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