Friday, September 21, 2018

I walk with a long cane

My visual acuity tested at 20/10 the last time I was tested. My field of view surprises many people in how large it is. And I walk with a long cane.

I have never crossed streets by sight. Sure, I was taught to look both ways, but that was rote memorization of a movement they said to do, not anything that gave me information. Listening and hearing where the cars where and how they were moving was always how I knew when it was safe, and I didn't know this wasn't what everyone did.

Touch and sound and knowing my environment. I have grown up overwhelmed by too much and everyone assuming I knew what was going on, while I was working with other senses.

Assumptions say one thing, but I walk with a long cane.

In 2016, I got O&M after a too long of process of trying to manage the process of getting O&M as a sighted person.

And now, not feeling like I need to try so hard to do things in ways that increase pain, overload, confusion, and make it harder for me to actually complete what I'm trying to do, makes such a difference.

Not being just sighted so of course I need to use vision always when there are so many ways that vision doesn't make sense, and so many ways that if I tried to do that things would be dangerous for me, and so many ways that would mean I just can't do anything else because relying on vision costs so many spoons.

Instead being me, and using the tools that make sense at the times they make sense, and having people do sighted guide for me and recognize that is meaningful, and it being okay.

Not needing to try to be someone I'm not. Because I can't be anyone else. But what that means is recognizing how my brain works and supporting that. And as such, I memorize locations, I memorize routes to the point of being able to go miles on my bike (not to mention my feet) by the texture of the sidewalk, I listen, and when it makes sense to, I walk with a long cane.

Wednesday, May 30, 2018

More thoughts on A Wizard Alone and representation in fiction

I learned I was autistic and A Wizard Alone came out, within months of each other. This was a book I had preordered, a series that was my favorite series. It was something that I knew was going to be devoured and loved, because Young Wizards was my life at the time.

And this was when I found out that I was autistic. When suddenly, there was an autistic character in the latest book of my favorite series. And I read this book repeatedly. Whenever I needed anchoring I read this book. This book did not leave the side of my bed, because there was a character like me in a book that already meant so much to me.

And on the flip side, I could never stop being aware that it was wrong to be like me according to this book. It was good to stop being autistic. It was bad to be autistic. When I wasn't reading this repeatedly and living on the Young Wizards forums, I was living in autistic spaces, repeating amongst voices the word neurodiversity, saying that it wasn't bad to be me, being me, and trying to be loud, while not knowing how to be, as a teenager.

I was living this life where the thing grounding me, was a book that was important to me because it was already my favorite series, and was important to me because it had an autistic character, no matter how much that autistic character didn't look like me or move like me or think like me, no matter how much if the word autism wasn't said I wouldn't relate, because this larger family of autistics was a family I belonged to, and this character was someone who was like me and this mattered.

And I was living this life where this same thing that was grounding me was telling me I was wrong. And where I was going and spending large amounts of my time telling people that acting like this book was wrong, though not naming it by name.

This was what I needed, because what I could find for fiction at this point in time with autistic characters were stories and characters that weren't like me and that said that autistic was bad. Latching on to one of these stories, where a character wasn't like me and it was wrong to be autistic, but it was a world and series that I loved made sense, because there was still autistic. Because I could cognitive dissonance and dissociate away the parts which said, but you're not supposed to be this way. Because I could be, this is important, autistic is important, autistic fantasy is important.

And when the NME came out, this meant no longer was I needing to pretend in order to protect myself. While at this point this was no longer that book that I was holding myself together with, it was a book with that history to me, from a series where I buy every book the moment they're available, and a community which I grew up with.

I didn't need to keep saying "but it's okay, I like this book even though I wouldn't accept this from any other book, because it's important enough to me in other ways", because now it was fixed, now it was okay to be autistic, now this character looked far more like me than the previous edition's had (though still we're very different, because all autistic people are different). Now it was a book I was not afraid of recommending to people, and was instead one I wanted to recommend, because it was not only important, it was important, and had an autistic character like a character who actually felt autistic, not like the label was attached, and it was okay to be autistic.

These changes matter. Representation matters.

