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.