Reviving the concept of cousins.

Someone decided this was going to be Autistic History Month.  I had another contribution I was going to write.  In fact, it’s already almost written.  But I ended up writing this instead.  At first glance, it seems to be specific to autistic people.  But while it applies to autistic people, it also applies equally well to a lot of other disabled people, so it’s not necessary to ignore it because you’re not autistic.

There’s something the autistic community^⁠1 has lost.  And I think it’s high time we got it back, possibly in an improved form.  It’s the concept of cousins.

It started with a man who had hydrocephalus.   I met him once, after the events I’m going to recount were already in the distant past.  But I’m leaving his name out in the interests of privacy, given that when he wrote about these events in Our Voice^⁠2 he used a pseudonym.  Anyway, I think he came to the autism community, and later the autistic community, because he was a professional whose job involved autistic people somehow. But I don’t know for certain.

What I do know, is once he discovered the autistic community, he stuck around.  While he always made it clear that he wasn’t autistic himself, he found that he identified with autistic people a good deal due to his hydrocephalus.  Autistic people, likewise, found that they could identify with him.

At one point, there was an autism conference where a lot of autistic people attended.  Including Kathy Grant (now Xenia Grant), one of the co-founders of Autism Network International.  Jim Sinclair, another ANI co-founder, was there as well, along with several other ANI members.

To understand the tone that all of this took place in, it’s best to understand a bit of Xenia’s personality.  She is possibly the friendliest person I’ve ever met.  She’s also one of the most unapologetically autistic-looking people I’ve ever met: She looks autistic (in physical actions, in conversational topics, in what parts of the world she reacts to and how), she knows she looks autistic, and she has no problem with this at all.  And she has such an infectious exuberance and enthusiasm for life that it’s hard not to be cheerful when she’s around.  All this adds up to the fact that I’ve never met or heard of anyone who didn’t like her.^⁠3

So anyway, I’ll let Jim Sinclair tell the story, since xe was there and I was not.  This is excerpted from xyr long but important article, Autism Network International: The Development of a Community and its Culture:

Another development during the 1993 conference was the recognition of a new segment of the ANI community, and the adoption of a new term to refer to it. One of the people who had been corresponding with ANI members online, and was attending this conference to meet with us in person for the first time, was not autistic. He had hydrocephalus, another congenital neurological abnormality. In our online discussions he had been noticing many similarities between his experiences and characteristics as a person with hydrocephalus, and the experiences and characteristics of autistic people. At the conference he met Kathy, who was not online at the time and did not know who he was. He introduced himself to her, explaining that he was interested in exploring similarities between himself and autistic people. He briefly summarized the effects of hydrocephalus in his life. Kathy considered this for a moment, and then warmly exclaimed “Cousin!” (Cousins, 1993). From that time on, the term “cousin” has been used within ANI to refer to a non-autistic person who has some other significant social and communication abnormalities that render him or her significantly “autistic-like.” The broader term “AC,” meaning “autistics and cousins,” emerged soon afterward.

The term AC is further documented on Jim Sinclair’s personal website:

Cousin refers to a person who is not NT, is not quite autistic, but is recognizably “autistic-like” particularly in terms of communication and social characteristics.  Some conditions that may lead to cousinhood include Tourette syndrome, hydrocephalus, Williams syndrome, and some learning disabilities.

AC stands for “autistic and/or cousin.” “AC” and “cousin” are sociological terms describing status within the ANI community, rather than clinical diagnostic terms.

[from A Note About Language and Abbreviations Used On This Site by Jim Sinclair]

As I’ve noted many times before, the online autistic community often has a very short memory.  I can remember when ‘cousin’ was a well-known term and used widely, even outside of ANI-related circles.  And then, gradually, its use died out and a lot of people seemed to forget — or not know in the first place — it had ever existed.

I only ever saw one criticism of ‘cousin’ that made sense to me.  And that was more about the way people used the idea, rather than the idea itself.  This was, that people used ‘cousin’ in a way that made it sound like autism was the one central way to be neurodivergent, and everything else was judged by whether it was similar to autism or not.

If the ‘cousin’ idea is brought back, I hope that it won’t be seen as exclusive to autism.  It can be used for practically any form of neurodivergence or similar experience of the world.

For instance, I experience delirium pretty regularly if I get sick enough.  This is because, as far as anyone knows anyway, delirium leads to brain damage, which leads to further susceptibility to delirium.  This is especially true for severe or prolonged delirium like the type I’ve experienced at times.  Delirium is a set of cognitive and perceptual changes brought on by a physical illness or injury of some kind.  The part about being directly linked to a physical problem is important.  The cognitive problems can range from mild confusion or disorientation, all the way to hallucinations, delusions, and large chunks of time lost altogether.

On a purely medical level, there are important differences between delirium and psychosis.  Some of those differences are subtle, and some are pretty dramatic.  Failing to distinguish them medically, could lead to death in extreme cases.  But experientially?  When I talk to people who have experienced psychosis, their experiences are closer to my experiences of delirium than any other group of people I’ve met.  So you could say delirium is a cousin of psychosis — the differences may be important on a medical level, but when it comes to understanding my experiences and how to deal with them, people with psychosis are the most likely to understand.

I’m going to quote one part of what Jim Sinclair said above in xyr definitions of AC and cousin, again, just to emphasize it:

“AC” and “cousin” are sociological terms describing status within the ANI community, rather than clinical diagnostic terms.

That means the important part of cousinhood isn’t what your diagnosis is.  It’s whose experiences you identify with and gain meaning from.  I’m not sure it’s a coincidence that at the same time that ‘cousin’ started disappearing as a concept, large parts of the autistic community became less focused on being a community of people who support each other, and more focused on being as exclusionary as they could get away with.  To the point where I’ve run into people who worry that they’re not ‘autistic enough’ to flap their hands when they’re happy, and that flapping their hands would be the equivalent of cultural appropriation.  Because people have told them that, or said things like that in their presence, enough that they’ve completely internalized it.  As if autistic people have some kind of monopoly on hand-flapping.

I’ve said this many times before, about concepts like autism itself:  These concepts are only useful inasfar as they help people.  That can mean:

• helping you understand yourself better
• helping you understand other people better
• helping you meet people who are more likely to resemble you in ways that are important
• helping you obtain services you need in order to survive, get a job, get an education, get legal help if you’re discriminated against or targeted for hate crimes, etc.
• helping you advocate for yourself if you run into accessibility problems
• helping you learn skills that you would otherwise find too difficult to learn, as well as skills you may never have heard of without meeting other people like yourself
• helping you in all kinds of other ways, the point being, these are good things in your life, rather than destructive things in your life

On the other hand, these concepts can hurt us, and that’s where they become dangerous.  This can mean:

• people becoming snobbish about being more autistic, or less autistic, than other autistic people
• people defining the boundaries of who counts as autistic and who doesn’t, for reasons that have entirely to do with their own egos and insecurities
• people trying to put limits on what you are allowed to be able to accomplish in your lifetime, and still be counted as autistic
• people excluding you for no other reason than that you’re autistic
• people treating you as subhuman, an unperson, because you’re autistic
• not believing yourself to be fully a person, because you’re autistic
• limiting your own ideas of what you’re capable of, because you’re autistic
• forcing yourself, or being forced by others, into fitting certain stereotypes, because you’re autistic
• feeling like you have to pretend that certain stereotypes don’t apply to you, even if they do, because you’re autistic and you feel like you “shouldn’t” be too stereotypical
• feeling like you have to defer to professionals who have studied people like you, in describing your own life, because clearly they know more about autism than you do, which means clearly they know more about you than you do
• harming you in all kinds of other ways, the point being, these are destructive things in your life, rather than good things in your life

And you can substitute nearly any other category of person in place of autistic up there.  The basic pattern works the same:  Pretty much any label that defines a group of people, has the possibility to do good and the possibility to do harm.  The only times there’s any point to using the label in question, is when it’s doing something good for you or other people.

Bringing people together with words like ‘cousin’ allows people to identify with autistic people, without putting pressure on them to figure out instantly whether they are actually autistic or not.  It allows people to acknowledge that most skills and difficulties autistic people experience are not totally unique to autistic people.  It allows people to acknowledge the vast grey area that is both outside of standard definitions of autism, and outside of neurotypical, but that resembles autism in important ways.  It allows people to acknowledge that the boundary between autistic and nonautistic is fuzzy at best.  And it does all that while contributing to people understanding more about themselves and each other, and bringing people together into friendships, communities, and other relationships they might not otherwise have.

So I really believe that it would not only be a good thing to remember the word ‘cousin’ and what it used to mean, but to revive it and expand its use for more than just autistic people.  It allows for so much more flexibility than people are currently given about a lot of different identity groups, and that’s important.  So if you like the idea of cousins, by all means, use it and adapt it as much as you want, for whatever groups of people in your own life you think it would best apply to.

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¹ For the purposes of this article, ‘the autistic community’ refers to relatively mainstream online self-advocacy and sociial communities made up mostly of autistic people.  There’s a lot of different autistic communities out there, both recognized and unrecognized, online and offline.

² The newsletter of Autism Network International.

³ Actually, come to think of it, I’ve heard of exactly one person who didn’t like her.  It was a self-loathing person with autism who said they were embarrassed by her.  That’s an unfortunate but common reaction that those of us who are visibly “different” get from other people who want to forget their own difference, and who find that we remind them too much of parts of themselves they’d rather forget.  But for someone as social as Xenia, to have heard of only one person who disliked her for her unusual mannerisms and reactions to the world is a testament to her extremely friendly personality.  Ordinarily, if I mention Xenia to anyone who’s met her, they sort of light up inside just remembering her.  I don’t think it’s coincidence that someone that friendly is the one who thought up the concept of a ‘cousin’.

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?

It’s scary to let go of words, when you’re trapped inside them.

Because there’s a moment when you’ve let go of the words
And you realize that once you let go, they won’t come back
And you’re hanging in the air between the words and the ground
And you don’t know how high you are in the air
And you don’t know how hard you’ll hit the ground
Or how many bumps and bruises that will cause
Even though you always feel better with your feet on the ground
And you desperately, desperately want to be on the ground smelling the earth
But you’re afraid to fall
And you’re afraid to hit
And you’re afraid how much effort it will take to get back in the air
Or whether you can get into the air at all
So you cling and scrabble
Until your fingers break
And you hit the ground fifty times as hard
And stay there fifty times as long
Too stunned to take in
Everything you normally appreciate
About being on the ground

Blogsy

I pretty much never write posts like this. But the reason I've been able to post more recently is an app called Blogsy. I really have trouble using the WordPress site, and even the WordPress app for some reason. I've had trouble learning to use Blogsy, but now that I know how to use it (for WordPress at least), it makes things very easy in ways I didn't know were possible.

I don't know if it exists for other platforms, but it exists for iPad, which is my primary communication device (using Proloquo2Go) these days. I've heard of it existing for iPhone and iPod Touch, but I've heard the opposite too, and I don't see them in the app store, so I don't know what's going on there.

For some reason I don't understand, it also makes it enjoyable to post things. That seems like a weird thing to say. But for whatever reason, it happens to be true. I don't know if that's because of me, the app, or both. And making something enjoyable doesn't always make it possible to do something, but it at least makes it easier.

It's the sort of thing where when I was younger, I used to type random things into word processors and stuff just because using them was fun. If I'd had a blog when I was a kid, and this app was around, I doubt anyone else would have enjoyed reading it. Because I would mostly be posting random stuff just to use the app. This post of course couldn't possibly qualify as a slightly more complicated version of the same thing. ;-)

Posted with Blogsy

Making everything clear.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Posted with Blogsy

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.

 

Words that bite my brain

I can’t stand these words.

Words that cause a range of cognitive pain for me.

