Can vs Should

CN: anaphylaxis and not taking anaphylaxis seriously, abuse, talking about disabiliy and risk of death

If you ask me if I can teach, it doesn't matter how sick I am, it doesn't matter how symptomatic I am, it doesn't matter how much I can't, I will say yes. And I will do so.

And this is one of the reasons I can't teach.

So yes, I've gone to classrooms with migraines where I couldn't see, speak, or stand. Yes, I've signed up for a summer job while I still had significant enough post concussion syndrome that my doctors were regularly seeing me to monitor how my brain was doing. And yes, I've gone and taught in the middle of anaphylaxis.

Whether or not I "can" do this doesn't mean I should teach when I can't breathe enough to not have my vision go black if I try to walk 5 feet. Whether or not I can pretend, doesn't mean it is safe.

I don't think it is a huge controversional statement that I should not teach a class in the middle of anaphylaxis, while my throat is closing, while I'm producing enough phlegm that I'm emptying tissue boxes, while lying on the ground I'm not sure I'm staying still enough and in a position that keeps me from presyncope but sure that if I rise I'm into it, and yet I have been asked when in that state, if I could teach or if I needed someone to cover.

I said I could teach. And I did it. I got to the room before anyone was there, still not sure how I safely managed it, half sat half laid across pillows with them holding me up, and yet it managed to make it look like it was me being casual - it was a casual situation after all. And had my AAC to explain what was going on, and let people do what I told them to do. Nobody knows you can barely breathe if you're using AAC anyways.

So yeah, under some definitions I can teach in the middle of anaphylaxis. I have. And what should I have been doing? I should have been in the emergency room. I've had plenty of mild anaphyalaxis situations where emergency room wasn't necessary, but when for all I know my blood pressure is crashing given the presyncope feeling, and whether or not it is, sitting not to mention standing, is a question because of the struggle to breathe, that's not a situation to be messing around in.

Except, what I can force myself to do, and what I should do are different. And when the question in my mind, is teach, or leave those children with an adult who is abusive - and even asking me to do this was abusive, there's not a question in my mind that I am protecting those I can protect. It was dangerous and risking my life and truthfully, I couldn't think of any of that in the moment, what I could think was I can find a way do these things for these children. I'll find a way, at the cost of my own health and a risk of my life.

The things we can do, and the things we should do are not the same.

And so often, we're told because we can do things we don't need help.

But no, I can do things, because if I don't children are abused, not because I'm actually capable of it.

And that, can.
That's killing us.

I am just lucky I got away, I was dragged away, I had people who could get me some kind of help I needed, and I wasn't forced into I "can" do this, even at the cost of my life.

Techincalities don't make can't into can.

And no, I can't do this, no matter what you say, and no matter how many times you ask.
(and no, don't ask me)

We can say we can't.

Even when our can't doesn't agree with your idea of can and can't. Even when you'd rather say if we can force ourself at any cost, then we can, even when under every definition we shouldn't spend that much of our own being, because we can't do it, even while forcing ourselves, we can just pretend enough that people who don't care don't notice.

Our lives are worth too much to pretend otherwise

Our lives are worth too much for you decide what we can and can't do.

Growing up on AIM, I could communicate

I'm an autistic millenial. Like other people my age, I grew up in the internet of the late 90s and the early 2000s. I grew up on forums and reading blogs. I grew up with it being a big deal who had dial up and who didn't. I grew up around y2k. And I grew up with AIM.

I grew up in the time of AIM. And sure, AIM wasn't the only messanging program around, or the only messanger I used. I had AIM and MSN messanger and skype's text chat, and chatrooms associated with forums, and found my way to IRC. But I grew up with AIM; I grew up on AIM.

Because AIM was what everyone had, and in many ways AIM defined this time. If you didn't have an AIM account you were ostrocized, whether it was by people who'd bully you for everything, or friends still being why are you so weird. It was expected. And it was text chat.

I grew up in a time where a text chat was was the cool thing to do, it was the expected thing to do for completely everyone, as everyone moved online, and was finding ways to keep contact with friends. It was easy, it was convinient, and it was something that didn't make you stand out. Typing, text, things that weren't speaking weren't disability things, they were everyone.

And me? Who didn't get IM accounts for the longest time because I didn't understand why you'd want to have real time conversations if you weren't forced. Because I didn't want to deal with needing to process all of those things even more. What it did for me when I was dragged into this socializing, was being, this is something I can do when I didn't realize anything would be doable.

