#AAC

[chrome-barkz-aac]

so we're all chronically online and thus all know about the "cyberpunk dystopia already exists for disabled people" (if you dont, click here) thing

well, every single coughdrop user in the world has not been able to use the app because coughdrop LLC decided to switch server providers without telling their userbase.

this caused a total outage. no one can use coughdrop until its fixed.

let me reiterate, this was a PLANNED outage. NO ONE was informed until a few hours after the servers went down. we have no ETA for when we will be able to speak again.

for some of us, this literally means we have not been able to communicate with our loved ones and community since yesterday morning.

some of us have low tech options or can sign or write, which is great, but i would like to remind everyone that not all of us can. some of us do not have the hand strength or dexterity to write or sign. some of us rely on dwelling/eye tracking tech to move from button to button.

for those of us without a second option, we have become voiceless.

i have to pay to speak. right now, i am paying for a service that isnt serving me. i am disgusted and appalled.

[asexual-amanita]

Going nonverbal is not a thing.

I’m a part time AAC user due to verbal shutdowns. I use a high tech AAC device, text to speech apps, communication cards and a DIY letter board.

A lot of people like me, who experience verbal shutdowns incorrectly label themselves as “nonverbal”. This misuse of language actually harms the nonspeaking community, and speaks over their lived experience. Nonverbal and nonspeaking describe a full time, long term state of being unable to speak much or at all.

This is not the same as sometimes being usually able to speak, but experiencing verbal loss.

Now don’t get me wrong, if you’ve been using nonverbal to describe yourself for a long time, only to realize that word wasn’t for you, it can be a big change. Even I was quite resistant at first to change my use of language.

But this is important. Nonspeaking people are so often left out of conversations, and so rarely given chances to share their opinions. But the majority of the nonspeaking community has made it clear that this is not a word for people like me, and it’s important to listen to them.

If you’re struggling to find a correct term for temporary loss of speech, here are some alternatives ⬇️⬇️⬇️

Verbal loss

Verbal shutdown

Speaking break

(Episodic) Speech loss

Communication shutdown

Losing words

[neurodivergent-mermaid]

"Autism isn't a disability" you tell me as my family are all considered carers for me,

"Autism isn't a disability" you tell me as i receive disability benefits for my autism

"Autism isn't a disability" you tell me as i have special needs so severe i cant even attend school

"Autism isn't a disability" you tell me as i am nonverbal

"Autism isn't a disability" you tell me as i can't regularly dress, bath, do grooming tasks without help or at all

"Autism isn't a disability" you tell me after I've spent months of my life requiring 24/7 1-1 supervision

"Autism isn't a disability" you tell me as i am housebound

"Autism isn't a disability" you tell me as i am officially diagnosed with nothing other than autism.

Maybe autism is a disability, and maybe you just don't want to accept you are disabled because of the stigma around disability? All autistic people are significantly impaired in areas of functioning, even if that makes you uncomfortable, that is the truth. And maybe you should spent 1 minute to go and read the diagnostic criteria for autism. That all autistic people meet.

Autism is a disability, and when you advocate that it's not, you are making real world harm, especially for people with substantial support needs.

They don't give disability services to non disabled people, so please, when your advocacy includes limiting services for those of us who need them the most, is it advocacy or are you just harming people who are already in positions that they can't advocate and be as loud as you.

[database-aac]

Lots of AAC use today,

went to the park at night with my brother and sister, couldn't speak the entire time but they treated me so normal and had patience, it made me very happy.

[nemo-bros]

i think lots of people do not realize how long it takes to set up aac (low tech or high tech)

low tech requires lots of printing and cutting and laminating and hole punching and more cutting etc

and high tech requires hours of sitting with device and customizing not just settings but words, folders, layout etc

[zebulontheplanet]

Screaming at everyone this upcoming autism awareness month that nonspeaking/nonverbal people who are autistic are still autistic. No matter if they’re nonverbal/nonspeaking or not.

(Nonverbal as in cant speak at all, all the time!!)

[autiebiographical]

We need to stop devaluing non-speaking communication.

I honestly believe that sign language should be taught in school. Non-speaking people aren't the only ones who benefit from it. Making the world a more accessible place helps all of us.

[stories-by-starlight]

Shout-out this stranger met for while recent, who saw we were AAC user and for whole time:

• made sure we not talked over in conversation

• stopped others from skip over us, and didn’t let them rush us either

• said any words AAC was say wrong verbally for us after we express frustration with that

• didn’t touch our device once or look at screen while using AAC (they were only person who didn’t)

• made sure we comfortable and accommodated whole time was with them

And don’t think any this was even big deal to them. This was first time they even saw AAC, but they still made sure were accommodated for it. Don’t think they realize how much meant to us, and it meant everything to us. To be include and supported so much by total stranger who we would never see again.

Gave us lot hope. Fact that there people like that out there. And wanted put all thoughts that couldn’t put into words when with person here.

