When Orange Speaks Louder Than Words

Orange is the color of Autism Acceptance Month.  Because it’s the opposite of blue, and blue is the color that everyone is told to wear for Autism Awareness Month.  Which kind of sucks because my favorite colors, and nearly all of my clothes, are brown and blue.  And I used to really hate orange.  Sometimes I hate the term Autism Acceptance, too — I like the idea behind it, but I don’t like the way the term has become a meaningless buzzword in some people’s mouths.  Whether it’s parent groups who throw the word ‘autism acceptance’ around to sound current but don’t actually accept the slightest thing about their autistic children, or whether it’s autistic people who’ve fallen in love with the words and forgotten the meaning.  Either way, I like it as a concept but not as a buzzword.

Anyway, I hated orange.

Then my father died.  I was very close to my father.  As a way of remembering him, I began to wear his clothing. My mom sent me a bunch of his shirts, suspenders, watches, and other assorted clothing and jewelry.  And I began to wear his clothes, regardless of color.  

My father wore a lot of very colorful clothes.  I had to get used to that.  But most of the colors he had look surprisingly good on me.  This did surprise me because his skin was a very different color than mine, much darker.  But someone pointed out that while our skin was different in terms of darkness, the actual hue of our skin was nearly identical.  Which goes a long way to explaining why nearly any color that looked good on him, looks good on me.   The only place we seem to go wrong are on certain pastel shades that just look better against his shade of skin than mine.

Wearing my father’s clothes is more than a symbolic act of remembrance.  It helps me get inside of him.  It helps me find him inside of me.  It helps me find the parts of him that I didn’t even realize were there until he was already dead.  There’s something about it that makes me love him even more, makes me comfortable in my own skin, makes me see the many things about us that are alike as well as the differences.

And orange, most of all, has come to symbolize that entire process for me:  Finding something totally unexpected about my father that was also inside me all along.   Finding that many shades of orange (mostly darker shades, definitely not pastel peach shades) look good on me, sounds like a superficial thing.  But when it’s in the context of my father’s death and the meaning he had and continues to have in my life, there’s nothing superficial about it.  It’s about as deep as things get.  And that’s unexpected as well.

By the way, one thing I never take off is the circular necklace you can see in one of the pictures.  It’s a see-through locket containing hairs from my father’s beard, that he agreed to send me before he died.  I take it everywhere with me, and even a year ago when I was too delirious to understand that my father had died at all or what the necklace was, I still managed not to lose it despite losing some very important items during the same hospital stay. 

So I now appreciate orange a lot more than I used to, and I now have more orange things to wear this month.  Both because my father gave me orange clothes, and because since coming to view orange as symbolic of all these things, I have started making myself more orange clothing.  The shawl pictured above is something I crocheted myself, and the crochet project I am working on in the last picture will be a cardigan made out of bamboo yarn.  I’ve made other orange things as well.

I had other things planned to post this month.  I had a lot of things planned.  Like the song says, “Life is what happens to you when you’re busy making other plans.”  I’ve had tube problems and problems with my steroid levels that have taken up a lot of my time and energy lately.  So I think the very long post I had planned for Autism Acceptance Month is going to turn into a Blogging Against Disablism Day post for May 1st.  And this post will have to suffice for an Autism Acceptance Month post — right at the end of the month, of course.  But all these problems have made my inertia twenty times worse than usual, so getting posts out at all is a miracle and it’s a good thing that the posts I am talking about that I’d planned, are mostly already written months ago, and then stored in anticipation of this month.  Because I rightly guessed that I wouldn’t be able to write much for whatever reason when the time actually came around to have things ready.

Orange also stands for fire.  I used to think that fire meant the kind of anger problem I used to have, and I was afraid of my own fire.  But someone told me that my anger problem was misdirected fire.  That real fire, properly channeled, could mean something closer to passion.  And that’s when I began to truly integrate fire into who I was, and it flowed through me, and it was something I’d been missing for a long time.  Adrenal insufficiency sometimes feels like it tries to drain me of that fire, when I get close to an adrenal crisis, it’s like everything goes flat and deflated.  But when fire is properly flowing through me, it feels like finally being alive again.  So that’s another thing orange has come to mean to me. 

The things I’ve found about my dad in myself, by the way, are not irrelevant to Autism Acceptance Month.  My father and I are both autistic, and we share a lot of traits.  One of the traits that we share that I treasure the most, is our tendency to communicate with objects.  As in, both communicate by means of using objects, and experience communication (it’s the only word that really fits) between ourselves and supposedly-inanimate objects.  I knew to some degree this was true of my father, but it became much more apparent as he was dying, and even more apparent when I received many of his belongings after he died.  I arranged some of them into a memorial shrine, and any time I want to see him all I have to do is look through the objects and I can always find him by sensing the connections between them.  

Not a lot of autistic people talk about this, but a lot of autistic people very much do things like this.  And many people have told me they look at objects differently after seeing how I have interacted with objects after my father’s death.  People are used to seeing objects as dead in themselves.   And they are used to seeing interaction with objects as inferior to interactions with people.  They are used to seeing attachment to objects as an ‘attachment to material possessions’, like a consumerist thing.  So they are legitimately surprised when they see someone doing it completely differently than anything they’ve ever seen before.

Some people react well to that and some people react badly.  I’ve been lectured more times than I care to count, on how objects are not really alive and you can’t really interact with them.  Usually they talk to me in the same way they would talk to a five-year-old who believes in unicorns.  Other people have explained anthropomorphism to me at great length, totally neglecting the fact that I’m not in fact attributing human qualities to objects.  I interact with them, they interact back, I see them as alive, but being alive is not a human-specific quality.  And they are alive in a very specific way that has nothing to do with humans and nothing to do with the actual categories of animate and inanimate beings in general, and I interact with them as what they are to a degree that most people who see them as dead probably don’t. 

