Tag Archives: Perception

Feeding tubes and weird ideas

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My favorie BADD post: Tube-ageddon.

I haven't had much time to write anything here about the hell I went through getting my GJ tube. I had every indication for a GJ tube. I had gastroparesis so bad it was starting to affect my breathing, in a way that doctors said was likely to result in infection after infection until I died. From the emergency room onward, doctors were saying my best hope was to get a feeding tube.

Yet the pressure I got from doctors, while in the hospital for one of those infections, was to just keep getting infections, go home, wait to die. Most of them wouldn't say that outright. But some of them did. Some of them we confronted and they absolutely agreed that the only alternative to the tube was death — which could have happened to me by now, without the tube. But they still insisted on telling me not to get the tube, basically that I was better off dead than with a tube. We had to rally a bunch of people on the Internet to call the hospital before they suddenly changed their tune. My pulmonologist told me she could tell exactly when I started getting people calling the hospital, because the tone in my charts changed instantly to “let's get her the tube after all”.

Most people think of all feeding tubes as the same, all reasons for getting them as the same, and so they believe in false generalizations about their capacity to prevent lung infections, or indeed cause them. But they aren't all the same. They're all different, and the reasons for getting them are all different.

I have gastroparesis. That means my stomach is partially paralyzed. In my case it became severe before it was diagnosed last year and confirmed with testing this year. It's probably due to neuromuscular problems inherited from my mother, who has autonomic neuropathy among other things, a common cause of gastroparesis. My symptoms are similar to hers so doctors are assuming whatever we have is related. Anyway, it makes food remain in the stomach a long time. After awhile, this means that you can't eat very much and you drop a lot of weight. (I may still be fat, but they tell me by the end I was burning muscle.) by the end I was having trouble keeping down two small cartons of Boost a day, which isn't enough calories to live on. I was already on a liquid diet so there was no less food I could keep eating.

It also meant that the stuff staying in my stomach was riding up my esophagus again on gas bubbles formed by food sitting in my stomach for ages. I could feel it happening several times a day. I'd belch and food or bile would ride up with it. If this happened overnight, my bipap machine would shove the stomach contents down into my lungs from my esophagus. This began happening several times a week, and from January until March I had about five lung infections requiring antibiotics. I never stopped taking antibiotics, by the time one course was over I'd be on the next. Which is dangerous in its own right.

So when I showed up in the ER a few days after a CT scan showing what they called a “ground glass appearance”, they had no problem admitting me into the hospital, and even in the emergency room they were telling me if I wanted to live I needed a GJ tube. This wasn't news to me. They had been talking about a feeding tube since last fall, when one more nausea med added to the five they'd started me on, made me able to go home without one instead. I'd been discussing with my friends what kind of feeding tube served my needs best as a person with gastroparesis. And the GJ tube had always seemed like the best option.

A GJ tube is like a combination of a G tube and a J tube. Half of it goes into the stomach, which is a G tube. The other part goes into the first part of the small intestines, which is the J tube. The G tube gives you the ability to drain your stomach contents out into a cup, and dump them down the toilet. This means that if you do it often enough, you won't have anything building up in there and going up into your lungs. Right now, even bile and stomach acid can build up to dangerous amounts because of my stomach not emptying often enough, so I take acid reducers and I drain my G tube several times a day.

The J tube portion is the part that stuff comes in through. I eat through it. I drink through it. I get all of my medications through it. This means that nothing has to come in through my stomach. Which means we are bypassing the worst part of my digestive system. Not that the rest of my digestive system is wonderful. My esophagus is slow, my stomach is slow, and my bowels have been producing blockages since I was a teenager. But with liquid food going into my small intestine at a fairly slow rate (one feeding in roughly twenty four hours, I wasn't able to handle the twelve hour version without getting very sick) I seem to be able to handle things much better than when it was going in my stomach. I love it. It's so much easier than feeling horribly sick all the time.

I still take nausea meds, but half of them have been changed to PRN instead of daily. So daily I take Phenergan, Reglan (which speeds up my digestive system), and Marinol. And I can also take Benadryl. Lorazepam, and Zofran as needed. I used to have to take all six of those things every day, so this has really cut back on the amount of medication I need, which is good because every single one of these meds is severely sedating and it was badly affecting my ability to think straight. If I were still trying to eat, I would be taking every single one of those nausea meds at the maximum dose, and still wouldn't be able to eat enough to maintain my weight.

[Photo of me holding my tube. The J tube section is visible, the G tube is hidden behind my hand, and there's a little cloth thing from Trendie Tubies around the base, with owls on it.]

