Wednesday, June 24, 2020

Why don't you ask them?

I interact with a lot of parents of disabled children, in a variety of settings. I think the most common question I am asked is approximately "so you have this same disability as my kid, what does my kid need?"

Why don't you ask them?

I don't know what your kid needs. I am glad! So glad you are asking me, looking for adults like me, who have similar disabilities to your child, to learn from. I think that can help so much with learning. But I don't know. I don't know the things that your child loves, the passions your child has, the thoughts your child thinks. I can't know them. I'm not your child.

I can give advice. I can tell you We Are Like Your Child. I can tell you patterns exist, and that you should pay attention to patterns. I can talk to you. I can tell you things to read. I can help you find ways to learn how to listen to your child, and help you find ways to communicate with your child.

But I am not your child, and I cannot know what your child is thinking.

And similarly, you are not your child, and you cannot know what your child is thinking. You cannot know what your child can understand. Have you asked? These questions you are bringing to me, have you brought them to your child, and heard their thoughts, instead of just hearing mine, as useful as hearing the thoughts of a disabled adult is? Because the decisions of your child are what matter here. Your child has autonomy. Your child needs autonomy.

Sometimes, that's the things I need to say, is your child is a child and that means your child will grow up. Sometimes that's the things I need to say, is that you are being told disability is scary, and not, look, your child is a person we need the ability to make decisions over what we want to do, how we want to do it. We need to be able to rebel. We need to be able to enjoy things.

Sometimes that's the things I need to say, is simply. Have you asked? Because of being told, over and over, that you need to turn to professionals, and eventually that meaning you are learning you can ask me instead. But not realizing you can simply ask your child, when it's your child's life that you are controlling.

So have you?

Have you asked? Why don't you?

"But they don't understand"

You. Don't. Know.

You don't know what your child is thinking. You don't know what your child knows. You don't know what your child can do and what your child wants to do and what your child has never been given a way to do, because of people never saying it is available, and what people have been making therapy therapy therapy therapy and never letting there be a way to live instead of try to have us get fixed. You don't know.

Do you know they understand? No. Do you know they don't? No. You have absolutely no reason to know they don't. So find a way that communicates with them. Pay attention. Provide options. Try things.

Do they need more time to process? Do they need pictures? Do they need things provided in multiple ways at once? Do they need reduction of sensory input? Do they need things the same, or different, or anything, when being asked questions? How works? I know what works for me, I don't know what works for others. But assuming it works for you, doesn't mean it works for your child, and because what works for you doesn't work for your child, doesn't mean your child doesn't understand. It means that particular option doesn't work.

Or you might tell me they can't answer you. But answering doesn't need to be in words.

Have you provided any sort of AAC system that isn't their body language anyways though? Have you looked into what works, and given time to learn, and treated it as communication and not as behavior to be learned?

Have you recognized body language as communication?

You're telling me echolalia and stims aren't communication. Bah. Are you paying attention? Sure, communication is multi-level and not always direct and when you're expecting the words to mean what they say, you aren't getting that. But are you paying attention to when they're said, why they're said, how they're said? Are you paying attention?

Are you listening to the communication that is your child's instead of expecting your child to match your communication to make it easier for you?

You ask me, what you need to do for your child, but are you asking your child, are you asking your child in your child's language, are you listening to your child's language in response, are you realizing not everyone needs to say your language always, in the first place?

I can help.

You should be asking questions. Your child should meet us. Your should read things written. Things by disabled adults are so so helpful, and you, yes you, need autistic friends. But your child needs asked too.

Ask. Listen.

To us. And to your child.

Thursday, March 19, 2020

a case against modeling

But modeling is the Best Practice for teaching AAC you say. It's how you do it. It's the best way we know to help people learn to communicate.

I say no. Modeling isn't the best way to teach AAC. The best way to teach AAC is simply communicating.

There's a whole bunch out there about modeling, what is modeling, how you should model, what are the best ways to model, how to be more efficient with modeling, but what it comes down to is that it always is being unnatural. You aren't naturally communicating. You aren't using words like you usually do. You aren't putting together sounds, putting together words, playing with language, using language, using sentences, the way you usually do. It's not talking about things you talk about, the world around you, what people like, reading books together. It's not how we talk.

How people model, how people talk about modeling, is like you can only show one button at a time. We don't learn only one word at a time, we learn relationships between words, we learn words and how they interact with each other. We learn words that pile upon another, playing with each other. We learn how some words fit with each other, and others don't, at the same time as learning words. We learn language. Because, we hear these things. We have them offered to us. They are used around us. They are used.

