My AAC is

My AAC is how I communicate. My AAC is freedom. My AAC is what lets me say what I want to say (at least some of the time). And my AAC is mine. It is part of me.

I am an AAC user. I am an AAC user who happens to have access to speech sometimes. But I am an AAC user.

And people ask, what AAC is?

It's what it is. It's part of how I communicate. Its the tools that let me do this. AAC is AAC. AAC is a wide variety of methods of communication. AAC is so so very important.

What its not is 'something besides speech'.
What its not is 'this is what AAC stands for'
What its not is the medialized 'you go through these gatekeepers and they deem you disabled enough to get services you've needed for decades but people have been denying you trying to normalize you'

What its not is any of the definitions I see people giving since the are so much trying to formalize and fit into boxes and make it easy and pretty and tied up in a bow.

My communication is what it is, messy and imperfect and using piles of tools. Built from the grave of what professionals tried to form me into, and me searching and searching and searching for things I need.

My communication is what it is, made of so many pieces. With at times professionals abusing me and at other times professional supporting me to have more accessible forms avaiable to me.

My communication is what it is, and it is mine.

I am an AAC user. And my AAC is made of my fighting for accessible communication. It's not made of This Thing or That Thing. it's not made of being given access. It's not made of easy simple patterns.

My AAC is made of this tower where I pull from all types of communication. Where I've searched and found and said my AAC isn't either or. My AAC doesn't have to fit in your boxes. My AAC is part of me and I don't fit in a box you confine me to.

My AAC is not some sort of this is what I use instead of speech.
I mean it is.
But its so much more than that.

My AAC is not some sort of this is what I use alongside speech to make it easier to communicate.
I mean it is.
But is so much more than that.

My AAC is not some sort of I use this in order to communicate when I can't communicate with speech alone.
I mean it is.
But its so much more than that.

Because in so very many ways my AAC isn't about speech in any form.

My AAC is about typing and symbols, high tech and low tech, grabbing a random item, getting things across however, its all communication.

My AAC is about sitting there never saying a word not because I can't or because I won't or for any other reason but because why would there even be a discussion about speech. Who cares. It just isn't relevant. Not everything is about speech.

My AAC is about fire and water, rocks and leaves, the ways we support each other and a cat's purr.

My AAC is about freedom from speech more than it is about speech. It's about the ability to say, nah, not not everything is about that.

My AAC is about the fact that I'm even writing this is too speech-centric because I shouldn't have to say that speech doesn't have to be default.

My AAC isn't alternative. My AAC isn't augmentative. Because my AAC is not in comparison. My AAC is itself and that is all it has to be. It doesn't have to be 'not that'.

My communication is in reference to itself, its in reference to me, its in reference to my life my relationships. There's no reason to define me as 'not that' rather than who I am.

I'm not giving speech that much power to define my communication that much. I'm not giving speech the power of defining how my communication works when my communication has its own power.

My AAC isn't either or

I type to communicate. The most natural way for me to communicate my thoughts is through a qwerty keyboard. I can say things I can't in any way through the keyboard of my laptop.

I rely on symbol based AAC.

It's not a typing or symbols, its not the keyboard or pre-written phrases. It's the reality that I can't always communicate in the same way. It's the recognition that options are what gives me the ability to communicate in a wider variety of situations, and what makes me safe.

It's me choosing what I need to in the moment.

I see so many things about typing vs symbols, spelling vs talkers, literacy and AAC, freedom to communicate whatever you want.

If I can't get across the basic necessitites to get the care I need in a medical emergency, then it doesn't matter whether or not I can write poetry on that device, because what matters is survival. (Yet, poetry made from the things that we say to survive is its own poetry.)

I find the keyboard the most freeing, the easiest, the way that I want to use by choice when all else is equal, because it lets me get things across without fighting my bodymind.

And when all else is equal is not a thing which should be assumed to be true.

Things are not always the same, whether its the rain pouring down, whether that's people taking my AAC device from me and screaming at me for not knowing how to reply, whether its being in a pool, whether its crashing into crisis and not being able to coherently type the symptoms going on in my own body.

The situations of life are so extremely varied, and my AAC represents that. It's not this or that, its this and that. It's this and all of that, for all of the situations that I interact with. Because I'm not gonna assume everything is the same. 'Cause its not.

