Friday, September 30, 2016

Disabled Language

A decade ago I was good with words. Language was easy for me. Words were only infrequently lost, time was spent only on perfectionism, not on try to find ways to communicate the concept within my mind.

That's not true anymore. Between the fuzziness of migraine brain, the side effects of necessary medications, and simply not having enough spoons to spend them on language, words don't work the way they used to.

So why should I make them?

Instead of trying to have language look neurotypical, why not use neurodivergent language? For that matter, instead of trying to speak, why not type this, while words work through my fingers but wouldn't through my mouth.

Both of these rather make more sense.
And they're disabled language.

It's nouning verbs and verbing nouns (and so on, parts of speech are what you make of them). It's dropping words, and using antonyms to get my point across. It's using echolalia, and palilalia. It's repeating repetitively.

Disabled language. Disabled communication.

Incomplete sentences, improper spellings, incorrect words, and purposeful homonyms dropped into place. Built around a line that someone else has said, but now it being my line, because just because it's echolalic doesn't make it not communicative.

It's not trying too hard in times and places that spoons don't exist.

And it's having words like spoons. Words that mean things. Common language. Things that can be falled back upon in order to communicate ideas that take hours to get across.

It's forgetting halfway through a statement what it was going to be. And so what? Some of it getting across still. Or forgetting that it's been stated already and repeating, unaware what has been said.

It's playing with sounds, and the textures of the words, and the pattern of the letters on the page. Sometimes it's pretty. Sometimes, it needs to be changed to be made comfortable. Sometimes, the "wrong" grammar is write.

(And yes, I did realize what I did there, after I did so. But why change it? Why make myself go and edit mistypes when I'm making the point that I shouldn't have to. It means multiple things this way, the meaning is better this way.)

When words are hard, then they're hard. And when they're easy, they're easy. But no matter, there's no reason for me to use words that aren't mine. I shouldn't have to use words that are the proper words, just because they're proper. I should be able to just use my weird-words the way it is. Wordy-words, or unwordy-words, or wordy-unwords. Whatever. However.

Schools don't actually teach everyone.

We talk about numbers. Statistics. Policies. And too often, these numbers get ignored, it being forgotten or ignored that these are people lives.

Still, here are some more numbers.

I worked in a school which split students into different types of classes. There were the honors classes, the "normal" classes, and the "you need some extra help" classes. Along side these there were segregated autism only classes, and "it's not worth teaching you academics, lets only work on life skills" classes. But back to the standard three.

Teachers would tell everyone how unless you're in the honors classes, there's no way you could possibly go to college. They'd tell the students in the honors classes how maybe half them would graduate college. It wasn't worth trying to go to a good school, because they'd just get a lot of debt and probably fail out anyways.

You were not allowed to have an aide helping you as indicated on your IEP in an honors class. You could choose to have the class rather than the accommodation, but it was a choice. You could not do both.

And notably in a school with over 60% of the students in poverty - they were distinctly lacking in these classes. In a school where over 65% of the students are PoC, in the honors classes I worked in about over 80% of the students were white. Honors classes were for the middle-class white kids who would then go to college and then continue the standard expected life in our society.

Next, the standard, "normal", classes. These classes were about 50/50 white/PoC. Teachers would regularly tell students how much they were annoyed at them or they would never amount to anything. They were taught only via memorization, and only what was on standardized tests. The goal was graduation.

In the classes they set up for those who 'need extra help', they simply didn't teach. How to find the area of a square. Well you write down this formula, and then you copy this number written at this place in the picture into this spot, and then you type that into your calculator, now lets practice doing that and only that for the next 3 weeks, because none of you are good at math so you don't know how to do anything, I'll tell you many times how much you aren't good at math of course. That was an actual lesson. One of them which wasn't simply incorrect. Many of the lessons I saw were factually wrong.

These were the students who'd gotten into high school without anyone having bothered to try to teach them to add. It was always "of course you can't do that". In a large enough to pay attention to number of their cases, they hadn't been shown a calculator.

These were also students where, out of 30, one was white.