How people model is like you have to go out of your way to find ways to use these words. The important words. The core words. The words you need to make sure people know. Like it matters what people learn first. The words we learn can be the words we learn. We can communicate in multiple ways. Pay attention to the communication. But, going out of the way, isn't natural, it doesn't make those words make sense, they don't fit.

How people model is like, you need to think, and plan, and use numbers, and it these numbers and counting, and looking at the data just about makes it into trials. It makes communication into behavior.

My communication isn't behavior. My AAC use isn't behavior. My life isnt a series of behaviors.

You want to teach AAC?

What about just talking?

What about simply, using AAC?

What about simply, communication being, having AAC, and using AAC, and that being your default method of communication. Type, buttons, learn them, know them. You want to ask for food, use it. You want to talk about the baby bird, use them. You want to read a book, use it. You want to play with sounds together, joyfully playing with the fact that noises are noises and you can make specific noises with specific letters? Use it. Just, use AAC, however it gets used. Whether that's talking about dogs and cats, or about advanced mathematics, or both.

This exposes AAC. This shows language. This shows buttons. This is natural, you using it when and how you would be. This interaction. This is interactive. This isn't sitting there using AAC like it is some thing you would never want to use, but I guess you need to push these buttons to show that they exist (because seriously "I need to say all the words and press one" WOW that is saying speech is better, and like there is something wrong with me for using AAC for all of them, not like I'd want to interact with someone doing that to me. I would choose not to interact with someone doing that to me.) This is communication.

Modeling isn't communication.

Using AAC. Communicating with AAC, is letting someone communicate back, however they choose, is listening, is responding, is paying attention and learning someone else's language, as well as learning and communicating with an AAC app, but the important central part of this is that it's communicating. It's an interaction between multiple people. It's an interaction.

You want to teach AAC?

Use it

Tuesday, February 18, 2020

you wouldn't claim I don't know the words

You don't say I don't know words, that I don't know meaning, when I drop them. When my natural speech patterns (typing patterns really, we shouldn't call all word patterns, all word choice, speech patterns). When my natural word choice doesn't include pronouns in many situations, because they are just unnecessary. You know what I mean.

You don't say I don't know words, when I talk to people, about pro-drop and aux-drop. I know the terms. That makes it acceptable.

(That makes it acceptable because I was taught the words. Because I'm an adult. Who was treated like I could learn.)

You don't say I only know nouns, because my choice of how to say "I am hungry" is "food?"

but I mean, why would you say anything else? It says all you need to.

And meaningfully. You don't say you. Yourself. Don't know these words, when you do it yourself. I pretty much guarantee, you yourself, are dropping words from so called "proper english" what you claim is proper, and what you are trying to force upon people, because "they don't don't know the words" or "how do I know they know the words" or any other thing claiming people don't know something because they choose not to use it, just because they are disabled. Because what you use isn't what we are supposed to use.

it's okay for me. Because I know how to talk about what I'm doing. Because I was given the chance to learn which is being denied from others.

You don't claim I don't know the words.

Except, if you met me, and I was using my symbol based AAC, would you claim it then?

(I mean no, because when I'm using it I feel forced to use them all. I feel forced to not use natural language. I don't feel like it is truly a representation of how thoughts flow. It is helpful to me, but with how I have been treated with picture cards and with how picture cards and symbol based AAC is treated in general, I don't know how to make it natural language. I simply don't know.)

Would you claim it though? If I were to use my symbols like I do my typing? Or even, if you saw my typing AAC, would then, it be me not knowing words. Would I be instead of someone on the other side of a keyboard, someone who doesn't know things, because I would be now supposed to speak however you want, to prove myself, rather than to communicate.

Because language is meant to communicate. But treating it like this, it's not communication.

"How do I know if they know core words"

Do you know what they are saying? Are they successfully communicating? Is that the goal?

Or is proving their knowledge of core words the goal?

Is the goal getting across an idea?

Or the goal pretending to be normal


You are trying to make us into robots. Claiming it is the only way speech works. And it has taken effort to learn that I don't have to do that. But still, you wouldn't claim that I don't know these words, when I'm choosing now not to use them. And others, who have never been given the opportunities I have, you are claiming do not understand.

There is no one way to speak.

