Saturday, June 4, 2022

My mask is pain, not neurotypicality

When I can't figure out how to follow directions, I look disabled. I know I do.

When I use the walls to help me keep track of where I am, I look disabled.

When I can't figure out what has happened if things have moved from where I expect them. When I can't keep my body still no matter how hard I try. When I use an electronic voice to talk I look disabled.

And I mask.

Some of my doctors assume I only use AAC because of autism. Others, assume it is only because of my migraines. I can show up in the emergency room with people I've never met before, and have them assume the reason I'm using AAC is due to chronic pain, because they notice my pain before my autism even when I am using AAC

So yes, I mask. I mask for my safety. I mask for the safety of others I care about. And nobody will ever assume I am neurotypical. Nobody will ever assume I am abled. But they will overlook autism, because they choose to, because I can make it so that people notice other disabilities first (and because others will similarly do this to me, applying a mask to me when I am not masking because they don't want to see me as autistic even if I am handflapping and otherwise stereotypical).

I mask, because I need to. And no descriptions of masking that I see will describe me. Because they assume you try to look neurotypical, that you can try to look neurotypical, that you want to try to look neurotypical, that you can look neurotypical enough to get away with existing and survive in that manner.

And I can't. I look disabled and I look neurodivergent. I know that. So I mask my way. My mask is pain, not neurotypicality. My mask is not pretending I am someone I am not, but being open and loud, and overshadowing myself.

I've found that so many people don't want to think about the idea of people being multiply disabled, to the point of if they notice one disability, they erase all others. If you are autistic, you are only autistic. But if you are otherwise disabled, that is similarly the only disabilty. Changing what disability aides I use, people instantly change the ways they dehumanize me. I can't be the person who needs all of these. I can only be what is there in that moment, and dehumanized as such.

And as such masking, can involve this choice of how you are seen, which is that one and single disability that anyone will acknowledge. Choosing to be actively visibly disabled, forcefully so. And in ways that are going to be less stigmatized than being autistic is.

It is dehumanizing to be unable to be me. But it is also safety, to be seen as using AAC because of migraines, to walk into walls using crutches, or to be unable to find anything because my brain doesn't understand how to visual process anything that's changed and have tinted lenses mean I'm treated better.

It's dehumanizing to be erased, but it's also safety to hide, even when that hiding is hiding in plain sight, doing exactly the same things, acting exactly the same ways, and only having the assumptions other people make change.

And that, safety, that can be lifesaving.

I mask. And my mask is most often chronic migraines.

Monday, February 21, 2022

Support is Support, not Force

I'm disabled. I need support. I needed support when I was a child. I need support now.

I have supported people. I support people now. I have supported children. I have supported other adults.

And this matters. Because there are all of these assumptions that if you are Disabled you Can't Do Things. You Need Help. You need things done for you. You need things decided for you.

There are these decisions, that we need Supported. Where by this they mean other people come in and do what they think we need. Other people come in and move our bodies without our consent. Other people come in and change our homes without our consent. Other people come in and make decisions about what we're doing moment to moment. Other people come in and choose and choose and choose and do and do and do.

And we can't choose. Because we're disabled. We need Support.

But that isn't support. None of that is.

Someone coming and moving things around my home around so that I can't find any of it doesn't help me no matter how much they said this is cleaner and better organized. Someone telling me what I need to do in the day doesn't help me even if they say this means I'll get through more things, because it doesn't matter if they're more things if its not what I want. Someone coming and moving my body doesn't help.

It is traumatizing to Need Support and be given the "support" of having all autonomy taken away from you. It is traumatizing to not be allowed to decide the own words you speak, how you move your own body, how to exist, in a world. But that's what happens. Because we need Support. And it is what is deemed Correct To Do to us.

I am disabled. I need support. That is true, even as much as I say that none of this helps, and that all of this is traumatizing. I can't suddenly choose to not need support, because what people give to me under the name of support is controlling me, rather than helping me.

I am disabled. I was a disabled child. I needed more support then in many ways. I didn't know the language I know now; and yet I needed to communicate with people who treated me as lesser. My body was growing, with all of the unpredictabilities of trying to learn how a body moves. I needed support, and was so often given no choice.