And usually the person doing the explaining manages to be incredibly condescending both to people like me, and to cultures that don’t differentiate as much between living and non-living creatures as modern Western culture does, or differentiate much differently.  The view is that we’re just simple-minded idiots who don’t yet know enough, aren’t yet highly evolved enough as a person or as a culture or both, to have figured out what Western science knows.  Never mind that their view of how we see things is usually mind-bogglingly simplistic in and of itself.

For some reason, such people seem to feel almost compelled to force their worldview on me.  Like I’m just one tiny little person who happens to be moving through a world full of people who mostly don’t share this worldview.  I’m hardly a threat to anyone.  But they seem to feel threatened enough that they have to quash any sign of difference anywhere they see it.  And I’m not just talking about nonautistic people, I’m also talking about autistic people who don’t happen to share this particular autistic trait.  (Because no autistic trait is universal, and quite often autism involves opposites a lot — so that both a trait and its polar opposite will be common autistic traits.  Sometimes even both showing up in the same person at different times.)

But what really amazes me are the people who are willing to have their mind changed about objects after they see how I interact with them.  They see that there is respect there.  They see that there is depth there.  They see that like many autistic people with similar traits, I move through a very sensual world full of richness and depth.  They see that I use objects to communicate with other people, to say important things that I can’t say with words.  They see the way I use objects to remember my father and to interact with him after his death.  They see that there is something deeply real here.  And they come to respect that, even when they don’t fully understand it.

And I never set out to cause them to respect me.  Any more than I set out to convince one of  friends that being gay is not a sin.  I actually told her I didn’t mind that she thought it was a sin, as long as she didn’t interfere with my life on that basis, and went on living my life around her as I was.  She said that just knowing me changed her mind about gay people on a religious level and on other levels.  And that’s not something I ever set out to do, in fact I was careful not to set out to change her mind.  But it happened anyway.  And that’s how this thing with the objects has happened:  I never intended it, in fact I never would have known the change was happening in some people if they hadn’t told me in private that I had changed their entire way of viewing how people interact with objects. But they did change their minds because of me, intended or not.

And I think that’s really important.  Sometimes people don’t come to accept autism — or aspects of autism, as the case may be — because we’ve been shoving things in their face.  Sometimes they come to accept autism, and autistic people, and autistic people’s ways of being in the world, because they spend enough time around us that they get to see us in a well-rounded context.  Not in terms of rhetoric but in terms of real life.  And seeing us, seeing how we live, seeing that our ways of doing things are legitimate even if they’re different than anything they’ve ever imagined before, that can be far more important for some people than anything we could have to say about the matter.

If saying things weren’t important to me, mind you, I wouldn’t be a blogger.  I may be a reluctant writer at times, but I’m definitely a writer.  But I also think there’s things in the world far more important than words.  And I also think there’s many different ways to communicate something, and writing is only one of them.  Not everyone can write, but everyone can make a contribution, deliberate or not, to the acceptance of people like us in the world at large.  And as writing this kind of post has become more and more difficult for me — it was never easy, but it’s getting much harder with time — I’m learning to very much value my ability to just exist and get things across by the way I exist around people.

There are a lot of things about being autistic that are hard, and I have to confess that lately it’s the harder things that have caught my attention more often.  The difficulty of keeping in touch with even my closest friends, to the point I’ve become almost completely socially isolated lately.  The ever-increasing level of inertia, which has snuck up on me because it looks very different after severe adrenal insufficiency completely reshaped the way I experience stress on a subjective level.  The stress levels that come not from emotional stress but from the sheer strain of having to function on an everyday basis — walking from one room to another, getting in and out of bed and chairs, going to the bathroom, making words, changing feeding tube dressings upwards of twelve times a day, going to new places that are visually overstimulating, anything involving getting information into or out of my brain, thinking on an intellectual level.  Things that most people don’t even know are skills, let alone difficult ones, because most of them are done automatically.  And all of these things are contributing to it not always feeling great to be autistic lately.

But orange brought me back to my father, and my father brings me back to objects, and objects bring me back to that rich world that my father and I both take part in.  Which brings me back to the way that just being who I am in front of people has changed their entire way of viewing objects and people’s relationships with them.  And that’s the good side of autism, and this is one of many ways that autism acceptance — the real thing —  can happen.  One person at a time, through living our lives as authentically as possible so that people can see exactly who we are and how we do things.  And when they see that, when they see who we are and how we live, some of them come to accept us on a deep level.   And not a lot of people are talking about that.

So I guess I’m glad for orange after all.

Edited with BlogPad Pro

Unfolding

Me with Fey sitting on my shoulder.

Sometimes I want to unfold
The beauty of the world
As if it was the most intricate
Origami flower
That had ever seen the light of day

Then I want to wait
And wait
Until the flower blooms for real
Until its velvet black blossoms
Tinged with purple edges
Grow fuzz that you can run your hand over

And I want to hand it to you
And watch you rub the fuzz
Against your cheek
Against your lips
Against your nose —
The yellow-black stamens tickle

And then fold the flower
Back into paper
And put it in my pocket
For safekeeping

I would make more of them
And write secret notes
That only some people could read

They would say things like:

“The most beautiful things
Are concealed all around you.”

“You are a flower and
This is how you become real.”

“You are unfolding
Just like this.
Don’t hurry,
Don’t wait.”