And students where, the discussions they had during class were topics like "how do you find a job so you can support your family". Or they were working two jobs and that's why they were missing school.

But they weren't deemed worth teaching.

Some of them I know I helped and that's not nearly enough. The system is broken. Not one class. Not one school. The system is broken.

Wednesday, September 28, 2016

Behavior Training 101

The first thing they teach you is that everything is a behavior.
The second thing is that if it's a behavior then autonomy is optional.

Earlier this week I found a workbook that was used for a mandatory training about working with students with "behavioral problems". I'll let the first of the definitions of "challenging behaviors" from such book speak for itself.

Disruptive behaviors interfere with learning and functioning but are not direction harmful. Examples: yelling, uncooperativeness, swearing, asking repetitive questions

Behavior problems means doing things that children do, that teenagers do. But these students aren't allowed to. Because everything is a behavior to be eliminated. Because these children - autistic, otherwise disabled, disproportionately PoC students, these ones in segregated classes, they're aren't allowed to simply be children.

Our second of these definitions (and the other worth including) is

Dangerous Behaviors are potentially harmful. Examples: slapping, light head banging, biting without breaking skin (self or others), bolting within a building

We're dangerous if we get overwhelmed or frustrated, if we meltdown, if we try to get away. We're dangerous if we use biting or digging fingernails into our skin as ways to cope with sensory overload. That word makes us less of a person, and more into behaviors to be fixed. We're dangerous if we show how things are.

Pretty quickly this workbook gets to ways to improve staff safety. (I'm going to note here that it's staff safety and we're not getting into improving safety of everyone.) It teaches to put a hand on the Individual's arm as the staff member walks up to the Individual, so they can't unpredictably move and hurt anyone.

Except, how many autistic people (which you know this book is primarily written about. It's all ABA based.)...how many autistic people won't be able to handle unexpected touch? Does that matter? Does our safety matter, our comfort? For those who aren't autistic, how many people at all can handle people walking up and unpredictably touching them? In the "special ed" settings I work in how many disabilities include sensitivity to touch?

But no, according to how I was trained, staff should use this method of walking up and touching people who are rather likely are hurt extremely by touch, unexpectedly. This should be done every time that staff walks near every person who has ever shown a Dangerous Behavior. (Look at those again and see how much this is everyone. Or at least if you've shown a dangerous behavior and are deemed somehow not a person. Then your Dangerous Behavior was a behavior rather than understandable frustration.)

And if you don't like the touch? Oh well, they need to get used to it.

Skimming past "other relevant factors" (such as cultural, racial, gender, and other, which has nothing cultural, racial, or gender related listed. We're autistic, we must all be 8 year old middle class white cis-boys. It'll just be listed there so we can pretend to have talked about it.) brings us to how there's an Antecedent to the Behavior which leads to a Consequence. Beyond that we have methods of helping Individuals calm down.

Methods such as telling someone to say "I want THING", where they're told what to say what they want. Or the method of prompting someone to do something every 5 or so seconds until they do it, at which point swap to a different thing to prompt for, requesting repeatedly.

Compliance training means they get what they want if the only goal is compliance.

I'm really made speechless when it comes to people even thinking these might be helpful. The former trains people to say and do what others think might help rather than do what actually helps. It makes things worse over time, by training more and more compliance and doing and saying what others say to do, even when it isn't what should be done. It makes it harder to think of what does help, because it's overshadowed by this.

The latter just makes things worse, right now. Processing takes time, and repeating now, now, now, do this now, faster than reactions can happen, when in an overwhelmed state, only makes it harder and harder and harder, to even understand. Might it be done? If I'd do it its in order to get the noise to go away so I might have enough space to think. And that assumes that there's enough processing that has happened between the repeated requests.

Help means help. This isn't help.

Beyond this lack of anything useful is the sections on physically interacting or interfering with the Individual. As I luckily never had to go through any of that training, I'm not going to look into the horrors. There is, however, half of the book on such topics, and I should simply mention the existence of quite a few holds included in this book.

This is a training session about controlling people hidden inside of a session about how to help in overwhelming situations. It's taking away autonomy for the ease of the staff, because of the Behaviors of the Individuals.