Because, really, if you can't choose whether someone is helping you, are they supporting you, or are they deciding you obviously need something done? If you can't choose, who and how and when, and the details of what someone is doing and what someone isn't, then are they supporting you, or are they deciding for you what they think you are incapable of?

Because sure, maybe I can't do that, but I can try if I want to. And I can do that with you giving me a place to fall when I fail, because I can try and try again, and figure out what it is I want to do and how I want to do it. Or maybe I can't do that, but I can decide I do it anyways, because I don't see a choice, so instead I say I need you to do this which people say isn't going to be an option, that's not how support works, but it is how it works for me.

Or maybe, I say please, I need help, do this for me right now.

Becaues you know what,
it is my choice.

And someone Supporting me, by never asking, and never listening, and never letting me decide what is done and how? that isn't support.

Me being able to decide to do the impossible, or say I can't, and in either case, having someone do what I say I need

That is supporting me.

And I need support.
And I can get support.
And I can support others.
And I can be both and do both at the same times.

Because we live in this wonderful horrible interdependent world, of trying to survive.

And that takes support.

Monday, February 7, 2022

My name is typed, not spoken

My childhood is filled with I must speak this way. I must speak the right way. I must speak properly. I must speak the way I am told.

My childhood is also a childhood of teaching myself to type, by playing on on my mom's computer, before we ever had typing lessons in school. My childhood is getting the internet, and of finding forums.

Like many millenials I grew up both offline and online. We got the internet at home when I was 10. I was told I couldn't let anyone know who I was. By the time I was 13 I had a screenname that I was regularly using.

But, it was growing up on aim, that let me communicate. It was the internet that gave me my voice. It was the internet that was where I was able to say things that weren't being deterimed by other people. It was the internet that was my freedom.

And this was the very simple reason. I could type.

I grew up being taught that my speech needed to work in certain ways. I grew up with speech being the priority the goal the most important thing. And at the same time, not being about me.

The internet was where I could type.

The internet was where rather than focusing on did I say this the right way no I didn't I was wrong I am messing up, I need to try to fix that, I can't get it right. And literally never getting to any content, I could find forums and spend hours typing about lord of the rings and getting to have it be about something and something of my choosing. It was where I could learn to interact, by getting a chance to do so.

.

So, it's no wonder that my name is typed.

Because my name has always been typed.

By which I mean, I was in college when I realized that I would sometimes just not notice when people used my legal name, but would reliably notice if people used my screenname, and over the years as I first became more out as nonbinary, and evaluated my mental name, my screename is what always comes to mind first.

And yet, I always think of it as typed.

My name is typed. Not spoken.

It isn't that you can't speak my name aloud, it is that, it is typing, that is the primary interaction. Typing, that is the first place to go. Speech is secondary if that, and if not lower on the list.

Because it always has been, and because that is me and this is me. My name is typed. It is typed because it always has been growing up finding my own way to type. It is typed because that feels right. It is typed becaues I can neuroqueer my name and have done so throw away your centering of speech and say my name is typed. It is typed because I want it to be.

We might live in a world which prioritizes speech and thinks of speech as the first and formost.

but that isn't the world of my gender

my name belongs to the keyboard

Tuesday, February 1, 2022

my speech is still not behavior

There is a pain in the comfort

of silence
of forced waiting
of being able to think clearly
of being able to know who I am

because I know it never can last

There is a pain in the comfort of trying and failing and that being okay
because I never can try 
never
never
never
it's always just a lie

there is a pain
a pain
a pain
a pain
a true literal migraine

in the exhaustion 
no
the lack of exhaustion

of being able to say this

because usually I can't
because usually you are too worried about what I say and how I say it and if I say the right words
and it doesn't matter how much anyone says

can't
fight
that

because there is a child in me who doesn't know anything else

there is me not knowing if i want to cry
or if there's me having so much less overwhelm that i can manage without a meltdown

because it doesn't matter that people aren't understanding my body
when they don't listen to my words anyways

