Thursday, November 3, 2016

Modern ABA

People claim it's not that type of ABA, it's modern, it's kinder, and gentler, it's not abuse. They try to remove our words claiming that what we're talking about isn't what they know, or what they do.

But we do know.

It's not kind to have a child hear hundreds of times a day how they're wrong. It's been a minute, you're wrong. It's been another minute, you're wrong. Why? Because you're autistic, you're wrong. You flapped a hand, you're wrong. You aren't currently writing an answer because you're thinking, you're wrong.

That's part of the program of multiple children I know, at multiple different schools.

It's not gentle to a child to grab and restrain them because they're sobbing. Grab them, pull them out of the room, throw them elsewhere. Crying isn't allowed for autistic children. Being upset about change isn't allowed, it's showing that you're autistic.

That's part of the program of another child I know. Restraint and seclusion for crying or yelling. Too disruptive. Time for another restraint. Maybe this time the point will get through that you're only allowed to do exactly what you're told to, not do things like show emotion.

These are places that are considered "kind" and "gentle", modern ABA.

They don't do the same things as they did in the 80s, but still, they restrict all activities that are used to regulate a child's sensory system, and they must be "earned", one minute at a time.

They're still places which write a child's bathroom usage into their ABA program.

They're still places which say if you haven't finished your work by lunch time, you're not allowed to eat anything until you've finished all your work. You need to stay here, and keep working while all your friends eat lunch and go to recess, no matter how hungry you are. You didn't do your work. Even if you worked non-stop. Food is for efficient workers.

They're still places which say swearing is enough reason to remove a child's favorite part of a day. That they hadn't been needing to earn in the first place.

They're still places which every one, three, five minutes a child is told everything they're doing wrong.

They're still places which use restraint and seclusion. Not to mention restraint and seclusion for things like being upset about change.

This is modern ABA. Every one of these things is something I've seen written into an ABA program in the last 5 years.

And none of this list gets across the pain.

None of it can explain the amounts of self-injury I see because of what is being done to them while adults are telling a child over and over how much they're a horrible person, which gets followed up by immediate restraint because of people being called a danger to themselves and others.

Or the amounts of teachers getting away with making children repeating work while watching classmates play because they felt like it and the reason being given just being "I felt like it".

Stimming becoming hated. Scripting becoming hated. Autism becoming hated. Because all adults say how autism is bad. And yet, everyone knows they're autistic. Children acting "less autistic", but doing so because of learning to hate everything about themselves. I cry every summer, not knowing if my students who I care about will still be there when I return.

Tuesday, November 1, 2016

Today I am silent

Today I am silent.

That is it's own form of communication. Choosing to not engage in the unspoken rituals expected of us. It's own form of saying, no, I'm doing my thing, what is right for me.

I make that choice. Limiting my speech to that which I choose, that which I deem worth the cost; that which I deem necessary; that which I deem worth enough to deal with the downsides. Otherwise, I can choose to be silent.

Smalltalk around me. I don't need to reply.

I can choose my self-care as more important than making others more comfortable with this uncanny valley person that is me. I can choose to say no.

I'm asked dehumanizing questions, the emotional labor expected of a token autistic in an unfriendly environment.

But I don't need to honor them. I can take care of myself.

It's my choice. My decision. My desires which matter. It's my needs which I value, as I say, I don't need to speak.

And that's why today I'm silent.

Because today, I rest.

Wednesday, October 26, 2016

Simple repetition was supposed to be enough

It was first grade and they were determining what books we were able and allowed to read. We were sorted into levels, to make it easy for the teacher to know what we wouldn't be given something too difficult.

"Read a page, and hold up a finger when you can't say the word, if you reach five words go down a level". It didn't matter if I know the meanings.

Later on they put me into speech, but by then my book level was already decided.

Someone came once a week and took me down to an office. The flip book set up, read the words. They were always the same words. Like simple repetition would make me start speaking properly.

"No, that's wrong, say this"
"That's what I just said"
repeat after me - elongated sounds - like that makes a difference
I say exactly what I've been saying, because I hear no difference.

Like simple repetition would make me start speaking properly.

Why should I expect things like actually telling me more than that I'm wrong? Like how I'm different than you, or how to do what you want me to do? Or anything at all more than, you're wrong, try again, say the same words. You know the list. It's time to tell me that people like me are wrong. Simple repetition should make me start speaking properly.