And throughout the entirety, there's two phrases which are repeated:

  • Communicate respect
  • Promote dignity
to that I really only have one reply


Inigo Montoya picture with the quote
"You keep using that word, I do not think it means what you think it means"

Tuesday, September 13, 2016

False Dichotomy

It's a false choice, I'm given. Or a real choice, but false accessibility.

A choice, pushing as much guilt onto me as possible. Trying to push responsibility onto me. Trying to force yourselves not to be accountable for any of your actions.

A false set-up. Making it so that thing can be okay for me or those I care about. Never both. And I have to choose.

That's what the people who are supposed to help us do. That's a situation I've been put in so many times I don't even think twice about it happening. Things being acceptable for me necessarily hurts others. If I'm safe, others fail. If I'm stable, others are are abused. If I'm given a chance to be healthy, then others aren't given a chance at a high-school education.

I'm given the choice. Myself or them. This false dichotomy. This "but we can't have a disabled person teach". This "but there's no way we could accommodate you". This it's My Fault if I say there are things I can't do for my own safety, but it's not anyone else's if they won't support me in ways they're required to do.

But you know what?

They're wrong. And this choice is wrong.

It's wrong because they're wrong in putting me in this situation. And it's wrong because we break it, beating them at their game of trying to force me out.

Instead my students do everything they can to accommodate me.

The adults treat scented products as more important than my presence in a room. They ignore me, insult me, and expect me to be someone I'm not.

But my students, they pay attention, and choose to help. They've recognize that my needs aren't always the same, and go so far as learn to recognize my external signs of when I might need help. I've gotten questions of what helps, and changes to the classroom based on what they know helps them in order to try to make it easier on me. Help with sensory, and executive functioning, and physical, and emotional have just been given out, as if they're not accommodations, they're the basics of how to interact, person to person.

This me or them? This is a false dichotomy. That I have to give myself up for them, or to let them fail.

This is children doing the jobs of those who are paid to help people like me.

Disabled people supporting disabled people, while we're not simply failed, but obstructed and damaged, by those who claim to help.

Wednesday, August 31, 2016

"You can't tell anyone"

This post discusses abuse in schools.

"You can't tell anyone what you see here", I'm told as I enter a room. It's supposedly for the children's benefit, to keep people from stigmatizing them further, but the stigma exists, and knowledge of what happens within one room doesn't stop that.

It's supposedly for children, but the "you'll never be allowed here again" exists. And the other unspoken, how much can these people control what I am and am not allowed to do? Or even, these are people who do have knowledge about my disability. What can they do to me?

It's given in a way that people can call friendly, can hide behind a mask of wanting to do the best for those poor disabled children, wouldn't anyone want to do the best things for them, if you don't why don't you care about them, but the threat towards those who are aware enough that maybe what is going on isn't the right thing permeates.

But in these rooms, they're hiding.

The threatening the children for being anxious. Or for taking time to process instructions. Or for having preferences. Or just because the adult feels like threatening someone. The preventing children from attempting any academics because "they aren't capable anyways". The infantalization surrounding every interaction between adult and child. No, that can't be discussed.

The restraints done for absolutely no reason. Adults doing whatever they can to escalate meltdowns. Children hearing their teachers discuss how much they hate these kids. These things can't be discussed.

Controlling every aspect of a child's life. Convincing them they're pawns that exist to serve. Children learning it is all their fault. Those can't be discussed.

Because "You can't tell anyone what you see here."

Being told it's for the children. The children will get hurt if you tell anyone. And you know this isn't true. You know the children are getting hurt, right at this moment.

And yet there's the question, will it get worse, because you've seen it, when you speak up, children are hurt in order to stop you. Things being done to them which hadn't been done before you said that no, this is not okay.

And there's the knowledge that you can't be there if they stop you from being there. How much worse it is when you can't try to save these children you care about?

So there's these threats, and they are held there, and the question keeps being, is it worth listening to the threat or not, which does the least harm?

Friday, May 13, 2016

But you wouldn't want to do that with a migraine...

