Friday, March 29, 2019

Ow? What is pain I do not know, and yet I have chronic pain

"Rate your pain on a scale of 1-10"

"I don't know"

I'm always in pain. I don't know how much pain I'm in. Pain is life. Pain doesn't make sense to me. Pain is always there but how do you process it, it is nonsense.

I'm told to rate my pain. I don't know how.

I'm autistic. I also have chronic pain. I'm autistic. I also had disabling pain as a child.

I don't understand pain.

I don't know any other way to exist.

There's a lot of talk about how much autistic people process pain differently, and I can't see those conversations and not wonder, but how much would we actually be able to process pain if our pain was treated, if our pain was listened to, if our pain was taken seriously?

I'm autistic. My pain doesn't matter.

I started having disabling migraines at age 7. They weren't frequent then, but they were extreme in how painful they were. I have memories of that, even if I can't comprehend the pain now. I sprain my ankle walking on flat ground. My body doesn't listen to itself. Pain is just something that happens. I don't know if I ever had a way to explain pain and have it understood, have it listened to, have it comprehended and taken seriously, rather than just being something that wasn't a big deal to everyone around me, so it should clearly not be a big deal to me.

I'm autistic, if I can't explain then it isn't real.

I grew up pushing through pain. I don't have memories of how much pain I had at what ages. My childhood memories aren't that clear. I know that by the time I was an adult I had multiple forms of chronic pain. People talk about diagnoses and treatments and things for pain. This feels like a mystery an imaginary thing that doesn't really exist.

I'm autistic. Nobody listens.

I grew up pushing through pain. It was the only way I had available. It was how I could exist. It was how to survive. It was the only way I could get through day to day. I don't remember details, but I remember this. I don't know if others knew when I was in pain if it was anything other than the migraines that shut me down completely. I don't know if they ever knew there was a possibility of pain.

I'm autistic. Nobody thinks to ask.

I grew up pushing through pain. Now I deal with the consequences.

People talk about pushing through pain like it's a good thing. Like it's how to manage to get to do things you want to do. Like it's ways you can manage to take less meds, and like meds are awful things. People talk about pushing through pain like it's a way to make everything better. It's what I did because I didn't have any choice otherwise.

Now I deal with the consequences.

I don't understand the concept of pain.

No really. I don't understand the concept of pain.

I mean it. I don't understand the concept of pain.

This is more than not being able to rate on a scale of 1-10. This is not recognizing that dislocating a joint means maybe I should actually go to the hospital. It's not like my body is actually telling me I should. This is pushing myself past boundaries, not noticing how injured I am, forcing my body through situations it can't be in, because I don't know the difference. I don't have a warning signal.

Pain is a warning sign. Mine was taken away.

I grew up pushing through pain. Now I deal with the consequences.

I need others to watch out for me. I need to analyze. I need to watch the signs that aren't pain. Because pain means nothing. I don't know how to use pain to keep myself safe.

This is dangerous. This isn't a good thing that pushing through the pain lets me do. This is a terrifying reality of needing to survive and finding ways to survive.

But I'm autistic. So I just process pain differently.

I'm autistic so I just "have a high pain tolerance".

What if people just paid attention to my pain?

What if I didn't have to survive in a world where pain was an unrelenting reality of pushing through with no possibility of anyone even recognizing it existed?

Because dissociation is my life now. I dissociate from pain constantly. I dissociate to survive, because dissociation is survival. Dissociation means not fighting my body in more ways that I can fight it. Instead I just don't have a body. I'm just a being who lives in a meat shell that happens to exist here, that I am using to interact, because I need some way to interact.

But I'm autistic. So dissociation is pathologized into processing differently.

What if I was just given the chance of not needing to?

What if I was allowed to have a body?

What if I was allowed to survive in a way that wasn't needing to dissociate to exist in a world so hostile to me?

I'm autistic, and I have chronic pain. And I don't know how my body works with pain. I don't know and I can't know, because I can't have the option of understanding how my body interacts with things like pain. I need to separate myself, because I need to exist, and I was never allowed to do anything but find ways to exist. And this was how I could.

