[Title inspired by the quote “Did I ever tell you that Mrs McCave had 23 sons and she called them all Dave?” -Dr. Seuss. The number 23 is irrelevant.]

This isn’t the post I wanted to write. I have several important ones I’m working on and then this one (on a topic I have covered already some time ago) goes and pops out. That seems like it’s always the way of things. Oh well. It’s on a topic that I recently attended a talk on (pain in people with developmental disabilities) that had a lot of important things to say. And this is one component that wasn’t in the talk but that has had a major effect on my life. 

So I’ve lived with chronic severe pain of several kinds my whole life. One of the hardest things, and a barrier to pain treatment, has been learning the unifying concept of pain in the first place. 

To me, every kind of pain is separate and unique. It would never occur to me to put them together if it weren’t for learning, often from other people, what they were. (This has had serious and sometimes life-threatening consequences.  I’m sure anyone who has read much of this blog knows the stories.)

So I’ve gone through my life learning them one by one. Here’s a list of many things that all feel separate to me:

Summer thing (central). Trigeminal neuralgia (background).  Trigeminal neuralgia (attack).  Occipital neuralgia (background).   Occipital neuralgia (attack). Hypermobility-related overall joint pain. Tendinitis. Muscle ache. Muscle spasm. Heartburn. Weird neck nerve stuff (can be felt anywhere in my body depending on neck position). Upper back/neck pain.  Lower back pain. Migraine (both head and other body parts). Chronic daily headache. Seizure aura (dryness to the point of pain). Stomachache. Sore throat. Intestinal pain (especially from diarrhea or constipation). Postcholecystectomy syndrome (feels like gallbladder attacks despite lack of gallbladder). And the many things I doubtless don’t remember.

Now keep in mind that for many of the things listed above, even “one” of them might sometimes cause six or seven distinct sensations that I would never think to put together, and that one kind of pain can feel different to me just based on which body part feels it. And those are just kinds of pain that happen without an immediate injury, and kinds of pain that I happen to experience either regularly or constantly. And even excellent communication about one means nothing about another.

So today, I was recovering from the evil flashing/blaringness that is the building fire alarm. When I noticed that my ability to write and think was being greatly reduced by a sensation on my body. At first glance, it just felt like something lightly brushing against the skin of one side of my body.  Not anything I would ever equate to pain. 

But then I remembered a story I heard about the severe abdominal pain of an intestinal blockage and how it felt to an autistic person. He said that he, who is an incredibly happy person who is never depressed, suddenly felt suicidal and like he would do anything to get away from… some weird sensation or another that felt rather mild on a conscious level and that didn’t resemble any kind of pain he was used to. It was only after a nurse administered pain meds that, by the contrast, he could tell he had been in excruciating pain. 

So he told me to remember this:  Pain is any physical sensation experienced as uncomfortable. Especially if in connection to that sensation you are experiencing limitations in everyday functioning, out-of-character negative emotions, a desire to do anything to get rid of the sensation, or other things like that. 

So I thought it through. I was being limited in my ability to concentrate in ways I would normally put at a 6 or 7 on the 1-10 pain scale (which has been painstakingly drilled into my head over a period of years until I almost understand it). I was trying to avoid my body more than usual. And I couldn’t get the unpleasantness of the sensation out of my head. When I tried to connect to my body a little more, it did indeed feel like there was pain underneath or tied in with the brushing sensation. And when I took my medication… well I’m able to write this, and I wouldn’t have been half an hour ago, and the sensation started keeping it down to a dull roar instead of dominating my attention. 

This isn’t the first time I’ve felt that. But it’s the first time I have ever associated it with pain. So now I have a whole new kind of pain to add to my list of “sensations that all get called pain no matter how different they feel”. 

But despite that library of different pain sensations in my head, it’s not like this is automatic. The hospital around here used pain as one of the vital signs. This is all well and good and saves lives as long as they take patients seriously. But it’s a major headache (no pun intended) for me, since I have trouble localizing and identifying pain at the best of times. 

I just recently got my latest nerve blocks done. They make you fast beforehand, so I was already very floaty and disconnected and light-headed. And the conversation goes something like this:

NURSE:  “Do you have any pain?”

ME:  “Probably. Most likely actually.”

NURSE:  “Where is it?”

