Feathers on the Inside

Take a feather, and run it along your skin, as lightly as you can, trying to catch that point where the irritation of almost but not quite tickling occurs. Capture that feeling. Remember it.

Now take that feeling, and stick it underneath your skin. And extend it, its no longer just that tickling, now there's pain too. Except you can't feel the pain right either. It's wrong. You absolutely know it is wrong. What else could it be, if there's painful feather tickles trapped under your skin through out your body?

When you have a feather on your skin, and it is causing a problem, what do you do? You make it not be there? If someone is seriously chasing you down with one and it is causing you this much distress? You would probably run and hide, getting away.

But now we're within your skin. And you want to run, you want to escape. That's the overwhelming feeling, wanting to run, get away. Your body feels wrong, you need to get away, you need to get away from the taunts, the pain, the flick flick flick of feathers, and tensing up of nerves misfiring. Feeling every bit of skin from the inside. Feeling the uncomfortable tingles and feeling every bit of air passing by.

You need to get away, run, run as fast as you can. How far can you get away. How fast can you go? What can you to to make this assault on you end, and how can you separate yourself from it? The faster the better. You must do it. You must.

But then, again, no, you can't. It's all inside. It's all in your body. You can't run. You want to; you need to, but you can't. There's no escaping by leaving.

So, instead, maybe you can make it leave? Maybe you can find yourself beneath this parasitic invader? Maybe you can make yourself feel better.

It's not parasitic in that there are actual parasites, but there's something taking over, and it needs to get away. It needs chased out. You need your body back, and you need it however you can. You are losing control, because your body has a mind of its own. Your body is trying to get rid of its attacker, even though its attacker is itself. The attacker must be gotten rid of. The attacker must be chased out.

You'll get rid of it, you'll get rid of the invader, even if it means harm to yourself in the process.

Internalized Ableism

"I'm not disabled" a student of mine says, complaining to a teacher about how her peers were saying she was. "I know" is the basic reply of the teacher, telling her about what she can do, yet ignoring the fact that yes, she is disabled. That most of the people I work with are. That me, the person who is most praised in the school for my math ability, is disabled.

She calms down, but the way it is done, is by removing this, and later on, with others, she talks about when she goes to college, she will refuse to show them her IEP, refuse to ask for or accept any accommodations. She only wants to be normal. She doesn't want to be seen as different, doesn't want to see herself as different. She repeats, again and again how she isn't different at all, is normal. She's normal. She insists.

She must have forgotten that the person she was speaking to was disabled. I am open about my disability. The students talk to me about my autism and my migraines. I tell the other adults things about myself to advocate for the students, because sometimes its the best way I have. But now, there was a student telling me, how that wasn't her. Telling someone who accepts this part of herself how it is being rejected.

Everyone else was helping her reject it. The kids were teasing her for being disabled. The adults, reassuring her how normal she was, and saying how she wasn't disabled. Both weren't letting her have it be part of her, and weren't letting her have what she needed.

So instead, I ended up sitting down with her, explaining why she should get accommodations. I explained how they wouldn't make her a bad person. I explained why they wouldn't be her taking advantage of the school. I explained how what they were was instead helping match her education to her. And to help her, I truthfully said that I think everyone should have individualized education, not only disabled people.

We started going through what some accommodations would be that would help her in higher education, rather than limiting it to her IEP, when she goes to college, what are things that are appropriate for her to think about asking for (such as exams in rooms with small groups instead of large lecture halls)? And at the same time, what are things she can do to better her own education on her own (such as recording audio of all lectures on her phone). And slowly, the accommodations became part of her, they weren't something being done to her, someone claiming she needed things she didn't want because she wasn't good enough, they were something that she was controlling, strengthening herself.

Rather than an IEP being something that was people saying "you can't do things the normal way" like she had been taking it as, no matter how the teachers were actually speaking to her, her internalized ableism wasn't as strong, she could view herself as being able to use accommodations. The word "disability" applied to her didn't have as much a strength when it came to how insulted she felt.

Internalized ableism can affect people a lot. I've seen large amounts of self-hatred because of people hating their disability. I've seen large amounts of people refusing to admit they are disabled, because they don't want a "bad" thing associated with them. People refuse accommodations, refuse to do things that might make them look odd, refuse to do things associated with their disorder because they want to see themselves as normal - even when it is at the cost of being more symptomatic.

