Migraine and cure (again)

I have severe chronic migraine. I hate severity levels for everything, but given that my doctors repeat the word severe to me every appointment about my migraines in order to make me actually take myself seriously, I should actually recognize that.

Anyways. I have severe chronic migraines. The type which has gone from chronic to you have symptoms 24/7. The type that come with auras that are weird enough to have multipage long lists of symptoms. The type where your emergency room knows you as a regular patient from you showing up and saying you're there for a stroke check, you know its a migraine, but protocol demands it. The type where you're med resistant and have a doctor say that you've tried every known option, including the unusual options, beyond those which are contraindicated for your case. The type which has you see your neurologist frequently enough to know his favorite breed of dogs and taste in video games because you get to know him as a person, from being there so frequently.

And I'm used to it. This is how my life is. This is how I know how to exist. This is my norm. This doesn't mean I won't keep trying to find better treatments for myself, or work on more coping skills, or build better structures into my life. But it means that my baseline is severe chronic migraine. It means my expectation is that you never know if you'll randomly have half your body go paralysed. It means I won't go anywhere without carrying a backpack full of different tools in case I need them. It means this is how I know how to live, not only in that I have the skills to live like this because I have to, but that this is how I expect to live.

So when I found a medication that actually worked? Something that wouldn't be considered a med failure, even if it was something worth taking because it did enough that I didn't want to drop it out of my treatment plan. I didn't respond with excitement or even with fear that it was a fluke and would stop working in a month or two. I responded with a breakdown of I didn't understand how to exist.

CGRP antogonists for me don't reduce the number of migraines I get, but reduce severity enough to be considered a medication "success". Before aimovig came out we'd been waiting because I had run out of options. With aimovig, I had reduction in severity enough to have a meaningful difference in day-to-day life. My peak severity was no lower, but my average was and that was something I didn't know what it was like. I'd been trying meds for years. For something like a decade. And then something actually worked.

I fell apart.

I didn't know who I was. I didn't know how to compensate for the number of things I never got a chance to learn because people would assume that I would pick it up and I was too busy trying to survive. I didn't know how to navigate with the sudden change.

Sure it was positive. Sure it was something I wanted.

I still fell apart.

It's not just that positive change is still stressful. It's not just that positive change is still hard. It's that when I say I wouldn't take a cure for migraine if it was given to me, I mean it. Because I literally don't know who I am without migraine. Would I wouldn't I take a cure? I seriously don't know. It's not a thing I'd seek out as much as I'll try to navigate improving functioning as I am. But I can tell you for certain that I literally don't know who I would be.

Migraine is part of the essense of who I am. It's pain and its overwhelming and its my brain making up the most bizarre of symptoms sometimes. But its part of what makes me me. Because its been part of who I am. Because its part of who I have been. Because how you grow up and who you are and the experiences you have can't be just separated out. It can't be this isn't part of the essence of me.

I have severe chronic migraine. That means it has to be part of me. Because its so intertwined with every moment of every aspect of every thing I do. I can't make decisions without taking into account how I'm doing in the moment and how I might be doing in the future and what might trigger me and what sorts of ways might have me flare without me knowing the trigger. I can't eat or drink or sleep or lie down or stand up or sit in chairs or walk or choose my wheelchair instead of walking or speak or choose high tech AAC or choose low tech AAC or literally anything people consider the basics of life, without it constantly having a background process of migraine now, migraine future, migraine potential. It's always there. It's always part of me.

It doesn't have to be something I like to be essential.

It doesn't have to be all positive or all awesome or something I'd choose to be essential.

It just is. It just is because I am this way. Because I have no choice about being this way. And if you stopped and changed me. It'd change who I am. It wouldn't be making me me without migraines. It'd be making me someone else. I might choose that - I'd be allowed to choose that. Some of my chronic illnesses I'd without a doubt choose that. Migraine I literally don't know because its the one which is the most entwined with self the most I can't imagine existinig in any other way, the most this is my brain. This is my bodymind. This is who I am.

People talk about cure like its all or nothing. Like its you want to be cured or you don't want treated. Like you must want a cure or you don't think things are disabling.

It's more complicated than that.

It has to be more complicated than that.

You can't live things that are all encompasing changing every sense of your self and being and life and making it part of every moment of every day and make something as complicated as changing that or removing that be simple. It just can't be. That's my life and self and being and everything.