ME:  “Please no. You’ve got to be kidding. I haven’t eaten. I don’t even know where my body is, let alone where the pain is.”

NURSE:  “So you don’t have any pain?”

ME:  [inwardly going “oh for the love of… how can I possibly explain this when I haven’t eaten and don’t have any words?”]

NURSE: “So you don’t have any pain?”

ME:  “Seriously I don’t know how to explain this. I do have pain but I don’t know how to interpret the locations in my body.”

NURSE:  “Okay, but can you at least tell me where the pain we’re treating today is?”‘

And after that everything went okay. But at the time all I felt were a whole swirl of sensations, every sight, sound, touch, smell, taste, etc., including pain, just jumbled together, sometimes blended, and not at all possible to locate, because my body itself was just a series of jumbled sensations in among the others. It’s really hard to explain to people why I can be in very intense pain and both be unable to locate it on my body and unable to perceive it as separable perceptually or conceptually from the landscape around me.  And it’s in turn hard to explain why this is normal for me to lose track of everything (pain or otherwise) in that jumble, and that pain isn’t a special case there, it’s just something that adds to the confusion. This doesn’t mean I don’t feel them or they don’t affect me.  It just means that conscious understanding of them is a serious struggle. 

Unfortunately this often means that at the time when locating and describing pain is the most important, it’s the least possible.  When they ask about pain at doctor’s appointments I usually give them a rehearsed answer. Trying to map out all the overlapping kinds of pain, locate them, describe them, and give them all numbers, is impossible. Even when I feel like I have a body, the sheer number of kinds of pain prevent me from treating them as if they are all one thing. To me they’re just many and varied unpleasant sensations with nothing much in common, spread out over my entire perceptual landscape.  

Edited to add:

I am starting to notice a pattern here. Or maybe simply noticing it yet again while forgetting last time I noticed (not hard to do at the best of times and right now I have a migraine). Very many of the mismatches between me and standard expectations are extreme mismatches between my supposedly-native language and my experiences of the world. People always talk about language shaping our experiences. Maybe it can do that sometimes. Sometimes when it seems from the outside that language has shaped my experiences, it’s really that language has shaped my while-using-language responses (reason #5278 I distrust lots of autism research that relies on forcing us to use or understand language). 

But then most of the time it feels like language is in one corner of a room, and my experiences not only take up the entire rest of the room, but much of the world outside that room. And yet everyone focuses on that one corner and acts like everything else doesn’t exist. 

So people focus on a definition of pain in a particular language and culture. And completely miss that I have no reason to link together dozens of seemingly unrelated experiences just because people here use one word for all of them. Sapir-Whorf my ass. 

This is why even the most accurate and carefully-chosen words always feel like lies to me.  Even the list of different kinds of pain is a list I chose because the diagnostic terms are the only ones I know — I have only limited ability to describe the actual kinds and boundaries of the various experiences I have that all get called pain, as I experience them, so I borrow someone else’s words for the conditions that cause the pain. And people wonder why I continually express frustration and exhaustion when it comes to language. 

So I go to this resource center where I can paint, and lots of other developmentally disabled people go there too to do various forms of art. Generally, everyone does whatever they want to do. But there’s this one guy whose situation really bothers me. Okay, so this guy is blind. And he likes to sculpt. And every day he goes in there, they make him draw with colored pencils for a certain amount of time before he’s allowed to sculpt. He repeatedly tries to say that he’s done, and they keep telling him that he’s not done until they say he’s done. So he sits there drawing circles over and over, until they tell him to switch colors, and then he grabs another pencil (if he can find one, which often he can’t, because he can’t see the pencils, and probably not the drawings either) and draws the same circles in the same spot over and over, until they tell him to draw them somewhere else on the paper, so he draws the same circles in the same spots over and over. (And I get the sense that maybe this circle thing is a protest against being made to draw at all.) And then eventually in a time that’s determined entirely by his staff, they let him sculpt, and then he’s happy. The rest of us, we can say when we’re done with something and they let us stop. The rest of us can choose what kind of activity we want to do and we aren’t required to do something else first. But this one guy has to sit there drawing circles and getting clearly bored with it, over and over, until someone decides he can sculpt which is usually what he wants to do in the first place. And just… WTF, it makes no sense, and it’s wrong. Art is something you do because you want to do it, it’s not something that someone makes you do when you don’t want to do it, and it’s not something where other people ought to choose what form of art you want to do. And choices like that ought to be a human right, not subject to someone else’s power games. It’s things like this that spoil art for people who would otherwise enjoy it. And they bring the scent and the feel of ‘institution’ into places that are blessedly noninstitutional in other respects, because of who has and doesn’t have the control and power.