But what also matters is that it wasn't as huge of a deal as I would have expected when the NME came out. It mattered a lot because of the importance of YW to me, and because it was fixing a book that was problematic, but while I couldn't find books back when the first edition of A Wizard Alone came out where autistic wasn't wrong, now I can find these. Now I've read many. Now autistic authors writing autistic characters is a thing I can search for and choose to read and I know how to do that. Now fanfic with autistic characters isn't difficult to find. It wasn't as huge a deal because the a change in amount of fiction I can find with autistic characters does exist. And that matters too.

There still needs to be more. And we need more PoC autistic characters, and nonspeaking autistic characters, and in general more autistic characters which don't fit the norm that currently exists in fiction. At this point, I'm not looking to a book that wants to cure me because I feel alone and like I'm the only autistic person in the world and that matters. And others need that level of, not being alone, fiction recognizes they exist, too.

Monday, April 9, 2018

The point was always control

CN: abuse of children in schools, ableism, restraint, seclusion, BCBAs

When BCBAs are concerned meltdowns are "behaviors" to be "handled", and how much distress a child is in doesn't matter, but there are still rules in place. Rules they set up for themselves, but rules. Rules like whoever's the first adult in place for "managing a behavior" is in control of whatever is to be done for that "behavior". They control when restraints happen, and who restrains, and how transporting the child to the tiny room that the child gets put in to finish the meltdown in (because of course that'll help a meltdown). They control the decisions. They're allowed to explicitly hand it off to someone else, with consent of both parties, but otherwise, they have control.

This is a rule, an explicit rule, a rule that everyone is told, and everyone has to agree with, and everyone has to know that this is how it works, because this is apparently the safest thing to do. This means that everyone knows who to turn to, and people don't try to go in opposite directions in how they're managing a situation. There's someone in charge and everyone knows who it is and nobody has to make a decision of who it is ever when a "behavior" is going on, because they're more worried about the "behavior" (I mean not the kid of course).

But I mean, what happens if an autistic person is the first on the scene. What happens when a kid starts melting down, because of an entirely predictable reason to be melting down, because adults have pushed them into a position that is completely unreasonable for a child to be in and they cannot cope, and they're trying and trying and trying to cope, and they can't. What happens then? What happens when they're doing the best they can, and an autistic adult is helping them, because the autistic adult knows them, and is seeing their responses, and is seeing that they're calming down, and making it through, and it's working, and life is getting easier and more organized, because someone is there and helping them in ways that they need right now?

No, despite all these rules, these whoever's on the "scene" of a "behavior" first, if it's an autistic person, that's not allowed. An autistic person isn't allowed to be treated equally. The child isn't allowed to be respected that much. Nobody is allowed to have that much respect, because the BCBA needs the control of choosing who takes care of "behaviors" and how. Respect isn't allowed. You need the ABA, you need the restraints, you need the control, you need the abuse. You need to control the autistic people this way. You need to hurt both of them this way.

So instead, they take this autistic child, who's working through a meltdown, and grab, and restrain, and pull them across a room, and throw them into a tiny little space, for a meltdown that never even met the rules that they had claimed met the requirements of restraint was allowed for. Because control is necessary. Because helping children isn't the point. Because helping children was never the point. Because when children were actually getting helped, that wasn't allowed, that was giving too much power to people they didn't want to have any power.

Restraint, Seclusion, ABA, Abuse, children going through trauma, and living with this for the rest of their lives.

The point was always control.

Thursday, March 1, 2018

"too emotional"

CN: suicide, ableism, ABA

I should not live in a world where I have to worry that my students won't be alive every time I go to school, because of how they're treated by their teachers. This world should not exist. This world should not be our world. I should not have to worry that my students that I care about, who play with me, who go out of their way to do things with me and include me, and who make sure that I'm someone who knows that they care about me, won't be there when I wake up, because every other adult in a school, instead of caring about them, only cares about behaviors, and eliminating them, and behavior plans, and doesn't even care how many times they even break their behavior plan because who cares if they hurt the children they have power and they'll show the children they have power. I shouldn't need to be there, listening to the children about their suicide attempts, not knowing how many more exist beyond the ones I know about, but knowing that they exist.