so maybe let words at least be something i can control
rather than something so out of control that i don't understand that either
in a spiraling cacophony that is the world
and my body
and my mind
and everything in it
and nobody bothering to care

when you aren't going to listen why does it bother how i say the words

shouldn't i at least get to say the words i want

oh, no
sorry
it only matters how i say them not what i say

there is a pain
because
no matter
how
many 
times
i know
that i can live like this
and understand myself

it will never last

it only takes one little drop

because even now, years later

i will never
actually
truly have control
of my own words

Saturday, June 26, 2021

Can vs Should

CN: anaphylaxis and not taking anaphylaxis seriously, abuse, talking about disabiliy and risk of death

If you ask me if I can teach, it doesn't matter how sick I am, it doesn't matter how symptomatic I am, it doesn't matter how much I can't, I will say yes. And I will do so.

And this is one of the reasons I can't teach.

So yes, I've gone to classrooms with migraines where I couldn't see, speak, or stand. Yes, I've signed up for a summer job while I still had significant enough post concussion syndrome that my doctors were regularly seeing me to monitor how my brain was doing. And yes, I've gone and taught in the middle of anaphylaxis.

Whether or not I "can" do this doesn't mean I should teach when I can't breathe enough to not have my vision go black if I try to walk 5 feet. Whether or not I can pretend, doesn't mean it is safe.

I don't think it is a huge controversional statement that I should not teach a class in the middle of anaphylaxis, while my throat is closing, while I'm producing enough phlegm that I'm emptying tissue boxes, while lying on the ground I'm not sure I'm staying still enough and in a position that keeps me from presyncope but sure that if I rise I'm into it, and yet I have been asked when in that state, if I could teach or if I needed someone to cover.

I said I could teach. And I did it. I got to the room before anyone was there, still not sure how I safely managed it, half sat half laid across pillows with them holding me up, and yet it managed to make it look like it was me being casual - it was a casual situation after all. And had my AAC to explain what was going on, and let people do what I told them to do. Nobody knows you can barely breathe if you're using AAC anyways.

So yeah, under some definitions I can teach in the middle of anaphylaxis. I have. And what should I have been doing? I should have been in the emergency room. I've had plenty of mild anaphyalaxis situations where emergency room wasn't necessary, but when for all I know my blood pressure is crashing given the presyncope feeling, and whether or not it is, sitting not to mention standing, is a question because of the struggle to breathe, that's not a situation to be messing around in.

Except, what I can force myself to do, and what I should do are different. And when the question in my mind, is teach, or leave those children with an adult who is abusive - and even asking me to do this was abusive, there's not a question in my mind that I am protecting those I can protect. It was dangerous and risking my life and truthfully, I couldn't think of any of that in the moment, what I could think was I can find a way do these things for these children. I'll find a way, at the cost of my own health and a risk of my life.

The things we can do, and the things we should do are not the same.

And so often, we're told because we can do things we don't need help.

But no, I can do things, because if I don't children are abused, not because I'm actually capable of it.

And that, can.
That's killing us.

I am just lucky I got away, I was dragged away, I had people who could get me some kind of help I needed, and I wasn't forced into I "can" do this, even at the cost of my life.

Techincalities don't make can't into can.

And no, I can't do this, no matter what you say, and no matter how many times you ask.
(and no, don't ask me)

We can say we can't.

Even when our can't doesn't agree with your idea of can and can't. Even when you'd rather say if we can force ourself at any cost, then we can, even when under every definition we shouldn't spend that much of our own being, because we can't do it, even while forcing ourselves, we can just pretend enough that people who don't care don't notice.

Our lives are worth too much to pretend otherwise

Our lives are worth too much for you decide what we can and can't do.

Thursday, April 29, 2021

Growing up on AIM, I could communicate

I'm an autistic millenial. Like other people my age, I grew up in the internet of the late 90s and the early 2000s. I grew up on forums and reading blogs. I grew up with it being a big deal who had dial up and who didn't. I grew up around y2k. And I grew up with AIM.

