I'm nonbinary like my gender both is my disabilities and it isn't

I'm nonbinary. My gender is nowhere in the galaxy of male or female. It is still my gender. 

I'm gendervague and neuroqueer, my gender cannot be entirely explained because of my neurodivergences but the part that can be explained is the act of queering my neurodivergences. My gender is a noun and a verb at the same time and there is nothing contradictory about that because we are all contradictory and being forced into a society which hates us.

My gender is what it is, and it is never going to make sense to me, not to mention other people.

My AAC is part of my gender presentation. My AAC is also part of my gender - as I take this communication which actually works for me and claim it. As I am forceful this is me and how I am and you need to listen. That is part of my gender not only my gender presentation. 

My AAC is part of my gender presentation but my communication and not denying it, making it my own, being me and communicating as myself, and being in ways that are shifting norms about no this is how I do in fact communicate it is my choice, that is absolutely more deeply gender in a way I don't have words for.

The first time I felt gender euphoria and could identify it as such it was from getting ankle braces that actually helped. My disabled gender was euphoric about finally being closer to the me I knew I was but nobody would believe. 

Sometimes things are complicated. It's not just disability or gender. It's not just assistive tech or working on getting a gender presentation where you might dissociate slightly less. Or really gender is always complicated and sometimes that's in this manner. 

Voice is part of my gender presentation of my AAC. But so is visibly using AAC at all. Choices about cases is part of my gender presentation. So is the choice of low tech or high tech. 

I am nonbinary. 

I am nonbinary like sometimes I choose high tech and sometimes I choose low tech and often I use high tech and no tech in the same conversation. Sometimes I use iOS and sometimes I use android and having both set up is more beneficial and it is more me. 

I'm nonbinary like typing or symbols doesn't make sense. I do both and. Or neither. Or one or the other. I most often am using typing with symbol prediction and that most likely is thrown out so frequently you can't depend on that assumption being true. It's never this kind of communication or that. That's pinning us into boxes yet again where we should not be pinned. 

We're cats after all and boxes are for jumping into when you want to but when someone else holds you there it's never gonna be friendly. 

And yes this is gender it's not only gender but having and using assistive tech that I need without shame is intertwined with gender and gender presentation. And when you're claiming that symbol based AAC is only for kids and I'm handflapping sharing moments where I can show a child that I communicate like they do they can be an adult with such communication that's all of me.  

I am nonbinary like I when writing this I used multiple different AAC apps alongside other tools for writing. I don't have to assume my choices are limited to writing tools and tools for speaking aloud. I don't have to stick with one when it's no longer the best. 

We can do what is best in the moment even though it might be different 5 minutes from now. We can use both or neither or make up something you never would have considered we can do what fits. 

I am nonbinary like all of me is nonbinary. And that includes how I don't have to fit into other boxes either. 

My assistive tech gives me gender euphoria, and my assistive tech let's me interact in manners which fit me, and my assistive tech is part of me. And when it's part of me it has to be intertwined with my gender, part of it and separate - both can be true and both have to be, because I have a gender and my body is part of that and separate, both true. 

I can be the person who is nonbinary like sometimes I walk without aid and sometimes I use a wheelchair, sometimes I use crutches and sometimes braces are enough. And importantly sometimes I am surprised and now unexpectedly need more human assistance because I can't do it on my own. 

I can be someone who needs help and that doesn't make me not trans. 

I am someone who is who I am with varying needs and varying disability presentation and this isn't my gender presentation but absolutely helps define it. 

And how I react beyond survival is absolutely interconnected with self and gender. 

My AAC is part of my gender presentation. My AAC is part of my gender identity. 

The first time I wrote the latter it was a mistake. Something I didn't notice for quite a while and by that point I thought it felt like it fit. It fits because it's true. 

In many ways my gender is a presentation and that presentation is telling you that you can be you and you deserve the tools necessary to be yourself. 

In other ways it's so far from that I don't have the words and I need to tell myself the same thing. It's okay to be me.

no primary diagnosis

Open another survey for another study. In the demographics it once again asks "what is your primary disability".