Sunday, October 27, 2019

just because (some of) my stimming is socially acceptable doesn't mean its not stimming

My diagnostic report claimed that I didn't stim at all.

People who know me know how hilariously inaccurate a statement this is. Stimming is my default state of being.

I handflap. I climb on things. I jump. I clap. I make noises. My hands move. My fingers move. When stopping and thinking while writing I'll just as often tried to have turned upside somehow.

I have never been able to exist without the input of pressure, of things wrapping around me. Blankets, compression, outside things. I extend this to wearing cloaks because I need the input of blankets.

I have stim toys, but I don't need them. I didn't have them before I was diagnosed. I fiddle with things. I fidget. From my medical alert bracelet to the pins on my tablet, through what walls exist around me, I understand the world through stimming with my hands. And am always doing so.

I have self-injurious stims. I control my overload, my dissociation, my ability to keep track of the world with stims of all sorts.

And people see this. And people know this about me.

And I am claimed to not stim by professionals. Not just the diagnostic report, by others I've seen. I'm claimed to not stim by others who go you aren't like my child.

Because they don't pay attention to those. They don't see what they don't pay attention to.

They do see the socially acceptable stims. And they say those aren't stims. And then I don't stim at all in their minds.

I do yarn-crafts. I nalbind. I crochet. Repetitive motions. Hands doing things. Feeling the yarn and how it moves. It makes things. It's also a stim. I make things with yarn because I need my hands moving. Because without my hands moving I don't know what is going on in the word. Because when I'm not I get so much more overwhelmed, so much more overloaded, so much more confused. I make things with yarn because it helps me make sense in the world, and in the end I have things with yarn. That's a bonus.

But that can't be a stim. It's something neurotypicals do. It's a craft. It's for fun.

My understanding is dependent on my motions. But my motions don't count if its anything someone else does.

Even when I've found its easier to just pick up my yarn and have it there than to get so overwhelmed I. just. stop.

I get less overwhelmed this way. I get less overloaded.

But its a socially acceptable stim, so you don't see it.

You don't see my typing, how I need to type, because I need my hands to keep moving. The ways that I multitask and type things completely unrelated in conversations because it makes me remember better, makes me understand better. That's just me not paying attention. That's me being a lazy millennial. Not so socially acceptable, but denied still.

You don't see that petting animals, that having them with me, isn't just emotional, that without the feel of the fur, without the beat of the heart, I can't regulate myself. That I am going to go to them first always, because I mean of course I will, but that something as simple as resting my hand on the side of a dog lying next to me will give me necessary sensory feedback. Not just I like dogs.

You don't see these things, because everyone does. Because its not stimming when everyone does. Because everyone stims. But you call it abnormal for me, because I'm autistic.

And also, you deny it for me, because you want to deny I'm autistic, because I'm not like those people. Because I'm an adult. Because I'm typing this. Because anything you can find to deny me is a thing to deny me.

And I'm autistic, and I have my stims and I love my stims. And I know they're there. And I also know I have stims that are seen as so completely normal that they are overlooked, from things I do with tools, like my yarn, to with just my body - pacing, so many ways of showing excitement (seriously how often do you see neurotypicals handflap when excited, its so often, its just pathologized for us), bodies move because they move, in ways they move.

I know I have my stims. Things you want to remove and things you don't, things you call autistic and things you don't, things you deny from me and things you don't. Admitting them makes it harder to "not like my child". Seeing me flap and climb and jump off of chairs in the middle of the college campus lounge while I was going to school there, makes it harder to say that I'm just someone going to college, not someone who doesn't move like that - because I'm both, because we can be both.

So its denied, its picking the moments I use socially acceptable stims and saying that's all.

The reality is you stim too.

And stimming is a wonderful thing.

Friday, October 18, 2019

you claim those exist


Yeah, you claim those ever exist.

I'm told they're for "people like me", given as reasons you don't need to make spaces accessible, yelled at for taking too much.

You claim they exist.

Or I mean, I can get accommodated, sometimes, rarely. But only for some labels, only if I talk the right way, only if you see me the right way, and even then I'm more likely to have things promised and never appear.  I can get someone to recognize my disability, to not immediately treat me as it's a personal failing, if I make it entirely about them and not about me.

I'm autistic.

What, you think I could have someone care?

You tell people so often you need to accommodate us, you show all the inspo porn of people going out of their way to pretend to treat us like human for half a moment. You think anyone would care so much as to do something I say I need directly?

Because it doesn't happen.