But I had to fight for this tube. Even though it was the only way to save my life. I had to fight against people who were certain I was better off dead. And I needed the help of a lot of people on the Internet, to do it. When I did get the tube, it was done without a working anesthetic. And even though the local anesthesia didn't work on me, even though I was yelling and screaming, they didn't stop to give me more, they just kept telling me that the Versed meant I wouldn't remember it later. Yeah right. It seemed like the entire process of getting the tube was one giant clusterfuck after another, and like people were making it as hard for me as they possibly could. (Later, when I had to get the tube replaced, we discovered that Propofol is the med, in combination with others, that really does the trick to keep me unaware of what's happening.) They treated me like a child, repeatedly expressing the fear that I would pull the tube out like young children often do, and blaming me when part of the tube got lodged inside me, probably as a result of over zealous physical therapy early on that was a clusterfuck in its own right.

But I got the tube and I couldn't be happier with it. I feel happier and healthier. After aspirating reflux several times a week for months, I haven't aspirated a single time in the month or so I've had the tube. My nausea is well controlled. My brain and body work better. Despite a couple complications since then, it's still the best thing medically that's happened to me in the past year. And I'm still alive, which even by now I might not have been if I kept getting infection after infection.

[The x ray showing the tube inside my body.]

Why did I have to fight so hard for it? I see two major reasons. One is that I'm perceived by medical professionals as someone whose life doesn't matter much, doesn't have much quality of life. I'm autistic, they read me as severely cognitively impaired, I am in bed all the time, they don't see that I enjoy living as much as anyone else does, and they make that decision somewhere in their heads without even noticing.

The other reason is the way medical professionals see feeding tubes. I've been trying to read the writing of nurses and doctors to find out their views on these things. Not just the horrible ones. The ones who snark at patients on their blogs. But the ones who think they're compassionate and sympathetic and good at their jobs. But in one area that makes no difference:

They all think of feeding tubes as the beginning of the end. They see getting a feeding tube as the first sign that your life as over. Possibly that you belong in a nursing home, as if anyone does. When I made out my living will, the first question of “Where do you draw the line where you want to stop living?” was whether I wanted to live if it meant I needed a feeding tube. They see people with feeding tubes as the first stop on the route to a living death. Other things they see that way are using a ventilator, having a trach, needing any sort of similar mechanical assistance to survive.

My friends see it a different way. They see me as some cool kind of cyborg, with the oxygen, the feeding tube, and the Interstim implant that prevents spasticity in my urethra, allowing me to urinate. They say the sounds my oxygen concentrator makes sound almost steampunk. But then all my friends are disabled, they see adaptive equipment as cool, and as a means to living, not a sign you're dying.

Medical professionals have been shown time and time again, to rate disabled people's quality of life lower than we rate our own quality of life. And yet time and time again, they see themselves as the experts on what our real quality of life is. One reason I try to keep my lungs and my guts in good condition is that as a person who is autistic and physically disabled, I know that if I ever got bad enough to need a transplant, I'd probably die. Because they would take one look at how I sound on paper, and they would decide my life wasn't as worth living as that of a twenty year old who wasn't disabled except for the effects of their lung problems or digestive problems. (Lung transplant is the end of the line for severe bronchiectasis. My bronchiectasis is mild, I'm working hard at keeping it that way. Transplant is also the end of the line for very severe gastroparesis combined with other gut problems. I'm hoping I don't get to that point despite severe gastroparesis. Given how hard it was just to get a feeding tube, which is the standard treatment when you start aspirating this much and being unable to eat even a liquid diet, I don't know that I stand a chance at making the transplant list should I need one.)

I also had trouble getting home. People were asking me if I belonged in a nursing home, or at least in twenty four hour care. I'm not sure why. It's not like it's hard to care for a GJ tube. It's unusual, but it's certainly easier than my old med regimen, which was truly difficult and time consuming. Now we just mix them up, put them in a syringe, and stick them straight into the tube. Easy. Eating is easier too, no more worrying I will throw up, and you only need to set up the food once a day and press a button on a feeding pump. But everyone has this illusion that it's incredibly difficult, and the VNA loves to take people with tubes and stick us in nursing homes claiming they can no longer care for us on the outside.

[The feeding pump on an IV pole with the food (Osmolite, low fat, high protein, no fiber) hanging above it.]

I still don't understand what the big deal is supposed to be. By the time you get a feeding tube, eating is really hard. Either you're having swallowing problems, or something is wrong with your stomach. In my case, my stomach was emptying so slowly that I was constantly severely nauseated no matter how little I ate, I was dropping weight way too fast, and I was aspirating reflux caused by all the food sitting around for ages. I was quite possibly going to die from repeated infections. How the hell is a feeding tube supposed to be worse than that?

I can't even begin to comprehend the fear of these things. I mean I literally can't do it. It makes no sense. It's all based in prejudice. It has nothing to do with the reality of a feeding tube.

