had several people buy me a camcorder (not a super-expensive camcorder, but outside my pretty limited price range) after I was on CNN, but it shouldn’t take getting on CNN to get video equipment for people who could use it for communication purposes. (Prior to that I was splicing together things from a thing that only did a little less than 1.5-minute recordings.)
And… yeah, I wish there was some way to get you and anyone else who wanted one the equipment to do this stuff, because there need to be more of us doing it. And your video idea sounds really cool.
(One of the things I want to capture on video sometime is the experience of people who are able to hide some amount of stims/tics/etc before being in private. I’ve found that the video camera, if left on, does not trigger my “don’t tic” reflexes the same way being around people does. Normally I only tic around people some days and not others, and especially if I’m tired or overloaded. Sometimes that results in going into private and ticcing up a storm afterwards though. And I think a lot of people who only see autistic/some-kinds-of-Tourettic people in public don’t realize the amount of energy it takes to even unconsciously suppress this stuff, or that some people who appear to do some of these things a lot, do them a lot more in private. I know some are the opposite, too. I’ve also wanted to show how sometimes the presence of people totally incapacitates me, and other times it makes me more able to do things, switching between the two for reasons I don’t totally understand. Like sometimes I have to get someone to leave the room so I can eat breakfast, and other times I can’t eat breakfast until they come into the room.)
Amanda,
I wonder if your video equipment distribution idea might also be a helpful communication aid for autistic people who prefer to talk, at least some of the time, but who get overloaded easily if a person is actually in the room with them at the time. So instead of saying things directly to another person, they could tape it instead and play the tape later.
Maybe also helpful for people who tend to do a lot of scripted speech that has little to do with what they actually want to say — if they tape it and find themselves saying scripted words that don’t match the meaning in their head then they can go back and tape over that part (or with more sophisticated editing equipment, edit it out).
Don’t know if any of the above would make sense for autistic people who prefer non-verbal approaches to communication. (Or for verbal approaches, for that matter.)
Currently, I have made my fer_de_lancette journal completely priavte as i have been on interaction overload but I do have some archives open on katojikuta.
My main goal for so many years has been to allow myself to be seen. I handle it for awhile quite nicely I must say until I hit the overload point and withdraw which I did with my fer_de_lancette journal just yesterday.
I would like to make a comment about an issue that I have been dealing with in the past days that directly relates to the title of this post. Shrinking us down.
There is a perception of those who are in the health profession that because I am melted down, have completely lost my cognitive ability, speech, or linear thinking ability thus leading to shutdown, that I do not know myself or what I need. They believe they know better.
This makes me very angry and frustrated.
First, I would have to use tremendous amounts of my personal energy to explain to them that I have been living with myself, by myself from the beginning of recorded memory and there is no other person qualified to know me and what I need. When I say such and such person/situation is not good for me or helping me,(which is claiming boundaries which I stopped doing and now have been informed I must reclaim in order to be health) it is not acceptable for a Doctor who has met me twice to say otherwise. It is immediately presumed that there is something inherently wrong with my self perception.
Second, I would really have to care enough to put forth this energy and mostly when I am in crisis ALL my energy s focused on trying to remain conscious on some kind of level unless I’ve crossed that line where all cognition is lost in which case I DO NOT care at all.
Thirdly, I do essentially care because i wish very much to be heard, really listened to and understood, and respected but I question at what cost am I willing to spend to fulfill this need. I have spent a lifetime trying to accomplish the fullfillment of this desire at a huge sacrifice. I sacrificed my ability to actually enjoy life.
I’m currently at a point in my life where I want to enjoy my life again, genuinely feel alive, feel moments of conscious living, enjoy the reflective glint that catches my eye and allow myself to be caught within the magesty. Sing with the birds when i want to or tell the crows to shut up when they bug me or plug my ears whenenver I damn well feel like it.