I rely on symbol based AAC. My bodymind isn't reliably the same with chronic illnesses affecting it differently day to day. What works best now might be different next hour. What works best is what works best right now, even when best is the limiting option of only able to say enough to keep myself alive.

But, while for me it comes down to typing is what I prefer and symbols are what I need in order to communicate due to chronic illness flares, it isn't that one or the other is better than the other, its that they both are used in the ways they are, when they are. They're set up for those purposes. They're set up for how I need them. They're not something thrown together like communication is one size fits all. 'Cause its not. It's far too complexly human for that.

And so I type, and I use symbols, and I use high tech, and I use low tech. I set up a variety of choices. And I do this for multiple reasons I don't have One Diagnosis that is why I use AAC. I don't use AAC for only motor skills reasons, or for only cognitive reasons, or for some secret third reason (such as anxiety) that people ignore. What we use, how we use it, why we use it, when we use it, all of it isn't either or.

I type for cognitive reasons and use symbol based AAC for motor reasons.

Because I do both. I use AAC for both cognitive and motor reasons. I use AAC for chronic illnesses that flare and stabilize, and for my baseline. I use AAC because its what works for me.

I use AAC because I want to.

But its not something simple like you type when its motor based and use symbols when its cognitive based. For me its always both motor and cognitive. And while typing is what is easiest for my baseline motor skills, with the predictability and reliability of how my keyboard moves under my hands, when I flare and am having difficulty hitting any button reliably, its symbols that are what are gonna be more effective at getting a message across in the amount of time that is necessary to say something.

And similarly, typing is lower cognitive effort for me, its for cognitive reasons that typing with predictive text is the thing that fits me best if you give me an on-screen keyboard. Doesn't change the aphasia that means that I need stepped through what I might want to say because I can't remember anything besides the word dishwasher.

It's not typing is this symbols is that, its not I use it for this reason or that reason. My AAC isn't either or. It's both and. It's all of me not parts of me. It's complex and additive and lets keep finding things to fit in missing pieces.

'Cause there are some. I find them all the time. And I find ways to add. I find what's missing. Since its yet another and that's missing. It's another way to use AAC, another reason to use it, another situation I didn't plan for, another combination of events that lead to things being hard to use. There's no one solution that fits everything. It's about making a toolset that fits me.

It's about making that tool set which includes the recognition that AAC always helps me but I could usually force some degree of speech if really required and I ignored how much it cost me, and there are times that no matter what I couldn't force speech. It's about making a tool set that recognizes that usually selecting buttons on a screen is just fine, and sometimes its just not possible. It's about making a tool set that recognizes that usually typing messages like this is what I want to do, and sometimes getting across a word or two to a communication partner who explains is the best that's gonna happen. It's the tool set the recognizes that AAC is both something I always need, and sometimes the things I need from it are situational.

It's setting up with an iPad and android tablet, high tech and low tech, choices strewn around so there's multiple within reach at any moment. It's not the you restrictions of either or, but the freedom of possibilities and choice and freedom to be able to communicate in autonomous ways.

And when that's AAC its AAC. When its something else, its something else. Because I'm gonna set up for having at minimum three different AAC methods on me at all moments, and if I speak there's nothing more or less valuable about that speech than anything I type. If I sign, there's nothing more or less valuable about signing. If my cat jumping into my arms and screaming is what makes you realize that I need assistance with an acute medical situation, then that's a great way to have my cat act as a communication partner.

Because none of this is either or. Either or is limiting and restrictive. It says i have to be one way, when I'm so much more than one label. I have things I'm great at and things I need help with. I have thins I like and things I hate. I have things that are easier, things that are harder, things I choose and things I avoid. I make choices. I communicate and communicate in ways that I myself, am in control of. I care about people and people care about me, I interact with them, and they interact with me. And none of it is as simple as either or.

None of it I must do this or must do that. None of it has to apply to a label of your choosing. It doesn't fit within the labels you try to stick onto me. None of it has to be because of this, caused by that, related to this diagnosis. None of it requires these interventions to fix. None of it requires anything others declare about me.

I don't fit in your boxes and if people fit there then great, but those boxes when they're being used to apply and force and restrict like they so often are is only removing ways for us to thrive as people. They're removing our humanity.