People assume that I would trivially want cured of my migraines. They can't imagine the idea of falling apart and spending extensive time in therapy working on the how disorienting it is to have a treatment that works when working is still having 24/7 migraine symptoms, just less severe. Because that's what it is, disorienting. It's great to find things that work. And its disorienting. It's confusing and overwhelming and so much more than just this makes me feel better.

Because when this makes me feel better comes at the cost of I don't know who I am that's a big cost. It's a cost I'll sure choose sometimes and spend that time finding myself. But its a cost and a big one.

Every time I figure out big things that have big treatments and others are like that's so exciting. It's like, okay, but it's also disorienting and scary and so very much more than just exciting.

And it's not that I don't want treatment. It's that I'm not some abled person trapped in a disabled bodymind. I'm a disabled person with a disabled bodymind. I have all sorts of messy relationships with myself and the world. I am terrified of existing in a hostile world. I'm exhausted by the pain. I'm overwhelmed by the confusion and neurological nonsense. I'm scared of not being able to trust my body. And this is still me.

I'm still me, not some person trapped here. I'm still me. Who has this body and this mind and this bodymind. I'm still me who has the essense of self intertwined with my disabilities, including ones that others might not guess.

Because its not just there's This Thing which is part of self and That Thing which can be separated. You can't split it up like that. You can't tell us what our lives are.

I've heard too many times that migraine is something you could just split out of a person and cure as some kind of gotcha in discussions about cure.

But no. It's not like that for me. Migraine is part of me. Migraine is part of my life. I exist no matter how overwhelming the world is and no matter how overwhelming my bodymind is. I exist.

Outline of what to write up for notes for an AAC evaluation

I've been recently asked for what I wrote up and shared for my AAC evaluation. The answer is a lot. I went through every last detail I thought possibly might be relevant and wrote it down ahead of time so that it was already available.

I find this both a really helpful method of preparing for an appointment in general because it makes me think about things ahead of time, and for more stressful appointments having things written out and printed out makes it a lot more accessible communication wise, because I can just pass over the documents and point out answers rather than need to remember in the moment things to say. I can spend days or weeks or months preparing what needed written up ahead of time. I can give myself all the preparation time I need. For an AAC evaluation I quite literally spent months preparing the relevant document. Giving myself that time let me put together what was best for me.

I've found as long as its well organized a lot of doctors appreciate this - but that the organization really matters, because they want to be able to skim, flip, and get an answer fast, not have to read all of 10 pages or whatever that was written. If they only end up reading less than a page of 25 pages that was written it might still be incredibly valuable, but it comes down to knowing the right page across those 25 pages.

That said I put together my outline for what to have for notes to prepare for an AAC evaluation to have available for an SLP. Each of these sections was well separated, with clear headers, even in subsections splitting things up smaller than these that are so specific to my situation that its not helpful to share. Lists are also frequently helpful.

My outline of what to write up for an AAC Evaluation

• Goals
• General communication Goals
• Priorities in an Evaluation
• Priorities in a Communication System
• What is not a goal for me
• About Me
• General about me, who am I, how do I spend my time, what do I like to do
• What is my experience with AAC
• What is my current set of disability supports
• About My Communication
• History by age
• Description of current communication
• Unreliable, Intermittent, Insufficient, Exhaustive Speech
• Definitions of Each of These
• Descriptions of how each of these describe me
• Example situations for each of these
• Overall summary of my current speech
• How do I communicate if I don't use speech
• Why do I use thing
• When do I use thing
• What works well
• What doesn't work well
• Relevant medical history
• Diagnoses that are directly associated with communication and how each are associated
• Diagnoses that are associated with what I can use for AAC and how each are associated
• Other medical associated traits that aren't Diagnosis that are relevant for them to take into account
• About my Current AAC System
• Overview of system
• What App(s) I use
• Preferred layouts, etc
• What access methods I use
• What do I like about my current system
• What doesn't work for me about my current system
• What issues am I having with my current system?
• What sorts of things are missing from my current system?
• How is this limiting my communication?
• Including specific examples
• What do I want in a system?
• Why is the above information leading me to think I need something different?
• What is the above information leading me to think I need?
• What do I need for alternative access and why?
• When do I need and/or otherwise use alternative access?
• How do I use alternative access? How does it fit into my life?
• Why do I use alternative access?
• What have I tried and why don't those work?
• What works and what doesn't about the best I have found so far?
• Features I need in a system
• Software
• Hardware
• Include details like why might these features be particularly important to me if not immediately apparent
• Summary of what I want to try

