Tag Archives: boundaries

Communication page I used to handle that invasive woman I met.

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It’s been quite some time since I posted my letter to the woman who accosted me on my way to the para transit van. But I wanted to update people on how I handled the situation when she approached me the next day. Which was a success.

I knew that I have trouble coming up with new language of any kind in high stress situations, especially involving people with bad boundaries. So I spent most of the night creating a new page for my communication software.

I use Proloquo or Proloquo2Go for most of my communication these days. My super-expensive, clunky Dynavox has been collecting dust in a corner ever since I first got Proloquo2Go years ago. Proloquo2Go has two separate sections. One where you type and it speaks out loud. Another where you can say something by pressing on one or more pictures.

I created a page where everything was about boundaries in one way or another. These are things I’m often unable to say in real time. I have a hard time remembering its possible to say these things. And coming up with words. And monitoring my emotions in response to situations. And communicating around invasive people. And pushing words past what feels like a barrier between my mind and everything else. Let alone all this and more at once.

Here’s the page I created:

[Description: A communication page arranged as a grid with one sentence per square. Each one has one word or sentence. Words in parentheses are what the previous sentence is an abbreviation for: Back off. Don’t patronize… (Don’t patronize me.) Don’t talk to me. Don’t touch me. Don’t want talk about. (I don’t want to talk about it.) Fuck off. Get out of my face. Go away. I am not a child. I don’t care. I don’t do eye contact. I’m not kidding. I’ve a right to be mad. (I have a right to be mad.) it’s not funny. Leave me alone. Now. Please. Stay away from me. Stop it right now. Stop. That hurts my brain. You put me in danger. (You’re putting me in danger.) you’re hurting me. You’re too close to me.]

I tried to make it so that I could use various levels of politeness, forcefulness, and rudeness depending on the situation. One way I did this was with different icons. Obviously, “leave me alone” and “fuck off” are very different. But another way I did it was by adding icons for “please” and “now”, the two squares outlined in blue. This made it so, by hitting two buttons in a row, I could say “please leave me alone” or “leave me alone now”. So I have a pretty good variety of intensity I can use.

I was expecting her the next day. She had said she wanted to meet me in the morning. So I prepared myself. I tried to stay connected and aware of my surroundings. She sat down at the table next to me. And she watched until my staff person had to leave me alone for a minute. Then she approached.

Because I was expecting her, I was prepared for the onslaught people like her carry with them. That thing where when they get close to you, it almost feels as if they are overlapping with you. So in my head I made sure to mentally separate us, which made it easier to communicate. I hit “please” and “stay away from me”. She yammered some sort of explanation and went back to her table.

I maintained deliberate mental distance the rest of the morning that I was anywhere near her. My case manager later made an effort to find her. She’d heard the story from a guy who witnessed it, and she wanted to report this woman. But we never found her. And things went just fine the rest of the day.

In any alternate universes where I didn’t make this communication page, the likely outcome is much worse. I would have been pretty much trapped around this woman, and that would have done a kind of emotional damage that takes time to recover from. It’s nothing that has any kind of official name, it just leaves me more vulnerable to other people like her until I can reverse it.

Another important thing I did besides create the communication page, was to rehearse everything many times beforehand. If I don’t do something like this, it’s hard to use the communication icons. Contrary to popular belief, just having the ability to type or use icons, doesn’t solve every communication problem.

And without rehearsing, there’s a big chance I’ll never use a page like this. My fingers won’t know where to go. My mind won’t remember it’s possible. My eyes won’t remember to look through the page to find possible things to say. My will won’t be able to push through the barrier between experience and expression. And much more. That’s a lot of places for communication to break down.

It is absolutely vital that people who use communication devices, have ways to respond to violations of our basic boundaries. Disabled people are far more likely than others to have others behave invasively with us, ranging from subtle to violent. People teach us from our earliest years onward that such invasion is normal, natural, and something we should accept without complaint. We have to have the means to say no.

And we have to have the means to say no forcefully, even rudely. We need to be able to use cuss words, even if we have the kind of personality that would never use them. Sometimes the only reason that we appear unnaturally even-tempered is because we’ve never been allowed to be otherwise. We have the right to say fuck off, but people don’t always give us the ability to do so.

Of course, even if we say things like that, there’s no guarantee anyone will listen. Some people’s reactions when I get mad, remind me of the way people giggle at my cat when she swipes someone who touched her in a way that hurts her. It’s like she and I aren’t real enough to them, so our anger is cute and funny.