And once again, I don't have an answer. I can't click one of those check boxes as "primary". I can't type in one word, one diagnosis and say this is the most relevant diagnosis to my life. I've seen it argued that this is for simplicity, for ease of data collection and data analysis. But it doesn't reflect our realities, and this is not just these studies.

I know I'm far from the only person who can't explain myself in terms of a primary disability and secondary disabilities. My bodymind doesn't work like that. I have multiple disabilities. They interconnect they intertwine they interreact and interrelate with each other. It's not only that all of them are important and affecting me. It's that I can't find boundaries. They affect each other. Things can be applied to multiple different labels. Why is my bodymind doing this way this day? Because it is, it doesn't matter a label, it matters how I support myself.

But again, as I apply for the supports I need I am asked my primary disability. And again. I don't have an answer. I guess I choose what they are most likely to understand matches those supports. But again because that doesn't describe me I I am denied supports

It's taken years to get where I am, between people not wanting to actually diagnose me, people not bothering to look at someone who looks like me, and being told I don't qualify for supports I do qualify for because someone with That Disability (which yes is a disability I have) doesn't qualify (but actually I do have needs with That Disability that could qualify me. It's not that simple). I've been both told I have to be only one disability and that if I am multiple in this manner it doesn't make sense.

This has happened repeatedly. This keeps happening repeatedly. This pattern of but you don't look like that. But you can't be that. But you don't need supports because of that. Because you need to be stereotypes of single diagnoses or you don't get any support.

I'm asked my primary diagnosis, and I refuse to answer. I list multiple diagnoses and say this is the list that is the minimal list you need to know to understand me. The nurse says to the occupational therapist, these all interconnect I don't even know what to write down as primary but we're required to write one down. It's the best care I've gotten of the sort. And they're still required to list a primary diagnosis that doesn't fit me.

How many people have had diagnoses denied because of the refusal to recognize that maybe when you have multiple disabilities your presentation might look different. How many times have I had doctors tell me they don't know how to deal with me. It's not just the surveys. It's always the you need to only be one thing when that's just not, accurate.

You are a good reason to use your AAC

AAC isn't about need.

How we communicate isn't about how needs and wants and only this exactly that.

It's about people and its about you

You're a person here. You don't have to communicate how others tell you to. You don't have to communicate in some way that society says is the only way. You don't have to somehow "earn" the use of AAC.

AAC isn't about need. It's not about only one option is best only one option is acceptable only one option only one way.

Because you get to choose your own life. You are in control of your own self.

If you choose it, for any reason. If you want it, if it helps you feel better but you don't feel you "need" it, if you do feel you need it, if you just want to practice and you're feeling like you're practicing, if its fun, if its because why not, any reason you choose, you should use AAC. Because it is your choice how you communicate.

And you get to choose when you speak and you get to choose when you use AAC. And you get to choose whatever combination of this and that and something else entirely: its not wrong, it won't be and can't be if it is you choosing and not you being coerced by others. It might not be the ideal set that makes life easiest for you, but its still your choice and if you're choosing something that makes some things easier or some things harder or some things take more time or some things more stressful in exchange for speed, then that's fine because you get to make that decision for yourself.

You don't need a reason to justify it. You just need to want to use it for whatever reason why ever why ever why ever. It all is a good reason.

You are a good reason.

My hands let me walk

As a community, us autistic people talk a lot about how stimming is productive. It doesn't matter that it is, if it was just fun, if it was just something we did because it felt good, that would be important and good and something that we should do and nobody should stop us from doing. But it also does other things. Stimming is ways we explore and understand the world. Stimming is ways we interact with things that are too much or too little or not what we expect or exactly what we expect, in order to make sense of it. Stimming is ways we process, ways we communicate, ways we express emotion, ways we make it so that everything is not too much. Stimming is productive. Stimming is necessary. Stimming is good. Everybody stims.

I do a lot of hand stimming. My hands are always moving. They run along walls, bounce off of other textures, have my fingers in motion, stereotypically flap, or do whatever that I need in the moment. It is ways that my body can understand what is going on aroud me. I don't process information well in vision, give me touch and the world makes more sense. I have really poor propioception in generally, but my fingers have learned how to move and understand where they are, because that is how I communicate. My hands move. It makes things make sense, it makes me able to make sense of it.

I have EDS. My hands are hypermobile, I might make sense of the world with my hands, but I can never make sense of my hands with themselves. When once again, they bounce off the wall to realize there's a wall there it comes with my joint sliding out of place. I need to move my hands. And, I once again hyperextend or sublux something or other, because my hands just do that too.

When my hands get too irritated and inflammed, it is hard to move them at all. The inflammation physically prevents movement. My body keeps being told this is not supposed to be like this, something is wrong, something is wrong, something is wrong, constantly. I need to move, it is the only way to get rid of the wrongness. I can't move, because my hands won't move.

Movement, whether hands or otherwise, repetitive movement, nice, organizing patterns which can put my brain in order, can help with the overwhelming wrongness of being unable to use my hands. But the same time my hands are flaring I find myself struggling to do what is otherwise simple combinations of motions. Step in pattern. Stand on one foot. Can't do can't do can't do. Even standing up from sitting am more likely to need someone to help pull me up because coordinating my body to do the steps to stand doesn't work.

How do I put my self in order when I can't move? Why can I not move I don't have any injuries to my ankles or hips this time. My body should work shouldn't it?

Go to stand, hand flutters by my side. Thinking how to do the motion, get it right. Stand up.

Eventually notice that every time I try to move, I am trying to move my hands. My hands move to understand the world. My hands move to understand my space in it.

We talk about stimming as productive. We talk about how it is used to process and understand.

For me, I move my hands, to understand how to move. I get confused, my sensory system can't coordinate with each other, I nearly fall, until my hands take their part in the motion of a step.

My hands are how I make sense of the world. That can be always true. I don't have to skip parts of it. And I can have that be part of my physical therapy. If my hands are flaring today, we need to do single muscle exercises, because I can't do anything that combines multiple muscles. My hands moving alongside is how I know how to do that.

There's no one best app

I see people frequently asking what the best AAC app is, and this is a hard question, because explaiing that there isn't one best app, its a question of the best app for a given person is not a single sentence reply.

It's easy to give a suggestion that is the app that works best for you or whoever your support. It's easy to give the suggestion of whatever you know the best.

And that app, is the best app for you! And not the best app for everyone. Because there's not one best app.

What works best for different people, is different, because we're different people, because we have different needs and different experiences and different lives. What works best is different, because we aren't all the same person. And that's a good thing.

For example, Proloquo2go is an app that is very popular for good reason. I have many friends who use this app. I can easily turn to people for whom this is the best app. And I trialed it, and it was complete nonsense to me. It didn't matter how much I tried, I could not make sense of it.

Others talk about how they really like it because of how intuitive it is. It was so confusing to me that after months I still hadn't figured out basics. People talk about this symbol set (symbolstix) being one that works well for many people. I cannot tell the difference between different symbols as a general rule - they are just, visual nonsense that only make the text more complicated, nothing that helps sort out what is what, or help me keep track of what is where. I never was able to figure out the editing, or many of the setting options. I got lost in the words to the point where I was able to confirm that I'd never be able to, no matter how much practice I had, use the vast majority of the built in vocabulary, with the layout they choose not to mention any I would add.

And this app is absolutely the best app for multiple of my friends.

The fact that I cannot use this, that it is not something that works for me, does not make it something that does not work well for many people. It does not mean it is not the first one I would recommend to people in some cases. Because we're all our own people with our own needs.

But it does mean, this is not the best for everyone.

None of them are. When some of us need symbolstix and others need PCS, when some of us need words in multiple places and others needs words in one place, we have different needs.

But also, what is considered easy to edit, is different person to person.