Specific notes I want to call out are:

• What things aren't priorities - while this can be short and it might not even be relevant - if there are things you know aren't things that matter to you, write it down. I've specifically had this be a particularly helpful section because of people being like oh, this thing I'd assume is a priority just isn't for you because you have different goals than I would.
• Defining intermittent/insufficient/unreliable/exhausive speech - even with giving examples, even with giving descriptions, giving definitions of the terms that are relevant to you is actually really helpful and makes a huge difference. It not only makes it easier to communicate with them, it helps with being taken more seriously when you're someone who as access to speech sometimes and not always.
• What have you tried and why doesn't it work - having this written out literally had my SLP already making suggestions about what I needed in the first skim through of this document. Being able to say this has already been tried is incredibly important when you're looking at insurance funding, but its also important for figuring out what to trial.
• Just plain, what do you want - so many people get tied up in needs, what do you want, what do you like do to, the fact that you're human and have preferences. You're allowed to prioritize a waterproof device because you like to spend time near the water. You're allowed to say you like high energy dogs and a device has gotta be able to sustain that. You're human. Be human.

Speech in Medical Situations is lifesaving. Speech in medical situations is dangerous.

Things that are true:

1. Just because I can speak about medical topics doesn't mean I can say anything else at all
2. Being able to use speech even this much will get me treated so much better by so many people
3. It's so incredibly dangerous to have people assume that I can use speech in general in any way related to how I can speak about medical topics
4. You sure should question what would make someone capable of explaining the endocrine system in enough detail that you're like I don't even know what you're talking about because even before the "able to do that but not able to reply to questions at the 'what's your name?' complexity the capability to do this came from somewhere and the necessity to do this that means it happens sure says a lot about a person
5. Emergency speech is dangerous. That's something I so so so relate to. But topic based speech is also dangerous.

It's not just "I can talk about things I like" or "I can talk about things that are low stress" or anything like that. Because it's sure stressful to explain adrenal crises to people who are repeatedly being 'but why do you have an endocrinologist you don't have diabetes' and I sure wish my body didn't require this sort of management.

But it does.

And that includes how my speech works. In part because of ways I grew up and the scripts I was taught. In part because of that being how my bodymind works as a whole. Just because that's how it is for me and that not being understandable doesn't change it is real.

I have automatic speech with complex discussions about temporal lobe epilepsy (despite not being epileptic, this isn't "if it's about my diagnoses" it's more complicated than that).

I don't have automatic speech that can help my basic needs get met.

Automatic speech is complicated and scary and not nearly as good a thing as people make it out as. It's also a thing which will in this situation mean I manage to trigger 'hey treating you like a colleague'

Because that's the only speech I have reliably.

Every. Use. Of my speech including answering questions like "what's your birthday?" To trying to talk about interests. From trying to navigate safety to trying to have fun. From trying to do what I want to trying to do what I need. Except. Complex discussions where I am explaining medical topics in depth using highly technical terms. Hits unreliable speech.

I'll be saying nonsense that isn't true. And at the same time talking about current medical research in conversant manners completely accurately.

Sure hard to notice the rest is nonsense when a conversation about cutting edge research is the other half of what's going on with my speech.

Sure hard to keep from using speech that says random things in these contexts.

I'll have people assume I'm capable of things I'm not over and over. And that's terrifying and that's dangerous and I won't be able to tell them this either because that involves communicating better than I can.

Because spikey skills are spikey

But the spikiness is so very specific I can't even explain it in terms they can understand.

Don't have any kind of good enough synchronous communication for that. The explaining my own access needs isn't a thing that I can reliably explain. Even with my AAC. Have been putting long hours into improving my ability to do this and it's still a challenge. Sure am assumed to be able to do that.

I don't know how to get across to anyone what I mean by the dichotomy of it being so protective and so dangerous to have my only reliable speech be highly technical medical topics. And automatic.

In part because I don't feel like I can get across to so many people what this kind of conversation is at all.

It's the ones where I'm not fighting to keep from using jargon so people just look at me like I have no clue what half of what you just said was. After telling me how much they relate and try to purposely talk to doctors like they know what they're talking about. I don't do it purposely.

Purposely is a strategy. It's a good one. I'm not talking about a strategy.