I thought the worst part would be not being able to eat. The most I can do is drink a tiny bit of ginger ale, and I have to be very careful even with that. But I don't miss food. The feeding tube ensures that I am never hungry, and always have the nutrients I need. The only times I have ever started craving food, were two separate days where I spent all day at the emergency room unable to use my tube. Each time I came home and wanted to eat or drink something I didn't normally want to eat or drink. But when I'm getting food regularly, it's not a problem. I barely miss eating at all. I never even think about it. Even the vivid dreams I'd been having about all different kinds of food, all those months on Ensure, have gone away. My body seems perfectly satisfied with what it's getting, and it doesn't crave things unless I can't use the tube.

And it makes everything easier. Food is easier. Medication is easier. Absolutely nothing is any harder than normal. It's more like dealing with something easy and mechanical, than dealing with anything hard. We did learn the hard way to flush it with coke after every medication, because by the time there was a clog, you couldn't get enough coke in to dissolve it. So we are dissolving the clogs before they can even form, by leaving coke in for awhile after every single time we use meds. I've also discovered it's possible to reduce the pressure inside me — which can prevent the meds and water from flowing into me as easily — by relaxing my body, especially my rectum, and then everything usually flows in pretty easily. So there are a few tricks, but it has overall been much easier than my life was before I got the tube.

So what is so scary? I don't know. I can't find anything at all scary about this. It doesn't mean anything horrible. It means I'm alive. Being alive is a good thing. I don't fear death, but I only get one chance at life, and I don't want to die just because someone else has decided my life isn't worth enough to them. And so I'm very much interested in anything that will keep me alive longer, whether it's a feeding tube or any other “scary” device used for keeping disabled people around longer than used to be possible.

A lot of people I know have those devices, the ones that medical professionals think your life is over. Feeding tubes. Trachs. Ventilators. Catheters. Ostomies. Central lines. All those things that seem to scare people to death, even though there's nothing scary about them. They prolong life, not end it. And I'm furious at every single doctor who urged me to go home and die rather than get this feeding tube and get a chance to live longer. That is simply not their decision to make, and they were bound and determined to make it for me until I got enough people on my side to convince them that the entire world was watching the crap they were trying to pull.

I am going to work as hard as I can, to change hospital policy so that nobody gets pressured in the way I did. It's incredibly difficult to deal with pressure to die, when you're already sick and exhausted and have no energy to fight back. And they do it in sneaky ways, so that if I had been delirious or something, which I often am in the hospital, I might not have recognized what they were trying to do. My experiences are far from unusual, many disabled people have been encouraged to die rather than get a feeding tube, or a vent, or something else that would allow us to live. My mother, who has many of the same conditions I do, is going through a mess where doctor after doctor refuses to treat her or perform surgery on her, and she keeps having to go back to the Mayo clinic because they're the only ones who seem to be committed to making sure she can live as long as possible. And as a disabled senior citizen way below the poverty line, she gets the “your life isn't worth it to us” thing from at least three different angles. This stuff isn't unique to my life, the pressure to die is everywhere.

But most disabled people, like most people in general, prefer to be alive. Being disabled rarely changes that fact, not on its own. And the fact that anyone thinks we ought not to, that their pity goes so far as to be a death wish aimed at another person, is so disgusting I don't even have words for it. But they are the ones who are disgusted at my advance directive, which tells them to keep me alive no matter what. I can hear it in the sound of their voice when they ask me about advance directives. Advance directives are supposed to be about making your own choices, but the choice to live is the least respected among them. They would rather I not be here by now, rather I got my sixth, seventh, eighth infection until my lungs finally gave out. I refuse to give them the satisfaction. I love being alive and a tube doesn't change that one bit, in fact it makes my life better.

 

A bunch of stuff that needed saying

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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.

“I don’t know that person’s program.”

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That's a sentence I've heard a lot. And when they don't say exactly that, they say things that mean the same thing. Usually in the developmental disability system, for some reason, although I can easily imagine it in other contexts.

What it really means:

“DD people aren't like regular people. When people do things to them that would be horrible if they happened to other people, there's always a logical reason that justifies whatever is happening. Staff and case managers rarely if ever abuse power. All of their decisions have the best interests of clients at heart. So if something looks terrible, chances are that there's a reasonable explanation behind it. I just don't know what that explanation is. And I likely never will, so I'm not going to judge.”

They say this when staff scream at an old woman with an unsteady gait every time she falls, and refuse to help her get back up or allow her to hold onto things for balance.

They say this when staff publicly humiliate a man who clearly has trouble moving to avoid obstacles, when he accidentally bumps into someone.

They say this when staff do their best to keep a boyfriend and girlfriend apart. Or when staff are okay with boyfriend and girlfriend, but balk at the idea that two women with intellectual disabilities have fallen in love. As if it's even their job to decide who can love who.