But I grew up in the time of AIM. And that meant that my learning and discovering how to communicate in text, and that I could communicate in text, and that it was possible to do things I didn't know was possible, was socially acceptable. It was expected, it was something you were supposed to do to have conversations in these instant messaging programs. If you did otherwise you were the weird one. I was able to figure out what I needed - but without social stigma of this discovery process. I was able to figure out what I needed - and with things being provided to me to search and try, and explore. I wasn't stigmatized for the discovery process of maybe I can actually communicate if you give me the ability to type.

I grew up on AIM, so this was what everyone was doing, whether they needed it for disability or not. In those early years it wasn't the slightest bit out of place, when it would have been seen more strange for not having an instant messaging account than for typing to friends when we were next to each other.

And yes, these times, where we talk about older generations calling and younger generations texting. Where we talk about the first generations of people growing up online and teens living on social media rather than on the phone as teens. They're talked about a lot in terms of differences in communication in general, but it's also worth thinking about these in terms of progress in terms of non-speech communication, in terms of what is normalized.

In some ways, the first AAC I used was AIM. I would send messages to people sitting next to me becuase I needed some way to speak when I couldn't. I pieced what I could do together using the internet. And in other ways, nobody thought this was weird, I wasn't some odd disabled person. My communication wasn't stigmatized. They didn't notice I couldn't speak. They were choosing to type too.

I like turtles (or AAC is really hard)

I like turtles

I first started seriously looking at symbol based AAC in my mid 20s. I was working and needed more support than I had in order to be able to do my job - this was something that seemed like it would mean I could work when I otherwise couldn't. Vocational rehab was supposed to get me a setup, but avoided doing so until I needed to quit with my brain and body being unable to keep up with the demands of work.

This meant I first got the symbol AAC I use in my late 20s, when I was able to afford it for myself. I'd graduated from college. I'd worked in the field of education. I'd started typing when I was young, and was regularly using typing based AAC. I was able to communicate using speech at least some of the time. And while none of what people do, or don't do is important to their worth, I'm making this clear, entirely for the next point.

It took months for me to be able to say anything besides "I like turtles" on my symbol based AAC.

AAC is hard. It is really hard. Communicating is hard. Language is hard. Learning these things is so many different things you need to do, you need to know, you need to learn and put together, and piece together. But - even for someone who had been regularly using English in multiple other forms - I could not say more than a single sentence - the same sentence always - on my system, for literal months.

And think about the expectations put on toddlers? To within a week or two be using this to communicate?

I could never have done that - and I had the advantage of choosing the app I wanted, so I knew it was one that the organization worked better for my brain. I had the advantage of being able to organize and reorganize and continue to reorganize my app to make it work better for me (and in the process learn how it was set up!) I had the advantage of decades of learning how my body coordinated, because as dyspraxic as I am now, I'm not 3 years old and trying to learn my same dyspraxic body.

I had the advantage that I had the choice and control, and that when I was practicing, I could look through other folders, trying to figure out anything else to say, and get overly confused and go back to just saying "I like turtles" yet again, and nobody would tell me I had the mind of a toddler, when I was 28, because I had gotten lucky enough to have control of who was around me as I was practicing. I had the advantage that I could lead the way, completely.

And still, it took months, where all I could say was "I like turtles". And months of practicing, in ways other people did not see, and would need to trust me that it was worth having this app and having paid for this app. And months, of figuring out things in my own very personal way. And returning and telling people that "I like turtles"

These expectations of children figuring out AAC in weeks, or even in months, are unrealistic. We are asking people to do incredibly difficult tasks of figuring out how to communicate in new ways. And it can be worth immnense effort to learn to communicate in new ways, and add these to the set of methods of communication. But that doesn't make it not, really, really hard. (I will note, that whether or not something that is difficult is worth it is going to vary, sometimes something will be worth it, sometimes it won't be and something else would be, everything is personal. I know for me, what is worth using for communication and effort and how immensely hard it is when multiple things are really hard, is going to vary moment to moment - that's okay. Communication is complex.)

We're asking people to learn to communicate in ways that abled adults can't, as they talk about how hard it is to model, and not being able to do the modeling for their children, and yet, there's this expectation that children can pick it up within a month, despite that difficulty

And beyond all of these expectations, there is the simple experience. This is hard. This is really hard. And that's okay for me to say that this is really hard for me still and was really hard, and even though it's sometimes the best I have, that doesn't change that it's hard.