There are some assumptions that are common around me. That are made about me:

  1. Migraines are headaches
  2. I cannot be as sensitive to things as I am.
  3. If others cannot understand what is going on, it is necessarily psychosomatic
  4. I would definitely never want to do anything if I have a migraine or might have a migraine.

This is about that last one.

Some people whenever they have a migraine, curl up and hide from the world. That's okay. There's nothing wrong with that response. (And in fact I highly support and suggest it for many migrainers.) I don't. I don't see myself as having that option, because I can count the number of days on one hand where I was free from migraine associated symptoms in the last 5 years.

Still, when I speak to anyone, if they find out that migraines are a part of my life, people still immediately jump to that assumption. Migraines mean hiding. People who should have nothing to say will start lecturing me about how these clearly aren't migraines because I'm not going and hiding myself away. People whose job it is to help me develop skills, do so with the assumption that my migraines will never interfere.

Think about that. I can count the number of days in the last 5 years where once you count prodrome and postdrome I wasn't in a migraine. It is less than 5. And people who are working to help me with my disability are assuming - after I tell them about my migraines - that said migraines will never be relevant.

One of the things I've been doing lately is getting O&M. It took a lot of fiddly in order to get vocational rehab to be able to cover O&M as someone who is not legally blind, but with spending a significant portion of my time with dramatically reduced field of view and blurry vision inside that, it seemed important.

At every level of this process, people have assumed the most I'd do is get to a safe space, not continue to travel without sight. Even though I explicitly spoke about how my migraines affect my vision, and how I don't want to be limited by that. People view this as about only safety, not about me being possibly able to access this I'd like to do. That's the general assumption.

Sometimes people will pay attention to me avoiding triggers, but attempting to exist with a migraine, that's something that seems unspeakable. The label of migraine suggests that the accommodations I need aren't allowed, people don't do these things with migraines.

This assumption traps me. I can't say what is going on without more discussions. If I don't say anything, then people assume I'm not in a migraine. I have the choice of either allowing myself to be in more pain because of people ignoring what matters, or dealing with people requiring information to let me simply continue in my day.

This assumption exhausts me. Because I can't simply be as a migrainer. A chronic migrainer. Someone who knows that they're going to be in migraine. And who lives like that anyways. And who wants to be accommodated like that. And who it's always a fight, because, I don't exist.

This assumption is always there. Other people think they know best.

Wednesday, May 11, 2016

I'm autistic

I'm autistic.

No, really. I'm autistic.

I'm not a person with autism. I'm clear about this. I'm explicit about this, and calling me such is disrespecting me.

So. This has been happening. This has been happening by people who consider them knowledgeable about autism, and knowledgeable about social justice. Multiple people.

People. It's not okay to override how people refer to themselves. It is not okay to go up to someone and say "I know who you are better than you do, so I am going to decide how you are spoken about." This is what you are doing. Repeatedly. Multiple of you. It is not okay.

It is not okay for you to claim social justice, when social justice to you means ablesplaining. It's not okay, to use my lived experiences as a way to somehow "prove" that you know what you're talking about. And then do it while ignoring any of my words. Ignoring even the simplest request of how you should speak about me. And yet. That's what you do.

I'm autistic.

I'll repeat that again. I say that I'm autistic. I don't need any reasons, because it is my choice.

I have reasons. I have many. But none of them matter when it comes to the simple matter of if you know and choose not to use my word, that is not okay.

My identity.
Autistic.

Sunday, May 1, 2016

Kids notice things

Kids notice things.

I was trying to figure out how to write this, and it really starts with that. Kids notice what's going on. Kids notice how you treat them. Kids notice how you treat us, and you can't claim that somehow you're making a good environment for them, when you're not providing a good environment for us.

Because they notice. And that matters.

Do you really think that disabled students don't notice that disabled adults aren't hired in their schools?

Do you really think that disabled students don't notice that the few times that we are hired our accommodations are a fight? Or that we aren't treated the same way as our peers?

Do you really think that you can claim that anywhere is inclusive, or accepting of your students, when not being inclusive or accepting of who they would be when they grow up?