Years pass, with weekly sessions. I get used to people telling me my speech is wrong, in speech therapy, bullies who want to find anything different about me, people just saying it without thinking about the affects of their words.

They want to fix my speech, make it normal. I'm getting tired of not even knowing why I'm going. Apparently sometimes I can't say "cold" different than "cod" or "thhhh" different than "ssss" but those I know because people have commented on them being better now. Nobody tells me what I'm doing wrong, just that it's wrong.

Telling me it's wrong should be enough to make it better.

Is it like they think I'm choosing to speak wrong? Willful disobedience? Is that why it's not important to give me details of what I'm supposed to do.

Years pass.

Nine years after my first speech therapist, someone listens to the fact that I don't hear a difference between what I'm saying and what they're saying. She starts using a tape recorder in some of the sessions to let me hear the difference.

Nine. Years. Later.

Monday, October 17, 2016

Professional vs. Autistic

So, Theory of Mind. This "how people think about others thinking" or whatever. It's claimed autistic people can't do that. There are so many different things out there claiming that people like don't have the ability to think about how others think - their thoughts, their perspectives, their needs.

And I teach. I teach neurodivergent people. Frequently autistic. And teach neurodivergently.

And I talk to people about autism.

So I can tell you, people don't listen to an autistic adult. It doesn't matter how interested in autism they are, they don't care at all about hearing voices of an adult who actually lives this life. I tell people about my life and I've been told things like "It doesn't matter that people don't do anything for autistic adults because they do so much for children" (yes, that's a quote, in response to me not even requesting things being done for me). I'm told "that can't be true" (heard that many times.) I'm told that I'm just an exception, so I don't matter. I'm literally spoken over, have people start ignoring my presence, have people start trying to make sure nobody else can speak to me, am followed around purposefully triggering migraines.

People don't listen to an autistic adult.

They do listen to a professional.

I'm someone who works with autistic students? Awesome! I know so much about autism! I'm one of the first people to ask! Question after question comes at me. Can I teach these people with my free time that I don't have?

As soon as I'm seen as a Professional, I'm knowledgeable.

As soon as I'm Autistic, I'm too "High Functioning" to know what Real autism is like"

Professional, help fix this problem of nobody knowing anything!
Autistic, you can't know how to work with people.
Professional, teacher.
Autistic, broken.

Let's circle back to that theory of mind I mentioned before getting into this.

When I'm seen as autistic, I'm seen as not being able to understand autism. I'm seen as not being able to understand myself.

When I'm seen as a professional, I'm seen as being able to understand others.

An autistic professional, I'm seen as necessarily not only having this theoretical Theory of Mind concept that is thrown around in order to kick down autistic people because of us thinking differently, I'm seen as I should theoretically understand others better than I understand myself. I should understand others so well that I can speak for them (which isn't a thing ANYONE can do, but I'm told I should be able to). And yet, I can't speak for myself.

Everything is backwards from what it's "supposed to be". Because both sides are broken and wrong, and I'm able to think about myself and able to think about others, and can be an autistic person who teaches autistic people and it's not contradictory. But, with how I'm treated, you'd think it is.

Sunday, October 9, 2016

Passing is erasure

People talk about "Passing Privilege".
Or there's "High Functioning" that is defined so frequently on how disabled you look.

There's this overarching idea in the language used, that passing is something that is desired. Looking less disabled, more neurotypical is better, because disabled is wrong.

1. Disabled isn't wrong
2. Passing is being erased.

Being passed means being told you aren't really yourself. Being forced into an "us vs them" scenario on the other side of the us vs them - the side for the non-disabled. You're "high functioning" - one of them who's role it is to hold the others down, by lifting you up to almost human.

Being passed means being told you don't really need support; you're just lazy. Those words aren't your words, those labels are for "real disabled people". Being passed means denial of culture, denial of community, denial of social supports, and being left alone.

Being passed is lonely, and exhausting. It's not knowing when to say, but this isn't me, I really am disabled. It's not being believed when you claim that, because why weren't you "disabled" all along, lazy person. It's needing support and not getting it.

And at the same time, being passed means safety. So there's the question of what's safest, because there's safety and lack of safety at the same time.

So there's questions and choices of when to erase oneself, because passing is erasure.

And there's knowing that you're seen as "acceptably disabled" and people try to use you as almost human and that your role is to be the acceptable disabled ones, and fighting that is fighting the safety of passing.