But, now that means instead, it's all because I'm autistic.

And not because I have pain.

And how many other autistic people is this happening to instead of anyone listening?

Thursday, March 14, 2019

Rigid Thinking

It's claimed that autistics have this rigid "black-and-white" thinking. That we aren't "flexible enough" in how we think. That we need to learn how to think how others do, because we don't understand how to think outside of our own ways.

Allistics are just as rigid in their thinking as autistics.

Oh you autistic person, you need to learn how to think how someone else does, you need to think in their way. Well, we're already doing all that work. Allistics aren't doing anything to learn to think and try to accommodate us. How's that for "black-and-white" thinking. We must be entirely like them. We must do everything their way. There cannot be accommodation. There must be assimilation. We already know that. That's not autistics being rigid.

Allistics make all sorts of claims about how rigid autistics are, and don't listen to us. They claim that we can't be listened to because we're just being "rigid" and yet they are claiming "all autistics" this and all autistics that. They claim none of us can do things, all of us must do things, none of us can be listened to. Listening to allistics speak about autistics is listening to rigid speaking in extremes.

And in general this is how things work. Sure, autistics are rigid. People are rigid. Rigid is about controlling your environment, controlling what's around you, trying to make things acceptable for you. What is "acceptable" varies, but that's what people do, whether it is requiring routines to get through the day, or refusing to listen to anyone who makes them question their view point. Being rigid isn't an autistic thing. It's a human thing. Being rigid is pathologized in autistics. That doesn't mean that only autistics are rigid. That doesn't mean that others aren't.

It means that allistics get away with being rigid, and push us aside because we're being "too rigid", we need to change, we need to do things their way, even when we're doing most things their way anyways. It's yet another reason they are listened to over us, you can't listen to someone who isn't flexible enough right? (But it's not like they're being flexible). It means that our rigidity is pathologized and theirs is ignored.

And autistics use this as an excuse too. They say rigid thinking is just how it has to be. It's "just" autistic rigid thinking. "Oh, I'm not transphobic, I just can't comprehend the existence of trans people existing." I mean, it's not like allistics don't do that to us too. It's not like we aren't screamed at repeatedly about how we simply don't exist, and how that's not 'transphobic' it's not like they hate us, they are just claiming we don't exist, they don't want to hurt us, ignoring that these statements do hurt us by denying our existence. But it's "just rigid thinking". Even though it's the same patterns. Even though in both cases it's people who are refusing to acknowledge someone who is outside the bounds of what they consider "normal", and they are claiming only "normal" people exist. It's the same rigid thinking.

It's not autistic to not know things. It's human. But when it's called autistic, it's now a symptom, it's now something which is pathologized, it's now something that is wrong about us, and it's now something that people claim is just a part of who they are so they don't have to bother thinking about whether or not other people exist.

Time and time again people are just like "oh it's just autistic rigid thinking" in order to claim it doesn't matter the abuse that people are doing, to excuse the oppression." That doesn't change what it does to us. That doesn't change what it does to everyone who this is said to. That doesn't make it somehow just an autistic thing. And it doesn't make it somehow a thing that is an immutable fact of the universe that autistics can't grow, can't learn, can't change. We are human too.

Autistics can hurt people. Autistics can abuse people. It doesn't matter how many times you say "I'm not tranphobic but" or claim some other -ism isn't happening because of "rigid thinking" excusing it.

When you say to me that I don't exist that hurts. You can't claim it doesn't. You can't claim that it shouldn't, because you're autistic.

And "but rigid thinking" will not change that.

In both cases, this is people being people, it's not autistics, it's not allistics, it's how we pathologize just a human trait. It's who gets treated how. And in both cases, I'm told I can't be listened to, I can't exist, I shouldn't exist.

Because rigid thinking makes it so.

Wednesday, March 13, 2019

ABA is always abuse.

Aversives aren't what make ABA abuse.

