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.