The following was my contribution to a private discussion about the way our own neurological oddities made us think about reality, consciousness, perception, etc.  (My first paragraph came about mostly because someone used the word “phenomonology”, which I have only once heard before.) There’s much more I could add to such a discussion, but the following are the words that actually left my fingers. 

I remember once managing to describe to a condescending professional a little of what my experience of the world was like. He told me that he had “once been interested in phenomenology” but later found out it was meaningless. Which I found rather insulting, the idea that the way he experienced the world was likely something he considered meaningful (at least he seemed to for all that he always seemed to talk about it) but the way I did was meaningless. (He also seemed of the belief that it’s only ‘phenomenology’ if it’s a ‘defective’ person’s experience, not his, which he called among other things ‘wisdom’ and tried to mold me into.) Personally I’ve always found different people’s experiences interesting rather than pointless. 

I’ve often found that coming at language/thought/movement/perception/etc. from “below” rather than “above” (not value judgements in either direction, just ways I conceive of such things) gives me a perspective on these things that seems unusual. I’d never thought of it as philosophy (because the academic discipline of philosophy has mostly proven too abstract for me to penetrate deeply), but it certainly makes me think about reality and perception thereof. 

One of the weird things of the moment for me comes from a new level of motor oddity where what used to be unintentional movements (“stimming”, “ticcing”, and the like) that took place in outwardly observable parts of my body, now more than half the time take place only in my head. I can feel them trying to happen (in a way that feels like someone else thinking a thought for me, except the thought is a pre-movement intention rather than my usual thoughts; pre-movement intention as in comparable to what happens to me when I consciously try to move but it doesn’t find its way to my body). This can even take the form of an entire screaming, head-banging, thrashing meltdown, taking place entirely in that pre-movement realm where only I can feel it, while my body just goes inert. (No, not all my appearance to have gained self-control is my doing.) Involuntary or semi-voluntary movements and lack of (or difficulty with) voluntary movement have always been part of my life, but it is very weird to experience involuntary non-movements as it were. It makes me wonder about such strange intersections of what are already in-between areas of consciousness. 

At Questioning Transphobia, there’s a post called Empathy and Kyriarchy, that says this:

This is the failure I see over and over again: People identify with the oppressor. People often do not identify with the oppressed. I am not making distinctions here between marginalized and privileged people because this does not matter. Many trans people are quite transphobic, many women are sexist, many people with disabilities carry ableism. They identify more with the dominant culture that valorizes and emblemizes cisnormativity, manhood, and being temporarily able-bodied or neurotypical over transness, womanhood and femininity, or having a disability. No one is immune to this.

And that’s something I’ve been noticing, and trying to put into words, for years.

When I hear about, for instance, a disabled person who has been murdered, abused, and whatnot, I immediately identify with them. I also do this when I see people talking about some group of people in really offensive (but very allowed and approved by most people) ways. When I found out about Charles-Antoine Blais, I didn’t think “Oh how hard his mother must have had it,” I thought “OMG, how awful to have your mother who is supposed to love you and take care of you, push you underwater until you drown.” I can imagine it all too well. It’s not something I do on purpose. It’s a reflex. I just know that experience from that point of view, and I know there is nothing to justify what is done to the person in question.

I think I tried to write a post about this a long time ago. I don’t know if I ever finished it, and I don’t even know how to find it. But I’ve noticed that a lot of what divides me from a lot of people who purport to care about (insert kind of people here), is that I have that instant, instinctive, impossible-to-ignore identification thing going on. It makes me unable to read certain conversations at all because of the horribleness of not only whatever has been done to the person/people in question, but having to read page after page of other people identifying with the abuser/oppressor/murderer/whatever without often even realizing they’re doing it, since they do it just as instinctively as I do the opposite.