Saying we're Only this and Have to do that and AAC Must be used in this way because of Exactly This is saying I can't be human enough to be weird and wobbly.

And I'm rigid and fluid, a creature who swims through the sea and lives on land, from beyond boundaries and in liminal spaces, and who's communication fits me, not anyone besides who I am.

I'm echolalic. I'm not a gestalt language processor.

I am echolalic. I am not a gestalt language processor.

The ways I communicate, are, not tied to the descriptions of professionals. They're too wobbly. They move. They aren't stages where I move from one to another. If I'm scripting more today than yesterday that's not better or worse. If I don't have words at all that's not failure.

I'm echolalic and the way I commnicate is so specifically necessarily echolalia and not any other word. As I once again echo the the words of autistic advocates who came before me. The echolalia of describing my echolalia with the words echolalia used by others because this is ours and that matters.

It matters that I am able to say things the way I do. Because the way I built communication out of mixing sentence structure from here and phrases from there and smoosh my words in there and out come a thing. The way I did this online away from the professionals and with others like me.

I am that echolalic person who was thought when I was a teenager, that I came from England, becase the places I learned language from were British Fantasy books.

And I'm that echolalic person who still will squish a word from here and a sentence structure from there, to the point where people won't even notice.

If you don't understand the meaning that does not mean it is not there. If you misundestand me that does not mean I am not saying the things I am saying. My communication is not about needing to learn to "break down" things even as I have smooshed things together.

Even as I did that I'll echo entire phrases as I choose. It's my choice. I just find this the current least energy cost manner to get across the ideas I want. (Or truthfully, repeating my own from a decade or two ago, when they first were formed in this manner and have been used since.)

Tunes and songs don't talk about me. I wasn't a kid who was all about learning things by intonation. But give me a book and I would learn the phrases from those characters more than the people around me.

I'm echolalic. I'm echolalic because I do this echoing. I'm echolalic because it makes communication so much more efficient. I'm echolalic becase when I'm out of energy I can get things across. I'm echolalic because when I know what I want to say and not how to say it I can probably get something close enough you can follow.

Collecting up scripts and scripts and scripts to the point of not even remembering them until they come out is effective for being able to grab something at a moment's notice.

But I'm not a gestalt language processor. I'm not one because you always leave out people like me. You forget we can exist. I'm not one because I don't want you to claim me when my commnication is not defined by somoene like you. I'm not one because my communication is so far more powerful than a definition.

ethylene gas

Content Warnings: compliance training, working in systems which knowingly oppress, refrences to ABA and suicide ideations in children

I keep seeing professionals talk about how they are a good [professional] in a broken system! The people who are willing to admit that maybe there is smething wrong with how others do their job, keep talking as if they can be the exception. And always, they are talking as if they can be the savior.

These people aren't admitting or recognizing their compliance in the system. These people aren't truly even recognizing the broken system.

So, people. I'll tell you something you don't want to hear, but need to. If you actually want to help disabled people you need to actually recognize: what you were taught is abusive.

Those classes you took to get the degree and license, they taught you to do things that are abusive. That professional development you take, it teaches you more ways to abuse us.

The entire larger system of how we are "helped" from education to support staff, from medical fields to early intervention is built upon the idea of us being less human and others being saviors who come in and save us, frequently by fixing us, without asking us what we want or need.

If you are working, in special education, as a therapist, somewhere with disabled people, you are complicit by working in this system.

And sometimes its the best option, yes. But you are still, complicit, and you were still trained in abusive methods, and you still need to know the ways your field is built to break us in the name of "fixing" us.

I am not saying that currently, while we don't have any other options, nobody who wants to do good should work in this system. I am saying, you need to recognize the system, and you can't just go and say you're an exception, because as much as you want to be, and as much good as you do, you're still working in the system. And - this both will cost you, if you are truly going to actually care - and it can be so very worth it, because while it is only mitigation, mitigation is also a very huge deal.

When I am there in the room while someone once again has their body taken from them I am complicit. I have to be in a broken system, I cannot be in that room and not be complicit, as much as I successfully reduced the frequency that these students would have control of their bodies snatched out from under them. It was worth it to me, being able to throw myself in the way, knowing ways to distract, knowing ways to redirect the actions of the BCBA onto myself, and I never, never, never, could prevent it all. I was complicit, by being in that room and not pushing the therapist out of the way. I was complicit, by not screaming and making a scene. I was complicit, because I knew what was happening, and I let it, and helped the student afterwards once there was a moment, where I could let them process and breathe and have an adult who would let them make a mistake. Because every last analysis said it was better to do what I could, and I couldn't do that if I was gone.

