Tuesday, July 21, 2015

"Different not disabled"

One of the first phrases I heard when I was researching Asperger's (because I wasn't aware of using the word autism then), was "different not disabled". It was saying, you aren't disabled, you are only a different sort of human. It was also saying you aren't really impaired.

In many ways, what different not disabled was saying was "you're actually the same as the rest of them". In saying "you aren't really impaired", it was denying differences, suggesting if I struggle, it is only because others do too. It was saying, my struggles are all things others deal with, if they weren't, I would be disabled.

I didn't recognize my impairments then. I didn't recognize any autistic traits. I was happily claiming neurodiversity, but had no clue any way that I was neurodiverse, and didn't realize that I didn't know.

I was 13 and was thinking that everyone else had the same interests I did, even when I was being told these words associated with the autism spectrum. The reason that they grouped together in cliques, listened to the same music, went to the mall, was that they all pretended to have these other interests to fit in with each other. In truth, they all had my interests. The difference was that I didn't care about fitting in, and preferred being myself.

I was different, but at the same time we were all the same.

Every time I saw what was said around "different not disabled", it was "we're just a different sort, just like if you're gay". It was repeating to me there's no difference that should be talked about ever, and yet talking about it proclaiming neurodiversity. It was saying we didn't need any sorts of help ever, we just needed people to respect us.

My understanding of myself was held back so far hearing these words. I didn't recognize who I was. I kept being told "you're just like them", even when I wasn't. I kept being told I didn't need help, when I did. I was told I wasn't disabled, and I am.

I was told if you needed help, you couldn't have strengths, that if you had strengths, you couldn't need help. I was told that disability is to be ashamed of, and that someone who is neurodiverse is innately different than someone who might ever use an app to help them speak. I was told many things that aren't true and held me back.

This isn't just me. I've heard others say the same. That entering into the online autism world and finding those speaking about how we aren't disabled, had hurt their ability to understand themselves and the world.

Disability might be caused partially because of the society we live in, but that doesn't mean that people don't need help. It doesn't mean that people should deny the differences they do have, and try to push through trying to do everything on their own, never trying to even adapt. Disability isn't a word saying a person is lesser, that a person doesn't deserve life, doesn't deserve happiness. It's just our sort of difference - our one which does have dramatic downsides, a community, and people treating us poorly for being how we are whether or not we recognize who we are, and whether or not we are open.

Taking away the disability label only takes away self-awareness, possibility for adaptations, resources for growth, and community. It doesn't protect me, it only protects others who don't want to let me be disabled.

Saturday, July 18, 2015

A migraine

My vision blurs and my head spins
every step becomes a mountain
every minute, who knows?

The noises blur,
louder and louder
coming at me from every which way
just a cacophony of pain

My tunnel shrinks
False lights blinking and flying
Blurring, shrinking, growing, moving
all of the information, lost in the shuffle

The ground begins to move
and I flip - upside down
So many lies about how I am moving

Walking? Shuffling? How do I balance?
I don't even know where I am.
My arms, my legs,
what are these things?

You've helped, and I've found them.
I can once more move; am no longer trapped
with the fear,
knowing I'm unable to move.

But still, they won't listen.
My fingers won't hold things
the doors, won't open when I push.
The movements hold me in their own new way.

Spinning, blurring, unable to speak
Unable to remember words
Unable to hold onto ideas
Unable to speak those few things I can find

Lost, confused, and trying to find a way
through the maze that keeps building itself.

Every task having more and more steps added,
and the steps in the middle stolen.
Every path having more and more obstacles being put in my way

As the pain, increases.
And the rest does as well.

Until eventually I find that way through, in its own weird way.
Or I don't.

Because what I do
or don't do
is dependent on how my brain works today

Not on your expectations.

Thursday, July 16, 2015

Crusade against hate

On the bus I am screamed at for trying to cope. For doing the things that I need to do. People, all around me, grouping together, in a mob against me, for being different.

This is the autism awareness we have.

I am told, time after time "you are not autistic", because I don't match there stereotypes. Because I can speak, or type (because it might be online). Because my communication is clear, or because they can relate to things which I say. I cannot be the kid rocking in a corner, hands on their ears, humming, to keep out the horrors of the surroundings, no matter if that is something I will do.

This is the autism awareness we have.

"Autistic adults don't matter" I hear, in those words. I am told my words don't matter, that people like me do not deserve help. I am told it only matters if we do things for the children, and those who are over 18 can be on their own. We are not part of the picture.

This is the autism awareness we have

This is the reality of our lives as it is. The hatred thrown at us. The denials of our lives. This is the reality of the fighting for acceptance - that every day, its meeting more people who've been misinformed and cannot believe that our words about ourselves are the truth.

