Tag Archives: Prejudice

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.”

If only, oh if only

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[This is for Blogging Against Disablism Day.]

I knew Adam.

I didn’t know Adam’s mother.

That’s important.

I knew Adam in terms of who he was after he’d already been created. I knew this funny, smart kid who liked to grab my hand and walk in circles with me, who fearfully tried to hide in my room every night when staff came around to tie him to his bed, who looked and sounded very non-standard, and all of these things were just part of Adam. The non-standardness no more and no less than any other part of him.

The only time I heard about Adam’s mother was through those sorts of overheard staff conversations that let you know exactly what you are to them. Through them I heard that no mother should be blamed for “giving up” a child like him, that the unusual but not unpleasant sounds he made were animalistic and unbearable to listen to, and that people like him were, in general, impossible, and should be locked up for the rest of their lives. I heard a lot of pity for his mother. I never once saw her visit — and even the most screwed-up parents usually visited their kids. She had to have at least some money because this was a private institution. But she was never there, and staff made it sound understandable that she would never want to see her child again.

I didn’t know Adam through staff eyes, and I did not know him through parental eyes either. I think this was for the best, all things considered.

And the same has been true of any disabled person I’ve known. Not all of us have been friends. Not all of us have even liked each other. There can be all sorts of negative things in between us like status and power hierarchies, stereotyping, pity, and so forth. But at the same time there’s almost always something missing that I’m glad is missing, and something there that I’m glad is there.

I have never mourned the existence of someone the first time I met them. (Or after that for that matter.)

I have never grieved that someone was not the normal person I expected and hoped for. Not even for a little bit. Not ever.

I have never “had to come to terms with” the fact that someone I knew was born different.

I have never had any urge to commiserate with anyone else over these sorts of things.

I do not look at a person and divide them artificially into the “normal” parts of them that I find tolerable and the “abnormal” parts that I find unbearable and tragic.

I do not look at my friends, compare them to other people their own age, and think how horrible it is that I don’t have the good fortune of experiencing my friends hitting all the ‘typical’ milestones for their age group, there is no sense of loss here.

These ways of thinking are just utterly and beautifully absent.

It’s right that they’re absent. It’s wrong when they’re present. I keep hearing we have to allow for the fact that it’s only natural for people (you know, real people, which I’m not) to grieve this part of our existence. How it’s just wrong, downright insensitive, to want more from people.

Want to know why I and many others I know get nervous about reading blogs by nondisabled parents of disabled people? Even many of the “positive” ones? Stuff like this (paraphrases of stuff I’ve really heard in dozens of variations for each one):

“I go into his room every night while he is sleeping. And he looks so normal. And my heart breaks wondering who he could have been if it weren’t for [insert condition here].”

“It hurts so much every time I see normal children her age. I realize how many milestones she hasn’t hit. How far behind she is. And she may never catch up…”

“Other people will grow and change, but my son will be left behind. Other people become adults, but my son will always be a child.”

“My daughter has to live in a group home because she lacks the skills necessary to live on her own.”

“They said my son would never walk, talk, or take care of himself. And now he’s done all those and more. I am so proud of him.”1

“I overflow with love and pride every time my daughter looks me in the eye, gives me a hug, or uses her words. I would not know how valuable such things are if she didn’t struggle so hard to accomplish them.”

“Life with my son is bittersweet. I love him more than life itself but I know the things he will never do and it makes me sad.”

“I am constantly having to fight to pull my daughter out of her own world and into the real world. If it weren’t for me, she would be lost.”

I could go on, but I won’t. All of these sort of comments seem to be commonplace among nondisabled parent bloggers. When I question them people tell me they can’t help their feelings. But the fact is that without certain disability prejudices, they wouldn’t feel that way. And there are right and wrong ways to write about prejudice-based feelings. The right way puts them in the context of ableism. The wrong way simply serves to reinforce ableism in readers. And for disabled readers who could actually be harmed by the prejudices behind the feelings, the wrong way can feel like the twisting of the knife.

The post I just wrote is actually from an old draft on my computer. It seems that I tried to write this in two different ways. Instead of trying to synthesize them into one post, it seems better to just post them both at once. It’s a little repetitive but I’d rather do this than lose the slightly different meanings that each one has.

Despite appearances not response to any recent discussion. Just coincidence brewing in my head for some time. Also despite appearances not poetry. Just way of handling language at the moment.

I knew you
I didn’t know your mother

I only heard about her
In gossip made by staff
The sort of words they always said
That told us who we were:
They pitied her for having a child like you
And said it was good she put you away
And anyone would do so in her place

I knew you after you were already created
And I knew you roughly the way you were

I did not wonder why you were the way you were
I did not mourn that you were not someone else
I did not have a grieving period when I got to know you
I did not compare you to other children your age and cry that you did not do the same things they did
I did not see you as a special angel or a holy innocent
I did not see you as a normal boy who was stolen and replaced by an empty shell

And that is as it should be
And that is as it should be
And that is as it should be
And that is as it should be

Nobody should experience these things when they meet someone else
Yet people stand around commiserating with each other over all of those things
I walk around on the outside
Knowing I can never be part of that
Hoping they don’t notice the knife-pain that they cause

I know I am supposed to understand
I am supposed to grant that this is all natural
I suppose I can see when the world teaches you to think a certain way
That good people will come up with horrible ideas sometimes
I know I have thought and done horrible things before

But how long do we have to be patient
While the groups of people meet with handkerchiefs in hand
And blow their noses about the existence of people like us?