I just speak like this. I don't know how not to.

And it's dangerous.

Because then you assume I Can Speak.

And even in medical context sure I can explain in depth how this list of symptoms is signs of these complications.
Can't use speech to report the symptoms whether or not I'm directly asked.

It doesn't make sense to people when I explain how I will have discussions with doctors about gluamate and potassium and then similarly will report that I have no migraines. (I have med resistant chronic migraine. I have diagnosis of intractable migraine. I am on SSI for migraine this is enough of a nonsense statement to be recognized as a nonsense statement. It's also a nonsense statement I've actually made in a medical setting before.)

What I can do is so specific and so treated as incredibly unusually skilled.

Can do this thing that gets me treated as more human.

And it's the only thing I can do. Still can't follow through to getting my needs met. And people still assume they are. Since why would I let them not be getting met.

Don't have enough supports for that. Can't get the supports. Supports are for people who need them. Not someone who is as capable as me.

But I will be treated as so much more human and that is life or death too.

It's safety and being safety makes it wedged further and further into my brain.

It's dangerous and danger makes me want to get across to anyone how very dangerous it can be.

But I'm just. Once again.
Told that spikey skills are normal and not have it seen that my disabilities go for extremes here too just like everywhere else.

Just see how far you can get between when you need the most and the least support or between what people see as those two states. How extreme are your extremes. Try to make everything be extreme. That's my bodymind and it's tiring how not understood that is.

Medical situations are so different than anywhere else they're understood to be harder for speech for some people. They can be easier too.

And sure ask why when that's the case. The fact I have the information at all comes from somewhere. the fact I have the automatic instincts come from somewhere the fact that I am able to do this comes from somewhere. The fact I feel like I need to comes from somewhere. The fact it happens this automatically comes from somewhere. And getting that response of "oh I understand you" response when looking through my diagnosis list and medical family history list, is totally a thing that happens for real reason.

But that doesn't change that I have communication access needs. That doesn't make it affirming to talk about how much other people need things that I don't in front of me when I need those things and I can't ask for them because you're moving too fast for me to type. That doesn't make it safe to argue with me that I don't need a support person. That doesn't make it acceptable to label physical medical responses that could have sent me to the emergency room as mental health because of me not being able to communicate in the moment because of being denied those same communication supports I was saying I needed. That doesn't make it okay to say I'm One Of The Good Ones in ways that both deny the humanity of the people I care about and deny me what I need in order to make it easier to stay safe.

It's yet another form of the nobody gets help. We're too disabled and not disabled enough at the same time.

Pick whatever you want right now to dehumanize. Pick whatever you want in order to claim supports are unnecessary. Go from there. Always too disabled. Always never disabled enough. Always both at the right time.

It's dangerous and its safety. Its terrifying and its something I'll actively say is something that being able to do protects me and those I care about. It's something that scares me so very much and its something that I don't know what I'd do without. It's something that denies me so many things I need and its something that helps me in ways I don't have anything else helping me. Because its not actually one thing even for things like unreliable speech and the terror of being denied the care you need for life threatening disabilities. And at the same time, wow that is terrifying to actually give as a real life example like its not actually a big deal because that's just how life is.

It's the having unreliable, intermittent, insufficient, and exhausive speech, and this one situation and topic being reliable, won't change the intermittent, insufficient, and exhausive aspects, but between the speech trauma that taught me I gotta speak if at all possible, and the decades of scripting that (successfully! and usefully!) I was taught for medical situations I have very automatic speech that turns on and gets me stuck. It's the I'll sure end up in these situations where I'll discuss complex medical topics and not report any of my symptoms, and you'll not notice I haven't because you'll assume I could use speech to communicate and I can't yet I've once again trapped myself in using speech rather than my AAC. It's my own history making dangers more dangerous. It's my own bodymind combining in ways that make things weirder and more complicated and being more misunderstood.

Being only able to reliably speak sometimes has so many impacts no matter how much that 'sometimes' is. Being only able to reliably speak in some situation and having that be in a situation where it'll have a huge number of assumptions made about you, has so many impacts positive and negative. Being only able to reliably speak in some situation and having it so automatic to do so, is terrifying.

People don't understand speech sometimes and not other times. People don't understand speech that sometimes says what you want and other times might or might not say what you want. People don't understand the 'sometimes' and the 'maybe' and the 'okay but how about now'. People sure don't understand insufficient speech and getting acrosss only the tiniest bit of what you wanted and it being assumed to be everything.