I grew up in the time of AIM. And sure, AIM wasn't the only messanging program around, or the only messanger I used. I had AIM and MSN messanger and skype's text chat, and chatrooms associated with forums, and found my way to IRC. But I grew up with AIM; I grew up on AIM.

Because AIM was what everyone had, and in many ways AIM defined this time. If you didn't have an AIM account you were ostrocized, whether it was by people who'd bully you for everything, or friends still being why are you so weird. It was expected. And it was text chat.

I grew up in a time where a text chat was was the cool thing to do, it was the expected thing to do for completely everyone, as everyone moved online, and was finding ways to keep contact with friends. It was easy, it was convinient, and it was something that didn't make you stand out. Typing, text, things that weren't speaking weren't disability things, they were everyone.

And me? Who didn't get IM accounts for the longest time because I didn't understand why you'd want to have real time conversations if you weren't forced. Because I didn't want to deal with needing to process all of those things even more. What it did for me when I was dragged into this socializing, was being, this is something I can do when I didn't realize anything would be doable.

But I grew up in the time of AIM. And that meant that my learning and discovering how to communicate in text, and that I could communicate in text, and that it was possible to do things I didn't know was possible, was socially acceptable. It was expected, it was something you were supposed to do to have conversations in these instant messaging programs. If you did otherwise you were the weird one. I was able to figure out what I needed - but without social stigma of this discovery process. I was able to figure out what I needed - and with things being provided to me to search and try, and explore. I wasn't stigmatized for the discovery process of maybe I can actually communicate if you give me the ability to type.

I grew up on AIM, so this was what everyone was doing, whether they needed it for disability or not. In those early years it wasn't the slightest bit out of place, when it would have been seen more strange for not having an instant messaging account than for typing to friends when we were next to each other.

And yes, these times, where we talk about older generations calling and younger generations texting. Where we talk about the first generations of people growing up online and teens living on social media rather than on the phone as teens. They're talked about a lot in terms of differences in communication in general, but it's also worth thinking about these in terms of progress in terms of non-speech communication, in terms of what is normalized.

In some ways, the first AAC I used was AIM. I would send messages to people sitting next to me becuase I needed some way to speak when I couldn't. I pieced what I could do together using the internet. And in other ways, nobody thought this was weird, I wasn't some odd disabled person. My communication wasn't stigmatized. They didn't notice I couldn't speak. They were choosing to type too.

Friday, March 12, 2021

I like turtles (or AAC is really hard)

I like turtles

I first started seriously looking at symbol based AAC in my mid 20s. I was working and needed more support than I had in order to be able to do my job - this was something that seemed like it would mean I could work when I otherwise couldn't. Vocational rehab was supposed to get me a setup, but avoided doing so until I needed to quit with my brain and body being unable to keep up with the demands of work.

This meant I first got the symbol AAC I use in my late 20s, when I was able to afford it for myself. I'd graduated from college. I'd worked in the field of education. I'd started typing when I was young, and was regularly using typing based AAC. I was able to communicate using speech at least some of the time. And while none of what people do, or don't do is important to their worth, I'm making this clear, entirely for the next point.

It took months for me to be able to say anything besides "I like turtles" on my symbol based AAC.

AAC is hard. It is really hard. Communicating is hard. Language is hard. Learning these things is so many different things you need to do, you need to know, you need to learn and put together, and piece together. But - even for someone who had been regularly using English in multiple other forms - I could not say more than a single sentence - the same sentence always - on my system, for literal months.

And think about the expectations put on toddlers? To within a week or two be using this to communicate?

I could never have done that - and I had the advantage of choosing the app I wanted, so I knew it was one that the organization worked better for my brain. I had the advantage of being able to organize and reorganize and continue to reorganize my app to make it work better for me (and in the process learn how it was set up!) I had the advantage of decades of learning how my body coordinated, because as dyspraxic as I am now, I'm not 3 years old and trying to learn my same dyspraxic body.

I had the advantage that I had the choice and control, and that when I was practicing, I could look through other folders, trying to figure out anything else to say, and get overly confused and go back to just saying "I like turtles" yet again, and nobody would tell me I had the mind of a toddler, when I was 28, because I had gotten lucky enough to have control of who was around me as I was practicing. I had the advantage that I could lead the way, completely.