I would hide them in plain sight
And I would hide them in places
That only the curious and observant
Would bother looking

I would hide them in places
That can only be found
When doing shit work
For 22 cents an hour

I would hide them so that each person
Stood a chance of finding at least one
Just one
That told them what they needed to hear
Right now
Just then

Unfold them, they become real flowers
Fold them, they become folded paper
You can do this as many times as you need
Because they are magic flowers

And if you get good at looking and listening
With more than just your eyes and ears
You will find these creations everywhere
Left by someone
With far more magic
Than I will ever possess

You know when you find one because
Suddenly something ordinary
Becomes extraordinary
Suddenly you’ve been let in on a secret
About something you’d seen before
But never seen before

It can be anything from
A spray of mud on your pants
To a pair of decorated crutches
To a butterfly

It doesn’t have to be pretty on first sight
Many times it isn’t
Many times it seems horrible
Until that flash of inspiration
When it unfolds into a flower in full bloom

And then every texture is like suede
And every color is like the deepest blue before dawn
And every taste is like boiled collards with butter
And every smell is the fur behind a cat’s ears

I wish I had the magic necessary
To make these things myself
To fold reality into paper
And leave it everywhere for people to find

As it is, all I can say is
Someone has already done it

You can find these magic folded papers
On the inside of a zero
In the yawn of a kitten
In a feeding tube
In a wadded up rag
In a tangled old root
In a leaf that skips down the sidewalk

And all of them are flowers
And all of them are there to tell you
There is more in this world than you can ever see
There is more love
There is more light
There is more beauty

And you are part of it
Always
Even
(Especially!)
When everything seems to be
Crashing down around you

Can you accept
This magic spell
This gift
From the world
To me
To you?

What came before.

If I could reach through the computer screen…

I want to hand you a lapis lazuli ball

So you can lose yourself in the deep blue

And be dazzled by the gold specks.

I want you to roll it over and over in your hand

Gently nose it to feel its texture

And weigh it in your hand.

I want to hand you my black tourmaline egg

So you can feel that unique texture

I want you to hold it while you sleep

And wake up to it, warm and slick in your hand

I want to hand you my amber ring

So you can watch the sunlight turn it into fire

And watch the sun set inside it glittering red, orange, and yellow

I want to do these things

So that I can say

We share these sensory experiences

And nothing can take that away

I want to hand things back and forth

And clack them together to hear their sounds

And rub them on our cheeks

And brush them against our fingertips

Then I want to hand you things too big to pick up:

The warmth and smell of a granite mountainside as the sun heats it up all day long.

The liquid sunlight melting across the coat of a cat who embodies sunlight well.

The whole cycle of life that takes place in the soil of a redwood forest. And the smell of that soil.

The deep rumbling sound of the Mother Tree when you’re curled up against it, surrounded by its invisible amethyst glow.

The feeling of lying in bed, but at the same time, being surrounded by a deep, glowing blue sky, as if pre-dawn or post-dusk. And listening to the music of the forest. Listening with my skin, listening with my eyes, listening with my fingertips, listening with my nose. Listening with everything more than my ears. Being wrapped in the song of the forest and the stars and the trees and the soil and the fungus, all singing, all singing inside me.

I know you can feel the layers of sensory experience. The layers of meaning that come before the meaning of mind. The things we were meant to forget, when we learned to think their way. The things we didn’t forget, the things that we retained no matter what we were told to forget. The stillness, the silence. The music in the silence, the growth and death and birth cycling endlessly.

I would hand you these things, if I could reach through a computer screen. And I would take whatever you handed back, and listen to it sing its unique song. And we could communicate the way we are meant to communicate. By what came before thought, by what came before sight and sound, touch and smell, by the resonance in what came before.

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

How to solve “behavior problems” without having to learn self-control.

Many years ago, meetings with my case manager tended to involve shouting and cussing. Mainly on my end. Today, our biggest problem during meetings is whether I'm physically and cognitively capable of holding a serious conversation at that time during the day. I would love to take credit for this by saying I learned a lot of self-control between then and now. But I suspect that even if I have, that's not what really changed things.

Like a lot of cognitively disabled people, I am not capable of keeping track of the dozens of things that have to happen for my basic needs to be met. And I really mean basic: Food, water, clothing, bills, hygiene, shopping, and medical care. Unlike a lot of states, the DD agency here only serves cognitively disabled people — you have to have an intellectual disability or autism, cerebral palsy doesn't count. So you would think they'd require case managers to be organized enough to meet those needs. You would think, but you would think wrong.

My case manager back then was a nice enough guy on a purely social level, but he was not an organized person. At all. So he was able to do a few things, but other than that he gave staff very little direction on how to consistently do what I needed. Meanwhile I was unable to even know most of what needed to happen. So stuff. Very necessary stuff. Lots of it. Wasn't getting done.

This meant that I pretty much lived from crisis to crisis, discovering a different gaping hole in my care each week. My case manager, having lots of power and being unwilling to face his role in these matters, kept telling me that these things were not his problem.

The more time went on, the worse things got, and the less he was willing to take responsibility for what was happening. So he blamed me. Nobody could possibly keep track of this many medical problems and appointments at once. I was unreasonable to expect basic care. There was no possible way to meet the needs of someone like me. I was the problem.

I kind of wanted to survive. So the more time went on, the more often I chewed him out for not doing his job. And the more frustrated I got, the more he treated me as if I was the one doing something wrong. Because hurting his feelings was worse than him forcing me to live in perpetual crisis mode. And it was perfectly reasonable to simply deny I had needs rather than work to meet them, right?

Towards the end, he began to get snippy and snarky. If I brought up anything he wasn't doing, he'd get this twisted smile in his voice and say, “Well maybe your new case manager will be able to do this.” Even I could pick up the implied meaning: that it was unreasonable and demanding of me to expect anyone to do these things, and I would soon find this out when I got a new case manager who would be just as incapable of keeping track of these things as he was. Then I would be forced to admit how impossible it was to meet my needs.

Except it didn't work out like that. At all.

My new case manager was a young woman. She was organized and efficient. And within a month or so, she completely turned my life around. I could finally rest, because I no longer had to keep a constant lookout for things going wrong.

And my reputation changed. Suddenly they considered me reasonable, polite, and civil. They acted as if I was the one who had changed. But I wasn't. What changed was my situation. It's hard to be nice — hell, literally fatal to be nice — when it's your life on the line, when there's a different crisis or three every week.

Yet that's exactly the position a lot of agencies force disabled people into. They don't provide adequate case management, and the outcome becomes our fault. We are forced to fight for basic necessities. When we do fight, they take that as evidence that we are capable of keeping track of our own needs without any extra assistance. We become not their problem.