I’ll also never forget the time someone made an asinine comment when I was out in public. I typed a response and stuck the speaker up to his ear so he could hear it. All his friends burst out laughing. One of them said “Dude, that guy’s cussing you out using a machine!” Which is… so much not the response I was going for.

But still. We need to be able to have the full range of responses that other people can have. To do otherwise smacks too much of that idea that we should be passive and sweet all the time. Being able to say no, being able to cuss, being able to tell people to go away and leave us alone, these are some of the most important things people with communication impairments can learn to say. But often people don’t teach us that stuff, they don’t want us to know it.

Another important thing: Communication pages like this are not just for people who absolutely can’t ever speak. They are for anyone, anywhere, who for whatever reason would be unable to say things like this in situations where they need to be able to say it.

I’ve run into too many people lately who desperately need something like this, but are afraid to use it because they don’t fit the popular image of someone who needs a communication device. Some of them have even been told that it’s horrible or disrespectful of them to even consider using a communication device. But my position on it is that having the most effective communication method possible can result in better emotional and physical health, in some situations it can even save lives.

So given all that? If something like this can make your life better, for any reason at all. Whether you can’t ever speak, can only sometimes speak, can only speak about certain topics, can speak but it isn’t what you mean, can speak but typing or using picture icons works better or uses fewer mental resources. Or anything else like that. Do whatever works best for you, and screw anyone who tells you different.

Anyone who feels the need to act as the supreme gatekeeper of all things assistive technology… not only do they have too much time on their hands, but they are letting ideology get in the way of real people leading better lives. And that is just plain wrong, and fundamentally unfair to people who could benefit from a communication aid.

 

Free Speech 101

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Updated to add: PLEASE READ MY APOLOGY AND RETRACTION. Autism Speaks did not do this this time. Anything not pertaining to Zach’s t-shirt is still a concern, but the thing with Zach’s t-shirt is no longer a concern. Please read my retraction for more links on the topic.

Someone just asked me why it was that I could oppose the kind of censorship occurring in my last post, when I am involved with two different organizations (ANI and autistics.org) who both have rules about what can and cannot be posted in their forums, and will put people on moderation if they break those rules. And, presumably, because I have a blog in which I don’t allow certain kinds of comments to be posted either.

I will try to explain the difference as well as I can, in case anyone else is wondering the same thing.

Edited to add: But first, please read through the ad hominem fallacy, tu quoque. Even if I were really engaged in censorship, it would not make me inaccurate in pointing out someone else’s. But, I’m not.

Basically it works like this:

Censorship (or in some people’s view, the bad kind of censorship) is preventing someone from doing the equivalent of printing their own totally legal material on their own paper.

Whereas, what autistics.org and ANI have as policies, is the equivalent of saying that you can’t print certain views on paper that we happen to own. You can’t do the equivalent of coming in and using our printing presses to just print whatever agenda you feel like, there are boundaries there. That’s totally fine.

I could decide to create a mailing list that had a rule that anyone whose name started with F could not post there, ever, and that everyone else could only post every other Tuesday. I could then put people on moderation if they tried to break those rules, or even remove them from the list. That would not be censorship — people whose names started with F could go and post somewhere else, and same with people who wanted to post on days other than alternate Tuesdays. I would not be preventing them from doing that.

What would be censorship is if I started such a list, and then went around trying to keep other people from breaking my rules on their own lists that I didn’t even own.

I would have no problem if the Autism Speaks message board moderated or banned perfectly legal posts that disagreed with the mission of the organization. They have every right to do that. It’s their message board, not mine. I would have no problem if I were moderated or thrown off of a mailing list dedicated to chelation of autistic people, because I clearly disagree with that procedure. People are routinely thrown off such lists and that’s just fine.

They’re not doing that.

If people printed up a batch of t-shirts saying “autistics.org doesn’t speak for me,” I wouldn’t try to do anything, I wouldn’t even really care. I certainly wouldn’t sue them for copyright infringement for saying the word “autistics.org”.

If someone tried to disseminate the idea that autistics.org was run by a bunch of child molesters, that would be defamatory, and that would not be okay. Defamation is not protected free speech.

If someone tried to sell a book with the writings from autistics.org in it, without obtaining permission (and this has happened in at least one book that I came across completely by accident one day), that would be copyright infringement, and that would not be okay.

But a t-shirt saying “autistics.org doesn’t speak for me” or “Autism Speaks doesn’t speak for me” is well within protected free speech, at least in the United States, where both autistics.org and Autism Speaks are based.