And still, it took months, where all I could say was "I like turtles". And months of practicing, in ways other people did not see, and would need to trust me that it was worth having this app and having paid for this app. And months, of figuring out things in my own very personal way. And returning and telling people that "I like turtles"

These expectations of children figuring out AAC in weeks, or even in months, are unrealistic. We are asking people to do incredibly difficult tasks of figuring out how to communicate in new ways. And it can be worth immnense effort to learn to communicate in new ways, and add these to the set of methods of communication. But that doesn't make it not, really, really hard. (I will note, that whether or not something that is difficult is worth it is going to vary, sometimes something will be worth it, sometimes it won't be and something else would be, everything is personal. I know for me, what is worth using for communication and effort and how immensely hard it is when multiple things are really hard, is going to vary moment to moment - that's okay. Communication is complex.)

We're asking people to learn to communicate in ways that abled adults can't, as they talk about how hard it is to model, and not being able to do the modeling for their children, and yet, there's this expectation that children can pick it up within a month, despite that difficulty

And beyond all of these expectations, there is the simple experience. This is hard. This is really hard. And that's okay for me to say that this is really hard for me still and was really hard, and even though it's sometimes the best I have, that doesn't change that it's hard.

And, the simple description of, figuring out AAC by repetition of even the same thing is something I needed to do and that's okay too. And if you haven't guessed, I like turtles.

Saturday, February 13, 2021

My AAC is my normal voice

CN: abusive speech therapy

When I was a child I was put in speech therapy because I didn't speak properly.

Sounds don't work that way. They don't combine those ways. They are more predictable than that. Don't you know, don't you know, don't you know.

Just do this. (But how?)

Just do what I say. (I know I'm wrong. I'm trying, it's not good enough)

Say these again. You need to repeat until you do it right. (But, why does saying cat like you do matter? people already know what I say)

You aren't trying hard enough, nobody will ever understand you. (I can't make sounds go right order in words you don't make me say over and over again anyways. I'm not saying anything. I don't want more words to say over and over.)

You don't need anymore speech therapy. [You speak properly now]

Don't you know, that the people coming up to me and making fun of my voice is something that doesn't happen enough I don't know how to talk about it. I know my voice is uncanny valley. But none of this bullying that has lasted into adulthood happens. My speech is normal now. They said so.

Don't you know, I don't need any sorts of support, I can't just speak. My speech is normal you see. What I actually need for supports isn't what matters. It's what people deem as normal. It's what people deem as close enough to normal.

Don't you know, it's do I try hard enough, when anyone notices my speech isn't like theirs its because I'm not trying hard enough. Don't you know if I can't read aloud its because I'm not trying hard enough. Don't you know if I get overly fatigued and my mouth stops moving in anything like word positions its because I'm not trying hard enough. Don't you know I just need to try, with more energy than any person, non-disabled, or disabled has. Because I need to look like others want.

Or that's what I'm told. That's what I have been told. That's what I was told for much of my life.

I talk about not using AAC until I was an adult. I was told my speech was normal. I just needed to make it sound normal. It was just needing to try.

I wasn't directly told AAC was failing, but they didn't have to.

I was told I was normal I was told I was normal I was told I was normal. I was told I had to be normal.

If you don't speak like this nobody will understand you

There's no alternative. I wasn't told AAC was a failure, but they don't need to say that when you're told there's no alternative.

My AAC is my normal voice.

Do people have to be normal to be understood and important and relevant and people? No.

But if my speech is normal, then my AAC is my normal voice.

Why is saying nothing preferred? AAC at the doctors office

I do not need to ask why is it that I've had multiple doctors ask me why not everyone does this typing to them, but why?

Why are we so focused on speech as society, that even when you cannot speak because of illness you try, and won't turn to the phone you are already caring?

Why is speech so prioritized that typing is so much a failure, subhuman, thing to do, that saying nothing is preferred?

Why are these doctors, where it makes their lives easier, because I am the first patient in these scenerios, that they can easily get a picture of the situation, that treat me as something even close to human?