It never does.

Well, unless I instead say "I have severe migraines" because I'm struggling with sensory overload but holding it together enough to say something. And I don't want to deal with the migraines that come from sensory overload either.

But if they hear the label autistic they don't care. You don't care.

I'm just supposed to do better. I'm supposed to act like you want. I'm supposed to be fixed. It's behavioral don't I know.

Even when I'm using my AAC, it's a choice if it's autism that you think, and if it's concussion if it's migraine, if it's some legitimate neurological reason I might be listened to.

Probably not, but maybe.

Probably it's too hard. Probably it's too much to think about. Probably it's but how could I expect that much.

Even when it's tell me how to get away. Or when to. Even when I'm saying I'll do everything I just need to know what to do.

It's too hard to try.

It's too hard to listen.

Its too hard to care about me.

I'm told about accommodations, have it made into blaming me, why am I not trying hard enough to make people do what I need, I just need to ask. 

No matter what I do they don't listen, but why should I need to spend more energy on trying to go anywhere than anything I would get to do.

I'm told this is for everyone.

Which just means I get to know who they think everyone is.

Monday, August 26, 2019

SLPs aren't the only choice, aren't always the best choice

I have mentioned on here before that I had abusive speech therapy as a child, though I didn't go into all of the details.

My entire life has been knowing how speech is the only option. It doesn't matter how much I communicate, it matters that I speak, and that my speech sounds right. It matters that others are comfortable with me, not my comfort. I was taught this. And no matter how much I know this is wrong when I say this, when I go to try to say something, that is what I've fallen back on, it is so deeply ingrained.

So when I got to AAC, it wasn't from SLPs. It wasn't from professionals at all. Professionals kept trying to force me into their boxes. Professionals kept trying to mold me into what they wanted. Behavioralist therapy does that. Behavioralist therapy leaves those scars. And none of that was about who I was, what I needed.

When I got to AAC, it was autistic adults sharing with me things I might need. It was AAC users helping me search and find things that might help. Professionals, every one of them, even with me explicitly saying this is something I need, would deny my need, would refuse to help, while AAC users would help me through the process of searching, evaluating, finding ways to figure out what was a good idea, finding out how to afford AAC.

Professionals are held up as all powerful, but the only thing I have gotten from professionals is pain. The only things I have gotten from the professionals is making it more difficult to communicate. The only things I have gotten is denial of my AAC needs.

And now here we are, with doctors wanting to send me to an SLP. With me using my AAC to communicate, and yet again an SLP being seen as the solution.

Nobody asks me. Nobody listens when I say I don't want to go. Nobody respects this, they just keep telling me that this is something I should do, because speech is all powerful, because lack of speech is a problem. Nobody lets this be my choice, even when they are saying it is.

SLPs are seen as how to make someone communicate, but the communication I am having isn't being listened to. The communication I had as a child, wasn't listened to, and I was abused for years, to try to make me "normal". The communication that is occurring now, saying I am not comfortable with this, isn't being listened to. SLPs are seen as too powerful, too important, too valuable, because speech is too valued, for some random disabled person's communication to be seen as meaning anything.

I have communication. I have always had communication. Respecting that communication is important, and taking power dynamics into account is necessary. The power dynamics of speech therapy is huge. The power dynamics of learning AAC doesn't have to be.

And we act like AAC is unknownable, unlearnable, impossible, without professional involvement, yet, AAC is entirely doable on your own. I never saw a professional for AAC, and I have my AAC. I have multiple AAC options. I use AAC regularly. My AAC is not somehow non existent because I never worked with a professional. My AAC is not somehow not existent because I got dedicated AAC as an adult.

Oh "but oh, what about those people who need it". Those people? Those people who "can't" use AAC otherwise. Yes, we have an ableist society where you can't afford so much assistive technology without insurance covering it (and where insurance won't cover any assistive technology for so many people), but that isn't because people can't use AAC, it's because they can't afford it.

Is there benefit? Sure. Sometimes. If you want it, its not abusive, etc, etc, etc. But it's not always the best choice. It's not necessary. It's not about people being "too disabled", some "needing it" and others being "not disabled enough" for it. It's about people having choice, even when the way they communicate is different than you first expect.

AAC is approachable without professionals. It means figuring out what people need. It means figuring out how to access what people need. It means figuring out setting up AAC. It means figuring out how to teach. It means figuring out how to learn. And that is absolutely a lot. It isn't that AAC isn't a lot of work. It is that professionals don't have some magic knowledge that isn't possible to do without.

