Daily Archives: March 28, 2006

Why meetings are a problem.

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I’m writing this Tuesday night, although I will probably post it Wednesday morning given how many posts I’ve made close together today. So “today” = March 28, and “tomorrow” = March 29.

I had a meeting earlier today.

As far as I can tell, I was told things like, “If you go with the fandle norblit plan, then this would galleb the noodwer sifdong in the pollafied tridge. But you’d have to do a feeping drudsy mardenforig if you want diens to rowify. And werin on zabfor invilsiddy porren the fandle norblit again so you can get the mardenforig set up.”

Of course, there were actual English words in there. I could even probably have repeated the sounds of them at the time. I could not make them lodge into anything remotely tangible in my brain. Even when I got the sounds right, they just wouldn’t touch anything. I tried banging them against my brain for awhile and gave up. The same thing happened when I tried to read the papers they had given me at the last meeting.

It’s going to be interesting when whoever is involved in this, finally notices exactly why it takes me so long to do anything official. It’s because I end up either having no clue what anyone is talking about, no clue how to talk about what I need to talk about, or both at once for even more fun. The world moves much faster than is possible to keep up with, and sometimes its regulations and such insist that I move along with it, faster than I can actually go.

Get me reading or writing about human rights, or autistic people, or certain aspects of myself, and you will find someone who is, at times, incredibly articulate and literate. Get me off of those few topics, or get me into the wrong approaches to these topics, and you’ll get someone who can’t say or understand a word.

I have a meeting tomorrow. It’s about my hands. Which are not, as far as the tests go, experiencing carpal or ulnar tunnel, or if they are, it’s too mild to show up on the tests. We’ve of course now learned that I’ve got a lot of things that would point away from carpal or ulnar tunnel as being the main cause (although I do suspect I’ve got a mild version of one or both of those in addition to whatever else is going on) of pain for me with this RSI stuff, but the hand doctor has cut me and my staff off so much that it’s impossible to get a word in edgewise. Tomorrow he is likely to make some sort of ridiculous pronouncement based on the tests.

Hands are not my best area of understanding. I am not good at communicating every little nuance of pain and other sensations, even when someone is poking at them, especially when someone is poking at them. My hand doctor is someone who believes in rushing patients through appointments so fast you barely know what hit you, and not bothering to listen to anything he doesn’t find important, as far as I can tell. Among the things he didn’t find important last time were my finger that I can’t straighten, which hurts a lot periodically, and which can’t be fixed surgically therefore it’s not even important to him to tell me why I can’t straighten it (it’s not broken or arthritic). This is probably not good for anyone, but is especially bad for an autistic person.

So tomorrow I get to go to another meeting. One in which I may or may not understand a word that’s being said. One in which I may or may not receive some of the ultimate medical insults (I always love how when something isn’t what a doctor expects, many of them blame the patient). One in which I am very likely to, unless this hand doctor changes drastically in his approach and outlook, decide to find a hand doctor willing to spend enough time to look at all possibilities. When you’re dealing medically with an autistic person, it doesn’t matter how verbal we are or seem to be, you can’t just assume that we’ll tell you the most important facts, so you have to do more work, not less. All I know is that I’m not imagining my hands hurting, and I know what my brain can and can’t generate and this version of hand pain is not in the “can” category.

But my brain is only barely even turning towards hands. For me, writing is like trying to catch a thermal: I can choose which but they have to be there. There are no thermals right now leading to the information that will help me out at an appointment with an obnoxious hand surgeon. I can’t even get myself too worried, because I can’t imagine what tomorrow will be like. I just know that with the blankness towards hands in my brain, I’m very likely to be hit out of nowhere if he decides to be too awful. And if meeting with people who wanted to take the time to communicate with me, today, was bad for comprehension…

The meaning of power.

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When I was a child, my family kept rabbits. We kept them in hutches in the backyard. They rarely got out to play or interact with anybody. They were confined to small hutches for their entire lives.

When I got older, and began to experience confinement myself, I began to see that this was wrong, but still did nothing for the rabbit who lived in a cage now high up in a tree to keep him away from the dog. I was still a child, but I was more aware that rabbits must not belong in small hutches in backyards.

As an adult, I came across information from the House Rabbit Society, which I’m now a member of. They said plainly that keeping a rabbit confined to a backyard hutch is like doing the same to a cat, or (proportionally increased) a human. They are a social species and solitary confinement is awful for them. They need room to run around and play and that is not possible in a hutch.

Nobody in our family bore the rabbits any malice. But each rabbit lived out their life in solitary confinement, and died in solitary confinement. I have experienced long-term solitary confinement, and it is not just the lack of socialization, but the lack of anything to do, the looking forward to only meals as the high point of the day, if you get those… it is highly unpleasant. It must be more unpleasant for a member of a prey species that depends on others of its kind for protection and survival at all times.