And, the simple description of, figuring out AAC by repetition of even the same thing is something I needed to do and that's okay too. And if you haven't guessed, I like turtles.

My AAC is my normal voice

CN: abusive speech therapy

When I was a child I was put in speech therapy because I didn't speak properly.

Sounds don't work that way. They don't combine those ways. They are more predictable than that. Don't you know, don't you know, don't you know.

Just do this. (But how?)

Just do what I say. (I know I'm wrong. I'm trying, it's not good enough)

Say these again. You need to repeat until you do it right. (But, why does saying cat like you do matter? people already know what I say)

You aren't trying hard enough, nobody will ever understand you. (I can't make sounds go right order in words you don't make me say over and over again anyways. I'm not saying anything. I don't want more words to say over and over.)

You don't need anymore speech therapy. [You speak properly now]

Don't you know, that the people coming up to me and making fun of my voice is something that doesn't happen enough I don't know how to talk about it. I know my voice is uncanny valley. But none of this bullying that has lasted into adulthood happens. My speech is normal now. They said so.

Don't you know, I don't need any sorts of support, I can't just speak. My speech is normal you see. What I actually need for supports isn't what matters. It's what people deem as normal. It's what people deem as close enough to normal.

Don't you know, it's do I try hard enough, when anyone notices my speech isn't like theirs its because I'm not trying hard enough. Don't you know if I can't read aloud its because I'm not trying hard enough. Don't you know if I get overly fatigued and my mouth stops moving in anything like word positions its because I'm not trying hard enough. Don't you know I just need to try, with more energy than any person, non-disabled, or disabled has. Because I need to look like others want.

Or that's what I'm told. That's what I have been told. That's what I was told for much of my life.

I talk about not using AAC until I was an adult. I was told my speech was normal. I just needed to make it sound normal. It was just needing to try.

I wasn't directly told AAC was failing, but they didn't have to.

I was told I was normal I was told I was normal I was told I was normal. I was told I had to be normal.

If you don't speak like this nobody will understand you

There's no alternative. I wasn't told AAC was a failure, but they don't need to say that when you're told there's no alternative.

My AAC is my normal voice.

Do people have to be normal to be understood and important and relevant and people? No.

But if my speech is normal, then my AAC is my normal voice.

Why is saying nothing preferred? AAC at the doctors office

I do not need to ask why is it that I've had multiple doctors ask me why not everyone does this typing to them, but why?

Why are we so focused on speech as society, that even when you cannot speak because of illness you try, and won't turn to the phone you are already caring?

Why is speech so prioritized that typing is so much a failure, subhuman, thing to do, that saying nothing is preferred?

Why are these doctors, where it makes their lives easier, because I am the first patient in these scenerios, that they can easily get a picture of the situation, that treat me as something even close to human?

I know these answers. Or, at least I am not surprised by any of this. I was one of the people taught from birth how much I was a broken child because my speech wasn't like everyone else's. I am someone who has been told too many times to count how much my words don't exist, because I am typing. I am someone, with the trauma of forcing speech. I am someone with this in my body at all moments, as my body needs to remember how to respond to people, to communication.

But, at the same time. I cannot understand. I can't understand why someone would choose to be trying to talk through coughing so hard it is making you black out - and I've been directly told by a doctor I was the first patient they've ever seen that didn't try to do such a thing. It is so much easier, to not rely on the unreliable body parts which aren't working in these moments of illness.

I want to tell people, this is an option. I want to tell people, it's okay, you aren't taking it from some other people, if that's what they're afraid of. Or, if you are afraid of being like "those people" then get though this doctors appointment you need to get through and then read the words of those people. Listen. You have so much to learn.

I want to tell people that this is an option. That, they don't need to speak at all moments of time, even if they do usually. Even if they do all the time, except for illnesses like bronchitis, such as I am referencing as an example here.

You aren't wrong if you use AAC because of laringytis or bronchitis or anything of this sort. It's great! It's for everyone. Use it.

I want to tell people this is an option. And society is wrong, in saying that you need to try to speak. You don't need to force yourself. You don't need to spend energy, or oxygen, or physical pain. You don't need to try to speak when you physically can't. You simply don't need to. And there are options. You can do what works.

I want to question how people using AAC in these moments is normalized, rather than if anyone else will see these doctors with AAC. I want to question what is being done now, rather than why I was the first. I want to know, what are we doing, so that people can communicate, however they can, whenever they can.

And I want that to mean everyone.