Actually using tools when they help is powerful. Actually using the accommodations you can can be the difference between managing and not. These can be challenging to do, because we're so used to being told not to, to not being able to, to having to fight to look normal. Sometimes, the first fight, or even biggest one, is against is ourselves.

A Wizard Alone

I remember 2002.

There was this book I'd pre-ordered. I'd gotten the first four in 4th grade, realized it wouldn't end there excitedly when I saw the fifth in the library when it came out. It became a series I'd have to pre-order books for. This one had just came out. It was named A Wizard Alone.

There was fantasy, and all of what I looked for. It was one of my favorite books. What was different about this book though, was that one of the characters was autistic. He was presented as entirely in his own head, and it wasn't made clear (to me at least) how much that was autism and how much that was plot. In the end, he was magically cured, having chosen to give up his autism, when he was able to in a magical way.

This was also the year I was told that I was autistic. It wasn't in those words, and I didn't understand. I was a 13 year old, without much support when it came to this in particular (because of lack of knowledge), no matter how much people supported me in everything else.

I was told I probably had Asperger's. I didn't really understand what that meant, though I was given some information. I responded by hiding back into my books in confusion, though I'm not sure anyone realized. Of course, one of the books I returned to was A Wizard Alone, with its autistic character. With its character who was magically cured.

And I actually started figuring out myself with that, though not in the best way. I reacted with confusion from one of my favorite books being like this and my disorder being autistic spectrum and then "that's not me". I don't want to be cured, I shouldn't be cured. I reacted in the way I see so many people doing now, separating themselves from the people they call "LFA". I went strongly mentally into neurodiversity, but I didn't understand it. I wasn't understanding how someone could be impaired and want to be themselves. I couldn't understand my own impairments.

I had this internal struggle going on in many ways. I knew I was happy with who I was, and apparently had these labels, but I shared these labels with someone who it was clearly a wrong part of them in my favorite book. How could this make sense? It wasn't making sense, and I pushed it all away. I made it so that this could be a favorite without it saying any less about someone who was like me, I made myself different.

Yet at the same time, I related, and I kept returning. I reread this book more than the rest of the Young Wizards books in these years. When I was trying to understand myself autisticly, it was one of the places I turned, because it was a book that meant so much to me, and who's characters were important to me, and which autism was a part of. The fact that it ended up with the autism going away didn't mean that the autism wasn't there. I eventually started trying to find ways to justify it like it not really being autism, because I related to feelings even though the traits were so much more pronounced than mine, and didn't want that part, but didn't want to think any less of the book.

I figured things out eventually of course - I didn't keep othering people, splitting it so strongly into Us vs Them. But, it was after this strong reaction from this book of "I can't be that, I can't be someone who gets treated that way, they are, not me". And I didn't at first realize that they shouldn't either, or that it wasn't me vs them.

My early process was very defined by that book. It wasn't one that was negative about myself, but it wasn't one that was positive about disability, or other people, and it was one that was me not being able to recognize that I could be impaired. I don't now know how I viewed myself, as both having this disorder and having no impairments, but I did so.

This would all suggest though, that there are a lot of problems with this book. (No matter how much it was one where I read it I don't know how many times in my early teenage years. It really was one of my most read books.) And there are, the treatment of autism was really negative. But, what was awesome, was that the author recognized this, and worked on fixing it, and that itself is worthy of mentioning.

There was a new edition put out in 2012ish, where Diane Duane was fixing timeline consistencies and updating it for newer audiences. I bought but was terrified of reading A Wizard Alone, because of the treatment of autism. It could be done well, it might be done terribly. What came out of this update included references to the intense world theory, suggestions that autistic people are actually people, and a character who in the end had the choice whether or not to be cured and chose not to. There was actually an autistic character now, not someone who was there only to speak of the horrors of autism.

It was in many ways, saying that book that started my journey had been revised into one that didn't say I shouldn't exist. It could agree with autistic people. It wouldn't limit me into being someone either with impairments or with abilities. That was something needed and which is so hard to find in fiction.

When I started, I was someone young and trying to find my way, not aware, but not wanting to be treated badly. Now I'm being shown that I don't have to be. Progress is happening.

