Tag Archives: Everything

Unfolding

Standard
Me with Fey sitting on my shoulder, and a brown and yellow afghan in front of me.

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?

Advertisements

A bunch of stuff that needed saying

Standard

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.

Dealing with Cats, Part 1: What is respect?

Standard

Disclaimer: I am not an animal rights activist, I have zero connection to that movement and their personal sets of widgets, and often only minimal exposure to them through some of their worst representatives (PETA, Peter Singer).

I think the argument about whether animals (including humans) have a nebulous and abstract quality called “personhood” (which seems to have to do with the values of a particular set of human cultures) is the entirely wrong way to go about giving respect to animals. Too often it is terribly ableist and depends upon whether the creature in question possesses certain traits valued by certain humans, and when you go down that road you end up creating a set of criteria that not even all humans let alone all the rest of animals meet. Then you end up creating a system that privileges people based on those traits. And Singer is only among the worst of human beings to do this, he is far from the only one. In fact most people I encounter regularly seem to do this sort of thing all the time, to one degree or another. Arguments about “sentience” are similarly doomed, offensive, and full of the obvious limitations of various human imaginations when it comes to non-humans and some humans. Except that somehow they’re given even more of an outer sense of objectiveness because “sentience” seems to mostly be used in scientific or science-fiction circles.

[Edited to add: I have been told that some of that may matter in legal situations. But this series of cat posts is about personal situations between humans and cats. So in this context, cats should be respected because they exist.]

I base my beliefs in matters like this on respect.

I believe that everything, human or not, animal or not, conventionally considered alive at all or not, is worthy of respect.

I do not believe this in some fluffy insubstantial manner; fluffy sorts of people have been attracted to me in the past because the words I use superficially resemble words they sometimes use, but as soon as they find out a bit of what I am actually about they have a habit of running away rapidly. It is serious to me, solid, and ethically demanding. I also happen to believe that everything communicates and can be communicated with. I do not mean sitting around speaking out loud to rocks and having them speak out loud back. I mean that everything conveys information to everything else, whether or not that information is transmitted through the laws of physics or through complex linguistic patterns.

This is a perception that I have had my entire life and that has often been at odds with my culture. But I can’t let go of it just because some people have done terrible (and I do mean terrible) things to me on this basis (although at times I have learned to avoid the subject altogether). It is too important to how I treat others, from humans to cats to plants to rocks. I am not (as some have misinterpreted me) attributing human traits to nonhumans, I am rather saying that I view every kind of thing from humans to nonhumans as having a quality entirely their own that is important and valuable and worthy of respect and sincere attempts to listen to what they have to say to the world around them.

(I also don’t divide the world up the same way the English language forces me to sound like, but I have learned that very few other humans can speak the language I started out with and have always carried with me underneath the various attempts to sound as if I speak English. I have also found that attempts to translate my language to English not only fall short but cause reactions in others from ridicule to condemnation as incredibly inadequate in some manner whether moral or functional. And that linguists get pissed that I use the term language at all but I don’t know a better one.)

How do I know this language or whatever you call it is shared by other people? For one thing, I see it mentioned from time to time:

Momo listened to everyone and everything, to dogs and cats, crickets and tortoises — even to the rain and the wind in the pine trees — and all of them spoke to her after their own fashion.

Many were the evenings when, after her friends had gone home, she would sit by herself in the middle of the old stone amphitheater, with the sky’s starry vault overhead, and simply listen to the great silence around her.

Whenever she did this, she felt she was sitting at the center of a giant ear, listening to the world of the stars, and she seemed to hear soft but majestic music that touched her heart in the strangest way. On nights like these, she always had the most beautiful dreams.

Those who still think listening isn’t an art should see if they can do half as well.

–Michael Ende, Momo

Or the following quote (somewhat autistic-centric and specific-culture-centric, so occasionally prone to generalizations):

MM: [Speaking of some autistic people…] we do not draw a line between inanimate and animate beings, that they all have a soul to us.

Daina: As a child, everything was somewhat alive to me. Perhaps the face-processing tendency that most NTs have enables them early on to distinguish what is alive and what isn’t, and what is human and what isn’t.

Ava: Or maybe what is and isn’t alive, is just another assumption that NTs make. So for the NT child, either because of the strength of those attachments to faces and the accompanying social world, or through some coincidental developmental process, the aliveness of the sensory world fades. Whereas we ACs retain more of the direct experience of the world and less of the face-addiction-belief thing.

Sola: This reminds me of a poem that I studied in high school, “The Pond” by Bjalik. The poem describes a secret place in the forest, where there is a little pond and a tree growing from it. When the poet was a little boy, he used to go there, alone, and listen to the “language of visions,” an unmediated way for the child to communicate with the tree and the pond. The articles that I read about this poem discussed the role of spoken language, as adding the social aspect, separating the initially naive child from the true essence of the world. I was enchanted by the poem. For many months I perseverated on the meaning of communication and language, searching the library for more articles about this. However, unlike the conclusion of the poem, I did not feel that growing up and maturing inevitably meant losing this innocence and being expelled from nature. I felt that I was still that child in the forest. Now that I know that I am AS, I am not surprised that the poem had such influence on me.