Are we not good enough? While you keep telling them how can do anything! How they will be able to get any job they want! How their disability won't hold them back! But, you're telling them this when you wouldn't be willing to hire them. You're not willing to hire those of us like them. You're not willing to make it accessible for the few you might hire.

Do you think they don't notice? That you won't let someone like them nearby? Only allowing the "normal" the "good" the "acceptable" people. The people who are how you wish they would be, not how they are.

What's it like to spend so long not seeing anyone like you?
(How many groups have to ask that question, and yet, still people don't seem to be willing to learn.)

What's it like to be isolated, learning you're wrong, even if it's not explicitly taught, because you know you're different, you see you're different. And difference is repeated to be wrong.

Do you really think that kids don't notice, because they're kids?

Or is it just that you don't care.

Thursday, April 28, 2016

There are no "Real Books"

I'm not less of a reader because my books involve less paper. My books are in no way "fake", and others "real", because they are words built out of micro-encapsulated ink on a screen rather than ink printed on a paper. And these stories are no less real on any other screen. Or if they're spoken. Or if they're accessed in any other form.

Reading isn't about the physical manifestation of holding paper in your hands. While there might be things that people enjoy about paper books - that doesn't make reading about such items. It makes books enjoyable, and a particularly enjoyable way to read for some people. It doesn't make some ways of reading better or worse, some people better or worse "readers". It means that people enjoy objects, which is a worthy in itself.

You enjoying an object doesn't mean my way of reading isn't me being a reader. It doesn't mean that I am only attached to electronics to the point where I can't see any value in what books can offer. (And hey, electronics are valuable. The internet is valuable. And those of you telling me this - are doing so on the internet). It doesn't mean I'm somehow not Real.

It means I do things in ways that are accessible to me, that I do things that are preferable to me.

My kindle means I can change the font size based on what I need then. Between the smallest of small, letting me spend less time turning pages, to some of the largest sizes, when migraine auras are blurring my vision but I don't want to put down my book. It lets me mess with the pages, figuring out how many words on the page are optimal for me at this moment, decreasing words on the page as I need the decreased words in order to process any of what I see, and increasing when my processing isn't limited by number of items so much that the number of words I'm reading has such dramatic effects. My kindle means that I can read when my hands scream in pain at the lightest touch of paper, wanting me to bite them to take the pain goes away. My kindle means I can read, even in the awkward times, like when I'm needing to hide in a car during yet another event I've gone to that was promised to be Safe.

My kindle gives me the option of reading. It means that something I enjoy doing is something I can do more easily, that something that helps me relax, isn't something I need to worry about whether I can or can't do at any given point in time. My kindle gives me choice. It is my way of reading.

And there's nothing wrong with that.

And I'm not any less of a reader because my books are virtual, displayed on a screen. There aren't Real Books and Real Readers and Real ways of being. There are just preferences, things we enjoy, things that are accessible, things which aren't. And these vary person to person. It's not that some of us are right and some of us are wrong, when it comes to things as simple as how we choose to read.

Wednesday, April 20, 2016

Calm Body part 2

Calm Body, they say
Stopping your motions.
Controlling you, making that clear.

But, aside, I flap, I tap, I twirl my fingers.
That calm body doesn't apply to me.

Calm Body they say,
And they expect me to repeat.
(because clearly I've been "fixed" if I can work)

But, no,
I follow your stims, and repeat them back to you,
Listening to your body with my own.

Calm Body, they say.
And I listen
(but not how they expect)
Learning when they're there to watch
Distracting
Protecting

Calm Body, they say.
Teaching compliance,
But instead I teach you how to say no.

Calm Body,
No.
Not mine.

I flap in the hallways.
As I let them all see that I'm proud of who I am.

Not mine,
even as they pull control from me,
even as my needs are ignored,
even as I'm told "I don't really stim"

Not mine,
And I show you that.

Because even if you're hiding now, I want you to see me.

Not mine.
And I show them that.

Because If they recognize me,
maybe they'll recognize you.

But for now,
I'll just help you find ways to subvert that
Calm Body.