I talked to my parents about it when I found out. My mother said, “I had no idea. I had no idea.” My father said, when I brought up animal neglect, “I think I know what you are going to talk about. And… you had help [in neglecting the rabbit].”

I know that I’m now going to live forever with the fact that one animal that I could have done something about, spent his life and died in highly unpleasant circumstances, ones I know the unpleasantness of because I have been subjected to them, only he had no way out. That is the rabbit from when I was older. Aptly named, Reality.

When I was growing up, my parents told me stories about people who “let their rabbits run around the house and had them litter-box trained”. The idea always struck them as somewhat ludicrous, a little crazy. Again, they bore rabbits no malice. They would not view themselves as cruel to animals. And yet until I became old enough to learn about it, I absorbed some pretty strange values about animals (including that it was okay to dump a rabbit by the side of the road in his old age, and that, having spent his life in a cage, he would still live a wonderful life in the woods and not, say, starve or get eaten almost immediately).

a picture of a rabbit in a hutch

That is the meaning of power.

It is not comfortable. It is very possible to get defensive about it. It is scary to wake up to it. Much as Dave Hingsburger has described in Mourning Has Broken, it took a long time to fully realize what had happened.

When I posted this story elsewhere when I was finding out about this stuff, one person got very angry at me. He told me that he didn’t care if I’d found out about how things really were, it was too late, and he’d never trust me. I told him that I didn’t mind that because it might just be one of the consequences of having mistreated a rabbit, even as a kid. I will never, after all, get a chance to make his life any better, or to apologize to him. He’s dead.

I feel bad about it, but feeling bad won’t actually do anything, so I try to cut that off. What will do something is changing my ideas about power, about how I relate to the world. What will do something is telling other people what happened, what can happen, to rabbits everywhere. What will do something is applying this knowledge to other areas of my life.

There are a lot of myths about power.

One of the ones Hingsburger describes is the myth of not having any power, and therefore not being able to abuse that power. “Front line” staff often think they have no power because they are at the bottom of the staff hierarchy. But they are still above inmates/clients in the hierarchy. They can use their “powerlessness” as an excuse not to examine how they are treating other people. When I had power over that rabbit, I had power over almost nobody and nothing else in my life. But I still had power over that rabbit and I misused it, not out of intentional abuse but of neglect. (My father has pointed out that I had help. I did. But I still have some of the responsibility.)

Another myth about power (which I don’t know if it’s in Power Tools or not, because every time I buy a copy it gets snagged by staff and never returned) is that if you’re a good enough person, you will never misuse power. In fact, the more power you have over someone’s life, the more likely you will be to misuse it. Even if you love the person from the bottom of your heart.

In Same, Different, Human (a good review as well as a place to snag a Power Tools quote), Cal Montgomery says (quoting Hingsburger):

“I don’t believe that most people realize,” he tells us, that “they have power,” that “they routinely abuse that power,” that “their behaviour is invisible only to themselves,” and that “their responsibility isn’t diminished because they ‘didn’t mean to’ ” (Power Tools, p. 4). That’s not merely a description of most “direct care” staff; it’s a description of most people.

When I say that I bore the rabbit no malice, by the way, I am not trying to say that to make myself into a better person. I am saying that because it’s all the more horrifying to a lot of people the amount of damage we can do without meaning to, the amount of power we can wield without being consciously aware of it, the amount of evil things that can happen in the name of good or neutral intentions.

Some people will never force a rabbit to endure the suffering I forced (by neglect) on Reality. But everyone will be in some situation where they had power to change something bad and did not use it, or had power and misused it to do wrong. And many of us will be on the other end of it. My example is extreme. But it still happens that those without as much power in a given situation will have power exercised over them, and sometimes it will not be in a good way.

Recently I was describing the clinical words that are used on autistic people, and how there’s a difference between an adult with the power to define themselves, and a child looking up to caregivers and hearing them use certain definitions on them. Someone accused me of objectifying parents, of accusing him of abuse, and several other things.

Being aware of the power we have in the lives of others is not objectifying, and it is not necessarily an accusation of abuse. Abuse of power does not always result in the kind of abuse that people talk about as in “child abuse”.

But being unaware of power is a fast strategy to abusing it. I used to have a staff person who viewed all people as on an artificially equal plane when it came to power, she became terrified at even the mention of her having more power than some other people. The concept that, for instance, she can walk down the street without getting picked up by the cops, was more than she could take.

And she did abuse power, even though she was not abusive of people in a way that legally counts as abuse or anything like that, she was not an “abuser”. She abused power in subtle ways, controlled people, including people she loved, in subtle ways, and because she was unwilling to think about power, she was unable to curb her abuse of it. When people brought power up, she said, “I’m not that kind of person!” As if there is a specific kind of person without the potential to abuse power, and as if trying not to be “the kind of person who could abuse power” would magically make her someone who couldn’t.