They say this when parents simultaneously put on a big public show of wishing their son could move out on his own like he wants to, but sabotage his every attempt to do so. Because they had planned out a whole life for him in the group home they run, and can't handle the idea that he doesn't want to live under their control the rest of his life.

They say this when a staff person kisses a grown man's leg and says “I kiss you boo boo aww betta!” in baby talk.

They say this when, in the name of integration, staff prohibit disabled people from speaking or socializing with each other. I just saw an instance of that last one, which is why I finally remembered to write a post on the matter.

They say this when we get outright tortured. Tied down. Skin shocked. Slapped. Pinched. Made to smell ammonia.

I wish I could upload the scenes from real life that play out vividly in my head. But like as not, people likely to say these things wouldn't consider me a reliable observer. They never do, when you start pointing out the truth. When you see yourselves as people. With all that this means.

Suddenly you are either too severely disabled to understand what's happening, or you're not disabled enough to grasp why treating people like dirt is necessary. Or both at once. And they'd much rather you were highly submissive, maybe even the really cool type of client who helps staff out by giving them information about other clients.

All of this requires seeing DD people as less than. It just has to. There is no other way to justify these actions towards us.

And I know how people see us. As in, I know what we look like inside their minds. Sometimes we're human — almost, anyway. Not quite. There's something vitally important inside every real human. And to them, we either don't have it, or are missing large chunks of it. So we go around in human bodies but there's pieces missing in our minds and our souls. Even people who don't believe in souls in any religious sense, still perceive something inside us as only partial.

I know this because this is one of those viewpoints that isn't content to stay in the minds of others. It tries to force its way as deeply into us as it can manage. Until many of us look in the mirror and see only part of a person.

I can't describe the violence that involves. It's horrible. And a whole system of relating to us, forces its way into our lives. It tells us that we are taken care of, that we can relax, go to sleep, almost. And then it suffocates from inside. There's no words for it.

I suspect the drive to say this about people comes from several places at once.

If you work in the system, there's not wanting to see yourself or your coworkers or people who could be you, doing something horribly wrong. Much less on a regular basis.

I also suspect a strong desire to trust the society they live in, not to do horrible things to people. Or at least, not to do horrible things to certain kinds of people.

A member of my family once told me that it took him a long time to believe what happened to me in mental institutions. He said that in order to come to terms with the reality of the abuse, he had to destroy a strong desire to believe that the society he lived in was safe and just. Him telling me that was far more honest than a lot of people are.

That desire to trust society gets in the way of understanding every kind of injustice. I am amazed that people trust a society that does its best to shut out and destroy all but a handful of people. But they do.

And not seeing us as quite exactly people, is the one thing that you can't avoid if you think like this. Because if you see us as people, you have to see what happens to us as dreadful. And you don't immediately, upon being told of the latest awful thing, say any variant on “I don't know that person's program.”

Cats can use mirrors.

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Conventional wisdom goes that since, when given the classic and highly species-biased “mirror test”, cats “flunk” it, then they don’t know that their reflection is themselves, and don’t in fact know that mirrors reflect things and that they can see behind themselves using mirrors and so forth.

AnneC and I are trying to debunk a lot of similar myths about cats. The tests cats are given are often not cat-friendly and don’t reflect cats in their usual environment doing their usual things. And I’ve long known that Fey uses mirrors. In fact sometimes she uses two mirrors at once — the one over the sink and the one on the bathroom door — to make direct eye contact with people. More than one staff person who thought cats couldn’t use mirrors, have been startled, some even terrified, to see a cat looking them straight in the face using a mirror or two. One even screamed and dropped what she was carrying and just kept repeating, “Your cat looked at me in the mirror. Cats can’t use mirrors.”

Here’s a photo of her using one mirror to look at me as she hears me come up behind her with a camera:

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As to why that scares people? I think it’s the same phenomenon that has terrified many people about me. They see me going about my business and stereotype me as not being what they consider a real person. Then I do anything from looking at them to typing something and they visibly startle and begin to act scared. They respond to me as if a potted plant got up and walked around. And I see people doing the same to Fey all the time.

And why that is… I’m not entirely sure. I almost expect them to cross themselves like we are demon possessed. They think of us as something unnatural, something deeply wrong that just shouldn’t happen that way. And there’s something deeply wrong with that in a whole different way than what they think of us.

When all you have is a hammer…

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Let’s get two really simple things straight.

Overload is not anxiety.

Shutdown is not dissociation.

Overload may cause anxiety sometimes for some people. But it is an experience that is at the heart of things… sensory, perceptual, cognitive, whatever you want to call it. But while emotions can be involved, it really isn’t at the core an emotional experience. Get rid of the emotions and overload and shutdown will still happen for most people.

I think there are two main things at the root of this confusion:

One, overload and shutdown are not ideas psychiatric professionals are generally taught about. They generally are taught more about emotional experiences than perceptual ones.