ABA isn't abuse because of lemon juice being sprayed in mouths (though that is abuse), because of the JRC shocking people (though that is abuse and shut down the JRC), or because of Lovaas slapping people for handflapping (though yet again, abuse).

ABA isn't abuse because of aversives existing. Remove all aversives, and ABA is still abuse. It is not abuse because of the history of aversives.

All ABA is abuse. ABA is abuse whether or not aversives are part of the program. ABA is abuse no matter how prettied up it is, no matter how much it is "but we aren't like them, we don't do those things anymore". Because ABA is about controlling people, about changing people, about not letting people be themselves. You can be pretty and manipulative. You can give people gifts over and over and over again, to make them who you want them to be, and this is still abuse. ABA isn't abuse because of aversives. ABA is abuse because of the entire base point of ABA.

All of that "but not my ABA" or "ABA isn't like that anymore". Sure, your ABA might not involve squirting lemon juice in people's mouths for not speaking "correctly", but it does include things like taking everything loved, and making it only accessible if earned.

That is abuse.

It does involve things like making things necessary for regulating your body, for regulating your mind, and making you earn them.

That is abuse.

It does do things like tell people over and over and over and over and over again how wrong wrong wrong wrong wrong wrong they are. (Even when you use checkboxes where they are seeing whether they are doing "good" or "bad" today)

That is abuse.

And beyond all this, at the base level of all this, it doesn't matter the methods. Because what ABA is doing, is taking someone, and taking control of them. These are just some methods used. And taking control of another person is. just. straight. abuse.

ABA is about saying that your body is mine, your brain is mine, you will do as I say. Stand up. Sit down. Don't move you hands. Say these words exactly. Do what I say.

ABA is about taking someone and molding them to who is wanted. Changing them to who is wanted. Not letting them be who they are.

ABA isn't about teaching. It is never about teaching. It has never been about teaching. It is about control. It is about making someone who is wanted by someone else. Sit up straight, repeat after me, earn your candy.

It doesn't matter whether you do this by spraying vinegar in someone's mouth, or whether you do this through praise. Controlling someone, changing someone, making someone into a model of who you want, is abuse always, and can only ever be abuse, because of the entire concept at it's core. You cannot mold someone into a being you want with "love" and not have it be abuse.

Abuse is not only physical. Abuse is not only getting in someone's face. Abuse is also controlling what you do, when you do it, how you do it, who you are.

This is true in all situations. This is true with ABA. ABA is abuse. It can only be abuse. It is always abuse.

There is no such thing as non-abusive ABA. There is no "but my ABA" there is no "ABA is friendlier now".

There is nothing that will ever be friendly. Nothing that will ever be acceptable. Nothing that will ever be non-abusive, that is at it's core about controlling and changing who a person is into who you want them to be. And that is what ABA is.

ABA is always abuse.

Monday, March 4, 2019

who has no empathy?

I have migraines. I get migraines all the time. I get migraines from everything. People ask me my triggers, and I laugh and reply life, because I am triggered by so many things. I'm a migrainer. My migraines are inherently part of me.

I get migraines everywhere. If I leave the house, I react to something, to everything. If I stay home, I'm still not safe, though there are fewer triggers, there are fewer things that can go wrong, there are more things I can control. My life in many ways is planned around my migraines. What can I do, where can I go? what do I need to keep myself safe? how much can I do before I cannot keep going? how many plans upon plans upon plans need to always be made? How will people react, and how do I need to plan on dealing with others?

Because people are always a wildcard. People come with triggers. People are dangerous. People don't listen. People don't understand. People won't take me seriously, won't treat me as human, won't respect me. People are terrifying and are everywhere. And yet, I am lonely and don't want to always be alone. How to I plan for people when I don't know how my body will react this time?

I can't trust them, experience has taught me that, and yet, experience has also taught me that those who treat me worst are those who's jobs claim they care for us, and those who treat me best are those who "have no social skills". Those who "work with disabled people" lead to trauma and fear of leaving the house, and the children who I hear adults all around me speaking about how much they do not know, cannot understand, will never do, show me so much love that years later it makes me less afraid to face the world.

