(Modified from a post to a mailing list.)

I don’t think humans have the means of detecting that nonhumans (or specific forms of humans) lack these kinds of (“secondary”) feelings. It wasn’t just that I thought Temple Grandin lacked the expertise, it was that I think that people lack the ability to determine that someone can’t feel something — except ourselves.

There’s usually an assumption that most people take for granted about animals (and about specific kinds of humans, including very young humans and many kinds of disabled humans), that… they’re basically as close to a blank state as we can possibly get without denying something that’s too obvious to deny.  And so instead of figuring “these feelings are possible”, we feel that each and every feeling they feel (as well as their intellectual abilities and self-awareness) must be proven by rigorous scientific method.

That’s coming at it backwards.  There should be really really good evidence those things are not there before we start assuming that they aren’t.  (And often that should be on a case-by-case basis.)  And really good evidence means really good evidence — not what passes for “evidence” in a culture that already views certain kinds of beings as as blank as we can feasibly paint them as.

(I’m not saying there aren’t humans without certain experiences.  The amount of enormous holes in my understanding/experience of the world (both growing up and later) compared to usual understandings of the world is truly astounding to me even compared to many other autistic people I’ve known.  I’m just saying, that’s not an assumption we should be making about entire categories of people, even categories we happen to belong to, let alone categories so obviously different that assumptions should come harder, not easier.)

Plus… for instance, I look at cats, and I see that they have realms of experience entirely closed off to humans.  That’s rarely acknowledged either — humans are seen as the “full” form and then cats (and other nonhumans) are seen as having like… certain chunks out of the (“full, human”) experience and then blankness everywhere else.  There are undoubtedly animals with feelings humans don’t have, and life forms with experiences of the world so different from humans that we don’t think they have experiences at all.  (Because we start from human as “the full experience of the world” and work “backwards” through animals and various atypical humans.)  That’s just a really warped understanding of the world, yet a lot of humans seem to take it for granted.

(And in so doing, they miss the vast amount of feline communication that it is possible for them to decipher, because they’re too busy thinking over the top of it to notice the subtlety of it.)

I was reading a bunch of historical short stories, just starting to get into them when… whap!  It feels like a whap anyway, or like having someone dump icewater on my head. It’s that sensation when I’m jolted out of having an ordinary reading experience, and thrown into an all-too-detailed look at how the author sees (in this case) developmentally disabled people, or (in other cases) some other group of people I’m part of. 

In this case, we’re shunted to the side, standing out even in a place supposedly devoted to nonconformity and diversity.  That’s not an unusual place to find us in people’s heads, but seeing it made so clear and obvious never gets any easier. We’re either on the sidelines, or we are there as a means to show another characters attitudes or morality, or we are piled high with the baggage the author carries from having a disabled family member. But whatever we are, we’re never just people, which is what we actually are in real life to anyone whose brain isn’t filled with BS about us.

Any comments in the next week or two may not remain on this site, due to assorted upgrades and stuff. Please don’t leave comments that you aren’t also saving to re-comment, or that you don’t care if they disappear. Also, I just deleted over 2,000 spam comments and wasn’t able to search through them individually for legit comments, so other comments may have been lost as well. Take this as a warning.

Yes, I have more substantial posts planned, but for now…

These photos show that I have just found my first white hairs! It was quite startling at first (I didn’t realize that it often happens around the age of thirty, which is exactly my age), but now I am eager to get more of them. I think unpigmented hair is cool-looking and it has an interesting texture too. I always said I was looking forward to getting grey hair. And people told me I’d be really freaked out by it when the time came because they symbolize mortality to people on a gut level. But I’m not freaked out. I just think it’s cool. At first I thought it was only one hair, but then I looked around and found some more. (My hair is so dense that it’s easy for single hairs and even small bald spots to hide just depending on the position of the hair.) Maybe I’ll decide to keep my hair for awhile so I can look for more of them. If anything I find this exciting. Then again I’ve been excited by life lately in general, and any little discovery is even more exciting.

As some people know, I have certain traits that… well… how to explain. I’m trying to explain closer to how things appear to me, rather than using other people’s words and making it look like I agree with them. But it’s damn hard. So anyway. 

There’s certain ways that I function or don’t as the case may be. There’s been for the past decade or two this whole academic discussion about how much of it can be said to be a separate “movement disorder” and how much is part of what currently gets called “autism”. Honestly that whole discussion on whether “autistic catatonia” is “part of autism” or not has started bugging the crap out of me. Because honestly my brain doesn’t ask that question before it causes me to freeze in place, if you know what I mean. 

So anyway to get out of standing on top of the sky abstraction land and waiting to fall, a bit closer to the ground here to describe what the trait is and not what people think about it. So what I’m trying to talk about is that I have this problem with crossing lines.