But that didn't make me not complicit.

It is pain to know that sometimes. I can cry from the nightmares of what happened to me in that school, and I will absolutely always, be aware that there were times that I made mistakes and if I moved a different way, if I said a different thing, maybe they'd have been hurt less, because I didn't stop it, I only mitigated, and reduced, so that I could keep preventing the majority I could prevent, and keep being there for the students who needed an autistic adult in their life. I hurt people, even though I didn't want to. And the fact that I didn't want to, and that it was a mistake, and that it was hurting them by doing the wrong thing to try to mitigate harm, does not change that. I was still complicit. I still did harm, as every one of us did, and will do.

You cannot work in the system and not harm. You cannot work in the system and care and not make mistakes that will hurt someone you care about. We all are part of the system, it does not matter how much we choose to be there in order to protect.

And it is so easy for that compilance to turn into being about you, what is protecting you. It's what's keeping you employed. You need a job, you need to be here. It's so easy for compliance to become a habit. You need to do these things they're the right thing to do, they're what you always are doing. With regular professional development teaching more and more abusive techniques and coworkers treating them as normal the pressure does not stop as soon as you get a job. Even if you meant to support and started there supporting, now you're continuinually being trained into the necessity of fixing. It's so easy to lose yourself into the system that you were trying to bend to protection, as it breaks you and tears you down, depending the way the cracks form.

I will never regret working in the school system. It broke me in ways that nothing else did, and I will still never regret it. Because I absolutely think it was worth it even knowing the day to day triggers I struggle with, the PTSD that I do not know how to explain. It can be worth it to do things are the best we can in the moment, fighting in the imperfections of the world, while others are working on improving it. It can change people's lives and it can save people's lives.

But it's not being a savior. No number of people who's lives you can say you've changed make you a savior. You still are in the system, and that system is still broken. The system still requires compliance with it to be there, and that compliance still is compliance about humanity and personhood and our compliance for into indistuishability leading to maybe almost human but not really.

None of us are saviors, even when we're both the one who was forced through the therapies and the one who's the adult with power. We're still the adult with power who is choosing to comply for the hope to do what we can. We might choose to fight through mitigation and saving one single person's life, and that life is worth so very much. We all deserve someone who tells us we can live.

But the cost is still there. You have to recognize the cost or how can you save that life. Because if you don't that cost is weight that is there still whether or not you believe it acknoweldge it it still does things it still hurts it still causes pain.

I have the names of students who told me they didn't think they'd be alive if it weren't for me in my head. They're names I always remember. They're things I have to hold on to because of that pain that I went through. Those lives are worth every moment of being there. And it cost. It cost me and it cost them. Because I was working in a system that demands compliance to exist and as much as I had abnormally strong power to bend that, it was bending, not breaking.

I was able to make most of that pain go onto myself and what that did to me is long term trauma. The cost is immense. That cost exists. I was not able to mke it all go onto me. I know the names of the students who hurt because of things I didn't do. Some of those same students were people who I don't think I could have done life changing things for them without waiting there, and that hurts too. It still is a cost that both them and I will have to live with.

It's power and hurt and pain and trauma and the best option that existed in the moment and trauma of those students still exists. The system is a system that we live in and we work in and we aren't more powerful than that system, we can't break out and be that "good one". We are not that all powerful one who is able to somehow fix everyone and everything despite the system. We do not need to be fixed. It's power and hurt and pain and trauma and trying to survive the best we can.

Words? This is words, but not everything is

Whether I'm seeing old friends or meeting new people for the first time, when I do this with my AAC the question of time is always there.

Talking moves fast. People are so quick to just say things and move on. They don't realize the time it takes to type this sentence. They don't realize the time it takes to realize what I might be wanting to type.

Time is relevant time is important time is everything and always something that will be part of whether or not I'm able to be involved and included.

But time and choice and communication is complex.

People will ask me how to keep up with a conversation with AAC because of how much slower it is. Most frequently, my answer is, am I even gonna type anything?

Because is that the right way to communicate. It's great and important, and its slow and takes effort.