It was a special education paraprofessional who learned that cigarette smoke was a major migraine trigger of mine, and every time she would go out for a cigarette, would return, to follow me as closely as she could, even when she was supposed to be in a different room than I was.

The number of people in different roles, with different jobs, who've claimed I was abusive for having a migraine, for having access needs at all, has been so high I cannot remember it. I've been thrown off trains, removed from buildings. I am not allowed places, not for any way I act, but because my brain reacts to the environment around me, because others threaten me when they find this out, and because this is my fault.

I must be lying about this. My disability must be made up. From medical assistants to doctors. Professionals of all sort make this clear.

My experiences are fear, knowing I'm not allowed, knowing I'm not real to others. I don't want to go into them, they're just more experiences that all disabled people know.

Because what is notable to me is instead who does care. Who does notice. Who sees me as a person.

Because without stopping, or asking, or saying I need help, there are people who automatically know and see that someone isn't okay right now, and react and respond without questioning doing so. And for me, every one of those people has been an autistic child. Every one of those has been someone who written into an IEP was things about how not empathic they are, how they don't understand social interactions, how they need to be trained. Every one of them was someone who was being abused through ABA by people who claimed they did not know the "correct" social interactions at any point in time. And yet, when they saw someone who they cared about, they immediately responded. And their teachers might not have understood. Because at times, their teachers listened to them, and at others times their teachers went on about how socially inappropriate they were being, but every time, these reactions were the meaningful ones, the helpful ones, the ones that showed me that I mattered to someone in the world, and also the ones that did anything to make it easier to get through that moment in time.

A child taking off their earmuffs he was wearing because noises were too loud, and bringing them to me, and trying to give them to me because they thought that noises would be more of a problem to me than to him. The fact that they wouldn't fit me didn't change how meaningful a moment like this was (and such an action reminded me of the sound protection I was carrying and could not remember about without a reminder. Yet another child helped me go through my backpack and find some sort of hearing protection item to make noises less overwhelming).

A child stopping doing what they was "supposed" to be doing, going through their teachers stuff, and hiding everything that might be a migraine trigger of mine so nobody could interact with it. The teacher got really annoyed with them because of them going through their stuff rather than doing their school work, but it was because the cleaning supplies and such that were easily accessible were repeatedly triggering migraines. They did not find this acceptable, and wanted me in the classroom, so fixed the problem, removing the migraine triggers, so nobody would interact with them.

A class, shutting the lights off, closing the shades, to make it a dimmed classroom, before I entered the room, when they found out I was going to try to teach despite my migraine having spiked high. In an excitable, rambunctious class, every time anyone spoke above a whisper another student reminding them that noise was bothering me and being quiet would make it easier for me.

From students finding ways to help me around a school building when I couldn't walk, to students helping me find places I'd never been before when I couldn't see, it's been the autistic children who help, and they have done it without prompting, and without forcing help upon me.

While to others, I have always been a burden, a thing to remove, it's only been to those who I must hear about how much they, how much I, cannot understand concepts like caring about others and showing empathy, who care about me.

Sunday, February 17, 2019

The spoon cost of walking

The theme of my thoughts as I try to write up something for rare disease day this year is simply just how many spoons it takes. Just how exhausting it is to have to constantly be walking the line of needing to explain but not wanting to explain. Just how overwhelming it is to navigate medical systems when even doctors don't recognize that what happens to you body can happen. The exhaustion of fighting for accommodations, and the disbelief from people that you cannot possibly need the accommodations you need, and the overall being told over and over and over that you cannot exist.

Really that, in many ways, not existing to people, and that meaning being told things over and over and over that aren't true and can't be true, and being told that your existence isn't valid and can't be real. And just, being tired. Just being out of spoons. Just, everything being so much, because it's so always. Everything is built for abled people. How much fight do you have? Because every last moment of existing while disabled can be a fight. And when your disability is something that people don't believe exists on top of that, it has it's own details of how that happens - not better, not worse, just different, and it's own sort of tired.