Sometimes I wonder if this is tied to another peculiarity of mine, which is the inability to perceive certain things that the rest of the world seems to perceive. I’m not talking about inability to perceive difference, which wouldn’t help anyone because people are different. But there’s a particular kind of perception I don’t have. It’s whatever perception enables people to, for instance, differentiate someone they see as “not there” or “not all there,” from a person who “is there”. Despite knowing people who look and respond to the world in very unusual ways (whether autistic, with dementia, or whatever else), I’ve never been able to figure out the quality of “this person isn’t really there” that other people see in them (or in myself a lot of the time). I know they perceive people this way, this is where we get terms like “vegetable” (which I consider something beyond offensive). But when I am around people who attract that label, I perceive people who are responding to the world around them in some really obvious ways. But other people don’t have that perception, they see them as oblivious to the world around them. And I can’t figure out why. I can often identify with the way such people respond to the world more easily than I identify with the average person who has a layer on top of their thinking that I don’t have, or barely have, or only have 1% of the time, or something like that. And it seems like it’s that layer that they consider “being really there,” and if a person either doesn’t have that layer, looks like they don’t have that layer, or cannot pass as having that layer even if they don’t, then the person might as well not exist, or barely exist, to them.

I know that can’t be the only reason I view things this way, but that’s got to be part of it. It’s much harder to ignore someone’s personhood when you are viscerally aware of their existence. I don’t know what makes me this way, but it seems to me that if more people were this way, even if more people tried to be this way, there would be a lot fewer problems in the world. And yet I’m said to be without empathy (or “impaired in empathy”), simply because I can’t always predict or understand nondisabled people’s actions.

But this really means a lot to me — viewing all people as people, not just some people. On a visceral, nearly-impossible-to-ignore level. I’m not saying I can’t hurt people. Everyone has the capacity to do harm to others for a large number of reasons, most often without even trying. I’m not even saying people don’t die in some manner because of me, because everyone lives off the lives and deaths of people they will likely never know or meet, in indirect ways. But there’s really something important in putting yourself in the shoes of the target of violence rather than jumping to excuse the perpetrator (I note there’s a definite line between excuse and understand, but too often “understand” becomes a euphemism for “excuse”). If the perpetrators did it in the first place, there would be way fewer perpetrators. It’s really important to know people are people and to empathize with people who are too often depersonalized in our societies rather than to solely empathize with the ones who are already considered a person.

Also a note that empathy should involve perceiving someone as they are, not perceiving someone through your own pity, prejudice, and other distorting factors. Perceiving someone through the standpoint of pity is how some of us get murdered to begin with, we’re seen as endlessly suffering and in need of release through death. That kind of false empathy isn’t what I’m talking about here.

Sorry if this post isn’t very coherent or repeats itself a lot or anything like that. It’s one of those posts that’s triggered directly from reading something else, and that I have very little control over the end form because it’s hard for me to read and write at the same time. Lately I seem to write whatever I write whenever I write it, and it ends up however I’ve written it rather than however I want it to look. There’s a definite point in here that I’ve considered important for a long time, I just hope it turns out comprehensible in the end.

This is my post for the Disability Blog Carnival. It’s far from perfect, but I’ve been working on it for ages and I figure it I don’t post it now, it’s never going to get posted. Please read the “further notes” section before replying — this topic means a lot to me and I don’t want to see it misconstrued. (I also just plain feel weird writing about it without tacking on thirty disclaimers.)

This painting has been demanding that it isn’t finished many times since I thought I finished it. I think it’s finished now. I trust that it will let me know again if it isn’t. I don’t try to make these paintings about anything usually, but often they end up about something anyway. This is one such situation.

There appears to be distance in this painting. The people in it are standing as far away from each other as possible, the ones on the edges looking in separate directions away from each other. But the distance is only physical. The real distance in this painting is something entirely different than that. But first, I want to talk about the lack of distance between these people.

They perceive the world in similar ways. Not identical ways by any means. But similar enough that when they communicate with each other, they are inhabiting the same world and communication is pretty instinctive for them. Each one’s responses to her surroundings are written on her body, and each one’s body is written on her surroundings. If they use words, each one’s surroundings and reactions are written in between the words (not the same as between the lines). And, inhabiting the same perceptual world, each one is able to easily read what is written on the others’ bodies, in their surroundings, and (if words are used) in between their words.