From what I've seen, a lot of disabled people die this way. With help from friends, I've been able to catch situations like that. But not all the time, and not before the situation becomes dire. The amount of emergency room visits I used to have due to dehydration alone is astonishing compared to what I have today. It used to be routine for me to get fluids in an IV on a regular basis, because nobody was helping me drink water or Gatorade.

So the situation becomes this: If we don't speak up, they presume everything is okay, because if it weren't, someone would say something, right? If we do speak up, they presume everything is okay, because speaking up proves we are competent to track these things and direct support staff on our own. Plus,if we spoke up in one instance, then our failure (inability) to speak up in other instances means nothing's really wrong, because if it were, we'd say something. “You're such a good self-advocate,” they say, when they really mean “If there was another problem, you'd say it.” If we routinely end up in severe medical trouble, that's only to be expected given how many medical problems people like us have.

Needless to say, my being alive at the moment owes a lot to coincidence.

They also take signs of desperation as just happening, with no context attached. So our justified terror and anger become behavior problems, or psychiatric disorders. Or it's just part of who we are to be demanding or nasty. I'm still not certain my agency perceives the change in my behavior as a response to a change in context. They probably think I mysteriously learned self-control, or finally matured past being demanding.

No. My needs got met. That's a huge difference between that, and some kind of change on my part. If they went back to screwing me over and blaming me for the consequences, I'd probably go back to yelling at them.

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

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.

 

Thank goodness for that instinct.

That instinct was back again this week. I’m pretty sure I’ve written of it before. Despite terrible conscious body awareness, this instinct has popped up to save me more than once. It tells me “There’s something wrong with your body. If you don’t find a way to detect and treat it, you could die or end up in the hospital.” It sounds ominous but it’s not a panicked “OMG I’m going to die AAAAAAACK!!!!”, it’s more like a calm but firm realization.

In the past, it has warned me of things like organ failure, untreated bronchiectasis (treated it’s only a little more dangerous than asthma, untreated it can kill you), and the beginnings of going septic. And this week it popped up two or three times (seemed like twice, but the first time it happened it seemed to be warning me about two separate things).

The first time it popped up recently, I was away at a recreational program. It told me to go home, not even to wait a day, just go home now. The warning seemed to be twofold: Something was going wrong with my lungs, and my body was so out of energy (from being pushed by others, but that’s another story) that I was experiencing symptoms I haven’t experienced since my last major health crash. Between the weakness and the coughing up disgusting colors of phlegm, this seemed pretty obvious, but the warning gave me the extra urgency not to wait overnight.

So I got some antibiotics ordered and went home. By the next day, my brain was actively checking out. By checking out I mean, being technically awake but not conscious of anything, or being aware only of these weird series of images that went by. It had a feel similar to past experiences of delirium, rather than shutdown or something, and during periods of better awareness I became very glad this was happening only in a familiar place among familiar people. And I was able to begin the resting that I badly needed in order to get through this in one piece.

I began to feel a little better the next day. But then, abruptly, things became far worse. I couldn’t get to the bathroom and back without falling or coming close. I sometimes felt like I was going to pass out. And I couldn’t get near food or water. I couldn’t put words to why, I would just try to drink and my head would turn away. And I felt generally cruddy and woozy. And most disturbingly, the instinct was back. It said “There’s something else wrong and this time it’s not your lungs or sinuses but I can’t tell you what it is.” Grrrrrrrr.

I told all this to someone who persuaded me to go to the ER. (Note: I nearly always have to be persuaded. A good friend describes my attitude to that place as “If Amanda got her leg lopped off, she’d be insisting she could bandage it herself rather than go there.” I’ve just got friends who refuse to give in if I say I don’t want to go there. And mostly I’m glad despite my loathing of the place.) The reasoning was that the lack of water alone would make it harder to cough things up, and bronchiectasis makes that hard enough already, and that could spiral downward fast. Plus it wouldn’t be good to pass out alone in my apartment.

Once I got there, the events unfolded in a very strange way. Normally they’ll give me IV fluids for practically no reason at all, but this time (when I was actively saying I was unable to drink) they insisted on testing my urine for dehydration. I was having too much trouble holding onto language to explain a lot of things so someone was with me explaining them. They kept demanding to know why I couldn’t drink, and the person kept telling them that autistic people can have so much trouble describing subjective experiences, that sometimes “I can’t do _____ and I don’t know why” is all you can get, and that you have to really dig and do a lot of tests if you want to find the reason, rather than acting like nothing is wrong because the person can’t name it. I was treated radically differently from my roommate, who was treated with the utmost respect. (This is common for DD people in general, including autistic people.) They even tried to get me to drink water, which is weird as usually when I’ve been given IV fluids I’ve been perfectly capable of drinking but they’d never given me water in a cup. And all I could do was wet my tongue a little and then my head turned away.

Nearly eight hours later, they came back with a way more respectful attitude to me. Why? The urine test just happened to pick up on the fact that I had a UTI. And they now thought that between a urinary tract infection, sinus infection, and lung infection, I might just have a reason to have no appetite. So they then proceeded to give me two bags of IV fluids and a prescription for yet more antibiotics before letting me go.

What scares me is what would have happened if they hadn’t detected the UTI. It’s not like they were even bothering to look for an infection. The information just popped up when they were testing for something else. And while I could tell the problem was somewhere in my torso, that’s a huge area of the body to look through for symptoms. Nothing pointed me in the direction that a UTI would have been in. And this physician’s assistant was not doing what you should do with a sick autistic person (check for all common things that could cause the symptoms). In fact, since my way of communicating my loss of appetite was so unusual, she wasn’t even treating it as a loss of appetite but rather a matter of willpower or not wanting to drink.