So I keep trying to explain, and I keep failing to explain, any of the parts of what it's like that it feels like are overlooked. People seeing some parts and missing others. And I wrote this, and shared this, and it describes some parts of how I interact with my body that I have realized that not everyone does. And at the same time, it describes absolutely nothing. It feels useful to describe, this is how my body works! Think about how much it takes, how much effort it takes, think about the spoon cost if you were to do things this way. And at the same time, it misses everything, because this is such a tiny portion. This is that are background noise to me. This is spoon cost, not things that are anxiety, not things that are daily planning, not things that are choosing what I can do, where I can go, how to do things, not the overwhelming layers upon layers of planning that go into everything. This isn't everything that isn't movement and there are so many other thing. This is such a tiny fraction that it feels like nothing.

And at the same time, it feels like it's so much, yet another place of the overwhelming exhaustion of never having spoons because abled people just take things for granted and like, how do you do that, I don't understand. So, while things are nothing, and so much at the same time, I can try to explain, any parts of what it is like to live with my disabilities. Things people take for granted that I can't. Because, really, I'm just so tired, and I have so many reasons to be tired, and people don't see any of them. So I'll try to explain, anything that is explainable in the words I have right now.

Something I've had trouble explaining to people lately is just how much Effort it takes to have body do things. How much cognitive thinking about and concentration and knowing that if you mess up any one step then it all falls apart, and that's not just your body but your thoughts, because you have to make the decision to do each part of those actions.

Apparently this isn't how people usually walk? Apparently people don't usually walk by actively deciding to pick up foot, move foot forward, remember to balance, remember to keep foot pointed forward, think about keeping ankle oriented correctly, think about how you place foot down, all of the steps of walking, split up, and thought about for each step.

And it spending all the spoons for it to take that much thought. Because you need to keep track of all those things simultaneously. You need to do all those things simultaneously. You need to concentrate, and you need to force your body through not knowing how to do things.

Apparently people don't have this, and this doesn't make sense to me, because this is how using a body works. This is how speech works, from sorting out what to say to forcing words out of mouth. This is how controlling limbs works. This is how trying to keep track of where body parts are, and what they're doing is. This is just, what my body does.

Except, I can't even just say that this is what my body does. Because that is an oversimplification. Because I know it's unusual to have migraines that come with things like sudden weakness. Where on top of this, I'm needing to through force of will manage to Move and Do Things in order to manage to get through basic daily necessities or staying safe. Where I don't know how to keep my body upright because of not having enough strength in my leg, I need to drag it behind me, but trying to force myself to do it anyways, because it's the only way to get away from places that will make the migraines worse and worse, and in doing so, have my body fall through levels of things it can and cannot do in ways that do not make sense even to me. Because people see what I "can" do, what I can push myself through, at least sometimes, when it feels like I have to. And they don't see the cost. They don't see the days after, when my body doesn't respond, no matter how much I tell it to, because it is it safe enough without. They don't see the physical pain that has been caused. They don't see how exhausted, overwhelming exhausted, everything makes me.

And what isn't seen is the failures. The times when my body says, what, you want to climb a stair, I don't understand how you lift a foot, and put it on a stair above, that concept makes no sense to me. The times where I go to put a foot down in front of me and I just put it down with my ankle sideways. The times where I try to step without lifting my foot. The times where my leg gives out because no matter how hard I try, the strength just isn't there and force of will isn't enough.

Those aren't remembered, by people who don't deal with them regularly, aren't fighting against them always. I'm just "clumsy". Not actively fighting my body to force my body to move. Not feeling like fighting through quicksand would be easier than just trying to get to where I need to be, because every step I feel like I'm going to fall on my face if I don't do it perfectly right.

The failures aren't remembered by people who aren't terrified of them, because of not knowing how bad they are at times. Random falls, because of strength leaving, not being able to control limbs, all control gone, no matter where I am. Terrified this will happen in the road again. Not having ways to prevent it, because that's just how my body works, it takes effort to do things, it can't always do them. I can't predict when it can and can't. Triggers aren't predictable. Triggers are everywhere. Always. Nothing is safe.