How long before they too will see
Beneath their shawls of tears and pain
Lies naked bigotry?

How long before the world stops glorifying the parents’ pain
And sees it as a tragedy of prejudice
Instead of a tragedy of disability?
(If there must be tragedy

How long before we don’t have to tiptoe around
How long before we can say
This public exhibitionism of pain and suffering at our existence
Denies our full humanity

How many more disclaimers
How many more do I need to make
To show I am not evil
For pulling back the curtain on evil
Will there ever be enough
Or will this always be
That they’re victimized
By having to face the truth
Of how the way they see us
Affects the ones like you and like me

It interests me that the way you and I related to each other
Is not exceptional when it comes to us
We are those below and those below are seen as
Sticking with our own kind

It is exceptional for one of those above to like us
To not mourn for our existence
This is praised as if it’s an achievement
It is just the way things should be

When you and I liked each other
Nobody praised us
If they took the time to notice at all
They either seemed indifferent
Or tried to split us apart

Not all of us liked each other
We had our own hierarchies
And prejudices
We were not some utopia
We are just as much a part of the world
As anyone else
And some of what happened was ugly

But we still saw each other
In a way the others didn’t see us:
We saw each other as we were
Not as we could have been
The sense of tragedy was entirely absent

One day I want to walk up to a nondisabled person
Wipe the tears from my eyes and say
“How tragic — you could have been disabled
And yet” (sniffle) “you had to turn out normal” (wail)
“Oh well. There’s always hope of a cure.”

What? You don’t see each other that way?
You don’t wonder (constantly) what might have been
If only, oh if only you were disabled?

It’s very simple:
Through our own minds
We are not lost and diminished
We are not those who would otherwise have been complete
We are real and whole
Because we are


1 If the inclusion of this line seems offensive, please read the third comment on this post. I included it because the constant recitation of this line can be part of an overall pattern, that came up in a discussion between me, a nonspeaking boy, and his mother. If you use it outside of that overall pattern, I’m not talking about you. But the fact that the line is repeated to the point of cliche does mean something, and it’s not always something innocent. I also don’t mean in any context that it’s wrong to teach or learn those skills. But it can sometimes be part of a distancing, fear, and even hostility towards people who for whatever reason don’t have those skills, a sense of “If she had turned out like you, it would have been awful.” Again, if you truly don’t have that fear, I don’t mean you.

Another (misinformed medical opinion) bites the dust.

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Ten years ago, I went to the doctor. One of the things I mentioned, figuring it was just a really annoying manifestation of the movement disorder that’d recently been identified, was “I keep forgetting how to urinate.”

The doctor snapped back at me, in a tone that took me and my mother aback, “Don’t be silly. Urination isn’t voluntary.”

Unsurprisingly, I kept getting urinary tract infections. At one point my doctor actually yelled at me for not being able to give a big enough sample, even though it was bad enough at that point for there to be blood in my urine, among other signs of a nasty infection.

I get things like that a lot. Both developmentally disabled people and people who’ve been in the psych system get things like that a lot. It’s assumed that we don’t know what we are talking about, or are imagining things. So I spent a long time trying to force, cajole, etc., urine to leave my body. The good part was I had less (but, since it was intermittent, not no) trouble with incontinence. The bad part was that this was worse.

But even though I get a lot of discrimination, I also get things like the following a lot:

Nearly ten years (and a zillion UTIs) later, a nurse watched me struggle for half an hour to give a urine sample despite a full bladder and no infections. She asked me if that was common. I replied (with a huge bunch of nervousness) that it had been going on ten years and only getting worse, but that the only time I told a doctor he’d told me it was impossible. The nurse insisted on getting a doctor to refer me to a urologist.

After a bunch of really nasty tests, the urologist told me that he had located the problem. There was a lot of spasticity in my urethra, the place that urine leaves the bladder. So it was hard to get urine through it when a spasm was going on. This was fairly unsurprising because in the course of other testing people had been finding spasticity in a lot of other muscles.

So I did several months worth of a weird electronic training routine to learn how to isolate and relax that muscle. With only partial success. So the next step is trying an implant that will send signals to the muscle in question telling it to relax. It’s only minor surgery, and much as I loathe surgery I look forward to this one every time I sit on the toilet until my feet go numb.

It seems like every single time a doctor dismisses what I have to say, a later doctor will find the real cause of the problem with the right testing or exam. In fact, given my fear of doctors, I seem to have a far better track record this way than usual. They don’t always find the first thing that comes to mind, and sometimes they find something while looking for something else. One time they had to do a long methodical series of tests before finally finding something totally unexpected (a rare form of COPD (caused by, hmm, medical neglect) when their best guess had been aspirated reflux). But they always seem to find something, given enough time. Because, despite what the prejudices of some doctors might say, I never bother a doctor over nothing.

You would think this kind of track record would increase the confidence of the ones who blow me off, but there is always someone ready to believe that people who look like me can’t possibly be right if we say something’s wrong. Because apparently there aren’t enough disabled people who die or become seriously ill because of people either dismissing our observations or just dismissing our worth as human beings.