When I talk about power, I am not dehumanizing anyone. People may disagree with me over how to use it, and I expect that. What surprises me still, for some reason, is the unwillingness to look at power and how it is used.

When the people with a lot of power over you are people that you know love you, screwups when it comes to power are worse. It was worse to hear from my father that I was “backsliding” when I could not do something anymore, than it was to hear it from professionals. It is worse when I am unable to type and my best friend screws something up in an attempt at translating what is happening for me, or screws up at FCing me, than when a random stranger screws something up. It is worse to hear certain things from people who love us. Their love does not make them immune to misuse (intentional or unintentional) of power, but it can make it more agonizing and problematic for us when the slipups happen.

Being a rabbit in a human household means that you have almost no ability to escape if the humans try to confine you. Being a human unable to talk back, or less able to talk back, or less able to filter information, means you have less ability to change certain ways you are being treated. A mother or father can go through years of their life innocently and lovingly describing their son, now a teenager, now an adult, as “having the mind of a 2-year-old child” and “utterly incapable of thought,” and he might be able to do very little to stop them. This is part of power too.

Misusing power does not always make you an “abuser,” nor does it always make you any less loving than the next person. But it is… a human thing to do. People do this. It happens. It doesn’t make it right. But if misusing power makes someone a bad person, then every last human being is a bad person, and I don’t think that is true. What is true is that we all have the potential to screw these things up, but we also have the potential to deal with those screwups. When I point these things out about power, it is not meant as a personal insult. It is only meant to point out things that happen to everyone. As I said in another post, it doesn’t mean I’m calling you a bad person, I’m just calling you human, and I don’t hold myself exempt from any of this.

I am also not trying to make anyone feel guilty. Feeling guilty is not useful after you’ve been reminded enough of what you’ve done, or have the potential to do. Figuring out what to do, is more useful.

Suicide and autism ‘severity’

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I recently engaged in a private conversation with someone, where we were discussing various stereotypes of the ‘ends’ of the autistic ‘spectrum’. One thing I brought up was that someone had once told me that only ‘high functioning’ people consider or commit suicide.

Given this conversation the other day, it was a little stunning to see a similar statement in an article that is supposedly about ending bias based on ‘functioning level’. The article is called Calling a Truce in the Spectrum “Wars”, by Michael John Carley. Here is the statement:

The problems people face aren’t lessened or heightened by “placement” on the spectrum. They are just different. Think about it: the higher the functioning level, the more the potential for awareness increases. So, I’m certain that when all the facts are in, the higher suicide rates will line up along the spectrum in a pattern that mirrors functioning level. Severely-affected folks aren’t generally self-aware enough to want to consider suicide.

I have known many autistic people who were considered severely affected and considered suicide. I certainly considered suicide when I was labeled severely affected. I have read things by many autistic people who attempted suicide, albeit sometimes ineptly, while labeled low-functioning and severely mentally retarded and so forth. One of the common reasons was not having our awareness of the world recognized, having it assumed that we were not “self-aware”, and knowing what the future had in store based on other people’s treatment of us.

Some of our suicide attempts are so inept that people don’t realize they’re suicide attempts. Some of my head-banging at a certain point was because I thought if I did that long enough I’d die from it. I have taken small amounts of pills honestly thinking they were enough to kill me. I know of an autistic person, who was labeled low-functioning at the time, who tried to fight taking his migraine meds thinking that maybe the migraines would kill him. Do any of these get classified as suicide attempts? Not really.

Which leads me to the question: How are the suicide rates in autistic people, particularly those without a communication system that others understand, measured?

When an autistic person “wanders off” and dies in traffic or of exposure, or “accidentally” drowns, or any of a number of other unpleasant deaths, how does anyone know this was not deliberate? I mean, it can never be known one way or the other. But why does everyone assume that some of us are simply incapable of even conceiving of suicide, and that they can tell, by sight, which ones we are?

I don’t think a suicide rate will ever be able to be measured, because most such deaths, like many of our actions, will be ruled accidental, not possibly having anything to do with conscious will or decision. And some of them will be accidental, but some of them will be suicide.

I do not say this because I think autism is a good reason to kill yourself. But I would be a fool not to acknowledge how hard society makes it to live a good life and imagine a good future for yourself when you are an autistic person. The pressures are very real. The pressure to see your life as lesser and not worth living is very real too. And it does a disservice to those labeled low-functioning to say that they/we/whoever-is-in-that-category-at-the-moment are going to be automatically less self-aware, less capable of thinking of suicide. (As far as self-awareness goes, it seems independent of ‘functioning level’ as far as I can tell. I also don’t think that full self-awareness leads to suicidality.)