But somehow despite all that I’m on all the antibiotics I seem to need to be on, and seem to have found all the infections that were setting off my “get treated or you may not survive or at least may end up in the hospital” instincts. I’m just glad those instincts are there, or I would have delayed if not avoided altogether, getting everything diagnosed and treated. I certainly wouldn’t have known anything but the lung/sinus infections was causing all the new symptoms. It’s odd to have a body that won’t tell me basic information half the time, but will tell me “You’re in danger, get help NOW.” I wish that simply communicating this instinct to a doctor would result in getting tested for whatever things seemed likely. I think I could do that with my GP, but not with some of the random people you get in the ER. And trying to negotiate all this while disoriented and confused is just… gah, I’m glad it somehow worked out because I honestly don’t understand how, especially given I wasn’t “all there” during times I needed to be communicating clearly.

By this point I’m pretty wiped out and still having appetite problems, but I’m feeling a lot better. I don’t need my bipap while awake anymore, I can get around a little using my old crutches for stability, and my brain is no longer randomly checking out, nor do I feel like any moment my surroundings will burst into a Disney Acid Sequence (warning: the link is to TV Tropes and may suck you in and spit you out twelve hours later). And I’m hoping we caught everything the instinct was talking about.

The Fireworks Are Interesting

The closer you get to the heart of things, the more words fall apart. First they get shaky. Then they start contradicting each other or getting paradoxical. Then they just fall apart, dissolve, vanish.

The way my thoughts work creates some similar problems for language. And it’s not just that I haven’t found the absolute best combination of words to translate my thoughts with. It’s that on a fundamental level the thoughts don’t translate.

My thoughts, such as I am aware of, are mostly observations of the world, that I have allowed to slowly and quietly settle themselves into patterns. They are not symbols of those observations. Symbols would have a better chance translating. They are also silent — no words pop in to describe them, there is no “loudness” about them, they don’t announce themselves with any kind of fanfare. I suspect to many people they would seem like an absence of thought.

I have also observed words. I have seen which clusters of words attach most frequently to which situations. And that is how I use words — as imperfect translations of situations that present themselves in my mind. I use words because they are the most readily recognized way to communicate with most people.

[With some people, words are not necessary. There are better ways to communicate. That is wonderful in every sense of the word.]

The way I use words can present problems though. I start with a situation and then I throw words at it. The problem is for any given situation there are many ways you could approach it with words. Some of those words might even seem contradictory if set side by side. But it’s not that the situation itself is contradictory, it’s just that language can be complex that way.

For instance, in my last post I described what could be called, and what are often called, subtypes of autism.

Someone replied saying they don’t believe in one type or many types of autism but that it seemed from my post as if I believe there are many.

The reality is more complicated than that.

Autism is not a thing. There are only the people who get called autistic.

I recently tried to describe the process that led to modern notions of autism. I have read many of the original sources for that and for other areas of psychiatric classification. My language skills were less fluent than stuff I normally publish online, but even though I am eating again (I was sick when I wrote it) I still can’t come up with more fluent language for the description I gave of the way ideas of autism have come about.

Were original people designated as autistic.

Original people had their be.

Original people had their “seem to professionals”.

Those not the same.

Then people later might identify with the be. Or with the seem to professionals. Or with the seem to professionals of the original seem to professionals.

So later version of who is autistic ==

People be like original people be.
People be like original people seem to professionals.
People be like original seem to professionals seem to later professionals.
(…)
People seem (to self or professional or family) like original people be.
People seem (to …) like original people seem to professionals.
People seem (to …) like original seem to professionals seem to later professionals.
(…)

Which total complicate what people see now as one thing and try to find one common deficit.

So when I say autism it is a shorthand for a modern language-based classification of a bunch of human beings that involved a lot of biases, historical accidents, and clutter-minded evolution of the sort I described above.

So when I say subtype of autism I mean there are people with some cognitive things in common, who also happen to be classified by those stilts-upon-stilts-upon-stilts standards as autistic. I mean to refer to real live people that I have observed patterns in. Not the baggage that comes with the words.

So I could just as easily have described us in a way that involved a questioning of the entire category system that gave birth to notions like “autism has many types” or “autism has one type”.

This may not be the same reason that the guy who replied to me doesn’t believe in those things. But it is still a lack of belief in those things. And my lack of belief in those things is not changed by my use of the words that most people are familiar with — autism, subtypes, and so on. My lack of belief in those things also is not a good reason for a troll to reply saying something like “If you don’t believe in those things then stop calling yourselves autistic damn you.” To say such a thing is to take my words on entirely the wrong level, and such comments will be cheerfully deleted.

There are third, and fourth, and fifth, and so on, ways to describe the situation in the last post or for that matter in any of my posts. It can be hard to know which one to use, whether to combine a few, or what. And no matter which way I choose, I will be leaving out a world of important things.

Because of this, please don’t persist in telling me what I believe after I have confirmed I don’t believe it. It doesn’t matter if you come up with ten separate examples of words you are totally certain prove I believe something or come at it from a certain viewpoint. If I say I don’t, then I don’t.

To get back to the way I think, I am not even certain I have “beliefs” (even if I use the shorthand as if I do). Once you peel back the layers of language that I use for communication… I have observations and experiences, I have patterns of observations and experiences, and so on. “Belief” seems to require jumping up into language again. So do many other concepts that seem more language-based than anything. Language forces me to use many concepts that have nothing to do with the way my mind works when I am not writing. Those concepts form weird mesh-like frameworks in people’s heads and they then associate me with the mesh-like frameworks instead of with the person beneath them. (And it’s not just me this happens to, but everything.)

But if you look between the words (not the same as between the lines), rather than at them, you can start to see things far more interesting than the words themselves. (This is not abstract. This is as concrete as it gets. The words are the abstractions.)

The use of language has the annoying property of insisting on the reality of lots of abstract concepts. Even seemingly concrete words like “green” are arbitrary, and different languages will divide the colors different ways. (The Irish language, I am told, has more than one word that translates as green and one of them involves colors that in English would be specific shades of green, grey, and brown.) Whereas just looking at an object of certain colors doesn’t require figuring out how any given language classifies them. So literally anything I perceive has to go through a horrid process of translation and distortion and oversimplification. Even the most “literal” language is hopelessly abstract compared to what language is trying to describe.

Every single time I write, I pick up a set of tools. Those tools are the phrases I cobble together into sentences.

“Subtype of autism” is one example of such a tool. It is a shorthand for certain people that I have made certain observations about.

Just because I happen to use the nearest available set of translation tools does not mean I have, in picking up those tools, agreed to the entire worldview of the people who built the tools. I don’t have to agree that autism is a real thing, or that it is not socially constructed, in order to use phrases that include the term. I use these tools because the alternative is silence, not because I have picked up an entire set of beliefs about the world with every phrase I use.

Even more, my failure to describe something does not mean I haven’t observed it. A friend once told me that she envisioned my brain as having these enormous clumps of detailed information, but without a way to access most of it. Most of what I know, I can’t say. What I do say is just an approximation of a sliver of what is in here. Notice how much trouble I had describing part of the history of autism. Even when not sick almost all my attempts have looked similar. Does this mean I lack awareness of what has happened? Does this mean I view autism as a concrete reality, as a type of neurology, as all these other ideas words bring in? No. Not even if I use the word “neurotype”. I know this can be hard to understand but it’s true. No matter what I say will leave out 99% of the information and distort the rest. Don’t be fooled by words.

All of this is just a reminder for everyone, of how and how not to read the words I write. I am not trying to force anyone, or to say everyone is able to do this. I am just trying to give a reminder of how I do and don’t work. If it doesn’t make sense, don’t sweat it. It’s hard to get words to make sense on a topic as completely opposed to words as this one. It’s a little bit like seeing antimatter and trying to use matter in it’s vicinity. The fireworks are interesting.

DIY Communication Devices

Disclaimer: This is about a communication device that Anne helped me set up as a backup communication device (all my other backups — mostly bought used, some bought broken to replace parts in dead ones — have by now long since died or otherwise become unusable by me). Make one of these things at your own risk. Before you buy it, look into it more, understanding that so far neither Anne nor I have figured out how to get full functionality out of the software, and that it involves various vaguely techie stuff like looking for DLL files to download and stick in the right directories and stuff, or the thing simply will not work at all. And this device may be totally unusable to some people for a number of reasons that have to do with the size and shape of the machine, input accepted, etc. It’s not a replacement for a primary communication device either, but an excellent backup for some people, and for other it might be what they’d have to settle for until and unless they got something better.

Anyway, none of my backups work well enough for me to use at the moment (most don’t work at all), and even my main communication device is well-nigh impossible to use with the telephone in my house because of pesky things like logistics, priorities, and the laws of physics.

But I thought this sort of thing would be useful for anyone who has speech difficulties, whether it’s a physical thing, a cognitive thing, an emotional thing, or whatever. Anne said she’s thinking of publishing a guide on putting one of these things together, and that sounds like a good idea to me.

The best part about this is that all the parts can be found used and/or refurbished. This is a good thing because a huge number of disabled people are one or more of the following:

• Under, at, or near the poverty line (unable to afford new equipment, might be able to afford old equipment)
• Unemployed or underemployed
• Uninsured or underinsured
• Severely doctor-phobic (either because of the same condition that causes the speech problem, or because many disabled people have been so badly abused by parts of the medical profession that we end up fearing the whole thing)
• Unable to speak (or speak clearly) for reasons that insurance wouldn’t cover, that medical professionals want them to ‘just get over’, or that would mean discriminatory treatment if people found out the reasons. (For instance, someone so anxious they can’t talk to supermarket clerks might find a medical professional unwilling to get them a device, even if the supermarket problem logistically needs to be solved before the anxiety problem can be solved; alternately they might encounter potentially life-threatening medical discrimination if their doctor found out they had a problem most people consider psychiatric.)
• Intermittently unable to speak, which sometimes means insurance won’t cover it (although insurance funded my first device while I still had intermittent speech that was superficially good the moments I had it)
• Under insurance plans that only let them have one device for a huge variety of situations, including situations where you really need a small and lightweight device (when your normal one might be big and heavy for good reason)
• Speech-related trouble that is so mild that insurance wouldn’t cover it, but that still impact the person’s life heavily enough they want an alternative.
• Etc.

So basically, not everyone can get a device. This isn’t a perfect solution because it still costs money and not everyone has money. But something you can get for anything between $100-400 depending on where you get things and how lucky you get, is still better than getting a worse device for $2000 (yes, I have seen far worse for that amount of money).

The parts are:

• An HP Jornada of the sort that have a keyboard. (Mine’s a 728, Anne’s is a 720.) Although technically this could also run on something that takes a stylus, as long as there’s an onscreen keyboard (in fact parts of it run better on standard PDAs than on this series of Jornadas). I’ve seen these things go for anywhere between $10 and $250, and obviously a lot depends on the condition and where you’re getting it, and also whether you need to buy a new battery for it or not.
• An external speaker that will have louder sound than the PDA itself (because the PDA has very minimal sound in most situations you’d wnat to use one in), and high enough quality to carry the voice. Anne and I both independently came to the conclusion we’d get Altec Lansing orbits, but there are undoubtedly better things out there than this, especially for people with coordination problems or hand weakness given how it turns on and off. I’ve seen those go for anything from $5 to $100.
• A voice from Cepstral ($20 each, I picked Callie, Anne picked Diane)
• A couple of DLL files since Jornadas usually run Windows Handheld 2000 and the software is written for more standard Pocket PCs. It’s specific versions, Anne and I are testing a lot of them to see which ones are best. They don’t provide full functionality of the Cepstral software, but then again that might be a screen shape issue. Full functionality, however, is nice, but not necessarily needed.
• Velcro (Anne’s method so far), duct tape (my method so far), or some other means of affixing the speaker to the back of the Jornada.

And here’s the result:

My hands are there for size comparison, though the angle can make that confusing. Be aware I have small hands.

I have not yet got a video for it, and don’t hold your breath waiting, I haven’t been good at making videos lately at all.