Asking for help, is a quest to find acceptance. Traveling in public, a question of whether or not challenges will come up. Our words are not valued, our stories not told. We share, but we are overwhelmed, denied, and pushed out, by those who want autism to mean other things.

And still, we go out there, we face the world. Still we tell our stories. Still we go and do what we need to do, to make things better for ourselves. Still, we work to make things better for those who are like us. Because that's what needs to be done.

Even when it makes it harder right now, we work for understanding. Even when it is painful, we work for acceptance. Even when it is a struggle, we work against the hatred that right now, is the primary message available about autism.

Tuesday, July 14, 2015

Choosing pain

Have people ever felt pain? Have they ever felt limited? Have people ever felt a struggle, like they want to do something, and they can't manage to, no matter how hard they try?

I can't understand. Everything I know suggests that everyone feels pain, that everyone struggles.

So why would I be told "You're only disabled because you want to be"?

Why would I be told, that I choose to have migraines? Because I have been told that. I've been told that if I just wanted to not have migraines, then I wouldn't, and that the only reason I have them is that I want to be disabled.

Why would the implications be "you want to have migraines"? As if the "services" for those of us who are disabled are worth spending so much of my time in pain. Spending nights unable to sleep with my head being split open, and my brain being compressed by a skull crushing in on itself. Spending days with my head spinning, unable to identify where I am, where my limbs are, how to move them enough to do tasks like pick up things, or open doors. Spending days unable to speak, my vision blurring, sound coming from all directions...

Why would someone suggest that it'd be my choice, to struggle to find ways to do what I can, because I can't find a place that I can be without my brain saying my body won't work. That my senses lie even more than they normally do, that my body won't listen, that everything, and nothing is too much, and that the confusion of existence is beyond my comprehension.

Have they had pain? Would they choose it? Would they choose a struggle? Would they choose to fight against feeling like they can't do anything?

Because that's what I do. And it's not because I choose to have migraines. It's because I choose to limit how much they limit me. I choose to say, I know I'm disabled, and I'm going to go out there, and do everything I can, even when that's fighting against my body. Even when that's struggling to find ways to exist.

Every day I go in public, I do it knowing I'm probably going to get a migraine. And yet, I can't stay hidden in my room. (and truthfully, even here hidden in my room there's a high chance of migraining too).

I build up skills, tools, adaptations. I take meds, carry more. I carry too many tools, and train my brain. But I choose what is right for me.


It's me choosing, that sometimes, its worth going through everything that a migraine entails, to go and spend time with friends. Sometimes, its worth the pain and suffering, the confusion, and all the aura entails, in order to have a chance to make a difference to others. Sometimes, its worth the migraine, to get out of a single small room, and face the world, getting to choose what I'm doing, how I'm doing it, until the fog rolls in, and my neurology overtakes my ability to choose what I want to do for something other than keeping myself out of situation of everything being too much.

Would they choose pain?

Because I'm the one who has that choice. And its not nearly what they think it is.

Monday, July 6, 2015


It is the time for words.

When the time for words comes, if I start to speak the words come. They come without challenge; not hiding away, not mixed up in each other's places. When it's the time for words, the word finding challenges aren't there. The challenges of speaking a different word than I was thinking, gone. The sitting there thinking in translation, trying to find the right words for my thoughts, not happening. No, during the times for words, the words just come cleanly and easily.

How easy spoken word is varies. Sometimes, I find myself delayed so much I can't say what I need to meaningfully. Sometimes, words won't form in my mouth, no matter what I do. Usually, I'm aware of how little I'm saying compared to what I'm thinking, and unable to find ways to add more.

But in these times, thoughts translate easily, and spoken word is no harder than typed. In these times, speech isn't limited to the small percentage of what makes it through multiple layers of nets, catching thoughts struggling to get through, but too complex for what words are willing to share.

These times I have a thought, and a need to share it. Maybe a statement about how my day has been. Maybe something interesting I have read.

And when I share it the floodgates open. The words are easy; the thoughts flow! So many ideas, so many words, so many things I want to say! One thing leads to another, and another, and another! They all combine to a great story of how things are.

The words keep coming. So I keep sharing. I lose track of time. And these are things I want you to know!

Until, its been too long, and its bothering you. You're making that clear. And I'm not being able to shut it off.

I stop, and I feel this overwhelming pressure. Just one more thing. It's important! And after giving in a few times, I resolve to stop giving in, so as to be good to you.

Wrongness imbues my body. Pressure from my bones to my skin. My body doesn't like this idea.

A fight, breaking out inside me. Self-control is a struggle against an overwhelming feeling of wrong. I cry out in the pain my body is causing to itself. There's a monster in my body and it's me.

Eventually it calms. I retreat to my safe spot. The words lost again, I'm hidden away under my blanket. Quiet has fallen.