[…]

MM: We are always sewing souls into the things we create.

Jane: Yes I think soul (essence of being) is created through the creation of a relationship. I call it a moral relationship (which I know sounds prissy or sanctimonious to some), by which I mean a relationship where there is acceptance/acknowledgement of agency and responsibility. When I relate to an object (whether it is another human or a bear I have created out of cloth), with my moral/aware consciousness, when I acknowledge my power to affect (recognize, hurt, heal, shine like the sun or nourish like rain — even to destroy like lightning), I also give power to the other (the object) to affect me. So that other is as alive as I am (in this sense). We are in a moral relationship that gives life meaning. That is why I know the bears who are my most intimate and daily family do help me be/have whatever is good in who I am and what I do. It is the relationship that makes us who we are (that makes me who I am). And I say that even though I have a strong tendency to want to say/feel I am I, alone. That fraction of truth lives inside the larger truth of relationships.

MM: Most of humanity is ignorant for not seeing what is around them. I hear the rocks and trees. Wish me well and tell me I am one of them, one of the silent ones who has now been given a voice, and that I must come out of hiding to protect others without voices: in my case I tend to help give voice to persons with Alzheimer’s disease. My washer and dryer speak to me, and I painted a face on them and gave them names and make sure I don’t overwork them. When I worked in a copy shop I could produce more copies than any other employee. Yes, I could understand the physics of the machines and their limitations from overheating etc. But for me the machines were talking to me and I talked back regularly.

I was raised by my Siamese cat I could understand her language better than the human language, and so I spoke Siamese before I spoke English, and I thought the cat was my real mother because I could understand her more than I could understand humans. I speak to children, babies, machines, rocks and trees as if they can hear me and they know what I am talking about. That is why my success with Alzheimer’s patients is so high: I treat them with such great respect and assume they know what I am saying. And I wonder why the rest of the world is so ignorant as to treat others as stupid and dumb and things and animals so terribly because they are somehow less than us? Well I think that this is a very arrogant stance to think we are better or more alive than these others who very much have a soul.

The last set of quotes is from a set of conversations between several autistic women in the book Women from Another Planet edited by Jean Kearns Miller. It’s not identical to my experience, but the basic idea many of them are getting at is quite similar to my own idea of my innate “language”. These are not the only autistic people I have heard say this either, just the ones readily accessible in a book. Whatever way I innately perceive the world around me in this sense has a lot in common with a specific subgroup of other people, many of whom have been defined by others as autistic but not exclusively that. And I am always glad to hear something of autistic people that isn’t the stereotype of either having an empty head or a head filled exclusively with elaborate formal logic like Spock.

So how does all this apply to cats? Well, in my book cats are as deserving of a fundamental respect as are humans, rocks, and all kinds of other things whether traditionally considered animate or inanimate. Like all forms of respect, this doesn’t mean treating all cats identically to all humans (that would be a frightfully human-centered way of doing things), or even treating all cats or all humans the same as each other. Respect has to do with really listening to who someone is and treating them accordingly, even if that differs from how you would treat someone else with respect. Identical and equal are not the same. It is as wrong to reach out and pet all over a cat who finds indiscriminate petting unpleasant, as it is to withhold petting from a cat who thrives on it (but in both cases it’s also wrong to approach the cat in a way that has everything to do with your own preferences and nothing at all to do with the cat’s!). Respect doesn’t mean you don’t have to work to understand the cat either, but that is a topic for a later post in this series.

This post is the first in a series of posts I am planning to write about how to deal with and interact with cats. It’s an attempt to give a broad overview of where I am coming from before I jump into all the details. And my reason for writing this is my reason for writing most things: I rarely see anything written about the subject matter from this perspective, I know I can’t be unique in valuing this perspective (because no one is that unique no matter what they believe), and so I write the kind of thing I would like to see written. And because a friend and I have been discussing nothing but cats for ages, so my brain is pointed in this direction.

feysnuggleface10

[Photo is Fey, viewed from over the top of both of our heads. Her face is pointing the opposite direction of mine, and mine is barely visible in the photo. Her cheek is partly on my cheek and partly on the grey neck pillow. She is a grey cat with ticked fur, and a white area on her nose like a diamond on top of a triangle of white. There is also some white visible on the tiny part of her chest that you can see. She has green eyes, each one partially shut but with one more so than the other. Her ears are in their normal relaxed position. Her whiskers are neither pulled in nor pushed out, and can only be seen on one side where they spray upwards (her face is pointing to the left side of the photo). And to me, the way her face looks in this photo is both intense and familiar, although I don’t know how they would look to anyone else.]