This is not an attempt to engage in the “suffering competitions” that Michael John Carley is writing about. It’s more to say, a lot of ideas about those labeled low-functioning or severe, are not accurate, and being regarded the way Carley regards some people, even though he clearly does so with no malice, is part of what causes some people’s suffering to begin with. I suspect the suicide rates, as well for that matter as the ‘self-awareness’ rates, are similar across the ‘spectrum’, except that some people will be unable to complete suicide due to lack of knowledge of how to do it or lack of control over one’s own actions. When some of us despair, our actions are not considered the result of despair, but merely inexplicable behavior problems, or “accidents,” or other things like that. This does not mean we are any less capable of despair than the next person.

I agree with Carley that we should not be fighting based on “functioning level”. But at the same time, as long as “high functioning” people are going to be misrepresented one way, and “low functioning” people are going to be misrepresented another (that Carley actively engages in), there is going to be unnecessary friction.

“I know who you are and I want that person back.”

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I thought I had written a blog entry about this topic already. I looked around, though, and all I could find were things that touched on the topic without making it the main point of the entry. So here, I am writing about how other people think about regression.

Before I get started, I want to point out that non-autistic people do things that, were they autistic, would probably get called regression. They lose the ability to make and discriminate certain differences in sound, an ability I never lost. They lose the ability to discriminate between non-human faces. This is considered a necessary part of their development. When autistic people lose abilities or appear to do so, the reason it gets called regression is not because we are losing abilities, but because the abilities we are (or appear to be) losing are ones that are very important to the people who get to define what is and isn’t regression.

But there’s something that happens to autistic people, when we change in certain ways.

Other people have an imaginary version of us in their head. That imaginary version of us grows along with what they have imagined up about how non-autistic people grow. That imaginary version, that ghost, grows right alongside the autistic child. But it is a ghost, and it is imaginary, it is not a real person.

I have undergone two major periods of drastic change in my life, that most people would label regression. I believe those periods to be not only not what people thought they were, but important and essential periods of growth. I was growing forwards, not backwards. But nobody could see the trajectory.

The result of this is that most people had formed ghost-images of who they thought I was and would become, in their heads. Some of them loved these ghosts with all their hearts. When they talked about wanting the real person back, they were talking about wanting me to mirror the ghosts.

But I am not a ghost. I am a flesh and blood human being. My growth does not change just because some of the people that know me have ghosts in their heads.

Many people experience this phenomenon, to a degree, when they merely make decisions that are different from what their loved ones want. Imagine for a moment that it’s not a decision, it’s your entire brain shifting around, focusing on some things that a lot of people find unimportant or bad, failing to focus on some things that a lot of people find important or good. Imagine that the things it is focusing on are exactly what you need to be focusing on. You are becoming the sort of person you need to be.

Then someone says, “I want the old you back. I want the real you back.”

Now certainly who I really was in the worst of the professional days was not who the professionals saw me as. There was a lot that people did not see about me. But who I really was was also not the ghost in my loved ones’ minds.

“I want the real you back” prompts the questions, “Do you know me? Would you love me if you found out this is the real me? Aren’t you supposed to love who I am, not who you imagine?”

Before anyone lashes out at me about that, those are just the natural sorts of thoughts that will flash through the head of many people whose loved ones are trying their best to rescue them from being who they are. Whether you do the things that frequently create those thoughts is entirely up to you.

By the way, this is even true of changes that are traditionally viewed as very negative. I have known of many people who, after brain damage, have all their friends say they want them to be the person they were before the brain damage. It doesn’t happen. It’s not real. It hurts them. It’s not that they wanted to get knocked on the head, it’s that who they are now happens to be a person who got knocked on the head, not the imaginary person that didn’t.

I happen to view the changes that have happened in my life as, mostly, different than getting knocked on the head. I would do them all over the same way, with one exception: I would have rather the people around me had not spent so much time referring to “progress” when I became more as they wanted, and “backsliding” or “regression” when I became less as they wanted, I would have rather not been set the impossible task of being someone I could never be, I would have rather never heard “I’m seeing a bit of the old Amanda” or “I want the old Amanda back”.

That can’t change. I don’t want apologies or discussions on the topic from people who were there at the time for me. It’s done. I’d rather not think about it, frankly. But I am writing this for the people who have the power to change that for their loved ones, right now, or who will in the future. That, rather than silly attempts to change the past, is what I’m after.

Also try to remember that some things you think you see in autistic people aren’t going to be true. Absence of certain behavior does not always mean absence of a loving nature, absence of understanding of certain things, etc. (I still get regularly accused of heartlessness, nothing could be further from the truth.) And what you view as your ordinary child being missing and stolen… no.

Now, after writing this, I see that I have written a few things about this on my other blog.

See: