charlie

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[charliesaac]

hi i’m charlie! i’m 21 years old. i’m a low-med support needs autistic system, and am verbflux :) i use aac with people i am close with but wish to use it more frequently as it both makes me feel more comfortable and brings me joy to use aac (despite its cons compared to verbal speech in my case)

my one (1) DNI criteria is. no pro ai people at all. i am extremely anti ai and i don’t owe any further explanation.

[disabled-dippy]

Can we talk about how disabled people are literally left to die in emergency situations? Because I feel like we don’t talk about this enough.

Today my apartment building (I live in on-campus living) had a fire drill. I live on the ninth floor. The last few times we’ve had one I’ve been able to drag myself downstairs with the help of my roommates and I’ve had several flareups because of this.

When the alarm went off, I decided to see if I could get an exception to use the elevator instead, even though we technically aren’t supposed to use them. I’m already in a flareup and I would not have been able to make it downstairs without assistance, and I did not want to make my symptoms even worse.

There was a security guard in my floor’s common area. I asked him if I could use the elevators and he said no. I asked what I should do, gesturing to my cane so he knew I wasn’t going to be able to go down the stairs. He told me to sit down and wait for his supervisor.

He was on the phone with his supervisor for several minutes, and eventually the supervisor came upstairs. He asked if I was the one who needed medical help and I said yes. He then asked if this was a “temporary or long-term thing.” I told him it was long-term.

Then he says, “well, you can’t use the elevators. If there’s a fire in the elevator room, they won’t work, so we shut them down for drills.”

I asked what I was supposed to do then, and he said: “Why are you even living here? You shouldn’t be living on the ninth floor. You need to talk to ODS (Office of Disability Services) and move to a different apartment.”

The original security guard chimed in with, “you should just go back to your room and wait it out. And then both of them just left.

They didn’t even try to offer assistance or come up with a solution. No asking what my capabilities were, no offering to help me down the stairs, no trying to figure out a way for me to safely exit the building. Nothing. They just turned it around on me, blamed me for daring to not live on the ground floor.

If worse came to worst and there WAS a real fire, I would find a way to get out. I’d take the flareup over dying. But what if I couldn’t walk? What if I was in a wheelchair, or could only walk a few steps? What then? And what if this was the only apartment I could afford? What if this was the only room that was available? What if ODS was not accessible to me? What if for one reason or another I couldn’t get housing accommodations?

Would I just be left to die because the people whose job it is to help people decided they couldn’t be bothered to at least TRY to come up with a solution?

The worst part is, during one of the previous drills, security told us: “If you’re disabled and need help exiting the building, please let us know, and we’ll come up with a plan.” And yet when I did that, the best they could offer me was essentially telling me “you’d better hope there’s not a real fire, because we’re not going to help you if there is.”

Unbelievable. And I know I’m far from the only person who has experienced this. This was literally a discussion point in my Disability Studies class a few weeks ago— how disabled people are often left behind in emergencies, how they are blamed for not being able to get out, for having the audacity to exist in a world that is inaccessible. It’s absolutely horrific that these people would sooner let us die a horrific, traumatic death than be bothered to come up with a way to help or offer any kind of assistance.

[bebsi-cola]

abelds have this funky ability where they hear disabled people say they "can't" do something and instead of hearing "can't" as in, cannot, they hear "i can if i push myself and i just don't wanna". which is really interesting!

[charliesaac]

a reminder about physical disabilities

just because you're not in constant pain, doesn't mean you're not struggling with a disability. here is a list of things that can also be symptoms of having a physical disability, or even could be a physical disability on their own

- frequent or constant joint tenseness - struggles with your heart - struggles with your breathing - frequent or constant dizziness, lightheadedness, shakiness, and/or weakness - frequent or constant fainting - inability to walk long distances for any reason - chronic fatigue - chronic nausea

these are all grounds for potential disability. don't let the people around you convince you that you're not struggling just because you aren't in pain all the time. don't let the people around you convince you that, just because the doctors say you're healthy, that you are in fact healthy. don't let imposter syndrome eat you alive. your struggles are valid.

[charliesaac]

had a disappointing experience that made me feel discouraged. i was on vc with friends and they couldn’t hear my aac and i kept trying to fix my settings and when i finally did and could use it, people were just talking over me and i couldn’t find words at the right time. i wonder how to go about this better.

[charliesaac]

i keep coming to WIP pages on my aac with nothing to add or change because i don’t know how to organize it and organization isn’t the best feature on this aac app. you can only go one subcategory deep and the folders can’t be moved around between single buttons (the app is speech assistant aac) idk. how do you guys organize your verbs, adverbs, adjectives, etc? here’s what i have so far for my adjectives and adverbs. i need ideas…

[piercingcomet]

we started with a big folder called "descriptors" and would basically add anything describing things, and whenever there were enough to form a category we'd give it its own folder

now we have like. our descriptors one (adjectives mostly), verbs, and nouns, and those are basically folders that hold more folders

our descriptors one is still kind of an exception, but if you go there it's divided into colors, personality traits, identities, shapes, emotions, etc, etc, and then you scroll down to buttons for whatever doesnt need it's own folder yet

and then our nouns and verbs folders just hold other folders :^ some of them overlap but it makes them easier to navigate. like people, locations, jobs/working, cooking, etc. and maybe cooking overlaps cause it has objects in a kitchen as well as "chopping" and "baking" and stuff

[charliesaac]

thank u i appreciate this!!