They don’t need to see each other’s faces. They can see through each others’ ‘seemings’ without getting caught up in them or even noticing them. They don’t need to go through the front, because they are already inside.

As far as the perceptual world they share, it’s hard to describe in words because it is so completely the opposite of words. And yet without at least trying to point at it with words (which is the most words can possibly do), people who don’t live there can’t know about it. (I have tried to point to it with words many times, so for those of you who have heard it already, this will be quite familiar.)

It’s a place where words, concepts, ideas, and abstractions don’t exist. The world is perceived as texture, motion, tone, timbre, smell, color, flavor, and shape, and the various (non-abstract) patterns between them. Having inhabited this realm since infancy and never truly left it for long (regardless of seeming), they are accustomed to navigating through it without becoming confused. Although I have tried to write about the particulars of this many times before, the details of how to describe this elude me as usual.

The real distance in this painting? The distance between the place that they live, and the place that most people seem to live. It’s a distance that they cross every time they have to communicate with someone who doesn’t live in that place. But the person they are communicating with rarely understands the distance. They hear the words, but they don’t hear the long climb it takes to come to a place where words have meaning. They perceive that we are in the same room with them, but they don’t perceive how different our perception of that room is. You can be physically right next to someone and be as far apart from them as possible.

Sometimes they do pick up on the distance. Especially if the people don’t seem to be responding or understanding the way others expect. But although others notice the distance, they misunderstand what that distance means. They might decide that this world is an empty, barren cognitive wasteland. Some people have a little experience, for instance memories of toddlerhood, or of shutdowns. But most such people remember this realm as simply chaos. They don’t have decades of living primarily in that realm and learning other ways of navigating and understanding that happen in a totally different way than most people’s do.

In the shared place they spend most of their lives in, they are equal. Not as a concept, but as a fact. There are not a lot of concepts here. There are sensations, which blend together. There are no words. No idea-thoughts. Abstract concepts are not here to wrestle sensations into tidy submission. Not even those most concrete of abstract concepts, such as ‘chair’, ‘table’, ‘bookshelf’, ‘door’. These things are not perceived separately from each other, they are perceived only as their component sensations. And even those are not categorized as ‘rough’, ‘smooth’, ‘curved’, ‘brown’, ‘loud’, but just experienced. Categories have no place here, but there are many patterns:

I heard what I know from the tattered leaf
That tumbles and twists in the wandering breeze
Sharp stones that lie by the side of the street
Forgotten yet carefully stacked on my knee
The cold of the pavement I press to my cheek
The glance that darts past me before it can reach
Flat rocks skim the surface then sink in the sea
They dance through the world and then come back to me

Most people put a great deal of emphasis on certain qualities that the people here don’t even notice when they are in the place that is home to them. People are considered wholly different from each other based on presence and absence and type of speech, employment, and education. These supposedly enormous differences are impossible to perceive in that place. These three might be very similar or entirely different by the standards of the rest of the world, but they won’t notice either way because the commonalities more important for them to be able to understand each other are obviously there. Those supposedly large differences, if they exist at all to them, are just barely perceptible and not at all interesting.

But they have to step out of that place. It is grueling and rips apart what they had, giving them only the scraps rather than the full texture. It feels like exile, like death. In this new place of ideas rather than the things themselves, there are all kinds of things going on that have nothing to do with reality. And yet most of the world lives in this place, cannot escape it, and do not even know the other place exists. If others do know of the other place, they don’t view it as too important, or too valid, and they fear it without knowing what they fear.

When these three step into the place of words and ideas, they find that other people view them in ways they would never view themselves. Ideas like ‘high functioning’ and ‘low functioning’ get batted around, and may be applied one to each to separate them from each other. Even when people don’t use those words, they use the ideas. Neither of them understand why some people see their appearance as so completely distant from each other, when their reality is so close together.

So many other aspects of idea-land cause them problems. It’s worse than a translation problem: This place isn’t just one language that needs to be translated into another, it’s the opposite of language. Their experiences kill language and language kills their experiences. All they can ever do is use language to point vaguely in the direction of what they mean (as I am doing now), and hope that someone can pick up on it without attaching an unnecessary string of ideas to it (which people from idea-world always, always do). They may use language well or poorly (or both at different times), but they are deep down less connected to language than even the most incompetent writer who lives in idea-land. Cruel misunderstandings often result from this seeming paradox.

