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.