Anyway, the plus side so far (some of these would be drawbacks for other people):

The portability. Sometimes I don’t have the energy, time, and/or inclination to lug a Dynavox around.

The size. Which is the reason I can’t use the Dynavox on the phone at the moment with other logistics and priorities within my apartment. Practically the moment I got this thing together, I had to make a pretty high-priority phone call to one of those services that calls you back later. I hadn’t been able to take those calls by myself in ages. So I didn’t get it a moment too soon.

The battery life seems pretty long so far. I have heard it’s longer on a 720 than on a 728, presumably because the 728 has more memory (AFAIK the only difference between the two). I haven’t had time to test this.

Keyboard size. I have tendonitis and not having to move my hands as far is really helpful. (I can’t imagine ten-finger touch-typing on this with large hands, I’m not even sure whether people with average-sized hands can do it or not.)

The shallow and light keys. The combination of tendonitis and hypermobility makes me dislike any key that’s hard to press. These are very easy to press. (Which might be a pain for someone who wants a lot of tactile feedback when the buttons are pushed.)

The minus side so far:

Some of the menus cut off halfway down, Anne and I have not figured out a way around it. (If anyone is willing to help us find something that allows us to either scroll the desktop down past the bottom of the screen, or take an already-running program and wrap anything going off the bottom of the screen onto the top of the screen, let one of us know. If anyone’s able to program a better-suited either cheap or freeware frontend to the Cepstral voices with the same functoinality, also let us know. This, among other things, is preventing us from saving our voice configurations, we have to slow down the voices and (in my case) lower them a little, every single time.)

The external speaker is hard to turn on and off, due to having to grab it and twist in a very particular way. It seems like it could break easily too, and it’s gotten stuck in between on and off several times.

The DLLs were a pain to get, both of us had to do them from scratch. We might provide better information on that later.

I don’t know that this will be a problem for me or not yet, but I’m not sure how durable this thing is. I no longer fling communication devices at walls or bash them on my head, but I’m still given to forgetting I have a hand, and consequently dropping things as my hand reverts to neutral or fails to correct for some other movement.

I haven’t figured out a way to mount it to my wheelchair yet, let alone at the right height. I wonder whether cannibalizing a mount-plate would be feasible, or whether that’d introduce other problems (it’d have to be able to come on and off even the mountplate quickly, because it has a USB cradle it has to fit into for charging and communication with my computer). Don’t know yet.

I have not yet gotten Ubuntu linux to recognize the Jornada as even existing, let alone talking to it. Still working on it. Haven’t yet tried using wine, I just booted to windows altogether.

I have also not yet tried finding the equipment to plug one into the phone directly. You can buy a thing from Radio Shack for about $15ish IIRC, that is meant for recording telephone calls with and playing tapes back over the phone. You connect it to the phone, flip it into “play” instead of “record”, plug it into the headphone port of the device, and you have a real (if sometimes awkward and ungainly) means of using a device’s sound output directly into the telephone. Depending on the situation an amplifier might also be necessary in between the communication device and the previous doohickey I just explained (I don’t know the word for them).

Anyway, I’m very happy with it so far despite its shortcomings, and looking forward to being able to improve on it. I am sure many variations on the same theme can be made, some of them more cheaply than this, some more expensively. Cepstral is a great source of cheap voices. Joel has made JTalk software to be used with different voices, on a different platform. Neither his nor Anne’s projects are intended to replace a person’s primary mode of communication, there’s too much that could go wrong that way. But as a backup or supplement to another means of communication, they can be excellent, and I’m very happy with it.

How to communicate with people who insist that everyone communicates in multi-layered and manipulative ways?

(Please note that this is mostly a discussion of things that have happened offline recently. If you read this, you’re not likely to know anyone involved.)

I’m not sure what to do in situations where the purpose of someone talking to me is not to communicate, but to do something else.

I’m not talking about the relatively common phenomenon where someone with trouble understanding language might not use language for the standard way or the standard reasons. Autistic people often have that problem, I’ve had that problem, it’s different from what I’m about to discuss.

I’m talking about people who seem to have no trouble understanding words, but who introduce far too many levels of meaning and manipulation into what should be the process of communication.

I’m also not talking only about non-autistic people, nor universally about non-autistic people. I figured I had to add this because frequently when autistic people talk about something they don’t like in someone else’s communication, it becomes an “autistic vs. NT” thing whether they say it explicitly or someone else reads it in. This isn’t. I’ve seen autistic people do similar things, and the vast majority of non-autistic people don’t think like this.

I’m also not talking about people who do this only very occasionally when under a lot of stress, nor am I talking about situations in which it’s perfectly legitimate to assume that a lot of indirect communication is going on.

I’m talking about people where it’s their habitual communication style to… well, one person I know offline described the communication of someone else offline as having several “layers”, similar to the following (they described it a little differently, I’m adjusting it to a different person I’ve met recently):

• The literal meaning of what it is that they are saying.
• The implication of what it is that they are saying.
• What their actual thinking is (often different than either of those).
• What they want other people to read into what they are saying.
• What actions they want other people to go through after hearing what they are saying.
• What hierarchical status they want to maintain for themselves and the person they are speaking to.

And then, the person assumes that no matter who they are talking to, all of these different layers to communication exist for that person as well. They can’t seem to understand that most of the world doesn’t operate on this extreme a level of manipulation or hidden meanings. Yes, there are unspoken assumptions behind all communication just because of the nature of language, and the impossibility of speaking in Entish (I always thought Entish must be endlessly recursive). But most people don’t constantly try to deliberately twist the purpose of communication into a pretzel to get people to do what they want.

It’s difficult for me to come up with exact examples of conversations that have worked that way. I can remember many such conversations, but what I can’t seem to do is make up conversations based on them. The reason I can’t, is that I am horrible at reading those hidden layers of manipulation into innocent statements. So it’s difficult for me to come up with a plausible reading of those things.