[charliesaac]

i keep coming to WIP pages on my aac with nothing to add or change because i don’t know how to organize it and organization isn’t the best feature on this aac app. you can only go one subcategory deep and the folders can’t be moved around between single buttons (the app is speech assistant aac) idk. how do you guys organize your verbs, adverbs, adjectives, etc? here’s what i have so far for my adjectives and adverbs. i need ideas…

[charliesaac]

i hate how sometimes i say the wrong things and they come off as rude when i don’t mean for them to and then everyone thinks i’m an asshole :(

[noodle-shenaniganery]

I hate how often some (typically abled) people will go “well, if you can’t [get a specific support], then what?” when it comes to disabilities. As if it’s a “gotcha” moment. And then act like you’re exaggerating when you answer that question honestly.

Disabled people often die from a lack of support. A lot of disability aids are not a luxury, but a basic need in order to live.

“Well what happens if—” people die. People hurt themselves. People hurt others. Disabled people don’t magically become abled if our needs aren’t met.

If a bedbound quadriplegic is caught in a housefire, and there’s nobody there to save them, they’ll probably die. They won’t magically become able-bodied out of sheer will.

If a nonspeaking/nonverbal autistic is denied access to alternative methods of communication, they’ll suffer in silence. They won’t spontaneously become capable of speech.

Disabled people are disabled all the time. Our disabilities don’t go away just because they’re inconvenient, or if we’re in danger.

[charliesaac]

here are some WIPs of pages on my aac app… i use speech assistant aac on my iphone :P

all the symbols were made by yours truly :3

[charliesaac]

this is a reminder to reach out to the developers of your aac app to suggest things. i use speech assistant aac (which is only like $22 USD on ios and theres a free version on android and the paid version on android is roughly $10 USD) and i’ve made several suggestions and they have been nothing but nice and accepting and quick to respond to me!!! if you have suggestions for your aac app, try it!!! it might just work!!!

[charliesaac]

god i am so annoyed with trying to figure out if i am level 1 or 2 autistic. i always like to say i’d be a level 1.5 if it was a thing, but i fit some criteria from both 1 and 2 levels. i don’t expect anyone to tell me, but i just can’t tell and i need some help trying to figure it out. any questions and advice are welcome :,)

[aac-cabinet]

Alt text under cut

Let's talk about the term "Autism [Parent]" (mom,dad,etc.)

Is it just me or does it feel weird when allistic parents call themselves “autism parents”?

Like… something about that wording just gives me the ick.

Your child is autistic. That’s their lived experience. Their brain, their sensory world, their communication, their identity.

You are involved in their life; yes you support them, advocate for them, raise them, but you are not the one experiencing autism.

So why are you labeling yourself with it?

It starts to feel like you’re centering yourself in something that isn’t yours to hold.

And what really gets me is when it’s the same people who say “their autism doesn’t define them”... but then turn around and define themselves by their child’s autism.

Like which is it?? Because that contradiction is loud.

If autism “doesn’t define them,” why is it defining you?

It comes off less like support and more like identity borrowing.

It's like taking something that impacts your child’s entire existence and turning it into a label for yourself; one that gets you community, attention, or authority in conversations that should be led by autistic people.

Yeah, parents deserve support spaces. Raising a disabled child can come with real challenges.

But there’s a difference between:

“I’m a parent of an autistic kid”

and

“I’m an autism parent”

One keeps the focus where it belongs. The other kind of...shifts it.

Autistic people already get talked over enough; especially Autistic POC and HSN & MSN Autistics. Their experiences get filtered, explained, and often overwritten by the people around them.

So when even the language parents use starts pulling that focus away, it doesn’t feel harmless, it feels like part of the same pattern.

Like just… support your kid. Advocate for them. Learn. Listen.

But you don’t need to make their autism your identity to do that.

Please let me know your thoughts in the comments.

Do not talk over autistic people here.

Do not talk over POC or MSN/HSN autistic people either.

If you’re allistic or otherwise not part of those groups, this is a space to listen, not dominate the conversation. You can contribute and ask questions, but you are not the focus here.

Autistic voices,especially those who are most marginalized, should come first.

[kaputtsolvi]

What I feel people frequently forget about autistic special interests is that they aren't always information based. They may simply be visual or mental

Someone may have a special interest in a show, but instead of that meaning that they will talk about that show often, it may mean they watch that show extremely frequently.

Special interests are ways of regulating, not simply encyclopedias we have in our heads. Sometimes it's watching something frequently. Maybe only listening to one genre of music, maybe it's a collection, maybe it's an action. I'm tired of it only being seen as autistic people's personal encyclopedias

[charliesaac]

how does one feel comfortable using AAC witb strangers??