Two, the only time many nonautistic people can be driven to something that looks like overload or shutdown is in the middle of incredibly intense emotional experiences.

I had a “friend” for awhile (in quotes because I knew her during a period where I thought friends were anyone who would tolerate my presence, even though this particular friend did a lot of things that most people wouldn’t put up with from their friends) who had been traumatized to the point where sometimes her emotions got so huge that she just froze up and couldn’t function. I frequently overloaded and shut down in front of her in a way that looked superficially similar.

Thing is, my experience of overload was this: I was simply being asked to process more information at once than was possible for me. I would hit a cognitive bottleneck and my brain would start shutting down all functions it deemed unnecessary to concentrate on processing the information so it would get working again. This could be a scary experience when I didn’t understand why it happened and fear didn’t help but it happened often enough with no help from fear or anxiety.

So even though this friend knew me at periods in my life when I frequently had speech and motor shutdowns, the last time I talked to her, she insisted on reinterpreting all of my experiences of sensory overload in terms of trauma that she imagined I experienced. Even in the face of me explaining that wasn’t the case.

(Which incidentally made me remember how often she used to take advantage of my social passivity to explain my experiences and actions to me. Even if I was able to object, she refused to listen to my objections. She just went merrily on coming up with explanations for damn near anything I did, down to the way I parted my hair. And that realization is why I now want nothing to do with her. I don’t need someone prattling on about how I part my hair for any other reason than convenience or symmetry, or creating a totally false narrative about the reasons for everything else I do. And unlike childhood, I now know I am allowed to choose my own friends.)

So according to this person, all overload is trauma-induced anxiety and all shutdown is trauma-induced dissociation. So all the times I couldn’t speak or move in her presence were automatically caused by trauma. And unlike a real friend, she’s unwilling to hear the genuine explanations. (I am glad she’s not going into psychiatry.)

And I think for her the reason she believes that is that the only thing that can cause such severe speech or motor problems in herself is severe trauma. And that is probably a reason many laypeople would leap to that conclusion.

But for psychiatrists and psychologists I think it’s related to being taught more about emotions than about certain perceptual experiences.

I once had a case manager who insisted that if I walked into a closet to get away from the language and visual overload of a meeting, then I was dissociating. She also refused to take my word for it, but in her case it was because I was just a layperson so what did I know. The fact that I have had experience with severe dissociation much of my life (mostly because of pain) and can tell a definite difference, doesn’t seem to cross such people’s minds.

I also have experiences where I find it difficult to find my body. I experience all sensory input, including that from inside my body, as external. So frequently the body awareness signals get lost in the midst of awareness of lots of other things in my environment. This isn’t dissociation. It isn’t depersonalization. I’ve had depersonalization. It’s different. This is simply an outgrowth of the way I perceive my surroundings and the way my brain orders those perceptions.

I have seen problems like this throughout literature on autism. Tony Atwood has suggested that those of us who have periodic speech problems must be experiencing anxiety. Because in nonautistic people, such problems usually come from anxiety and psychiatry calls that selective mutism. Certainly anxiety doesn’t help, and some autistic people do experience speech trouble because of anxiety. But the reason speech drops out for many of us before other things is it uses a ton of resources for most autistic people. It is cognitively difficult and it requires thinking, moving in complex ways, and listening to this horribly loud sound in your ears that makes your head feel weird inside. It’s like that program on your computer that’s a resource hog and you have to kill it to keep the rest of the computer from grinding to a halt. So get anything else resource intensive going and speech can just vanish. It’s hanging by a thread. In one of my climbing analogies it’s like hanging on a cliff by your fingertips instead of standing on solid ground and when you fall, it goes away. (And for some of us we are too badly injured in the fall to ever climb so high again.)

But that is one reason a well known autism “expert” once told me that if she could reduce my anxiety, I wouldn’t need to use a keyboard. Hello? It’s been over ten years, my anxiety has steadily reduced, and my speech has steadily reduced as well. When I met her the periods without usable speech had stretched to include most of the day. Now they’re all of the day. Reducing anxiety didn’t help.

And that’s where these interpretations are a problem. If anxiety is a component of overload by all means try to do something about it. Same if pain is part of overload. But as I discovered once my anxiety and pain had been reduced drastically (and all the pain related warnings I got about overload were gone, so I had no way to predict it)… I went to a grocery store. And… everything around me speeded up. My brain felt like it was slogging through molasses. And I got slower and slower until I just, very calmly and painlessly (but still with a sort of cognitive discomfort)… stopped. Because anxiety and pain are not at the core of overload and shutdown, they are just elements that can make it worse if they happen to exist.

And the misinterpretation is a problem because if you assume that these are at heart emotional experiences, then you will spend a whole lot of time trying to move emotions around believing it will solve overload. When the real solution to overload is learning to detect and manage it by identifying what causes it and what should be done with it. If anxiety is a factor then you should certainly do whatever you can to get it under control. But at most it’s a factor.

Overload is about a brain not having enough resources to process all the information it’s dealing with. Shutdown is about a brain doing the equivalent of a computer killing off processes that make the computer run too slow. They are not the same as anxiety and dissociation. Treating them (and other cognitive, sensory, or perceptual experiences) as if they are, doesn’t help.

Human instincts, survival-related and otherwise

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Some people seem terrified of the idea that human beings have instincts. I don’t hold that view. I find human instincts fascinating — the way we just know things, or do things, based on things that are built into us very deeply. I don’t mean to say that all humans have identical instincts, just that we all have them.

I have terrible body awareness. I often can’t locate pain at all, and if I do it’s often because someone has sat down and played twenty questions with me for an hour or longer. Sometimes I don’t even know I’m in pain, I just notice the responses to it and fail to connect the dots.

Which makes it astounding to me when instincts related to health or body awareness give me information out of the blue that I can’t tie to any conscious sensation.

Twice in my life I have been aware of an organ malfunction that could be life threatening if not caught and treated. The information appeared quietly and with great clarity. It was not accompanied by fear or any other emotion. The information consisted of the ideas, “Something is wrong with one of my organs. If nothing is done, I will eventually die.” This was accompanied by frequent thoughts of death — not anxious or depressed thoughts, but “hello you need to be aware of this” thoughts. In fact the lack of emotion and the quiet clarity of the information was astounding.

The problem was that neither situation showed me which organ was having problems. Luckily, in both instances someone figured out what was wrong. In one case my gallbladder had completely failed after producing two large stones (nobody had told me that early onset gallbladder disease ran in my family for generations among the women). In the other case, a pulmonologist who eventually suspected my main problem wasn’t asthma anymore, did an exhaustive set of tests until a CT scan showed a form of lung damage that is progressive and fatal if not treated (and is still more dangerous than asthma if treated, but can be managed well with regular breathing treatments).

In both cases the instinctual warning bleep stopped bleeping at me after treatment (surgery in the first case and twice-daily breathing treatments in the second).

In other cases (one in particular stands out in my memory) I have gotten a slightly different warning bleep. Again, there was no emotion attached, just quiet certainty. Despite the fact that the warning was more urgent: “You are in immediate danger of death if you don’t do something right away.” I know it’s happened more than once but the only time I can remember right now happened a couple years ago. I had just gotten back from the emergency room where I’d been treated for an impacted bowel movement and released. This was not the first or the last time this had happened. I had managed to pass an enormous stool that had blocked both my bowels and my bladder. I had been catheterized. And these sorts of things, when they had happened before, had been the beginning of the end of the problem.

But this time was different. The warning bleeps started off by telling me that under no circumstances should I be left alone. So I told someone that I didn’t know why but I needed someone to be there constantly after I got home. An hour later, the warning bleep told me I would die without assistance. I was about to tell this to the person with me when I collapsed (I could still walk part time back then) and started vomiting. The person with me called 911 and by the time I got to the hospital I was delirious and hallucinating while seeming to only half of the time be conscious. The blockage had started poisoning me and I ended up admitted to the hospital until the danger was over.

Those sorts of instincts make sense to me. It makes sense for a body to have a built in warning system. I have spoken to others with chronic health conditions or who had been in life threatening situations who know all about these warning bleeps. People who were at risk of hypothermia whose hallucinations told them not to go to sleep no matter what. People who had been hit by cars and despite confusion from concussions or blood loss, had instincts that told them not to move for any reason. This stuff makes sense even though it is still in the realm of cool and amazing, especially amazing in those who otherwise lack body awareness.

But the one that is happening to me right now seems outright strange. I can’t figure out why it would be an important instinct. My menstrual periods stopped over a year ago. The only way for me to have a period is to induce it with hormones, and even then it’s not the super-heavy kind normally expected after a seven-month break.

The weird part? I’ve skipped a period or two before. That’s not weird. What’s weird is that even after I’d only skipped a month, I knew for certain that it wasn’t coming back without intervention. My crotch area doesn’t feel any different from normal, I have no idea how I know this. But I still know that. It’s an absolute certainty in my head that I will not be having any non-induced periods anytime soon.

To be honest, I’m really happy about this. I almost never get migraines anymore, when before they happened all the time. My moods are totally stable. I don’t have to deal with the hygiene stuff. I wasn’t planning on having kids. There are risks to not having a period but if I have one induced only every six months I’m safe.

I just don’t understand the purpose of this instinct. Knowing my periods have stopped coming naturally, doesn’t seem to save my life. It does make me happy, but that doesn’t seem like a reason for this kind of detail in an instinct. So to me this is the strangest of all the body-related instincts I’ve ever had.

The Fireworks Are Interesting

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

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

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

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

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

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

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

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

The reality is more complicated than that.

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

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

Were original people designated as autistic.

Original people had their be.

Original people had their “seem to professionals”.

Those not the same.

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

So later version of who is autistic ==

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Aspificating snobbery over the DSM all over again

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I have seen a lot of “aspies” whining lately about the proposed changes in the DSM. Not productive critique of the new criteria, the medicalization of autistic lives, or the fact that the things most autistic people have truly in common have been left out of the criteria while peripheral things nonautistic people want to fix are spotlighted. No, nothing that useful. Just out and out whining.

“I don’t want to be associated with that other kind of autistic people,” goes the standard whine line. “You know… Those Ones.” The crazy drooling retarded low functioning diaper wearing nonverbal ones who can’t take care of themselves and need to be on welfare. Which one of those or many other pejorative categories depends on the individual variation in the snobbery. (What is it? Snob not otherwise specified? Not like those other snobs.)

I’ve written a lot of posts on this blog about aspification and snobbery of this very sort. It’s been sitting around in the autistic community for a long time. And now it’s coming out of the woodwork. I might link some of those posts once I get to my main computer, just for a refresher. But this is some of the most blatantly hateful and snobbish stuff I’ve seen in a while.

What I wrote to someone earlier:

And some of us might rightly find it insulting to be referred to as the ones that others had to be oh-so-tragically “lumped in with” (you know, “crazy”, “low functioning”, “retarded”, “autistic”, or other categories that people seem to do their darndest to distance themselves from).  Like we have disability cooties or something from the way some people behave, and like having the medical people put us in the same category as our “betters” is such a terrible threat (and like it changes anything about who any of us really are).

And it’s true. It’s insulting. It’s insulting to me. It’s insulting to anyone who bears the characteristics that any individual aspified snob might throw at us. And it ought to be insulting to all of those who don’t have disability cooties At the moment either. Anyone with any decency should be appalled that people are upset, not over anything that is really going to harm autistic people as a whole, but at the idea of being thrown in with the rest of us.

It’s especially interesting to see that one of the people most widely quoted as divorcing himself from people who wear adult diapers (like me) is someone who has never seemed to hesitate to use my writing (both with and without permission) but apparently can’t stand the thought of sharing a label with people whose underwear differs from his in certain key aspects, or with people who self-injure. I guess nobody had better tell Carley that lots of people diagnosed with Asperger’s are incontinent and/or have severe self-injury. He might want to create a divide within Asperger’s to wall himself off from such people in.

Funny but I have never minded as a person who has had both such characteristics, sharing an autism label with people without those characteristics. Anyone who delves deep enough into either science or personal experience of autistic people will find that the characteristics related to perception and cognition are the ties that bind us together, regardless of the more superficial characteristics that people divide us up by. Of the autistic people who seem to have the most similar experiences on those deep deep levels to mine, include people diagnosed as high or low functioning, Asperger and autism and PDD-NOS, with IQ scores from 20 to 160. The same can be said of those who most differ from me. The reason is the diagnostic categories are neither deep nor penetrating nor accurate. They divide those with the most in common and connect those with barely anything in common in such haphazard ways it should be obvious that they are falsity of the worst kind. And the same goes when people pick these singular outward traits and hold them up as the ultimate dividing line. Like many autistics I have been saying this since I first got a good hard look at what the categories meant. And surely the deep down bones-level traits are those that matter.

People often get the idea from the media that I prefer to be called low functioning. I don’t. I don’t think that such labels can ever capture the intricate and beautiful complexity that exists within all of us. Nobody should be reduced to such a term even when they do the harm to themself by self-applying such terms. But as a person who has received that label from several doctors without even knowing it, I will stand up and resist the way it is used, and will tell people that when they speak of what they want to do to people with that label then they mean me since I have worn that label. (It is not for them to say they make an exception for me, because when people with that label are mistreated I am mistreated because the label is forced upon me whether some random guy likes it or not. It is forced on me by doctors and by people who yell out of car windows alike and is not so easily repelled.). Such things do not fit into soundbites.

Anyway just let it be known that I totally and completely divorce myself from any person or community who shuns people like me or like any other random autistic person who doesn’t meet the standards of aspified perfection. This is not the way to celebrate human diversity and it is not the way to gain status for yourselves by throwing the rest of us to the wolves. We may share an official diagnostic category (in places where the DSM is recognized), people may finally be forced to acknowledge the sameness that many of us have believed in all along, but (thank God) we don’t all share such a terribly harmful set of ethics. And thankfully it’s okay to reject crappy ethics even if it’s not okay to reject people for having unsuitably proper characteristics.   

(“Better? Fuck better. We don’t exist for the beautiful people of the world, Ted. We’re there for the oddball. The rebel. The outcast. The geek.” A line from the movie “The Specials” that just came to mind. As it always does when I am confronted with outrageous elitism.)