What is seen is someone who spins and jumps and uses body in ways to make brain feel better. And what is missed is how much work it is to do.

So I'm told how much I don't need help. How much I can't need help. How much I should be fine.

I don't need a placard. I don't need crutches. I don't need to use straws to drink out of cups that my body can't predict how they move, and in times when my strength and coordination are even more unpredictable than their baseline. I don't need people with me to help me. I don't need things. Because I could usually make due enough to survive, if survival was all that I was trying for. If I was not going to do anything else. If I did not try to do things like leaving my room, that's an option. Not an acceptable option, but an option.

Because trying to do anything, and I just can't keep up with myself. I can pretend hard enough at times, but I just fall further and further behind, burning myself out further and further the more I pretend.

Apparently people don't have to try so hard to do everything. Don't have to think about every word coming out of their mouth, don't have to plan every motion. Don't need to concentrate, focus, force everything to happen.

But this is how I have to do things. This is how I interact with the world.

And it's fine. I am happy this way. But it should be recognized, that this does take spoons, and I simply get tired.

Monday, February 4, 2019

my words are my own

Dear teacher,

You know who you are. You. All of you.

Your words aren't my words.

You can't say that I believe what you want me to believe. You can't say that I think what you want me to think. You can say that I am who you want me to be.

You know who you are. You, who thinks that you can manipulate your students through me. Who tries to make it so that the only adult they trust is said to say the things that you know exist only to control them.

You can't control my words. My words are my own.

I've heard you say "Don't you agree" to me so fast that I don't have any time to process what you've said. But no, I don't agree. And your students will hear that. Your students will be told just how much you are trying to manipulate my words.

I've heard you make claims about what I think, without asking me, knowing I will not agree. And no, this doesn't stand.

My words are my own.

My disability doesn't mean you can control me. I am not a tool for abuse.

No.

You know who you are.

And I know what you're doing.

My. Words. Are. My. Own.

Sunday, February 3, 2019

504 plan meeting from the student's point

I was in discussion with someone who wanted to read about the process of getting accommodations from the student's point of view, and realized that I didn't have any links of this. I didn't know of anyone who had written up what this was like for them. But I could write up my memory of getting a 504 plan, even if most people would want to know what it's like to go through getting an IEP.

For me, getting a 504 plan was people deciding this for me. Things were too much. I kept being overwhelmed by things being too much. It was at the point where my disability was annoying for others, and where people couldn't pretend I wasn't disabled. It was at this point where I was going to a different school, and going to one which cared enough about me to provide accommodations when they realized I was over my head because your grades aren't all there is to school.

I was in high school. Might there have been things that could have helped me before then? I don't even know. I didn't know abut the possibility of accommodations. I didn't know about the concept of me being disabled. It wasn't available as a thought, and looking back I have no clue what would or wouldn't have worked better, because so many people focus only on if your academics are good then clearly your time in school is good, when my academics were good, and my time in school was awful.

But at this point I was in 9th grade, and overwhelmed by people, and changing things, and feeling like I kept getting put in impossible situations. And at this point, it was seen that I was a disabled kid who should get accommodations.

So, my parents, the school counselor, and I went to a meeting in her office. I had a chair in the corner. I was allowed in the room, but I was off to the side. The meeting was about me. I wasn't part of it. I was off to the side.

They talked about me, what problems that I had, what things could help. I wasn't asked what would help. Others decided what would be good for me. If I wanted to add information I was allowed to, but it wasn't lets try to make them figure out what would be best and support them through this process by figuring out what is available, and figuring out what types of things might possibly help by how we know them. It was others talking about me and me having the option of adding things. And being asked "does that sound right", when I am someone who will just say sure, good, because of being overwhelmed, and wanting to get away, because it is too much, too long, need to get out of this meeting. I am someone who will say sure, because of not wanting to cause problems, not wanting to make things harder and more awkward and more work for others. The fact that it's about making things easier for me, about my accommodations, doesn't change my immediate reactions of but I can't cause you to do extra work. And if that isn't planned for and taken into account, then it will come up. It was people talking about me, and me saying sure. That works. And it being like it didn't matter that I was in the room, except that I knew what happened. And if anything really bad came up I had the option to say no.