And yet. Those all need to be taken into account. Starting from 'oh, and medical sitations are the exception. Because of course they are. That's just how it works with a bodymind like mine. It's the rest of my masking that isn't pain. It's just life.

they didn't have to touch me either

content warning: abuse in k-12 schools of both students and staff, restraint and seclusion, references to suicidal children, dehumanization

I'll say they didn't have to touch you. But they didn't have to touch me either.

I'll tell people about the nightmares I have about not being there anymore. I won't tell anyone about the nightmares of did I stay too long.

Because that's what they do to you, to me, to all of us.

When I say you are hurt and broken and working in a system where you have to hurt people and have to hurt yourself.

It feels like people still.
Still.
Underestimate and misunderstand and refuse to believe the control and abuse and brainwashing techniques applied to the adults.

It's terrifying.

They didn't need to touch you. I knew that. I knew that. I knew that. I lived that.

They also didn't have to touch you because there was just plain no reason for restraints.
Not the controlling without touch.
But the grabbing and pulling and deciding to go from restraints to the seclusion closet.

For daring to exist.

Didn't matter that what was officially signed permission was restraints and seclusion was only for when it was necessary for safety.
They'd do it whenever they wanted.

They didn't have to touch me because they'd touch you.

I haven't written this post because I don't know how to get down this horror. No matter how much I've tried. No matter how much it's been there in my head years and years and years later.

There's children restrained for crying. For not completing their work fast enough. For asking questions.

And still. Some of these restraints that replay in my head have even less justification than those. Even less than asking for help. Even less than the putting going to the bathroom on an ABA plan preventing someone from peeing when they need to.

All those are horrors I could talk about if I could ever find the words.

But a child grabbed and put into a restraint just for being there is something else beyond those horrors in a way I don't have the words even for myself.

Because when the reason for a restraint is
They don't have to touch me.
They just grab the child instead.

That's

There were so many examples of non required restraints.
And so many examples of non required restraints done in front of me in ways where they were adding blame to me. If you only did things properly then this wouldn't have happened.

But the ones where they didn't even have another fake justification.
The ones where it was paired with talking at me directly about the ways that I was causing harm.
The ones they'd talk about at lunch just to make it be there in front of me. While I didn't otherwise exist of course.

Those are some kind of horror that I don't know how to mention.

Restraints and seclusion is in general really. I don't mention it much because I don't know how to make it something that hurts that much that breaks that much where what it is matches reality.

I wasn't the kid being restrained for crying and I shouldn't be centered in these conversations. But I don't know how to say as someone who isn't centered but is affected what this is like even for me.

And I so so so. Don't know how to get anyone who hasn't lived it to understand that they knew they didn't have to touch me. They had permission to touch the children.

They didn't like what I was doing that would be taken out on the children.

I'll say I had permission to do whatever I wanted. And I did. And I bent so many of their rules so far. And I was the only one I know of in some of the schools I worked at to never participate in a restraint.

But that came with not just the door being slammed in my face so directly it actively injured my arms. It came with children being restrained for daring to show they liked me being there.

Can I actually say I never participated in a restraint when the only reason for the restraining was because of trying to control my actions.

If I wasn't there this wouldn't have happened. Was me being there actually helpful at all. Because there was so many ways they'd hurt people to get to me.

I don't regret being there and I can't. I was able to say that being there was more beneficial than harm to the children by having them directly tell me that. Sometimes with details of how many suicide attempts they've made because of the way the schools will treat them.

I do have the nightmares of whether or not those people survived after I was suddenly gone when my being there was related one of the ways they were surviving.

But I also still have the nightmares of but what if that was wrong. What if I did cause more harm by staying. What if the ways they were trying to control me meant children were abused in ways they wouldn't have been.

I tell myself I know they would have been anyways. With the restraint for crying it's not a huge step. I caused harm by being there. But that doesn't mean it was harm that outweighed all the benefits the children directly told me were more valuable.

I can't believe it.

I hurt and miss schools and want to be back.
I'm convinced my presence will destroy people because that's what has been done.

You can't have someone that moves like you. Have to destroy the world before something like that happens.

I was there and did do these things to make a difference and do know the names of people who told me they survived because of me.