You can evaluate what you need, what your child needs, what your friend needs, what whoever needs. Professionals don't know needs better than someone who is themself going to use AAC. A professional who watches for an hour doesn't suddenly have more information than people who care to communicate for years. Professionals have experience, if they are any good, and nothing to active abuse if they aren't. Evaluation comes from knowing, from paying attention, from looking into what this means. This isn't something only an SLP can do.

You can evaluate options. You can go through looking at what is available. You can research. You can talk to people who use different things. You can research. The internet is available. There is all sorts of options out there.

You can set things up, even with all the work that is.

You can teach, and you can learn. Even with the fact that learning AAC is hard. Even with the fact that learning AAC is a process. Even with the fact that learning AAC comes with different people needing different things to help them learn. And when help is needed, help can be accessed, even by those who aren't professionals. Sometimes this is by asking for advice, sometimes more hands on, someone else helping out more directly, but professionals aren't innately needed. Professionals can help, professionals can be useful, professionals aren't the only option.

You can use AAC without a professional. Sometimes that's the best thing to do. Sometimes that is the only option, either because there are no professionals around, all professionals around are abusive, all professionals around will only focus on speech and deny AAC, all professionals around refuse to see you because you are "too high functioning".

You can use AAC, because you can use AAC. You can help your children, your friends, your family (whatever that means to you), use AAC. You don't need to wait for a professional who might just abuse you.

And beyond that, you don't need to always try to search for the SLPs, when you have that trauma, when you know that trauma, when you live that trauma. When you have the trauma, of people trying to change you, of changing you, of forcing you into being who they want, you don't need to go back to those professionals, even if they are now supposedly good ones, you don't need to trust. Because, there are just other options.

And not only are there other options, for some of us, those other options, are reliably more effective.

The internet, autistic adults, AAC users, are how I got my AAC, are how I learned my AAC. And that is entirely fine. There is nothing wrong with that. There is all sorts of help I have gotten, that I see happening all the time. People get AAC because they are figuring out it is an option. People get AAC because they are learning how.

Communication is communication. It's not dependent on some people to get paid to tell you what is acceptable ways to communicate. Learning more ways to communicate is great, it still doesn't need pathologized, or professionals at all.

Wednesday, August 21, 2019

"but don't you wish you could speak so you could..."

I keep being asked by people who want to push me to speak is "isn't AAC so much harder than speech" or "aren't there things you can't do with AAC?"

I'm often prompted things I might want to be able to do if only I could speak, saying aren't I worried I can't speak because that means I can't do these things. Every one of these things I can do, and have done. Oftentimes more effectively with AAC than speech, because typing to communicate is just so much more effective for me.

I'm told things I can't do with AAC under their assumptions, being "don't you wish you could speak so you could do these things". And yet, I do them. Effectively.

The ideas of what I can do, aren't "I can't speak", or "I can't do something because it directly needs speech" or even "I need to find an alternate route sometimes". It is "clearly this is impossible, clearly we need to push speech"

I'm a college-educated adult, who has been at least aware of autistic advocacy circles for over 15 years, and this is everyday interactions for me currently.

Fear mongering surrounding how speech is necessary for survival is huge, everywhere, and literally the biggest challenge that I am facing at the current moment - not indirect things caused because of it (I avoid enough people and places already for other reasons, I already have enough plans on how to do things myself in place because I've been working on this for long enough) - directly the exhaustion of needing to hear it, over, and over, and over again.

Society is that overwhelming about speech, hatred of even a moment without it.

Questions I have been asked have included things like "Don't you wish you could speak so you could ask for help if you needed it"

Ignoring that I literally am asking for help more effectively than I have ever before in memory, because I ask for help more effectively using AAC, am unlikely to ask for help in the first place even if I should, and if it is a situation that I am pushed to the point where I will need help immediately, I am unlikely to have ever been able to speak, there is absolutely no reason that asking for help is associated with speech anyways.

I have asked for help from people across the world because of the internet, and it didn't matter that I wasn't speaking. When in the same location, I have a tablet, that can vocalize, with multiple apps, depending on what my current communication needs are. In the past I have done things like using my medical alert bracelet to point out to people allergic reactions in order to get treatment. I can get help, I have got help, using all sorts of manners that aren't speech, and generally find them much more effective for me.