How intense the line-crossing problem varies depending on the type of line, the time of day, whether I’m in a wheelchair, phase of the moon for all I know. The really classic description is like when my last apartment had a rug in the living room and tile in the kitchen. I almost never made it into the kitchen. I’d hit that line and either freeze or sort of rock back and forth foot to foot. And eventually I’d walk away. 

What they don’t tell you is that this doesn’t apply just to the classics:  doorways, lawn to sidewalk, rug to tile, etc. And it doesn’t just apply to the other physical barriers I have trouble crossing:  Bed to wheelchair, wheelchair to toilet, sitting to standing, etc. It also applies to all sorts of weird internal barriers. 

The reason I’ve chosen this winding path convoluted twisting and turning writing style to write this is a good example though it doesn’t fully seem one at first glance. It’s not my understanding that’s twisting and turning. (The colossal mistake in assuming confused words mean confused thinking.)  It’s the only available path to write on. All others are blocked and I am finding my way through the blockages by all kinds of strange routes. 

Living my life is always a study in taking weird routes to get things done. If I can’t get into my wheelchair I have someone hold a coat hanger over it and say “grab the coat hanger”. I grab the hanger. Which stands me up. The rest of the movement is effortless in comparison. Everything I do requires certain elements. There’s the trigger, which helps me to get started. There’s possibly the path-guiding sort of like railroading or horse-racing that constrains my actions to a certain pathway . Then there’s the immense effort required to hurdle all the barriers I can’t trigger or guide my way around — like jumping to a different pathway or initiating when there’s no trigger. That third point takes exponentially more energy than everything else combined. If I run out of energy no amount of effort will help me. 

I am using those same things right now. The start of this writing was triggered by the problem I’m writing about. The pathway is the only places I can get words out of. That includes needing to be weirdly informal, closer to the conversation mode I just said can’t take the place of writing. It also includes a lot of invisible twists and turns through different topics and places of writing that I have no control over. And the effort… my brain feels almost as bad as my body feels after it tries to walk. It hurts. My eyes won’t stand still. I don’t like this. 

Anyway all that before I could say what I mean to talk about. And that is that there are boundary lines in my head just as surely as there are ones outside of me. 

My brain seems to have divided places I write, and people I write to, into rooms or something. So if I’m, say, writing a lot to my private blog, it impairs my ability to write here. If I write to one friend it’s very hard to write to another, if possible at all. 

It’s also very hard for me to write HTML tags on my iPod because despite the fact that the angle bracket keys are in my muscle memory by now, every time I click to another key layout is a barrier. To write a single HTML tag, I have to click twice for the first angle bracket, once to write the letters inside, then twice more to write the second angle bracket. A closing tag with a slash in it is even more complex. It is easier for me to delete using the backspace key and retype a long string of words than it is to highlight it and only have to hit backspace once. That’s because moving my fingers from the onscreen keyboard to the upper part of the screen where the words to highlight are, is another barrier. Even when the two finger positions are closer to each other than two keys on the keyboard might be. No matter how close the thing is on the other side of the line, it feels like a giant gulf that a person wouldn’t want to try to jump over without a death wish. 

So I am, by writing this, trying to shift myself back to writing here. I am also trying to use whatever tricks I know. And it’s still painfully hard. I’ll have to see if doing it more often will do the trick. The problem is all those guiding path things when it comes to where I write, they’re still guiding me away from here. My smaller scale paths are guiding my sentences but the larger scale paths want me to be somewhere else. 

And resisting is grueling. Before I wrote this I felt as good as I generally do lately. After, I can’t get my eyes to point in the same direction, parts of me are shaking, other parts are just sort of limp. It feels as if it was a physical effort to do this. And whenever I just stop… the momentum stops, my mind first starts trying to replay sensory experiences (always a bad sign), then just goes blank and drops meaning out of everything, and my hand drops my iPod, and everything just stops. Then it takes even more effort to get going again. 

So there went my attempt to write here more. Be aware that any apparent incoherence was not mental confusion but just word problems requiring twisting paths to get around barriers in front of the words. And perhaps at least starting in conversation mode made it possible to write at all, contrary to a couple posts ago. Bottom line, this barrier problem isn’t just physical, it also makes its way into language and other thought related things. 

I’m always on the lookout for cheap AAC devices, because not everyone has insurance, not all insurance covers AAC, not everyone has a diagnosis, and tons of other reasons. I saw a Fusion being used today and wanted to send out the link to anyone who might need it. At $339 it’s cheaper than what I often use (an iPod Touch/Proloquo2Go combination, which is more powerful than a Fusion, in fact more powerful than devices I have seen at way higher prices). The text to speech is not as good as some I’ve heard, but not anywhere near as bad as some things I’ve heard for three times the cost. You can hear a sample if you click this link and scroll down the page to the link saying “Click here to hear it!” Anyway the Fusion looks a lot like a Link Plus but has a much better voice from what I could hear. (The Link Plus DECtalk is actually worse than the older DECtalk voices.) I don’t know a lot about the screen other than that it’s one of those basic black on grey LCD displays.