Struggling to Explain

I wonder if they realize that I might ever show symptoms. They know my diagnosis. I don't hide who I am. They've seen people there to help me out. But I'm an adult.

Expectations are broken. I don't know what to do. My brain feels jammed up. But instead of being supportive, or even saying that yes, they made a mistake, the same question is repeated. The question which doesn't get a reply the first, or second, or third, or fourth time, keeps getting repeated. The question that just keeps saying "you should just take what we're offering, even though it won't actually help, and will actually make things worse".

Jammed, unaware what to do. All my routine broken. Needing to get stuff done, because people keep saying things to me, that say I need to have an answer in the next 10 minutes, 5 minutes. I stare at my phone, still not having an idea, still feeling like everything is wrong with the world, still feeling a need to hide, but not even having a place to hide.

Explaining is too hard. I can't figure out how. Even now, I can't share the lost and confused feeling of not being able to organize your thoughts or feelings. I don't know how to make even people here have the least bit of understanding of the having a problem that you can't solve, and not being able to figure it out, and it being like that is piling on top of itself, as people don't understand that it is even a problem. And at the same time feeling lost inside your own brain, trying to find ways to find solutions, but not finding ways to even think clearly enough to approach them. Even simple solutions would be out of reach, because of all-consuming need of finding-self. Yet the finding-self doesn't seem doable without solving the problem.

I don't know how to make people understand the confusion and wanting to understand, and wanting to find solutions, and instead just being lost inside. And feeling like it is expected that there is nothing at all.

If I can't explain it now, how could I explain it then, when I can't find myself? How can I explain that I'm trying to find solutions, but am just being asked over and over why can't I just take their solution. Questions I can't reply to.

Is it surprising that I reply to things I don't expect? Is it surprising I don't process repeated questions, or take time to reply? Maybe people can't understand. Maybe they still need to figure it out. But how can I help them figure it out when they already know of my diagnosis, I'm open, and there's only so much I can do when it is happening. People need to pay attention to learn, and I can't make them do that. I can only try to help them if they are willing.

Two-faced

Sometimes I feel like I'm just lazy, and like I could do so much more if I just tried. Like I make people do so much for me that they don't need to, because I won't figure out how to, and like I should be figuring out how and doing these things.

Other times, I feel like I'm overworking myself, refusing to take care of myself, pushing too far, doing too much. Like I'm not watching out, and burning myself down to nothingness.

When I am managing to put together the pieces of how to do activities, I feel like I am overstating my impairments, like I don't need help, like I'm capable of doing it all on my own. I don't see where the challenges are, and can clearly complete these, and much more complex tasks.

But when I'm struggling, I don't know how to organize the pieces enough to find one to start from. I can't figure out what to do, or where to go. I can't understand how I could ever complete such things, they seem so far away.

Sometimes, the challenge is to predict which side I'll be on, whether I'll be thriving, or struggling through. Sometimes, the challenge is having gotten that prediction wrong, and having me alone, unable to meet my needs, even though on another day, I could do more than just that. Sometimes, the challenge is having fallen too fast from from side to the other, and trying not to feel like I am not worthy, as I need to ask for help and don't know how, when the day before I didn't need this help.

But as the crickets chirp, and the sky fades, today, my body decides, it is time that we can work together. Whether or not the pieces were fitting earlier today do not matter. Now the world feels safer; now, it makes sense.

Now, I need to remember, that I am not lazy for needing to ask for help sometimes, I just need to thrive in the fact that I do not need to at this moment, while my body and mind agree.

Assumptions

Can I do everything or nothing today?

What? Why are you surprised by me asking? I'm told this, aren't I? I'm told whether I can do anything I'm asked, or whether I shouldn't even try because I can't manage. I'm told whether my capabilities mean I have no impairments, or my impairments mean I have no capabilities. It can't be anything in between of course.

So, tell me, which are you assuming about me today?

Is it the ever-common, because you are verbal, you can always communicate everything you want?
Or maybe, the if you can type, then you can do all sorts of self-care?

Is it that being in a relationship means all social interactions are a breeze?
Or that holding a job means that all impairments melt away, and no accommodations are necessary?

Is it that having meltdowns means that I will lash out and hurt you?
Or that I choose to hurt people when I shutdown, not being able to reply?