And there's knowing that safety is always at the expense of safety.

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.) 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.

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

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

Calm Body,
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.

Tuesday, April 12, 2016

They don't need to touch you

They tell you to stop.
They don't need to hold your hands down, it's so forceful.
You need to stand there, perfectly still, hands glued to your side
Until your hands are deemed to have been still long enough.

A movement begins.
And again you must stop.
And stand there until the release word is given.

Attempting to learn.
But no, a stop.
No movements allowed.
Stand there, motionless.

They don't need to hold your hands down.
Instead they take everything away,
Unless there's an immediate reply to the "Calm Body"
Forcing you back to that stand, no movements aloud.
But they don't touch you. Because they don't need to.

That's what it is to them
When we remove all recognition of who you are.

Calm Body
That's what it's called
A body which can pass, it not mattering what else is going on.

Calm Body,
In the middle of lesson,
Not mattering the disruptions. Or whether it's harder to learn.

Calm Body,
In the middle of lunch,
When it is supposed to be free time.

Calm Body,
To remind you your body isn't yours.
And school is a place of teaching compliance, not of teaching academics.

Calm Body,
Because that's all it matters to learn.
How to stand perfectly still.
Hands to your side.
Not able to move an inch.

They don't need to touch you,
They already have control.

Migraines aren't pain

Migraines aren't pain. Migraines aren't bad headaches. Migraines aren't "oh, yeah, everyone has headaches" or even "yeah, everyone has migraines sometimes"

Migraines are being trapped.

They're the exhaustion of watching, searching, finding every trigger you have, and knowing no matter how hard you look you'll miss them.
They're the exhaustion of trying, time after time, to find safe activities, but instead finding more places that are neurologically unsafe.
They're the exhaustion of needing to rely on others, because of not being safe to drive and public transit being inaccessible. And cities in general being inaccessible, so not being able to so much as live somewhere with public transit.
They're the exhaustion of trying. And the hopelessness of failing.
They're the trapped of knowing that people say they care and don't.
The trapped of knowing that every mistake you do costs.
The trapped of knowing that every time you go anywhere you are weighing the cost over the otherwise trapped of never leaving.
The trapped of wanting to do things.
The trapped of making things not happen and knowing it is because of you.

Migraines aren't pain. They're the work of trying to manage.

They're the knowing how it doesn't matter how much you do, you'll still end up in migraine anyways.
They're the knowing that if you don't try it'll be so much worse than if you do, so that statement of "it doesn't matter" is wrong.
They're the knowing that more of your energy goes to trying to manage trigger avoidance than actually manage activities you enjoy.
They're the burnout when you've run out of spoons simply by trying to manage, not by trying to do.
And they're the trying and trying and trying and trying and trying too long and too hard to the point you hurt yourself in the process.

Migraines aren't pain. They're fear of unknown.

They're needing to be prepared for every situation.
They're needing to know that migraines might, and will, occur, in the least expected times.
They're needing safety plans.
And plans for simple things. Like what do I do when my brain will not see.
They're needing escape plans.
And to always plan everything to the last detail in order to have a chance they might be safe.
They're needing to carry so much that people watch suspiciously.
They're needing to train yourself to react appropriately to your body's own reactions.
They're needing to know what to do when because the unknown means not prepared.

Migraines aren't pain. They're work. They're exhaustion. They're misunderstandings. They're flailing around trying to catch anything to hold onto in order to get through a situation when you are both cognitively struggling and needing to escape. They're people telling you that everything happening isn't real. They're hearing that you're over-reactive, faking, none of what bothers you really exists.

And they are pain - but the pain they are isn't just physical. It's pain of trying and failing, and just wanting to curl up and cry because how many times can you go out and fight a world to simply exist in it.

Tuesday, April 5, 2016

Welcome to April

Welcome to April. The month where when you're autistic, no matter where you turn you know you're not worth as much.

The month where it doesn't matter how hard you try to protect yourself, it seeps through, permeating your existence in ways you wouldn't imagine possible. You can't possibly think you are really worthy, can you? It's April. We call it "Autism Awareness Month", but it is actually "awareness of how much we hate you".