So here’s a link to the Fusion itself for anyone who is interested.

One of the more annoying repeated conversations I’ve had goes like this. 

Me:  I’m having trouble writing. 
Them:  But you’re writing right now!
Me:  No I’m not, I’m talking to you. 
Them:  But that’s writing!

The part that I could never get them to understand is that the difference between writing and having a conversation is more than just body parts. Just because I type in conversation doesn’t make it writing. It feels different. I use totally different language (just watch me next time I talk to you and see how many times I can fit “like” into a single sentence). And I seem to be using totally different skills. 

Talking to people who use speech recognition software to write with (like Dragon Naturally Speaking) yields similar observations. Some people who are not great at conversation but who are good writers fear that they will lose their ability to write well. But they generally find that using speech  to write feels almost exactly like writing and not at all like trying to carry on a conversation. And they find it much easier than having to use speech to just talk to people. 

So next time I tell you in an informal conversation that I’m having trouble writing, please don’t try to tell me that I’m writing already just by having a conversation with you. It doesn’t work like that. 

[This post has been brought to you by the “Writing Something That I Couldn’t Write When The Situation Came Up Years Ago But That Finally Made It Into Words” mechanism. Edited to add: This one took almost exactly eight years. Just so people can be aware of how long it can go between my noticing something and being able to put it into words. Since a lot of people also assume that because I can write seemingly eloquently about one thing (possibly something that I noticed a decade or more before I could write it) then I can immediately write about all of my experiences and have none of the communication problems that go with needing to convey something important, and being unable to convey it. Things don’t work like that, either. It’d be really nice if they did, it’d probably save me a lot of trouble that unfortunately I am not saved in the real world. Additionally, just because I’ve been able to write about something once, in one situation, doesn’t mean those words will be available to me next time that I happen to need them. Communication is a lot more difficult than that, and sometimes even involves figuring out to write something, forgetting I ever figured out how to write it, and going the same amount of years before finally figuring it out again. Sometimes multiple times in a row. This is not easy, even for “simple” concepts like this one.]

[Image description:  A painting with a dark background that’s mostly blue and blue-purple with a bit of green swirled into each other. There is a stylized cat sitting and gazing up at a circle of light resembling the moon with a glow around it. Inside the cat is a similar white circle without the glow around it.]

From Rolling Around in My Head:

Rolling Around in My Head will be hosting the December issue of the Disability Blog Carnival. I’ve tossed around various ideas for the blog and have decided to post it on December 21st which is the winter solstace and the longest night of the year. Therefore I’ve chosen the theme to be ‘long nights and what we need to get through them’ … I’ve sure we’ve all had seasons of darkness and despair, hours of bleak desperation, I’m hopeful that people may have stories of what it took to get them through those times. Hope? Strength? Courage? Whatever it was, there’s a story there to tell.

There’s a lot of things I’ve done to get through hard times. A large amount of little things, and one big thing. The little things are various ways I remind myself about what matters. Objects that evoke specific ideas or feelings or experiences, written notes (by myself or my friends) reminding me of certain things about how the world works, or about my own life. Those things have their place in making sure that neither my thoughts nor my feelings run away with me in destructive ways.

But there is one thing that has worked better than anything else. It sounds simple but our reactions to it are at the root of more terror, denial, and avoidance in the world than anything else.  (But also more change, growth, love, and joy if it’s done right and often enough.) I’m going to describe it in specific terms of how it works, rather than in terms of the abstract words most commonly used to describe it, because those words unfortunately end up being used both to describe the thing I mean and its total opposite.  

For some reason I’ve written this in the second person as “you”, but be aware this is about how it works in my life not necessarily anyone else’s. Just imagine that this is what I would write to my younger self. These are NOT meant as instructions for the reader or anybody else unless for some reason they want to do this sort of thing:

Stop thinking (*). No, not even a little. Not the thought-that-pretends-not-to-be-thought. All of it. Stop. Now. Submit to the world. Not in a flashy showy way. Just completely let go, but in a somewhat focused way, so that you’re submitting to reality rather than confusion.  If you’re afraid, ride out the fear rather than running away. Just lay down anything you’re thinking or feeling, throw yourself down on existence, and let it happen for once without trying to bend it to your will.  Don’t get distracted by whether you notice anything different, feel anything different, or not.  Just stay silent and empty and let things happen. 

.
.
.
.
.