And I can't tell anyone ever to do this, not only because it destroys you, because it does. But because you have to be able to help these children being destroyed in your name.

When you're the one they go to for support after getting out of seclusion. And they were only thrown in there for daring to suggest that they were looking forward to your class later that day.

It's compartmentalization all the way down to survive.

I'm broken but nobody who wasn't could have done my job. Not only because it breaks you. Not only because they go out of their way to destroy you. But because you have to be in order to actually be there for the children when taking all that abuse upon yourself with some of what they did.

I will say I threw myself between the children and what would be done to them in order to reduce it. And I did. And that's not healthy or safe or sustainable even by someone who is Oops! All compartmentalization.

Not only because they would respond with escalation.

I could prevent a lot. But not everything. And they would escalate that "not everything". That's where the restraint and seclusion just for daring to show they were happy I existed came in.

At first it was just the restraining for crying or for talking back.

But to control me it escalated.

Didn't need to touch me. Got these children who aren't human enough to matter can do whatever we want to them.

It hurts it hurts it hurts still how much is my fault when was the right time to leave what was the right balance for minimizing harm what am I supposed to do what was I supposed to do how wrong did I get it when I was trying to do the best I could with limited data

If I wasn't there I couldn't be someone who actually believes that they are human in their presence.
If I wasn't there I couldn't just plain be a person with people being disabled people together.
If I wasn't there they'd not be able to use me as a weapon.

I still don't know if I made the right call any of those moments about when to stay and when to leave

I don't think I can ever know

I will always blame myself for some of these moments
I'll always blame others for how much those moments were unnecessary

I'll never get over being used as a reward which people could earn via their ABA plan And the way they were so so proud of thinking of that and acting like it was the best call ever and the way I was struggling with not showing emotions at being told how much I should be happy and excited at such a decision being made!

I'll never be able to get over the ways that I wasn't a person and they made that so very clear but I had enough power that the ways to get to me were the children who were no better than objects in their eyes.

I don't ever know whether or not to share those stories. Because it feels like people don't get it at all.

The if you just did your job properly this wouldn't be happening.

The seeing children kicked out of the school and told they were too dangerous and needed to go to a behavioral school for meltdowns that were purposely triggered by staff grabbing and throwing around someone who had been working with me despite struggling with big emotions.

The children being taught they were inherently abusive because they wanted to go to your class. But they didn't earn it according to their ABA plan because they hadn't done their work fast enough because it was material they were struggling with. Gotta instead spend the hour instilling into their brain how they're abusive.

The trying to give these students a chance.

The weight you can't explain when you find out even one of the people who had been asking for so much help trying to manage to get out got out of the system and had moved to the city, got an apartment, and was in college.

Because every one person is one where it's a repeated question of was it better for me to be there for how long.

Because they break you like that.

Because every single choice hurts. Including choosing not to talk back this time.

They break you like that.
Without ever putting a hand on you.

They didn't need to touch the students either really. To do this but it's your fault. The students just weren't people enough to have that ever even considered.

They didn't ever need to touch me.
Because they hurt you instead.

And I can never get over that.

Echolinkia

My communication is in blog posts and webcomics. It's in references and words of other. But its not in some sort of recognized quotes.

My communication is instead having people tell me that I have a link for everything.

Because that's how it works. I don't know how to say these ideas myself. They're important and they are such huge things I need to share. And I can't put it into words. Words are too hard.

Make me think of it. Got a link for that.

Because my communication is in those links and references. It's in the words they say and who is saying it and how they say it and what is linked when. It's in the direct reference to the immediate things but the indirect as well.

It's in all of what is being said there.

And then once again I'm told I have a link for everything and how much they learn from what I share.

It's not about the ideas of others. Because its more than that. It's not saying "oh this is important" because its saying, I see you talking about ABA trauma so I'm referencing someone who you can read the ABA trauma in their words even when they don't mention it directly. It's there and its relevant and so is so much more.

There might be three or four or five different posts to get across the direct point I want to make but which one I pick in this moment is important.

There's not just one post for everything you see. Because its communicating in so much more complex of references for that. The multilayered refrences. The when do I pick a blog post and when do I pick xkcd and when do I pick something more formally written (lol that's rare because even when the ideas are what i want to say, its not the feel).

Because it's the feels and saying so much more than what just saying the same basic idea that is wanted to be said. It's the importance of how we commnicate as ourselves. It's saying things the way we say things.