But in the place where they live, they are just three pieces of a larger pattern. Their resonance with each other helps them perceive it more distinctly, and to act in the ways they are meant to act, even when they themselves don’t intend it. This is a place without words, without belief, without ideas, without ideology, without what most see as “thought”, without symbol, without intention. This is a place they never truly leave, even when they climb into the realm of ideas to use words — and if they remember things later, it is the view from this place that they remember.

As may be obvious, I’m one possible person that can fit into this painting. I view the experiences I’m discussing as almost sacred, especially given how long it took me of being the only person I knew who saw things this way, which takes a toll. Please have some respect for that.

More posts/articles regarding similar topics:

What I mean by “beneath” words. (That’s what’s meant by “under” thought, or more specifically idea-thought.)
The Fireworks Are Interesting
Up in the clouds and Down in the Valley: My Richness and Yours
With Sideways Mind: On Listening to Cats

Further notes (please read these before replying):

None of the things I’m talking about involve a crossing of boundaries in the wrong way. These aren’t people who have been sort of smeared into each other in a destructive fashion. These are people who are quite definitely separate, who don’t encroach on each other wrongly at all, in fact, but who have a sense of “being in/from the same place” as each other, a resonance. It’s hard to describe, but it’s very different from people who do smear boundaries, or who use concepts like “being from the same place” in order to hurt and manipulate other people.

Please don’t compare these experiences to things like Buddhism, drugs, or the supernatural. I’ve noticed that when I start talking about experiences that are outside of conventional language, some people make an assumption that seems to run something like “What she talks about is outside of language, and what I talk about is outside of language, so we must be talking about similar things!” Even though, for instance, the other person’s experience might be one of being so thoroughly embedded in a whirlwind of ideas that language can’t handle it and falls apart for that reason, which is the opposite of what I am talking about. (Plus, when language breaks down, a single set of words often ends up pointing both to a thing and to its polar opposite. Which doesn’t help in these situations.) I’ve had enough of these comparisons to make them leave a bad taste in my mouth for several different reasons I can’t get into here.

When I talk about “worlds” here, I’m using the best terminology that I have. I had so much trouble writing this, that I had to leave in terms that I don’t normally use. None of this should be thought of as confirmation of the stereotype that autistic people “live in our own world”. And it’s not about disability-based superpowers either. Please don’t smack me for using the only words I could find.

I’m not trying to create some new stereotype (or new variant on an old stereotype) of any kind of disabled people. I’m trying to talk about something that almost nobody talks about. That’s a difficult task. If you’re reading a stereotype in here, you’re reading it wrong. I know that some people will take a stereotype out of it anyway, or will add on meanings that aren’t intended. I can’t do a lot about that, but if it happens, it’s because of someone mistakenly reading things I didn’t write.

The people I’m talking about isn’t some kind of code word for ‘autistic people’. While many of the people I share such experiences with are autistic, some are not (usually they’re neurologically atypical in some other way, be it brain injury, intellectual disability, epilepsy, dementia, or any of a number of other categories people get stuck in), and most autistic people do not seem to share these experiences in quite the way I’m talking about.

Nonetheless, these experiences call to mind the following poem by Jim Sinclair, originally published in “Our Voice”, the newsletter of ANI. (This newsletter allows articles to be reprinted as long as the author’s name and the name of the publication are cited.)

Autispeak

This is the language we speak,
we who can talk without sound.
This is our voice in the silence
Where every word has weight, and no thought is ever lost.

This is the language we speak,
we who embrace without touching,
This is our dance without bodies
Where every touch has meaning, and no glance is ever wasted

This is the language we speak,
we who can see without looking.
This is our star behind darkness
where velvet rainbows sing, and no tear falls unseen.

This is the language we speak, we who can float outside time
This is our home beyond nowhere
where shadows’ footsteps fall,
where memory echoes from the future,
and comfort flows back from the past,
where smiles have no need for faces
and warmth breathes from the frozen places.
This is our source, our destination, where every song is heard, and no soul shines unknown.

And with that said, I’m now off to submit this to the Disability Blog Carnival before it turns midnight.