Warning:  Do this enough, correctly enough, and your life will change. Not always in ways you think you want. But in the ways you need the most and don’t know it. This isn’t a strategy that will always make you feel good in the short term. As such, this is not a choice to make lightly: while it can sometimes make you feel better, it can also take you through times that can feel infinitely worse than where you started.  

But it will also make you strong, or maybe a better term is, able to rely on a deep strength that exists whether you are strong or not.  It will make you rooted and deepened in the most important ways that matter.  And that will be worth the rest, especially if you come into this with a sincere desire to do the right thing, to make the world better for others, not just yourself. 

You may also have little choice in the matter. Often, life pushes us towards learning to do this whether we think we like it or not (and often, deep down we want this more than anything even though consciously we may not agree). I would be dead if not for this but sometimes in the short term the resulting intensity and shutdown seemed to aggravate my already suicidal thoughts when I was already depressed. 

Either way, things like this are some of the most deep and lasting ways to deal with situations that would otherwise lead to despair.  There is a resiliency that comes from learning to surrender to a part of the world that is pure existence, that cannot be truly destroyed.

I’m someone whose life has pushed me into learning this whether I want to or not.  Which is another way of saying I’ve been to hell and back.  When people  think of me as resilient in the face of adversity, what they are really seeing is that I’ve learned to surrender to a deeper strength and protection than my own. That I have learned to simultaneously try my best to survive, but not be afraid of either life or death.  

Which means I am doing something quite different from the “trusting that things will work out” (and then surrendering to their emotions or their own thoughts, or worse to another person’s will and ego, having a warped and distorted parody of the experiences I’ve described, and thinking they’re doing what I’m talking about) that a lot of highly privileged people do. Their privilege lets them sail through adversity that could kill someone like me, and then claim that this is because the universe likes them a lot. Just, no. That’s an insult to everyone who doesn’t survive.  This is nothing like that. Danger for me is danger:  I could live or die, come out unscathed or heavily damaged, anything in between. What I trust is not that I will come out of everything squeaky clean, alive, and happy.  It’s rather that there’s a deep level of reality where even if I end up dead or damaged, my existence is connected to everything else and will always have happened.  It’s hard (impossible) to explain in words, but it comes down to a connection to a kind of goodness that is lending its strength to you even if the worst happens. 

This kind of submission can sound passive, but it’s an active process. And it can change how you relate to the world and to people in it.  I used to make the common mistake that if I felt unloved then I needed to find people who would love me (in a non-romantic sense).  This kind of thing showed me that love is less an emotion than a property of the world, or a way of living.  I had to do my best to live my life in accordance with the love-that-is-not-an-emotion and then love would be there whether I had friends or not. Not that friends are bad or unnecessary.  But that you can’t truly experience love without enacting love and living as part of it.  This is one of many valuable things I have learned by throwing myself at the mercy of the deeper levels of existence. There is hardship involved in this process but you also become increasingly aware of things like love and joy in ways that the usual versions are just hollow echoes of. 

The suggested hope, strength, and courage of the carnival theme are things I have only truly experienced by letting go of my own feeble imitations, and leaning heavily on the versions that are woven deeply into the world around me. And these things exist anywhere and anytime you look for them, if you’re looking in the right way. Times of despair aren’t times when they go away, they’re times when you can’t perceive them. You always have access to perfect love, perfect clarity, perfect hope, perfect strength, perfect courage, perfect wisdom, and perfect joy.

.
.
.
.
.

[NOTE: I will not publish comments that ascribe to me or any single person qualities that I only truly experience by getting out of the way of the world around me, so don’t try to “compliment” me or anyone else about having these various positive qualities. It’s exceedingly important to remember that they are only part of me or anyone else by virtue of being part of the world in general. Too often compliments like that serve only to puff up a part of oneself that a person has to be able to get rid of in order to experience the real thing. I take this very seriously.]

(*) By “stop thinking”, I don’t mean let someone else do your thinking for you. This is a good example of how a phrase can mean both a thing and its opposite, making communication difficult. The bad kind of stop thinking means letting go of your capacity to intercept and get rid of crappy and dangerous ideas. The good kind means to learn how to avoid when necessary the kind of mental activity that normally goes on unceasingly and separates you from the world around you. The bad kind is actually just another form of the same mental activity. Unscrupulous people blur the distinction between the good and bad interpretation of any of the words I’m using, to take advantage of anyone who can’t tell the difference. This makes it hard to even discuss these things, which is doubtless part of the intent.

Laura Hershey, a well-known disability rights activist, is dead. I don’t even know how to respond, it was so unexpected and I’d always looked up to her. I’d like to do a memorial post with lots of links to her writing and how it influenced me and all that, but for now all I can do is say that she died, I can’t think beyond that yet.