That’s one of the reasons those conversations are so frustrating to me — I cannot anticipate what someone like this will think of my statements, nor can I adjust my statements to convey the right hidden meanings. I know someone else who doesn’t like conversations like this either, but she can at least match the other person’s passive-aggressive tone, and people like this often leave her alone — at least to her face — because she out-argues them in their own language.

It’s also difficult when it’s really necessary to talk to someone like this, or to ask them questions. For instance, if someone like this is doing it on the job, there’s often no way to get around having to interact with them.

There is no possible way to make a straightforward statement around someone like this. They will read into it several layers of implied meaning, most of them manipulative, many having to do with where you position yourself on a social hierarchy, and many of them to do with your wanting something out of them.

One conversation I had with someone who wasn’t always this way but was this way more often than was comfortable, went like this. I’ll call them Barbara (the person with the sometimes-unpleasant communication style) and Cindy (a mutual friend of ours). Beware: drama ahead.

Barbara was talking about how Cindy was a kind and generous person, and had helped her in a number of ways.

I completely agreed with Barbara, and said she’d helped me out a lot too. As far as I was concerned, there was nothing unusual about this statement. It complimented a mutual friend, it said what a generous person she was, and it agreed totally with Barbara. I couldn’t conceivably see any hidden meanings in it, and so I was stunned by what Barbara did in response.

She became visibly irritated. She acted as if what I had said was somehow related to how I thought Barbara must think of me. And she grudgingly told me that of course she liked me a lot too, not just Cindy. I can’t remember her exact wording, but she really seriously believed that my statement in that regard had somehow mysteriously been a commentary on me thinking that Barbara did not like me very much.

And in reality, Barbara didn’t like me very much. But I had no reason to comment on this at that or any other time — I rarely talked to Barbara at all, and didn’t mind that she didn’t like me, especially because she was the sort of person that made me automatically wary anyway. But she would never admit it to me — she would only tell friends of mine that she didn’t like me, in fact that at times she hated me.

So somehow, when we were talking about both of us liking a mutual friend, she interpreted my statements that were clearly and directly about our friend, and entirely complimentary, as having a hidden meaning about whether she herself liked me.

If I thought really hard, I could come up with at least a tenuous chain of circumstances connecting all this. Because Barbara had actually attempted to manipulate things to separate Cindy from me. It hadn’t worked, and had backfired into losing some amount of trust from both of us. So I guess in some really roundabout manner a person could read into my liking Cindy, that I somehow knew Barbara didn’t like me and wanted her approval of me. But I only figured that part out today, years after all these events had come and gone. Because that wasn’t even a part of my motivation, wasn’t even in my mind.

I suppose that’s a simple example because the conversation involved was very short, and did not get into the layers of complexity that conversations with people like this can reach if the conversations are drawn out over a long time. They also become more complex from my end because over time things can shift around, so that one moment I am picking up the tone and dropping the words, and another I am picking up the words and dropping the tone, and that all makes keeping up with even the literal content of conversations like that challenging.

More recently I had one of those conversations, offline, with someone. I was communicating solely in order to give and receive information to make sure something was going to happen that was supposed to happen. I had non-autistic witnesses who said that I was in no way what would ordinarily be construed as rude or hostile.

However, this person read deliberate hostility into my every comment and proceeded to engage in an impressive flurry of passive-aggressive nastiness. She managed to convey that there was no reason that I needed the information and no reason to even speak to someone who communicates as slowly as I do (I was having someone read my computer screen to her), to interrupt me frequently when she knew I was typing responses to her, to assert her dominance and superiority on a regular basis, and to treat me like a waste of time and space. She also told me at one point that a conversation I was trying to clarify (that I’d had with someone else) had happened right in front of her, so she knew everything there was to know about that conversation (even though if she did she’d have to have been listening in on my end) and had no need to discuss its content. And even attempting to discuss its content was an act of hostility as far as she was concerned. She also engaged in a whole lot of non sequiturs — saying things about other people that had nothing at all to do with the situation at hand, but that she was trying to use to manipulate us into dropping the conversation altogether.

The person who was there reading the computer screen was stunned and appalled at her way of communicating. But it turns out she’s like that to most people, at least most people she sees as beneath her most of the time.

It’s impossible to have an exchange of literal information with someone like this. I can say “I really mean exactly what I say, I’m not implying anything else, I’m just trying to exchange facts with each other so we’re clear on what to do about something, this is a purely practical conversation and I don’t mean anything good or bad about anyone in the course of it.” And I can say that more concisely, or more elaborately. But when I say it, people like this will even read into those statements something that wasn’t there, and will continue to refuse to just talk about the information.

Another amazing thing about conversations with people who do this, is that once they have decided that I have hidden and sinister meanings behind my words, then there is nothing I can say that won’t be put through that filter. If I pay someone like this a compliment, they seem not to even notice: They even assume there’s an insult hidden behind the compliment! If I agree with the person, then there must be an insult hidden within the agreement! It becomes absolutely impossible to convince someone I’m not insulting them right and left, because the insults are there to them whether they see it or not.

And I’ve noticed that when that particular pattern of “there must be a hidden layer of meaning to everything I say, and usually a bad one” occurs in someone who isn’t just wary because of prior bad social experiences… it’s usually someone who manipulates people all the time. It’s usually someone who’s incredibly passive-aggressive, and who mostly communicates in ways tailored to manipulating other people rather than to simply exchange information or reinforce social bonding. Sometimes it’s manipulating people into actions, other times it’s simply attempting to manipulate everyone they know into liking them. But it’s always that sort of communication on way too many layers and expecting everyone else to do the same.

I don’t communicate on that many layers, at least not layers of that kind. I haven’t the foggiest idea how to communicate with people who do. Whether they’re autistic or not, their communication style is impossible for me to predict or decipher, and I have absolutely no clue how to say things in ways that they’ll understand the meaning rather than making up five or six layers of complication into it. I can’t even figure out how to say things in ways where they’ll take the imaginary layers as positive rather than negative. It’s just a complete mystery to me.

If anyone else has clues on how to communicate with people like this, please let me know.