Is it that walking in public alone means that my body is reliable?
Or that because I need help to get through a city, I am incompetent and unintelligent?

Is it that I'm a liar when I talk about myself?
Is it that I cannot know my own experiences, or that someone like me can never be trusted to speak the truth?

Is it that I'm not allowed to ask for help, and any excuse is to be found?
Is it that I am too lazy to try?

Do you have to assume that it is impossible to be capable of much and still struggle with things you find simple?
Can you not understand that varying capabilities are normal anyways, we just take it to a further degree, to a degree you don't understand?
Am I just so uncanny valley to not be human enough to be able to have a voice to say things about myself?

So I ask again, what am I capable of today?

Questions

No matter how many questions are answered, there are more waiting, questioning. No matter how many questions are asked, there are more out there to be found.

No matter how far you search, reaching farther, journeying longer, is always a possibility.

And that is the journey of our lives.

Our lives of questions, answers, solutions, and challenges; ways to cope, and never being enough, but always questing for further solutions, further answers, further skills to aide. Our lives of asking ourselves what we are doing, and how we are doing it, finding new ways, and doing it.

My life is a life of questions. Everyone's is, but mine I see a list of questions with every action I take. How far can I push myself? What are the things I need with me now to protect myself from my neurology? Simply, what do I do?

My life is a life of answers. We all answer questions. We all quest and grow. We all challenge ourselves and come out ahead of where we were.

So my days, I have questions. They are the questions of my days, of what do I do, and how do I do them. They're the questions making me choose how I act. How do I get through a school when I don't know where I am? How do I teach when I can't see more than a square foot at a time? How do I walk when I don't know how to balance? How do I prepare when I don't know what symptoms will hit? How do I navigate when my body tells me I have choices like being able to step forward or having any sight, but not do both simultaneously? How do I keep hydrated when I end up so heavy that I don't remember how to stand? How do I keep safe, when my motor cortex might stop working?

And then. Then, I answer these questions. I find answers, I don't say I can't. I find ways to navigate a school on memory and touch. I plan what to carry, and organize it carefully. I teach my brain how to stop using vision, so I can use other senses more efficiently, and process with other senses when I need to, giving myself enough tactile input that I know where I am. I teach myself how to use sounds. I practice using other sorts of motion, other parts of the brain, for when I need it, so I'm not trapped in place.

I find answers. I find ways. Because I'm not going to be trapped. I'm going to adapt, I'm going to find a way to succeed. My body might not respond like yours does, but I can answer how I can can do it. They are my questions.

I challenge myself, and constantly, I'm asking more questions, and finding more answers. I'm finding more ways to cope, more ways to adapt, more ways to make myself work better in a world so toxic. And answers lead to more questions, more ways to seek out ways that I might adapt how I interact.

I question. I answer. I seek. I find. I learn. I grow. And more questions come.

Taking caring of me my own way

I cannot make the decisions you make. I'm glad you take care of yourself. I'm glad you stop and say that you need to. I need to take care of myself too.

I need to take care of myself my way. I need to take care of myself as the person who if I stopped when you did, I'd not do anything, and that wouldn't be something I could manage either. I need to take care of myself as someone who needs to stop for things you cannot imagine. I need to take care of myself as the person who needs to push myself to the limit every day, both because I need to for my own sake and because my body doesn't give me a choice.

I cannot do things the way you can. I cannot leave everything when I get a migraine. I am glad you do. I will recommend to everyone to do it that way. Do not look down on me for doing differently. Do not tell me that my stuff is less severe. Do not tell me that what I'm dealing with isn't really a migraine, or isn't really a challenge, or isn't really "bad". I need to do it this way. This is my way.

I am glad you have the choice of doing something different. I am glad you can leave when every migraine hits. I am glad you can take care of yourself and protect yourself. I do not have the luxury of both leaving and facing the world. I would rather face the world. I would rather push myself to my limit. I would rather roll around a building in a rolly chair unable to stand; I would rather type in an AAC app on my phone; I would rather use a long cane; I'd rather find weird ways of doing something that people don't think of than leave and not let myself manage what I am capable of. That is my way of dealing. It is my appropriate way.