Anyway as much as this is a rant against snobbery it is also a call to remember what is important. Look to that beautiful shifting central set of attributes that make us alike and different. Stop using the periphery to divide us. And just as we remember the central attributes that matter, we need to look to the central values that bring us together to assert that we are of equal value no matter how we seem to differ, that we all matter and are valuable, in a deep down way not a surface feelgood way. Because we need those roots to sustain us while other people are fleeing and pointing fingers at those they don’t want to be lumped in with. And because it’s too easy to get blown away by the ethical storms that surround situations like these.

There is so much beauty in those deep levels of who we are, and it’s so easy to forget it when people are going on at great length about how inappropriate it is to see our connections when we could be dividing on the basis of things as surface level as the fabric of our underwear or our IQ points. Yes those things can make a huge difference in how we are treated and what lives we lead, but isn’t that fact something we are trying to change, rather than intensify the oppression?

Right here, right now.

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In my last post I talked about my tendency to have an automatic and instinctive assumption that dead people were still around. Again, regardless of my current religious beliefs at any given time — I am not talking about heaven hell or purgatory, not talking about ghosts, and not talking about living on in my heart. I mean the literal assumption that they are still living. Except possibly in another time period that I have no personal access to. But I process other time periods as “now” instinctively too, so it all gets very confusing and not conducive to the English language.

I got to thinking about whether it was a more general thing about my conception of time, or some other thing beyond specifically about people who have died. And I realized I do it about objects that have been lost or irretrievably transformed, and places that have been destroyed or transformed.

When I was a kid, there was a VIC-20 game called Omega Race, and a book having to do with a character called Underdog. Both of these objects were obviously and completely lost. Not coming back. I had no particular attachment to them beyond other similar objects, but I insisted on scouring every conceivable location for them over and over again. This was not (as it looked) because I thought I might have missed a place, or (as my brother said of searching for lost items) because I “kept looking in my favorite locations hoping they would turn up”. It was because they had been right here. Right in front of me. And therefore they were right in front of me now. And there must be something wrong with me that I could no longer reach out and touch them. Because in my mind back then, “They are right here darn it, I have grabbed them a zillion times, and it makes no sense that I cannot grab them now.”

If that was traumatic (and it was), when it happens with places it is even worse. I know somewhere deep inside me that there is a Video King store, right near D&J Hobby. You go in and there are videos and Nintendo games for rent. Each video has a little tag you take off and bring to the register, and there are different ones for VHS and Beta. This exists. Now. But I go there later and it is replaced or empty. And that is hellish, because it should exist and there is no reason for it not to.

(It’s strange. Sometimes things work like this, and sometimes the moment something is out of direct perception, it never existed — I can turn around and not remember what was on my other side, move a hand and the thing I am touching is no longer there and totally forgotten. I wonder what the difference is, and why I seem to have both of those reactions instead of the reaction I have only intellectually memorized, where things change and the past and future stay firmly outside of “now”, and you remember things as past while knowing it is the past and not now. I seem to overshoot that mark in both directions.)

Sometimes this even goes for tiny changes, so that, for instance, I perceive myself as currently and simultaneously in every location I have ever been. And it also happens with myself growing and changing, such that for a long time I had constant silent and wordless conversations with my “past selves” (for lack of a better term) because they were all “right now” at once. And for awhile I would walk along routes that took me to places from my past (which I was sure were still there) and if I happened to find people from my past I would triumphantly interact with them and expect them to be as excited that they were still there as I was. (I had no way of explaining this to anyone though, so if anyone wonders the real reason I at one point started showing up at both of my elementary schools and giving long nonsensical reasons for it if asked? This is the real reason. I just had no way of saying it, so I made up the only responses that were available at the time (borrowed from dystopian novels, I think), with disastrous results on one such occasion. I knew you had to give responses, I didn’t know they had to pertain to what was going on inside my head, and if I had known I wouldn’t have been able to give one anyway.)

So I know this is how I have perceived things ever since I was old enough to figure out that unseen objects still existed (which I figured out late and sometimes still don’t know — it’s a skill that doesn’t permanently take for me, it comes and goes). I know it is not how most people perceive things, from the reactions I have gotten when I bring parts of it up with people. I can sometimes intellectually decide things are different than this, but my bones (or my brains) say otherwise. I don’t know if it’s due to my temporal lobe oddities or something else, but it is definitely related to how I perceive dead people. It’s one of those things I could never talk about or ask about growing up, where maybe if I had been able to I would have “corrected” myself. Or maybe not. But it’s still terrible to be confronted with the solid evidence that something that is right now right here, is… gone, or changed, or different. And yet even past that point, my mind still believes it is right here.

Dealing with Cats, Part 1: What is respect?

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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.

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[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.]