But, speech is viewed as necessary for things as simple as asking for help. The idea of communication, of doing things at all, in other manners, even when I am actively doing so, doesn't cross people's minds. Fear, pressure, those are how people are interacting with me. Trying to scare me into how dangerous it is to not speak, this is the normal interactions I'm having.

I'm not being asked how I teach with AAC. I'm being asked don't I want to speak again, so I can teach. Or told, I clearly need to be speaking because children would be afraid of my AAC. None of this has any relation to my reality, to what I do, have done for years. Saying children will be afraid of interacting with me because I'm disabled - I'm not less disabled when I'm speaking. I always have needed plans for suddenly switching to AAC, I have used it in the past, I've taught with AAC now, its not a huge challenge, it means somewhat different planning. It means planning that I need to put into things, in order to do anything, because others don't expect for someone like me to exist at all. So, when others realize, they don't as how, they assume its not possible, they assume I don't exist. Yet again. Like always.

I'm asked, told, had it assumed, that speech is always easier. That speech would always be easier. Had it pressured upon me how much of a burden it must be to not have speech for even a moment. My truth is that I have been finding it immensely helpful. I have been finding it a time I can learn communication I have never managed in my life, no matter how much I have struggled, because speech has been so prioritized, at the cost of everything else, at the cost of whatever it does to me. I have found it is a time to not only heal from a concussion and not be so overwhelmed by the world because speech makes things so much more overwhelming, but to find ways to communicate better, long term, not in terms of new AAC apps, but in terms of, better understanding myself. Because speech isn't always better, and I've known that, but I've not known how to respond to myself, how to respond to the world, when I have had speech pushed so hard.

I'm being told now, that speech is always easier, and yet, right now, when I'm not speaking, is the first time I'm being able to even start to think about making decisions about things like what I want to eat, what I want to do in the day, what makes sense to me rather than asking others what to do, because I am not so overwhelmed by trying to figure out how to say any ideas that might come to mind that I can't get to the figuring it out. And these things, while they aren't things I am consistent at, while they are difficult, while I am able to get bits and pieces out and not everything, are things that will help me later too, because I am finding other ways to communicate, even when those other ways are ways I have already known, because they are sorting, organizing, and having it make sense, the ways that things fit together. Because speech isn't always best. And not speaking is sometimes meaning I can do more.

I'm being asked about how much I can't do because I'm not speaking, and I can't come up with anything at all I can't do, besides speak. I can communicate. I have other ways. But there are so many other things I can do better now. Because neurodivergent brains are neurodivergent, because what is expected isn't always what is best, because speech is prioritized because it is what is easy for others, not because it is necessarily good for me.

Don't I wish I could speak? Not really. My speech will come back as it does, and by the time it does, I'll hope I'll have built enough routines, practiced enough, have enough people be little enough afraid of me, that my part-time AAC use will be a larger percentage of the time than it was. Because I don't wish I could speak right now. I wish that I knew all along how to use my AAC more efficiently, and I am so hopeful that this is finally how to let me do that.

Tuesday, August 20, 2019

My AAC isn't for you

I've been a part-time AAC user, for I don't know how long (sometime around a decade using dedicated apps is my best guess), and yet many people in my life had managed to overlook, forget, or ignore this fact, because they didn't want to see me as such. To them AAC was for others, not for someone who communicated like I did (the fact I tend to spend multiple hours a day unable to use mouthwords aside, that isn't convenient for those who want to judge on the mouthwords you do produce, or how "articulate" your writing is.

This is relevant at the moment, because right now they can't ignore my AAC use. Back in May, I got a concussion, and I have had post concussion syndrome. While others around me have been stressed out, thinking about how hard it is not to speak, I haven't found there to be much of a change. I use my AAC - I have always had it with me anyways, I've used AAC regularly anyways. I use ip relay to make phone calls - I can't pick up the calls made to my cell phone unless I want to try to handle it on speakerphone and responding via typing on my tablet, but making calls is fine, and I had relay and used relay before. I have not added anything to my toolbox, using AAC full time for the past few months, I just use it more regularly. The only difference is in how people see me.

Because before, others wanted to deny that I was using AAC, and now they can't. Now when they are trying to deny, what they are trying to say is that I will be "fixed", I will go back to "normal speech", ignoring that I never had normal speech, and they are finding they can't do that. So how others around me see me keeps morphing, changing, with them realizing things that have always been true, with them trying to make me out to be what they want me to be, realizing they can't, trying to force it anyways, it failing again, over and over again. None of this is about me using my AAC, none of this is about what I need to do, or what I can do. It is all about the expectations that speech is default, the expectations that speech is preferred, the expectations that part-time AAC doesn't happen.