I cannot do everything your way. I cannot take days off work every time I deal with the pain of a pinched nerve. I cannot use ibuprofen to deal. I apply peppermint and cope. It doesn't mean I'm not in pain because I am managing. It is my way. I am glad you choose your way. Your way is better for you. Because I can manage, does not mean you can or should. You should do what is appropriate for you. You also should not minimize what I deal with.

I cannot do things your way. I cannot buy a car and drive myself home from work no matter how many times I'm told I should. It would not be safe. I cannot simply organize all the things to get myself a meal amidst all the noises of a home. I need to take care of myself in my own ways, in all of what that means.

My communication is different; my sensing is different; my pain is different. My need to push through is different. My need to find alternative ways to find a way in a world. So I do it. This doesn't mean I think you need to. It doesn't mean I'm dealing with nothing either.

I'm glad you can step away when its too much. My "too much" has to be different, though. I need to find ways. I need to do things oddly, and I need to say, what's good for you isn't good for me, and what's good for me isn't good for you.

I need to take care of myself, and do things my way, whatever that might entail.

Expectations and the Implication Thereof

Another loud day. Another day where I figure out what I'm doing on the fly. Another day where I'm to do that while people shout around me. But that's what I'm supposed to do, I'm not really impaired at this.

I do the same thing, day to day, whether or not they want me to. I know there are limits from this. I know that that there are other things they'd want me to do, but this is always helpful, and always something I can do. It's always something I can remember before I can't think. I fall into safe space of understanding. But when we finish and I'm expected to do something else...that's usually when its loudest. That's when my head is spinning. That's when I don't know where I am. That's when I try to do something, anything, while I don't know what is going on. That's when I need a quiet space to myself for a sensory retreat to have a chance at making it farther in the day. But, can I get that?

I'm not given it. I have to take it for myself, leaving, and finding a spot. Holding myself close, in a quiet room, hoping it will remain quiet. Trying to recenter myself, trying to find my way back to the world, before I need to re-enter their world. Why am I not given this? Why can't I just have these few moments to myself? Why do I need to rush at someone else's schedule, or go out of my way places where I do not know where I am in such a body? Why can't they find ways to meet me when I work too hard to meet them.

In so many ways, I'm expected to meet the expectations of others about what I can and can't do, that when someone stops and asks "could something help you" or notices when I'm getting agitated, it means a lot. Things which shouldn't mean so much, mean the difference between being unable to face activities I want to do, and being capable of it, because now I have had someone else take up some of the effort, usually at little cost of their own.

In so many ways, these expectations surround me, meaning no matter how much I'm not bothering to try to look neurotypical, it does not matter. There are still perceptions of ability that I am always capable of finding my way around a building in their eyes, and I must find a way to manage or I'm left with only myself falling into pieces and still no help.

Listen

When someone speaks, or types, or flaps their hands, listen. When someone tells you what they need to get through the day, or when someone tells you that they can't handle what is happening, then listen. When someone tells you that they don't mind who they are, that they actually are rather happy, then listen. When someone asks for acceptance, please, listen.

How many times do these things need to be said? Shouldn't it be straightforward for someone to say "Hey, I rather like who I am" and to have people take this seriously. Or to have someone say "maybe it'd be easier for both of us if you just play the music quieter", and for people to do this.

Wouldn't it make sense for people to be able to have thoughts about themselves? And wouldn't it make sense to pay attention to all the communication, whether or not it is spoken?

I don't know, it seems straightforward to me. But, it seems that people don't know how to listen.

It seems that they don't know what is around to hear and what is around not to. That there is communication outside speech seems to be a challenge to understand, and learning how to read it takes time; yet at the same time there is an expectation of normal social cues. That there are voices speaking out saying "please, listen to me, I want to speak about my own disorder", is lost, and they don't find them or hear them; and when the few get through, its drowned out in their expectations of what they already understand to be their truth.

So maybe, its a process, and maybe its the first step. Learning to listen.
So, that's what I ask. Can you try to do that? Learn how to listen.
And then, listen to people who are autistic.
What do they say?
It won't all be agreement.
It won't all be the same.
But there will be people talking out about themselves, what they like, what they don't like, what they want, and how they feel. And they should be listened to.

Myself?
I want to be able to be me without feeling like I'm fighting people every day by existing.
I want people to notice when I need help, and offer it.
I want to be respected, rather than spoken over because of who I am.
I want to thrive.
And I want to find my way in the world.