At minimum, there’s a sense of them pulling me diagonally. I may understand the meaning, but they still strike me wrong. If I do understand them, they cost cognitive effort to figure out. Not the kind of effort that anyone should be expected to put into understanding things that are difficult for them. That kind of effort is effort I’ve already spent understanding regular words. This effort is beyond that and is destructive to my ability to do other things I have to do. Have to as in have to, not as in “feel like doing”.

Then the worst of these words. There is little to no understanding here. It feels like a miniature explosion in my head every time I read them. I can’t find another way to put it. And the pain they cause, although not physical, is quite intense and feels like a cognitive version of nerve pain. Anyone who’s had serious nerve pain will know how bad that is.

Most of the words are ones I rarely if ever use. But some of these are words I can bring myself to use, some of the time. Some are even words I’ve coined. That doesn’t seem to matter though, they still hurt my brain. So don’t assume that my using or even coining a word means it being easy for me or expecting everyone to like or use the word.

I will say that these are words commonly used in communities that call themselves “social justice” related. The reason I put “social justice” in quotes is that, as a word in the midrange of mental pain levels, I can’t quite bring myself to write it down as if I were using it. That would make it look like I know what it meant. (Not that that always stops me from using a word, but it often does.)

There’s a reason, though, that I’ve abandoned the idea of writing most of these words down in public, in this post.

Because when I’ve brought it up in the past, I’ve gotten a variety of pretty offensive responses.

People patronize me.

They treat me like not knowing these words is a sign of some kind of privilege.

They openly brag about their extensive knowledge of the subjects the words refer to.

They assume because I can’t handle or don’t understand or outright get pissed at the existence of a certain word, then I can’t possibly know anything about the subject the word is supposed to refer to.

They try to patiently teach me the meaning of the word, ignoring me whenever I try to explain that this doesn’t work with this kind of words.

They suggest that I don’t like the words because I don’t experience the kind of oppression that the words were built to describe.

They sigh and roll their eyes and get scornful. Because I’m obviously just some noob who wants everything explained to me (possibly because of an overdeveloped sense of entitlement).

Often their reaction is more than one of those things combined. “Well I for one totally know what the word means. I’m an expert in that area. I guess you are just too privileged to understand. But here, let me try to explain anyway. (As if I should have to.)”

I know it’s not about that, though, because often I know what the word is trying to refer to. I just can’t connect that meaning to the word without a lot of effort and pain. And the connection is never really complete.

Let me just say straight out that I would rather deal with one person who gets words “wrong” (and may even use lots of words deemed offensive due to not being able to keep track of that kind of thing) and may sound “clueless” to the social intricacies of communities or the meaning of words, but has good ethics and a grounded sense of reality; rather than a hundred people repeating all the right words with only a superficial take on the issues at hand and a tendency to want to blend in more than to solve real problems.

I only decided to write this post after seeing other people mentioning their own problems with this kind of language. Not identical problems, but clearly I’m not the only one who finds these words difficult. I’ve seen suggestions that these kind of words can shut people out of the discussion, even if that wasn’t the intent. I have to agree. I also saw someone who had an extreme emotional reaction to a similar set of words, and they wondered if their brain was responding to something real… like something about how people turn words into some kind of rigid ideology, and I have to wonder about that too.

[Note: I may be unable to quickly process comments starting very soon and then for a couple weeks minimum, so please don’t be alarmed if your comments don’t show for awhile.]

What I mean by “beneath” words.

I was trying to explain to someone what it meant when I said that I spend  so much time “beneath” words, and have to climb up to them from below. And it hit me that I could depict all of the different layers I go through one on top of the other. I once depicted them (but not all of them, and not showing them as layers) before, so I already knew some of how to do this. I used cut out pieces of construction paper to do the top six layers, and paint for the bottom two.

I’m numbering the eight layers from bottom to top, but describing them from top to bottom. So I am going to start with the eighth layer.  Also these are the layers for written language specifically. Some of them do correspond to spoken words.  

The eighth (top) layer shows the words, “Don’t you know another”. It could be any words, but after not having a clue which to use, I chose the start of a sentence that a guy in an emergency room told me when I was a teen, after I was picked up very overloaded in public and humming one tune over and over to calm down. (He was in that mode people get in when you’ve become unable to talk so they suddenly decide you’ve become unaware of your surroundings too, and they mutter at you in a specific tone that seems to assume you will never tell anyone what they said.) These words represent what happens when you understand the words perfectly well.  