It's the echolinkia that alyssa started to call this when I say that this is how I communicate.

It's having folders of posts saved so I can grab a link to reference in any moment, and still having the phrases to search to pull up piles of others, because those phrases mean things and those posts are important and it is so much more to say in posts than in phrases I hope people understand the reference of or trying to write out why it matters.

It's writing blog posts so I can link them myself later in this exact same manner, because even linking to myself feels different than writing those same words and that being why I'm writing this now.

Some of my AAC is hyperlinks and I so very wish I had one that said what I was trying to say right now instead of bits and pieces that felt incomplete and messy and like it would just confuse people more because having to write this out feels like I'm missing so very much of what communication is. Which is in many ways the point. Communication is complicated even when its sending links around. It's still how I communicate.

rare disability is loneliness

rare disability is lonliness

it is the being in a crowd of chronic illness and feeling misunderstood. it is the everyone talking about experiences with doctors and those being so completely true, and yet, it not representing nearly all of life. it is the just wishing to feel like there is a way to exist without constant explaining or constant erasure.

rare disability is loneliness

it is the being left out, being ignored. it is the being asked you're not being serious are you, that's not really how things work. its the being told that other topics are more relevant since they affect more people. it is the people saying that of course everything you talk about affects everyone why do you act like you have any sort of disability at all. it is the being so very alone that there is nobody else to speak up.

rare disability is loneliness

it is the everyone else getting replies, and seeing your things being left alone. it is the being told how not relatable you are. to watch everyone else get reassured. to have everyone else get shared stories of what is hard and what makes things easier. to not even get a simple 'that sounds tough, is there anything that'd help' because instead you get 'wow that's weird'.

rare disability is loneliness

it is being told you can't talk about these things it is too hard to hear about. it is the being told that your life is traumatic to hear about and others shouldn't have to deal with that. it is being told your body is broken your mind is a mess and nobody else should have to face your existance. it is still being alone.

rare disability is loneliness

it is the having one person message you saying i have never before found someone wild on the internet with this same diagnosis.

it is the message of i am so very glad to not be alone and at the same time feel so bad for you to need to deal with this as well.

it is the sharing, because you have to share. because sometimes you might maybe not be alone.

and it is still.
so very lonely.
to be two in a crowd rather than one.

The ChatGPT of my brain (unreliable speech)

You ask me a question. I give a reply.

It sounds like a reply you'd expect to that question. The sentence strucure is right. The words mostly make sense - only a few odd ones but that is to be expected from someone who randomly replaces any noun wih dishwasher at any given moment without noicing. The words all make sense to follow each other.

It has nothing to do with whether or not I wanted to answer that.

Oh, it might be right. It even is a decent percentage of the time. That's the thing about the sentence generator being trained on data that includes statements I need to be able to make - some of what comes out in randomly comes out completely accurate.

It's also in many ways more dangerous for me for it to be accurate a decent percentage of the time but not always, since now you assume it always is.

The ChatGPT of my brain was trained by the behavioralism of my childhood. The I'm sure good at making things automatically sound like sentences without even recognizing speech is happening, not to mention having any clue what words are coming out, since making sentences that sound good is what the speech thing does, is real good at doing sentence generation. That says sentences. Where the data is complete nonsense and that's missed because people expect them to be sentences that sound good.

My unreliable speech is dangerous in part because it's fluent. My emergency speech is dangerous when its the speech that shows up because I've been trained speech is always supposed to show up. The fluency does not mean it says what I intend.

An LLM is far more likely to provide a meaningful response than my speech since its training data was not that of behavioralist trauma, and there is no way that LLM is something that can explain my wants and needs, not to mention the rest of communicative functions. Yet, LLMs get talked about how much they make up, and speech isn't seen as able to work in a similar fashion.

My speech does. My speech strings things together that sound good. My speech says things without regard to what I mean. My speech matches the rules, and doesn't match the meanings.

I have a sentence maker in my brain that makes sentences that look right because it knows how to make sentences. It's very good at making sentnces. That's what it does.

You tell me to make a sentence and for sure I can do that.

You ask me a question and for sure you'll get a response.

But that response sure might be something like this food I'm anaphylactic to is my favorite food and I want you to get some for me. That's a sentence that involves the topic you asked about that matches the patterns of Being A Sentence! (Please don't feed me things that would give me anaphylaxis because my speech Says Sentences.)

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.

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.