What about the handflaps and the excitement. What about the pointing. What about the making noises that aren't words but don't have to be. What about any of things.

Because yeah, I type. And I type fast. And I will write up responses for a conversation ahead of time that wil mean that people will end up complimenting me because why did nobody else think of that it made it so much easier for us to move along with someone writing up their ideas ahead of time.

(Sometimes we have the advantage of actually thinking to take the time when we need it. Sometimes we have the advantage of knowing to stop and think when we can, because we have to, when others aren't used to it. Sometimes we have the advantage of knowing how to prepare because we've done it before and we're the ones sharing that this can be done and will make this easier to people who we've not realized hadn't recognized this. It is complicated. It is always complicated.)

I type. And I don't need to always type. I don't need to type when something else is faster. I don't need to type when I have another option. I don't need to type when something else is more natural. I don't need to type if I don't want to. I don't need to always do the same thing.

Sometimes people will start learning to use an AAC method and focus on it, get stuck on it, rather than the more general communication. How do you have people listen, and communicate, and pay attenion, and include you? The focus doesn't need to be one app, one device, one method. There is the question, the idea - how works for you and them and your relationship and getting ideas across and being understood to each other. What's comfortable here, now, with these people, in this situation, in this moment. It's not about an AAC app, its about your communication.

So sometimes, its just what is your natural instinctual reply? When will you be handflapping or bouncing or pointing or running over and picking something up? When will you be trying to get something across without words. When will words be what you want to use? When is what you want and think and do, automatically, the thing that makes sense? Does it? Is it actually what is working for you? Because you don't need to just throw out all the other communication methods that work with these people in this time in this place.

Not everything is words, not everything needs to be words, not everything should be words. Our words are powerful, and our words are ones we use when we want to, and our words are ones we use how we want to. But our words aren't the only communication method that exists.

And truthfully, when it comes to how people listen. They listen better to me, when its not only using my high tech AAC, as much as I will have it with me literally always, and as much as it is part of me. Me bouncing and squeaking and pointing and handflapping and then being oh let me type this out so you can understand my thoughts, is the me that is there and their friend, not a person who is behind a screen without emotions. The me who when you give an answer signs SAME very strongly will get a stronger reply than the me who tries to type any typed words explaining why I agree, because there is no way to explain the importance of agreement it that can explain the intensity of importance. The me who uses words when I need them gets listened to more, when I don't always use them, because I'm faster in other ways, but more so because I'm naturally me and all of the me and a variety of the communication methods are there. I just let myself be, and be fast, when fast is appropriate, and slow when slow is what makes sense.

My words are the words I use when I choose, and how I choose. I don't have to use them always. I can use them when I want and how I want.

Everyone else is fast, and I can't keep up, I never can keep up. No matter how much they try to pause and give me time, its helpful, its relevant, it makes me feel valued, and I'll still recognize the ways I'm feeling slow.

But what speed I'm moving at when I'm responding and how I'm responding can vary and I can be there as I can when I can how I can. I can sometimes be silent and sometimes only be able to reply to a few people and sometimes react quickly in way that aren't words. It can vary. I don't have to make myself try to always do the same thing. I can vary my speed as my speed varies, I can vary my communication as my communication varies, I can do what makes sense in the moment, I can just be me and let myself choose to put the effort where I want in the ways I want. And I can choose to be around people who listen to someone who can sometimes speak with their voice for hours nonstop about the importance of respecting children or proving correctness of programs and at other times can't formulate even their own name typing on their preferred keyboad. I can choose to be around people who let me have the time when processing words is so hard it can take an extended time to formulate even a single word reply with all the supports I have And if I choose that isn't worth the effort, and the best I can do is use signals that I am overwhelmed and cannot, will do what they can to support me as I want.

Because yeah I can use my AAC when I want and how I want, and its still not for anyone but me. It does not matter how much of the time I cannot speak coherently, I don't have to do that for any one at all, except as I want and as I need - it is not about them and it is not their choice and if I wanted to just turn and walk away and have that be the statement of nope not now, then great, that's allowed too. Because its not about allowed its not this is allowed and this isn't.

It's I can do what is right for me, whatever that is, because I am a person.
And I can have relationships with people who treat me as a person.
And its not about one method of communcation, its about communicating, as a person, with other people.

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.