And these expectations of others, keep returning to trying to make me into what they want, more than anything else. They want me to speak, not only because it is easier for them, but because that makes me fit into their world view. Someone who teaches is someone who speaks, not someone who uses AAC. I shouldn't be an AAC user. Someone who they turn to for advice shouldn't be an AAC user (but who better to know about AAC than AAC users, people are the experts on themselves). I am not who they want, who they expect, who they see as who should be, an AAC user. That is too other. I am not supposed to be that visibly disabled.

The only reason I am not always that visibly disabled is because I am erased over and over and over again.

These expectations keep returning to people wanting to make me into someone who speaks for them, not for me. Not because it is easier for me. Not because it would make my life better. But because it would be easier, nicer, more pleasant, for others. They say as much. Directly.

My communication isn't there to make others comfortable. My communication is to let me communicate. My communication is how I want to communicate. My AAC is for me. And I don't care how much me having used AAC for a few months makes people uncomfortable, it has been easier to communicate in some ways than it has ever been in my life. And while I do want to speak again, and do want to be a part-time AAC user, not a full-time AAC user, my AAC use or non-use choice is not about others comfort, its about how easy things are for me. It's about how I can communicate what I want to communicate. It's about my life, my choices, what helps me. Not about being seen as disabled by people who somehow manage to pretend I am someone I am not.

Tuesday, July 23, 2019

"just bring a straw with you"

Disabled people are told all the time to just carry straws with them if they need them. To make it a burden on them. That other people can't think about accommodating. Often this includes forcing reusable straws which there is so much written about I'm not going to spend any spoons searching for and linking to anything about it. (No reusable straws aren't a feasible option for everyone. They are for some people. Okay, sure, if it is for you, then feel free to use a reusable straw. They aren't for everyone. Don't tell people to use a reusable straw because you can use one. Not everyone can.) Even when it doesn't it goes into, you can just buy one time use straws and carry them with you instead of expecting others to cater to your needs.

I mean, yes I do expect "catering to my needs" when that is basic accommodations. I'm not asking for special treatment. I am asking to be able to drink liquid and eat food.

But anyways, why I am writing this now. Today I had a scare of losing my cefaly. This is a multi-hundred dollar piece of equipment that is one of the major parts of attempting to keep me my migraines more controlled. I need to carry it with me everywhere. This is something I actually need to carry with me, unlike straws, because I need this piece of medical equipment with me everywhere I am, and its not something that is other locations can provide for me (for one thing I need it when traveling place to place, for another, I am not expecting places to have an eTNS for migraines, am expecting them to have straws). And because attempting to manage and carry so many different things that I need to carry everywhere, I lost it. If I lose this, if I don't have it, my migraines spiral out of control (not that they are in control ever, but out of what I have towards control). Because I can't take triptans or DHE, my cefaly is the only thing I can use when my migraines are severe enough I need to use something in the moment, immediately, now. Not having that is a big deal. If I'm not using it regularly, the number of falls I have dramatically increases. If I am not using it regularly, my auras get even more severe (and I am talking as someone who has gone 10 years without breaks completely leaving aura, jumping migraine to migraine with complex extended length auras.) It is a big deal for me to not have access to my cefaly always.

And I lost it. I have managed to find it before writing this, but the point still stands that I lost it, because I am required to carry so many things in order to try to exist in public. That I need to carry a backpack full of items in order to simply make up for the fact that places won't even try to accommodate me, not to mention try to be accessible, and still end up having it cost such an unreasonable amount to do anything.

And people keep telling me to add yet another thing. Yet another thing to a bag where I have lost necessary things from, because they need me to carry literally so much weight it has me in constant pain to carry. Yet another thing to a bag that I am losing things I need. Yet another thing to a bag, where my cefaly isn't even the only thing I have recently lost, and other items haven't all been found, other things just are easier to replace if it comes to that. Yet another thing that is more work, more executive functioning, and more something will fail, and who knows what.

It's not just straws. It's everything. It's needing to do everything. It's needing to fight to exist. It's not having things be accessible. It's not having anyone accommodate. It's the fight against accommodations being so strong that people won't possibly think that someone who needs a straw can have one, because of being too much of a burden, and not caring what it does to us. If it hurts us, that doesn't matter. If it is the straw that breaks us, that doesn't matter. We aren't human anyways.