Want other AAC users know that there people like that out there, and that there hope.

Edit: Notice this post a lot of people’s first time hear about AAC, want be clear that this person only start say words out loud for us after we made clear that that was something we okay with. Please don’t assume other AAC users want others correct words AAC pronounce different, because many don’t. Every AAC user different person with different preference, please don’t take ours as universal rule.

[five-thousand-loaves-of-bread]

autistic people dominate AAC conversation on tumblr so for this AAC awareness month (October), let us also remember all non-autistic AAC users & autistic AAC users who not use AAC because or solely because autism.

people use AAC for from intellectual & developmental disorders to neurocognitive disorders to neurological to physical disorders. people use AAC for disorders from birth & acquired disorders. progressive & non progressive disorders.

some AAC users have mouth speech, motor, and/or sound clarity related difficulties, others use for language and/or cogntive difficulties, some for combo of reasons.

those with…

intellectual disability

genetic & chromosomal disorders like down syndrome, rett syndrome, angelman syndrome, williams syndrome, etc.

cerebral palsy

speech language disorders like aphasia & dysarthria

schizophrenia & schizoaffective & schizo-spec

brain injury

dementia

amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), huntington’s, frederick’s ataxia, etc.

tracheotomy

locked in syndrome

n so much more not listed here

[autball]

We. Can. Hear. You.

It’s AAC Awareness Month! AAC (Augmentative and Alternative Communication) is more than just high tech devices like the one depicted here. It includes picture books/cards, sign language, writing it down, Spelling to Communicate - basically anything that conveys a message that is not speech. 

And anyone can use it! If you are non-speaking, unreliably speaking, not-yet speaking, or just find words hard sometimes, then AAC is for you. There is no “non-speaking enough” threshold you have to meet - if it makes your life easier, go ahead and use it.

AAC is empowering. People routinely talk about autistic kids and adults like they’re not even in the room, even when they CAN speak. (Which, if you’re someone who does this, STOP IT RIGHT NOW.) This parent could have assured this asshole professional person that her son could understand til they were blue in the face, and they wouldn’t have been believed if he hadn’t been able to communicate it for himself. 

Communication is a right. Don’t let anyone try to discourage AAC on the basis of it hindering speech or “being the easy way out” or whatever other nonsense they come up with. AAC *enhances* communication, and everyone deserves the ability to communicate their needs, tell you their thoughts and feelings, share their hopes and dreams, and tell people to fuck off when needed. 😉

(Image description in Alt Text.)

[shepandem]

Hi. Saw on a recent post that you use crutches to walk and use AAC device. How do you carry the device? I understand that they can have straps (mine does) but don't they whack the crutches as you walk? You don't have to answer this if you don't want to. I'm just asking as I feel like I have to choose between crutches and AAC and I'm just wondering if you'd be willing to share your solution. (Sorry if this sends twice. My wifi isn't great so I don't know think it sent the first time)

Most of the time I just use a regular strap, and my AAC bumps my leg when I walk. If I know I’ll be walking a longer distance, I have a harness that I wear. It holds the device with two clips close to my chest, and keeps it out of the way. I have pictures of it a ways further down on the blog, it comes in really handy.

[chrome-barkz-aac]

i made this instagram post !!! there isn't as big of a community of AAC users on instagram so I thought I would share this on my instagram (@cytochromesea).

EDIT: i got an ask that states that not everyone knows what AAC is which is an oversight on my part, it stands for alternative and augmentative communication!

Image ID:

A light blue background with a rainbow and a cloud and some stars. There is a blue border collie with wings holding an aac tablet that says I love you! Text reads: AAC etiquette. Do’s, Don’ts, and other stuff. By cytochrome sea.

The same background appears in every following slide. Text reads:

AAC is my voice! It is not a toy or accessory

Don’t touch my AAC without my permission

Don’t take my AAC away from me, for any reason (joke, punishment, etc)

Don’t press buttons randomly or flip through my communication cards without permission

How would you like it if I randomly poked you on the mouth and throat (or on your hands if you sign)? It would be unpleasant, so don’t do that to me

Some AAC users can speak sometimes. It is not your business why someone can or cannot talk

Don’t ask questions about why an AAC user cannot speak. 

Do let us communicate however is best for us in that moment

Don’t ask us if or when we will be able to speak verbally. It’s not your business 

Do not value verbal speech more highly than AAC. Any communication is good communication

Some of us never talk, either, and that’s ok! Those of us who can talk sometimes are not better than those of us who can’t. None of us owe you an explanation for our use of AAC.

Don’t look at my screen until I show you. It feels really invasive!

It feels like when someone is looking at your phone screen over your shoulder, so please don’t do this

This applies to low tech AAC as well, don’t look at someone’s cards or letter board until they show you

You have the dignity of forming your thoughts in your head before you say them, whereas my thoughts are all on display. Please afford me the same dignity that you get automatically.