But what didn't happen, was it wasn't people asking me. It wasn't people including me. What could have happened instead, was people trying to make it be about me. It could have been a place where people could teach people like me how to figure out what accommodations are accommodations I want because they are what accommodations I need. (I still don't know what would help for executive functioning, because nobody has ever tried to help me figure this out and I don't know how to go through that analysis process of what would help.) It could have been a place where people could have given me agency over what do I need, instead of me feeling trapped in a room knowing others were talking about me and wanting to run because of feeling so trapped. It wasn't that. It was people talking about me. You can do better. You need to do better. (And looking more general, I know so many people who reject accommodations because of their accommodations being done like this.)

And then I had a 504 plan, and it existed, and I didn't know much beyond that. I knew that meant that things that had been causing me problems weren't going to exist anymore because it was written down that it couldn't. But I didn't know anything beyond that. I was confused but didn't want to talk to anyone and didn't want to ask any questions and didn't know what questions I'd ask because it was like sure this is a thing, and not really explained to me. It was like, because I was there I didn't need an explanation because I would pick up the explanation. Or like it wasn't necessary because 504 plans are simple and thus don't need anything explained. But I just wanted to have the information because information is important to me and wasn't given it and felt like I would need to seek it out and didn't know how.

It worked out to be helpful and valuable and something I am glad happened. I'm glad I got accommodations. I'm glad I was seen as disabled and taken seriously as who I am. But, as a disabled child, I was talked over. I wasn't allowed to be equal. I couldn't talk about myself, others talked about me. I wasn't allowed to understand, because others understanding meant it didn't matter if I did. Things about me were about me by others not with me part of the process, and that has effected me years into the future.

And that is a problem. I should understand my own accommodations. To some degree that was taken from me by people denying me accommodations. To some degree that was taken from me by people choosing my accommodations instead of letting me understand and help figure out what it is that I need.

And who knows, I could have had accommodations that were more of what I needed if I was simply asked.

Wednesday, January 30, 2019

You, yes you, deserve accommodations

You, yes you, deserve accommodations.

Deserve isn't the right word really. But you say you don't deserve them. So no, you do deserve them.

Accommodations aren't about being deserved or not. They're not about you being "worthy" of what you need. They're not about you being good enough. You don't deserve accommodations because have the right to accommodations. No matter how much you think that you're not disabled enough. No matter how much you compare yourself to others. You, yes you, should get every accommodation you need.

You've been taught your entire life that accommodations are for the weak. That you're giving up. That you just need to try harder. No, this is for you. This is making things equal. You aren't weak for asking for, for taking, what you need. You are strong for being a disabled person living disabled, demanding that we do not need to just try harder when there is no harder to try. You are strong for finding what the things are that mean you can do what you want to do. You are powerful. Accommodations are not weak.

You've been taught your entire life that you aren't disabled enough. To compare yourself to others. But what about those people. You aren't them, don't need the help they need. You're either taught that you're better than them, or that you're taking from them for requesting accommodations. But, you're disabled too. You can live you life as who you are, instead of trying to pretend you are abled, trying, fighting, failing. You aren't better than others, because of what help you need being different, but you can find the help you do need. You can ask, you can get those accommodations. You aren't stealing from others by getting what you need. There's not a limited supply of accommodations where once they're used up they're gone. People making the world more safe, more accepting, more accommodating, is helpful, not harmful.

You are disabled enough. You don't need to look at others and say that because you can do things others can't, you need to try harder, you need to do more. You don't need to fight to do everything always. You are disabled enough. Everyone needs help sometimes, and everyone needs to turn to others. And you can say, I can't do this. And you can say, just give me this accommodation. You, yes you, deserve accommodations.

You hear the messages of how inspiring this person or that person is. Of how much everyone does. Of how great people are. You hear the messages of how hard you need to work. If you just try a little harder.