I shouldn't live in a world, where because I've not been at that school for a year and a half now, I don't know whether everyone is still alive. I know nobody will tell me. The students would, but they don't have a way to contact me. Some of them tried to friend me on steam, but somehow that fell through. None of the adults would. The adults didn't tell me whether or not I had a job anymore. They just stopped talking to me. Why would they tell me about students I care about living or dying. They don't care about me. They never hid they didn't care about me. They claim to care about the kids, but they abuse them. It's a common pattern.

I shouldn't have to be reminded and wonder whether people I care about are alive or dead knowing if they're dead it's probably suicide. I shouldn't have to think about teenagers and how many suicide attempts they've made. I shouldn't have to know what they've gone through because of how much people have taught them that they can't be autistic, autistic is wrong, they're wrong, among the piles of lessons taught by people taking over their minds and bodies through ABA. I shouldn't have to know these things.

And if I didn't know them, I couldn't have been there, and I couldn't have helped them through the years I was there. I couldn't have introduced them to neurodiversity and autistic community being a thing. I couldn't have been someone who they learned to trust. I couldn't have made the difference I know I made. And I would still know that this is happening to children. The children just wouldn't have names and faces.

I'm told by people I'm too emotional when saying that what people call therapy is actually abuse. I'm told that being angry will mean people won't listen to me.

I just don't want anyone I care about dying. I just don't want anyone else abused. I just want this to stop now.

How can they not be emotional about this?

Wednesday, December 6, 2017

Speech Therapy

CN: abusive therapy

When I was a child, my school discovered I didn't speak properly. My reading level was determined by how many errors I made when reading aloud and I couldn't pronounce the words. I couldn't make the "old" sound. "s" and "th" sounded the same. There were others, but I don't remember what now. My teacher sent me to speech therapy.

I had speech therapy from 1st grade through 7th grade, skipped 8th grade, didn't have it in 9th grade, and had it again in 10th grade. It felt never ending. The 10th grade speech therapy I didn't mind because they timed it in order to have me miss a class I really shouldn't have been in and they actually were halfway respectful, but the rest of the time they treated me like I was nothing. Their role was to fix me.

I would go to speech therapy, and every week they'd pull out the same card, with the same words on it. I would have to read these words in the same order. Repeatedly, because I'd get words wrong. Their job was to tell me I was wrong. When I got something wrong they would tell me I was wrong. They wouldn't tell me how, or give me any suggestions as to how to fix it, and they wouldn't even say that I was pronouncing it wrong, they would tell me I was wrong. Go again. Wrong again. Repeat, repeat, repeat, wrong, wrong, wrong. I'm just wrong. That was their role, make me know that I was wrong. I'm wrong for not speaking the way they want me to. I'm wrong for being different. I'm wrong for needing to take time out of their day and needing to make them work. I'm wrong because I can't understand why I'm wrong and I'm not getting better. I'm just wrong.

Oh I had a monotone voice, later on they had to fix that too. Repeat, repeat, repeat, tell me to try again. Tell me that I need to do better. Tell me that people could never understand me if I spoke the way I did. Tell me that I need to speak normal in order to be understood. At least this time tell me that I need to raise my pitch to ask a question, still don't give me the slightest clue how to do so. Just tell me if I don't do so I'm wrong. Keep going. Be more wrong. Know how much they hate me. They won't hide it in the slightest. They make it clear that I'm supposed to know what to do to fix my speech.

All speech is wrong. But not speaking is wrong. They don't realize it, not realizing I'm autistic, but they teach me that I'm wrong if I don't speak no matter how much it hurts me. Even when it causes physical pounding migraine pain, I talk. Even when it causes anxiety attacks, I talk. Can't not talk unless words literally don't come out of mouth. Must use mouth. Only option. Taught that it doesn't matter how much it hurts me. It hurt me then, it hurts me now, that doesn't matter, I have to use speech, speech is what is needed, speech is always what is needed. It hurts so much.

In many ways speech is still theirs, not mine. Speech is something I was made to do, even though I spoke. Speech was something that now how I speak is determined by the therapy I got as a child, but the pain that happens, also came from the same place. It's when I can't make sounds the way they've taught me that I feel most natural in some ways, because I don't feel the pressure of needing to be who I've been taught. I can just be.

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.