Don’t shame someone for not being able to speak verbally. It makes us feel horrible

We are real people with thoughts and feelings. Please treat us with kindness. 

We are trying our best

Don’t shame someone if their device mispronounces a word. It’s quite literally out of our control.

Other Don’ts. Don’t

Don't Treat an AAC user as childish or stupid for not being able to speak. Our ability to speak does not define our worth

Don't Show frustration at the way someone communicates

Don't Make comments about how fast or slow we communicate

Also don’t…

don't Act surprised when we swear or talk about adult topics like sex, drugs, or violence. We are not pure uwu precious smol beans, we are normal fucking people

don't Assume what is “wrong” with us. There are about a hundred reasons for someone to use AAC and you probably aren’t the expert in any of them.

“OK, so what CAN i do?” im glad you asked! When interacting with an AAC user, DO…

Ask us how we prefer to communicate and support us as you are able

Assume that we are competent

Talk to us with the same respect, tone and vocabulary that you would for any one else

Give us money (this one is a joke)

Understand that AAC grammar isn’t perfect and we are doing our best

Is it rude if…

I can’t understand your device? Not rude! Misunderstandings happen all the time in any conversation, just be patient as you would normally. 

I want to complement your AAC? Not rude!

I ask to see your AAC and understand how it works? This isn’t rude if you are already talking about AAC, but don’t ask random strangers this. They don’t owe you an AAC tour. 

Thank you for listening! This post is for the community! If you are an AAC user, let me know if I missed something in the comments and I will pin it! I hope you are filled with peace and love and I hope something good happens to you today! End ID. 

[osokasstuff]

i find the idea of not giving AAC users access to swear words, sexual words (or perceived as sexual), etc very very very offensive. the idea of just... taking away some words from someone vocabulary sounds offensive itself.

like. you can't literally take away words from speaking people. you can't erase them from their vocabulary, you can't erase them from their mind, you can't physically shut their mouth when they use words that you dislike. no matter what the reason is and how based your dislike is. you can't take away an opportunity to say a slur from speaking people who can't reclaim it. you can't take away an opportunity to say a curse word from a child you think shouldn't say it. etc.

when people say things they shouldn't, other people communicate with them about it. i know these communications often take a wrong way (like children are just scolded off and prohibited to use some words without explanations). but these communications at least happen. (and i wish they to be meaningful and fight for it). same with AAC users. if AAC user says something that they shouldn't (like slur they can't reclaim), people should communicate with them about why it isn't appropriate and not just take away the very possibility to say this word.

sometimes i think some people just want to control what others say and only physical impossibility to do this with speaking people make them to find other ways. and when these people who want to control what everyone says get the real opportunity to do it (like remove some words from AAC users), they use it happily.

[retrogamingblog2]

[trans-axolotl]

PA DOC Sued for Discriminating Against Person with Disabilities: The Right to AAC in Prison

there was a recent press release from Disability Rights PA about current litigation happening in PA that is trying to ensure that John Topper, a man with Huntington's disease, can access an Augmentative/Alternative Communication device while incarcerated.

Currently, the DOC is denying him all access to any communication aids, forcing him to "communicate by typing notes on a tablet and passing it back and forth with the person he is attempting to communicate with. This tablet breaks frequently, and prison staff regularly prevent him from bringing the tablet with him everywhere in the prison...After returning from the hospital, the DOC denied him a working communication aid for ten days. As a result, he was only able to communicate with psychiatry staff via thumbs up and down gestures."

this has dramatically impacted Topper's wellbeing: " 'This has been such an emotional and mental struggle for me daily. Day-to-day routines are very hard without a means of effective communication and I have to struggle to have my daily needs met,' said John Topper, the plaintiff in the case. "

Topper cannot access healthcare, daily programming, or stay in contact with his family members. Prison staff refuse to provide any forms of communication aids for daily interactions, making it difficult and sometimes impossible for Topper to request things like toothpaste, toilet paper, or other daily needs. This is cruel, harmful punishment that highlights the types of carceral violence that disabled people face while incarcerated.

This lawsuit is suing to get Topper daily and continuous access to an AAC text to speech device. His counsel already bought him this device and the prison has it available, and yet they refuse to give it to him for pointless and arbitrary reasons. They've told Topper he has to choose between a wheelchair accessible cell and a cell with an outlet, they've told him that they were making his current tablet accessible but then said the only accessible adaptation they could add was a screen-reader, which his does not need, and have threatened and taken away his current tablet many times. The cruelty is the point.

It's vital as disabled people that we have solidarity with those most targeted by the state, and that we fight for our comrades currently incarcerated. Prisons are disabling and prisons target disabled people: we need to fight to make sure our comrades can get their needs met, and we need to fight to free them all!

keep an eye on Disability Rights PA and Pennsylvania Institutional Law Project for updates about Topper's case and for any steps the public can take to support him. I've reached out to ask about how to send letters to him/info for his commissary fund; I will update this post when I get more information.

disability justice means free them all!!