I know these answers. Or, at least I am not surprised by any of this. I was one of the people taught from birth how much I was a broken child because my speech wasn't like everyone else's. I am someone who has been told too many times to count how much my words don't exist, because I am typing. I am someone, with the trauma of forcing speech. I am someone with this in my body at all moments, as my body needs to remember how to respond to people, to communication.

But, at the same time. I cannot understand. I can't understand why someone would choose to be trying to talk through coughing so hard it is making you black out - and I've been directly told by a doctor I was the first patient they've ever seen that didn't try to do such a thing. It is so much easier, to not rely on the unreliable body parts which aren't working in these moments of illness.

I want to tell people, this is an option. I want to tell people, it's okay, you aren't taking it from some other people, if that's what they're afraid of. Or, if you are afraid of being like "those people" then get though this doctors appointment you need to get through and then read the words of those people. Listen. You have so much to learn.

I want to tell people that this is an option. That, they don't need to speak at all moments of time, even if they do usually. Even if they do all the time, except for illnesses like bronchitis, such as I am referencing as an example here.

You aren't wrong if you use AAC because of laringytis or bronchitis or anything of this sort. It's great! It's for everyone. Use it.

I want to tell people this is an option. And society is wrong, in saying that you need to try to speak. You don't need to force yourself. You don't need to spend energy, or oxygen, or physical pain. You don't need to try to speak when you physically can't. You simply don't need to. And there are options. You can do what works.

I want to question how people using AAC in these moments is normalized, rather than if anyone else will see these doctors with AAC. I want to question what is being done now, rather than why I was the first. I want to know, what are we doing, so that people can communicate, however they can, whenever they can.

And I want that to mean everyone.

Tuesday, December 8, 2020

Not all languages look the same; our AAC needs to recognize that

I've been working on learning Finnish, and in order to do that, I've been trying to set up a Finnish AAC setup. If I am going to be actually learning a language, I need my AAC to support that language.

What I have found is that it doesn't support it. I can get a voice (and voice engines have a single voice choice, and there are so many languages that don't have any voices), but as I am trying to set up a symbol-based AAC, something I need, and use, it doesn't work.

I have spent an unreasonable amount of time searching, and yet, for all of my searching, all AAC starts from the assumption that languages work like English; that languages grammar work like English, or sure you might change word order between Subject Verb Object, Subject Object Verb, or so on but that can be just chosen with a different order of button presses. They come with assumptions that they can start with English, and order of button presses is all that might vary.

And yet it feels wrong, to not be able to label words as postpositions, with preposition as an option, but not postposition, for types of words. It is a challenge to make AAC work for me when I can add 8 inflections for a word and no more, like words never have more than 8 inflections, when working in a language with more than 8 inflections for the same word. Conguation works differently in different languages - we need to recognize this. Inflections for nouns, adjectives, and other parts of speech are work differently for different languages - we need to recognize this.

We need to, because currently everything is built around English. And not everytihng looks like English. And that means not all languages are supported. Because not all languages are English. And not all languages have the same structure as English.

And all languages need AAC.

There is so much talk of how many button presses to get to words, but when additional folders need to be created, then the number of button presses has to go up - sometimes dramatically. Every test sentence I tried was at least double the number of button presses of what it'd take to say in English to say an equivalent in my current attempt of building a board set in Finnish because of trying to force it to work despite lack of support. This large number of button presses is in large part because of differences in inflections - I don't have the number of noun cases supported and need additional folders for every noun and adjective. I don't have the idea of a language that looks like this supported at all.

But, there are many areas in which languages vary beyond this one example of noun cases - as well as many in which English is unusual. Tenses, questions, there's a lot of things that are just, we need to be able to support how it works in other languages as well.

I cannot find any symbol based AAC that looks comfortable to use with an agglunative language. And agglunative lanaguges exist.

People speak different languages. People have different native languages. People learn different languages. English is not the only language that exists. And limiting people to English because of their disability is a problem. Limiting people to only certain limited languages, because of their disabilities, is a problem. People speak different languages, not all languages look the same, our AAC needs to recognize that. And our AAC needs to support that.