The seventh layer reads “melly doxel rin tunsh”. It represents being able to recognize the sounds a word might make, but not being able to understand their meaning. Whether or not you know that words can have meanings (I didn’t know that when I learned to read, and had skipped over some layers entirely that only became meaningfully separate later).  

The sixth layer reads “ncj fv rztlh xlm hnnc”. This layer involves recognizing the letters as letters, but not deriving sounds from them. 

The fifth layer shows a series of symbols such as circles, squares, zig zag lines, and other shapes. They are arranged as if they form words with spaces between them. This represents recognizing the letters as symbols, but not as recognizable letters.

The fourth layer shows a series of small slightly wavy lines, arranged in a pattern. This involves recognizing the letters as separate things, but not recognizing them as symbols. 

The third layer shows a bunch of joined together lines. This represents seeing and noticing a black pattern on the background, but not really separating out the pieces. 

The second layer is painted. It shows a variety of shapes, some recognizable and some not, some vague and others clearer, all blending into each other and the background. The photo has different colors than the real object due to the flash, for instance something medium green came out almost light pink. There is some loss of the actual multilayered texturing that’s in the real one too.  This layer represents just sort of seeing a lot of shapes and colors and visual textures, and the patterns those things make, and not even noticing the text at all.  Although it’s by nature visual, this is usually happening in all the senses at that point. 

The first layer is gradually and unevenly shaded into by the second layer. It shows a textured black background with a white circle in it. This is when not even sensory impressions make much of a dent in conscious awareness. The white circle is meant to show that even though this may seem completely blank in some ways, it’s not as empty as it may seem. (When things seem totally empty I feel “disappeared”. I did not attempt to draw this, but it would be zero.)

The things I drew were usually somewhat arbitrary. It would be possible to include more or fewer layers, or things “off to the side” that don’t fit into a simple sequence. I drew this to communicate a basic idea, not to do a perfect representation of everything.  There are doubtless layers above eight too — but I drew this to show what is beneath what most people think is the most basic, not to show all the different levels that fluent reading can take.  

Anyway, in different people who experience all these layers, things may work differently. For instance someone might live in the sixth layer, climb to the seventh layer easily, climb to the eighth layer with more difficulty, fall back to the fourth layer during ordinary shutdown, and the second during more severe shutdown. Such a person will have a very different experience of each of these layers than I do (for instance viewing the second layer as total confusion instead of comforting, familiar, and easily navigated).  And a second person may live in the sixth layer also but never make it to the eighth and have great difficulty with the seventh. And someone else may live in the fourth, and climb to the seventh easily by skipping the fifth and sixth altogether. 

I generally live in the second and first layers. This is where I am comfortable and have the widest experience navigating. I have a lot of experience built up there and it isn’t disorienting.  There are things that can disorient me during shutdown but they aren’t part of the scope of something about reading and are hard to depict. And then there’s layer zero during shutdowns. 

Climbing up to layer three and four can be done with some effort. It’s not always possible but it’s easier than the things above it. 

Layer five has a barrier that takes much willpower and effort to push through. Layer five is when things become pretty painful. It’s like each time I look at a symbol and recognize it for one, it burns my brain and squeezes on other aspects of thought until they run off and hide. 

There is a similar thing that can happen to me when at a similar layer in perceiving my surroundings in general. For instance, I might pick out anything circular in my surroundings and each circle I see hurts my brain the same way.  And in listening to my environment, I will generally pick out a really annoying and short musical rhythm or tune from the sounds around me, and hear it boring its way into my ears over and over. 

Past that barrier, things might be hard but nowhere near as hard as going through that barrier is.  Sometimes I go to the sixth level and sometimes I skip it and go straight to the seventh. 

Between the seventh and eighth there is another barrier. Not as big as the barrier between fifth and anything below it, but still recognizably difficult. My guess is that’s because putting actual meaning into the words is very different from, say, matching a set of sounds to a set of visual squiggles, which is just pairing one sense with another without having to match it to concepts. 