You aren't asking me to carry a straw. You are asking me to carry more than I can, I'm already trying to find ways to carry too much.

Friday, March 29, 2019

Ow? What is pain I do not know, and yet I have chronic pain

"Rate your pain on a scale of 1-10"

"I don't know"

I'm always in pain. I don't know how much pain I'm in. Pain is life. Pain doesn't make sense to me. Pain is always there but how do you process it, it is nonsense.

I'm told to rate my pain. I don't know how.

I'm autistic. I also have chronic pain. I'm autistic. I also had disabling pain as a child.

I don't understand pain.

I don't know any other way to exist.

There's a lot of talk about how much autistic people process pain differently, and I can't see those conversations and not wonder, but how much would we actually be able to process pain if our pain was treated, if our pain was listened to, if our pain was taken seriously?

I'm autistic. My pain doesn't matter.

I started having disabling migraines at age 7. They weren't frequent then, but they were extreme in how painful they were. I have memories of that, even if I can't comprehend the pain now. I sprain my ankle walking on flat ground. My body doesn't listen to itself. Pain is just something that happens. I don't know if I ever had a way to explain pain and have it understood, have it listened to, have it comprehended and taken seriously, rather than just being something that wasn't a big deal to everyone around me, so it should clearly not be a big deal to me.

I'm autistic, if I can't explain then it isn't real.

I grew up pushing through pain. I don't have memories of how much pain I had at what ages. My childhood memories aren't that clear. I know that by the time I was an adult I had multiple forms of chronic pain. People talk about diagnoses and treatments and things for pain. This feels like a mystery an imaginary thing that doesn't really exist.

I'm autistic. Nobody listens.

I grew up pushing through pain. It was the only way I had available. It was how I could exist. It was how to survive. It was the only way I could get through day to day. I don't remember details, but I remember this. I don't know if others knew when I was in pain if it was anything other than the migraines that shut me down completely. I don't know if they ever knew there was a possibility of pain.

I'm autistic. Nobody thinks to ask.

I grew up pushing through pain. Now I deal with the consequences.

People talk about pushing through pain like it's a good thing. Like it's how to manage to get to do things you want to do. Like it's ways you can manage to take less meds, and like meds are awful things. People talk about pushing through pain like it's a way to make everything better. It's what I did because I didn't have any choice otherwise.

Now I deal with the consequences.

I don't understand the concept of pain.

No really. I don't understand the concept of pain.

I mean it. I don't understand the concept of pain.

This is more than not being able to rate on a scale of 1-10. This is not recognizing that dislocating a joint means maybe I should actually go to the hospital. It's not like my body is actually telling me I should. This is pushing myself past boundaries, not noticing how injured I am, forcing my body through situations it can't be in, because I don't know the difference. I don't have a warning signal.

Pain is a warning sign. Mine was taken away.

I grew up pushing through pain. Now I deal with the consequences.

I need others to watch out for me. I need to analyze. I need to watch the signs that aren't pain. Because pain means nothing. I don't know how to use pain to keep myself safe.

This is dangerous. This isn't a good thing that pushing through the pain lets me do. This is a terrifying reality of needing to survive and finding ways to survive.

But I'm autistic. So I just process pain differently.

I'm autistic so I just "have a high pain tolerance".

What if people just paid attention to my pain?

What if I didn't have to survive in a world where pain was an unrelenting reality of pushing through with no possibility of anyone even recognizing it existed?

Because dissociation is my life now. I dissociate from pain constantly. I dissociate to survive, because dissociation is survival. Dissociation means not fighting my body in more ways that I can fight it. Instead I just don't have a body. I'm just a being who lives in a meat shell that happens to exist here, that I am using to interact, because I need some way to interact.

But I'm autistic. So dissociation is pathologized into processing differently.

What if I was just given the chance of not needing to?

What if I was allowed to have a body?

What if I was allowed to survive in a way that wasn't needing to dissociate to exist in a world so hostile to me?

I'm autistic, and I have chronic pain. And I don't know how my body works with pain. I don't know and I can't know, because I can't have the option of understanding how my body interacts with things like pain. I need to separate myself, because I need to exist, and I was never allowed to do anything but find ways to exist. And this was how I could.

But, now that means instead, it's all because I'm autistic.

And not because I have pain.

And how many other autistic people is this happening to instead of anyone listening?