Now, if someone tries to come to, say, ANI-L, with the express purpose of trying to talk everyone into believing that it’s horrible not to want a cure, then they will probably eventually get themselves banned.

If someone tries to come onto my blog and violate my comment policy (say, telling people here we’re not autistic enough to understand the needs of real autistic people), then their comments will be moderated, and if it happens consistently enough with them not providing much if any useful content beyond that, I might chuck their name into my spam filter and forget about them. (I so far have not had to do this very often, most people are more respectful than that.)

But people are totally able to go off and make their own mailing lists or blogs with the totally opposite set of rules. Free speech means that you can go make a mailing list or blog dedicated entirely to wanting a cure, and throw off anyone who argues against it because it gets in the way of your goal of finding or funding a cure.

Free speech means that you can go off and form a mailing list entirely full of people that you believe are “autistic enough” to comment about autism, and moderate comments from anyone you don’t think is autistic enough.

Free speech doesn’t mean that you have every right to, no matter what your viewpoint is and what organization it is, come onto someone else’s forum, or use someone else’s printing press, to disseminate your own viewpoint.

So there’s no actual contradiction here: Autism Speaks is attempting to interfere with other people’s totally legal and protected free speech. They are not just restricting what can be said on their own forum (which is their right, whether they choose to do so or not), they are attempting to restrict totally legal (non-copyright-infringing, non-defamatory) content that people print on their own t-shirts and websites, just because it expresses dislike of their organization.

And that’s all the difference in the world.

A difference in perspective.

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“She’s so happy” is what someone just told me about Fey, my cat, who’s visiting me where I’m staying right now.

Actually, while Fey is a lot of things right now, happiness isn’t what I’d summarize it as. She’s glad to see me, but she’s also edgy and scared about being in a new place (and about me not being home yet), angry at me for not being home, annoyed about having been picked up, and frantic in her attempts to get me to do something by nudging my hands and face hard and in rapid succession.

I notice this sort of thing often. I obviously can’t read a cat’s mind and know precisely what she’s thinking about everything, but I can get a pretty good clue through body language of the assorted layers of emotions she’s got going on.

Other people often seem to have a limited template of cat emotions in their heads.

Such as, as I finally deduced today, “Purring means the cat is happy.” Which is a gross oversimplification of the use of purring by cats, and which seems to lead to humans totally ceasing all further observation of what the cat happens to be doing in addition to purring, as well as all comparison of the sound of the purring to all other purring the cat has done.

Then there are more “subtle” things like not knowing the difference between a play-bite and an anger-bite. Which doesn’t seem subtle to me, but after watching a lot of people interact with cats, it seems like many people don’t get it. I’ve seen too many people attempt to “play with” (read: invade the space of) a heavily annoyed cat, only to conclude the cat is “mean” when they get hissed at and scratched. And all too often, even after the hissing and scratching, they might say in a sing-song voice, “You meanie,” and go back for more. Putting themselves at risk of a serious bite and taking every warning sign the cat has to offer as a sign of “playfulness”.

That last one, I had trouble understanding for awhile. I thought the humans doing those things were being cruel themselves. Then I ran across a person who seemed absolutely contradictory: She was very conscientious about most things, but at the same time she seemingly terrorized my cat and then laughed about it.

A friend pointed out that she probably wasn’t able to read feline social cues very well.

And that did turn out to be the problem after all.

But it seems like to many people there’s only one set of nonverbal cues that exist: That of the neurologically standard members of their own species in the culture or cultures they are most familiar with.

Anything beyond that appears less nuanced, but often they conclude that rather than being unable to pick up the nuances of an unfamiliar species, neurotype, or culture, then these nuances don’t exist unless the unfamiliar people in question develop nonverbal cues specifically intended to communicate to the person doing the observing. They might even, if they don’t even manage to learn an abbreviated version of the nonverbal cues in question, conclude that the unfamiliar species, culture, or neurotype has no body language. Which leads to being stereotyped as mysterious, sinister, defective, deficient, or some combination of the above.

I’ve always found it interesting, how if autistic people don’t understand certain things about non-autistic people, it’s because autistic people are disordered (deficient in understanding “nonverbal cues” in general, as if there is only one kind), but if non-autistic people don’t understand autistic people, it’s also because autistic people are disordered (deficient in our ability to produce “nonverbal cues” in general, as if there is only one kind). People seem very resistant to the idea that there are many levels of detail and nuance that they are missing in this regard.