What is considered an intuitive settings menu, is different person to person.

How you swap between typing and symbols, how you use search, how you save what you're saying to say something else, how you speak aloud something while you're in the middle of typing, these all vary app to app and your preferences and needs and what is easy and intuitive varies.

And sure, a lot of this you can learn, you don't need to go out of your way to be perfect, and be afraid you're going to get something wrong because you haven't gotten to try everything. It's worth getting AAC even if you're not positive this is the optimal app it's worth getting a method of communication that is more likely a better one. But, how we talk and suggest things and help people find their way also is relevant.

(also, if you try something, and its not the best, and you find another app that looks better, then no matter how much there is talk of how hard it is to swap apps, that doesn't mean its not sometimes worth it when new apps are created or something else becomes financially available. Change is hard and also, communication methods becoming added to a system of options is not a bad thing if you can afford it)

But, there is no one feature that you can add, one change you can make, one option, that makes an app the best app for all of us (whether you're designing a new app or otherwise). Because we just, don't all need the same things. Because what is going to be the best for you, is still going to be confusing to someone else.

Choice is good. Different people using different apps is good. The same person using different apps at different times, because different apps are the best in different moments is good!

Because setting up for our own needs, rather than the expectation of meeting what others expect we should be, is good. Because actually doing what we need for ourselves, and having what works for us is good.

And because we're all our own people and actually recognizing this when we discuss technology and assistive tech is good. Actually recognizing and talking about our humanity and personhood is something we need to do more of.

But we also need to do more of recognizing that maybe we actually have individual preferences rather than you say you need AAC so lets recommend the one app that is the one that I personally know most about because it's obviously going to be the best when there is literally no reason to assume that it would be.

When I say I'm an AAC user that doesn't mean I'm the same as any other AAC user.

It means I'm me. And I'm an AAC user. And I don't know literally any other person who has the needs I have or the set up I have or the specific apps that works and don't work for the reasons that they do, that I do.

We don't all communicate the same way, we don't all use the same assistive tech to communicate either. Lets have there be more options.

and math was our common language (or thoughts on working in a school)

You ask what my job was and that's simple enough.
I was a math tutor.

But if you ask what I did,
that's another matter entirely

I cared for so many students the schools chewed up
And spat out
And tried to funnel into institutions
                                       or prison
                                       or subminimum wage
                                       or death on the street
And math was the common language we had

is that more simple or more complicated or both to say?

i'd say both

the complexity of saying your job is being human
that's not really a job?
is it?

i cared for so many students who needed someone
someone
anyone
while they were being torn to shreds
by a system that knew what it was doing
and just.
didn't.
care.

because maybe if one adult was there and giving a hand, that might be enough to grab onto

and math was our common language

sure what i did
you can talk about
you do talk about
the helping people find accomodations they need for math
or the helping someone who is being left behind and expected to fail,
  not graduate,
    who cares
      who cares
        who cares,
to pass
because all they needed was someone to walk through methods together one on one until they had the patterns sorted out rather than mixed together
or the catching someone up, so they could leave "life skills" like they wanted
or the showing someone proofs because they were just so so bored and needed something fun
or the various other academic things
which certainly all mattered

you can talk
you do talk
about the fact that i could easily personally change standardized test scores
by looking at people as people and as their needs as personal
by helping each person
each person
people people people we're people
not numbers on a test

but you forget
so often
of the person drowning of depression from the abuse of school who needed a hand
someone to just say i see you
i care
you matter
i am one of us too
i am one of me
me
i am a me
not what others are building me into

you forget
the pain and the pain and the pain
and the comfort
and the maybe someone actually showing you that there are ways to exist
that maybe you can be an adult
that maybe adulthood exists at all

you forget
the trying
flailing
failing
pain
of existing

and that being okay to hurt sometimes
because others are doing that too
because you are surviving
in a world that hates you

you forget

the necessity to not be alone
the necessity to have someone just simply care

the necessity
to have someone see you as human

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.

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.

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

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

i 

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