(The concepts themselves are usually not one word at a time. It’s more like, what set of words goes the most often with what set of experiences, and then which patterns of word orders and such go with which others.  And then skip the words you don’t understand (more than you might expect) and take what’s left and hope it makes sense.)

Anyway, obviously most of these layers involve climbing, and some parts of the climb are steeper or more difficult than others. But often I will find that it’s impossible to climb any higher than a certain point no matter how hard I try. Other times it’s impossible to climb because I entirely forget that the higher layers exist. Frequent cutoff points for both of those are between two and three (the point where the text is noticed), four and five (the point where symbols are recognized), and seven and eight (the point where meaning of words is introduced).  

Additionally, most of the time I let go I fall down to at least the second layer if not the first. Sometimes I fall down to the third or fourth instead. But there are two really terrible things that can happen instead. I can get “stuck” in one of the really painful areas. 

Getting stuck in the fifth layer happens sometimes. It’s as if the symbol-recognizing thing in my brain has so much momentum that it takes time for it to stop and drop down to something easier to take. Everywhere I look there are symbols. And every symbol noticed is pain. There is no way to stop this except to ride it out. 

But even worse is getting stuck at the eighth layer. This happens if I read or write too much without falling back to the lower layers to rest. I described this layer as the one where meaning is added. But I meant this only in the sense of matching a set of words to a meaning. I didn’t mean meaning as in meaningful. Quite the opposite.  

When stuck at the eighth layer, there is no escaping the words whether I look at words or not. The words have gotten inside my head.  The meaningfulness that I derive from the second layer is nowhere to be found. Direct experience is nowhere to be found. The only thing to be found is words, words, and words. 

Things go orange or yellow (the two most painful colors) and flickery, accompanied by an equally flickery ringing in my ears, and a dry burning all over my body.  And inside my head all I see or hear are words. Flickery words. Buzzing words. Words. Words. Words. Words. Words. Repeating like that in an endless loop.  And the terrifying emptiness that to me seems like the essence of what words and all other abstractions are (yes I am a writer with a loathing for words).  

The longer I try to do something like read to take my mind off the flickering, the worse it gets and the longer it takes to go away. Time seems infinite at times like this. The only thing to do is suck it up, lie down in a dark quiet room, and tough it out until it either disintegrates or I fall asleep.  If I’m awake, I gradually experience more and more periods of dark quiet, until finally the humming flickering wordiness dissipates. Usually at that point I’m exhausted and possibly have been frozen in one position for hours. 

I can think of very few experiences I like less than becoming stuck in the eighth layer.  I would far rather deal with shutdowns where nothing I can’t feel/see/etc. exists and I keep hitting layer zero and vanishing from my own awareness. 

Another important thing is that people operating at the same layer are not necessarily experiencing the same thing. My ability to read means I can operate at the eighth layer despite living at the first and second most of the time. Another person might live at the eighth. Another person might live up at some sort of eleventh layer I haven’t got into, and be experiencing the eighth due to shutdown. The person who lives there will be the only comfortable one. I will be uncomfortable because I am greatly stretching my abilities and hanging by my fingernails. The person from the eleventh layer will likely be distressed and disoriented because their usual abilities are gone and they don’t have the long experience functioning in that layer that someone who lives there does. 

This is one reason I find it really offensive when people assume that every person who can read and write (at least some of the time) has identical experiences. That assumes that everyone who can sometimes get to the eighth layer lives there, doesn’t understand the other layers that come before it, and can always get there. It’s not that simple. It’s not even as simple as the picture makes it look (and this picture is only about reading!). Life is quite a lot more complicated than that. 

So that’s my simplified guide to what I mean when I talk about living “under” or “beneath” words. Similar but not identical things apply when I talk about what’s “beneath” certain kinds of thought, perception, movement, etc. Oh and generally writing something this long puts my reading at layer seven at best, which is one of several reasons I can’t easily proofread, summarize, remember what I wrote, or do various other things.