I'd say it was Autism Hatred Month if the hatred wasn't year round, with the surge in April of inability to avoid. Because that's what the awareness is of - how much of a burden we are, how much we shouldn't exist. How much an able person might be able to make a positive statement about an autistic person once, but only if it is speaking about how we are one of the good ones, saying someone is not really disabled.

It's the month where if you leave your home, there is blue, lighting up the streets, speaking about how much money should be spent on trying to find a cause so we can abort anyone who might possibly be like us.

It's the month where you don't need to leave your home to see the reminders of people trying to fix us or remove us, because they're plastered all over the internet. Autism awareness! Autism speaks! Blue! Donate money! Cure cure cure! ABA! Indistinguishable from Peers!

It's the month where you hear people speaking over and over about how much they do for autism, but none of these people stop and listen. And it's "for autism" rather than even "for autistic people". It's the month where autism is the latest way that people claim to be doing good but actually are just claiming attention while not actually helping any of the people they're claiming to help.

It's the month where if you're autistic, you know you're hated.

Because you see hatred all around. You don't have a choice.
You act autistic, and people have it in their minds, they are "aware", but that doesn't mean they are happy, they think autism and they think bad.
You see the people defending abuse in the name of "because the children are autistic", because the fights break out time after time, everywhere you go online.
You hear, time after time, that autistic words are wrong, acceptance is wrong.

Welcome to April. The time of people claiming superiority.
Because they're better,
And someone like me will never be good enough.
That's what awareness means.

Friday, February 19, 2016

I don't work in special ed

I don't work in special ed.
I work in education, yes.
I work with disabled children yes.
But I don't work in special ed.

I don't "special teach", I teach.

These aren't "special children", they're children.

There is nothing special about what I do besides the fact that I am actually recognizing the humanity in people and working with them despite what everything around me tells me I'm supposed to do. And their shouldn't be anything special about that.

Because they aren't special others who need some label of differing.

They're people who need it acknowledged that they are disabled. And accommodations rather than methods teaching them to be a way they aren't. And people who will treat them as human rather than subhuman "special" beings.

So, I don't work in any sort of special education, any sort of education which will other their students by it's own name. That's not what I do.

I work with disabled children. I work in education. I work with autistic students.
And that difference in language matters.

Thursday, January 7, 2016

Privacy and [not] writing about children

Usually when I'm writing I have something like five different ideas floating around that I want to write about and share. And usually, a limited portion of one of these five ideas makes it through into a form which I will share with other people.

You might say "oh, of course, there are communication difficulties with autism", and I've heard these types of things. I know that I cannot get every thought, every idea that I want to share out of my mind, and into a method which I am comfortable sharing with an audience I know to be primarily allistic. I know some people will try to turn any limitation of communication which I mention into some clinical autistic thing. But, it isn't about not being able to find the words.

It's about privacy, and privacy being more important than having stories I want to share.

People not having their experiences shared online without their consent, is more important than lessons being written using those experiences.

No matter how much there are so many things I want to share in terms of stereotypes about empathy, in terms of stories about what allistic adults think is advocating, in terms of stories of success, privacy is more important.

Even when they are positive stories - there are people on the other side, and I can't predict how they will react.
Even when they are stories about how these people are amazing - I don't know if they'll be uncomfortable being mentioned at all.
Even when everything is anonymous - I don't know whether people will see themselves and have to relive horrors from their past.

Writing about myself - I know the risks. I know what I'm choosing to say, what I'm choosing to leave out. I know how I'm choosing to make there be people who will judge me by being open about impairments, and I know how there are people who will push me away for saying that I am just as much as a person as they are.

But if I'm writing about someone else, they aren't making those decisions. I am. And even anonymously, people can be recognized by patterns.

So instead - I let these thoughts pile up in my head, and there are so many valuable stories left unshared. Stories which could teach. Stories which could help show things that are wrong with the current education practices. Stories which could be amazing examples of stereotypes being just stereotypes and often false. Stories which really could have value

But people's stories are their own to share, not mine, and whose stories there are is more valuable than any value these stories could have. They aren't mine to share. They aren't mine to give out, taking them away from the people who could choose whether or not they want them available. Even if this means so many stories will never be seen by more than a few - other stories will be in their place. Fiction by fiction writers, stories of people who can and do choose to give up their own stories, stories which are already helping us make progress.

And if I can't provide my stories, because my stories are so intertwined with children, then that is okay. My stories can be private, ones which simply help individual teachers learn. Because, once again, the children are more important than the stories.