Self advocacy is what the current theme has been with my present interaction with counsellors and thus if i follow there advice that’s just one thing among many that they say I ‘need’ to do in order to be a happy fnctioning human being.
Therefore, in the name of self advocacy, I choose to claim my own perception and respect the FaCT That I know who I am, what I think, what I need and when I’m lost, appearing autisitcly weird or freaky by some, that I choose my own comfort first before their’s.
Is that not self advocacy??
A couple of thoughts on this and your “zoo exhibit” entry:
1) The profound wisdom to be found in self-advocacy writings, IME, is not in the reports on what it’s like to be autistic. It’s in making the connections - for oneself - between disability rights issues and how one should treat human beings, including oneself, in general. After reading some of your posts and links, I realized, “Hey, these people are as sentient as I am. They’re not inferior beings. If I can’t assume that they are inferior beings, then I must not be an inferior being either. Heck, there probably are no inferior beings. We don’t know!”
Maybe that piece of “profound wisdom” is simply common sense, but self-denigration is awfully common among us “normal” people these days, as is other-denigration.
2) That “tell your whole life story” thing may not just be a matter of expecting autistics’ “role in life” to be educating people about autism and nothing more. In your case at least, there may be another dimension to it: to prove that you’re authentic. I’ve heard a few people doubt your authenticity, and your unwillingness to tell your whole life story could just give them more reason to doubt. Personally, though, I don’t think it matters much: the messages and perspectives are well-thought-out, and are still useful. Provided, of course, that they aren’t tainted or watered down too much by these imposed preconceptions, like the notion that autistics live in a different world. Everyone and no one is in a different world. No two people have the same cognition, perception, and experience.
3) There’s certainly no need for every autistic to write their whole life story. I think the information currently out there is enough for people to develop a little common sense.
As far as #2, I experienced the “tell your entire life story” pressure long before I experienced the authenticity-doubting. And had the same response to it at the time. Although actually the authenticity-doubting is a standard reaction to autistic self-advocacy (as mentioned by Jim Sinclair).
Aside from philosophical problems with doing so on demand, I’m simply not capable of it at the moment (and have not yet been capable of it). I can’t write things that long and stay on track. And think there are better ways I could be spending my time. Etc.
It was more or less inevitable that because, Amanda, you feature prominently in “In My Language that it would be packaged as “non-verbal autistic woman lets us into her world”. An interesting experiment would be for the video to be shown to two groups of people. One group who has not seen it and has read nothing about it and told nothing about you; the other group also has not seen it and read nothing about it, but told that it was made by and features a non-speaking autistic woman. The reactions of each group are recorded. I guess that the second group would be more likely to describe the video as “a non-verbal autistic woman lets us into her world”.
I would make a distinction between language used for communication and language used for reading. A person may be more at home in the latter than in the former. I can read French fairly well but I have little confidence in speaking it. But I don’t regard English as a foreign language.
There are many accounts written by parents of their autistic children. It is fairly common in these accounts for the parents to describe incidents which aim to show how cute and amusing their children are, even those that try to present autism in a positive light.
Hey Amanda, your comment on the meltdown video got me thinking of something. I stim/tic in public a lot more than I used to. I decided that it isn’t worth the energy to suppress my autistic behaviors in public. Of course I have gotten some negative reactions for stimming in public. One time I was rocking on the bus and some guy thought I was on drugs. So unfortunately it’s a double edge sword. Suppressing autistic behaviors causes problems, but so does not suppressing them.
I have been thinking of doing a youtube video of me stimming set to music. People need to see that isn’t just the “low functioning” people with classical autism who do these things, but also “high functioning” people with Aspergers.
One more thing. You mentioned getting communications equipment in the hands of autistic people who need it. I have been using text to speech software on my laptop and PDA. So far it has come in handy at times. I have a couple of blog entries about my project. One of my goals is to come up with a setup that works in the real world, is reasonably cheap, and can be put together with stuff that is reasonably easy to get.
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