But, you can say, let me be me. This isn't for me.

And you can have accommodations.

You hear the messages of who you are supposed to be in other people's eyes.

But who you are doesn't change.

And you, yes, you, can, and should, still request accommodations.

Monday, January 28, 2019

Your child is a child

Your child is a child

Want to hear that again?

Your autistic child. Your disabled child. Your child, who you are scared about, who you hear all of this fear mongering speech about. Is a child.

You're confused. You're scared. You don't know what to do. That's fine. But your kid is a kid. Your kid needs to be a kid, because they are a kid. Autism doesn't take away their childhood. Autism doesn't make your 5 year old not a 5 year old. Autism doesn't mean your teenager isn't a teenager. Your child is a child.

What's happening. Where do you turn. Stop, and think, and let yourself calm down. Because what your kid needs is to be loved, like a child. To be respected, like a child, to be parented, like a child.

Your child is growing and learning and an amazing being, who is themselves, their own unique being. And you don't have all the answers, because you don't know anyone else who's child has all the same needs and interests and ways of interacting with the world as yours does. But all children grow and learn. Autism doesn't change that. Autism doesn't mean your child won't grow up and be an adult.

And when you need to ask questions, you can say, my child is autistic, how does that apply, because lets find the ways to make this world less awful for someone like them, lets find the ways to teach how to advocate, lets find the ways to be, and love who you are in such a world. And at the same time you can say, my child is a child. They will babble, they will question and learn their body as their body grows, they will question you and push boundaries. They will be their own unique amazing being who's growing into an adult and finding their way.

And that means yes, your child is disabled, and you can't ignore that, don't make your child grow up unsupported and unaware. It means yes, your child is autistic, and having the resources of autistic adults in particular can be very valuable. But it also means simply, your child will grow up because right now they are young, and they won't be young forever.

Autistic children grow into autistic adults. We don't stay children forever. We grow, we learn. We are, we exist. Your child will grow up. Don't forget that.

"At least it's not worse"

"Oh but you're safe here", "it's not like anything could actually happen to you", "at least most people are supportive"; being told others know my reality more than I do is just yet another day-to-day thing. Being told that things that have happened to me, do happen to, that I need to prepare to happen to me every time I go and do anything because of how unsafe the world is, could never happen, is just more of the my story - someone who cannot know what is or is not safe, because Things Are Worse For Others.

"It's not like it's dangerous here, in this place", this place where I've been repeatedly threatened for being disabled, for being queer, for existing. This place where you are telling me of course there's no danger, but where I've had people do whatever they can to purposefully trigger my disabilities, threaten me physically and emotionally, refuse my accommodations and scream in my face that I cannot be, make me fear if I'm alone. It's not dangerous, because you don't see the dangers. It's not dangerous because you want here to be safe. It's not dangerous because I've found a way through.

"Everyone here is supportive", in a room with people who have abused me. Memories washing over me every time it's said. Needing to run, but unable to, because that would be even less safe, with people knowing how other I am, how I am the one who was hurt, I am the one who isn't safe there. But everyone is supportive. I just need to pretend. Because you want your safety, your friendship, your reality without the pain of life.

I just make it up. I'm not really in danger. I've not really been hurt. I don't really have any reason to be afraid. None of the people you care about have done anything to me. Because my experiences shouldn't exist. Your reality of everything is great. Everything is friendly, and awesome here is more important than what has happened and is happening to people like me.

"At least it's not worse." But my experiences aren't real to you. And I know that. I always know that. And the gaslighting continues whenever I interact. And you, you're everyone. Because I'm someone who just is yet another person who doesn't really exist in your reality. I am not important enough. I just exaggerate, I just fake. I just...

I should should be happy to be alive.

Because it's not like I matter to you anyways.

Oh but I'm safe here, in this place, where my experiences aren't believed, where my reality isn't believed, where I'm told I'm not real. I'm safe, because I'm told I am. I'm safe, because you want me to be. I'm safe, because there's no alternative.

Except the reality of knowing who I am.