AAC chatting

the full cause of ms isn't known. there is a genetic component (my grandfather had it), which, when combined with a viral infection, can sometimes lead to the development of the disorder. this is what happened to me, i got shingles (at 22 which is crazy rare btw) and it triggered the disorder

there are multiple types of ms: relapse remitting, primary progressive, secondary progressive, and acute. rrms is by far the most common, which sees "attacks" which is the onset of symptoms and corresponds to developing lesions in the brain, and remission where most if not all of ones symptoms go away. ppms, which is what my dr suspects i have and is much rarer, does not have periods of remission, symptoms just progressively get worse. spms sees a period of attacks and remission followed by a steady progression, and acute isnt super common but sometimes people develop one or two lesions out of nowhere but they heal themselves or don't develop further, often also a result of viral infections

while there is an established set of symptoms very common with ms, basically any neurological symptom under the sun can be attributed to it, from migraines to seizures to full blown paralysis

while chronic pain can be present for a lot of folks with ms, not everyone has it. they can still have extremely debilitating symptoms like vision issues, muscle weakness/spasticity, limited mobility, fine motor control issues, insomnia etc etc. the main reason i use my wheelchair isn't chronic pain (which i do also have to be fair), it's muscle weakness. my legs get so weak i can't move them if i stand/walk too much. ms can be extremely disabling without any pain at all

lavender and plant emote

my instagram post for AAC awareness month!

a comic about aac

Actually, I'll just make a full post on why limiting symbols for AAC users is bad

First of all, you do not get My perspective if you are not an AAC user. You do not get My perspective if you do not use AAC full time. You do not get My perspective if you do not use symbol-based AAC.

I am someone who uses AAC full time, and symbol-based AAC specifically in public (typing is quicker when at home). I know many people who use symbol-based AAC as their only form of communication. Other people can add their own opinions, but please know you might not have the same experience I and many others do.

Symbols are vital for many AAC user's communication needs. They might rely on symbols since it's quicker and easier for them, they are low vision/blind and need symbols since the words are hard to read, they are dyslexic, alexic, intellectually disabled, or cognitively disabled and struggle to understand the word in written form, or any other reason.

I am not someone who relies as heavily on symbols as some other people, but many people do for the reasons listed above + more.

Someone might need a specific symbol for any reason. They may need higher contrast, a symbol that more clearly symbolizes what they are looking for, a symbol that isn't complicated, etc. Hell, sometimes only one symbol for what they are looking for exists, so they need to use that one.

Limiting what symbols someone can use on their AAC is borderline a form of censorship imo because of how required it is in daily communication. Just because you don't like a symbol for whatever reason it doesn't mean you should take away someone else's communication.

I've noticed this especially in the Discord emoji making community (people who make symbols for AAC usually understand what I am saying), people will seriously GET you if you want to use one person or another's emojis as AAC symbols. (Seriously, that community is a toxic hellhole and everyone hates everyone. It's miserable.)

uhh idk, i haven’t seen a lot of suggestion posts for what buttons to add to your AAC so i made one. here are my suggestions for super basic buttons

GENERAL

- hello, goodbye

- yes, no, maybe, i don’t know

- sorry, (it’s) okay, please, thank you

- who, what, where, when, why, how

- like, dislike, love, hate

- this, that

- up to you

- by the way

- excuse me

- is that okay?

- what’s up?

- i don’t think so

- do you have any ideas?

- what were you going to say?

- what do you mean?

- i need help please

add an acknowledgment section for phrases that show you’re acknowledging what people have to say (oh, yeah, that’s interesting, cool, etc.)

ADVOCACY

- i don’t like this/that

- that’s not okay

- that’s a slur

- thats transphobic/homophobic/racist/sexist/ableist/etc.

- that’s rude/fucked up

- intended or not, you’re being rude

- it’s ableist to take away someone’s communication device, either by force, or by asking them to stop using it.

- autism is not an intellectual disability, it’s a neurodevelopmental disability, it can come with commorbid intellectual disabilities, but that isn’t inherent

- no, not everyone is, quote unquote, on the spectrum, autism is a serious disability, not everyone has it.

AAC

- i’m having a verbal shutdown (depends on the user)

- i don’t want to verbalize right now (depends on the user)

- AAC stands for augmentative and alternative communication

- AAC is for anyone who needs or wants to use it

- i use AAC for/to/because… (depends on user)

- i would describe myself as [verbality label such as nonverbal, semi-verbal, verbalflux, selectively mute, etc]

- your verbality label and its definition

- please don’t look at my screen while i’m talking without asking

- please don’t talk on my behalf

- i am using buttons right now instead of typing, so i may be slower than normal

- sorry, i’m still typing

- please be patient

- my device needs to be charged so i can speak

image description: ten slides with a light blue background, rainbows, clouds and stars. text reads:

a note on "going nonverbal"

nonverbal refers to a permanent state of not talking. it means months, years, decades of no talking.

not being able to talk for a few minutes to hours at a time is not nonverbal. i don't want anyone to feel dismissed by saying this. not being able to talk is distressing. it is frustrating and scary. if not being able to talk for short periods is distressing, imagine how nonverbal people feel 24/7.

to quote one of my favorite movies "you keep using that word. i do not think it means what you think it means," the princess bride (1987).

when nonverbal people try to talk about their experiences, it is flooded with people talking about 'going nonverbal'. our voices get drowned out in our own community. it feels incredibly isolating and makes it really hard for us to be listened to or even find others who are nonverbal.

also, we have been saying this for YEARS. but every time we bring it up, y'all act like this is a new concept. that just tells me you have not meaningfully interacted with the nonverbal community, or the MSN/HSN community. it is not new, y'all just don't listen.

what to say instead of "going nonverbal". speech loss / losing speech / speech loss episode. vocal rest. verbal shutdown / vocal shutdown. words are offline. verbal loss. PS - vocal rest is GREAT if you don't want to mention why you can't speak, or have to mask. musicians say they are on vocal rest all the time to protect their voice before performing.

"But Chrome! that doesn't sound as serious as "going nonverbal!" people won't take you seriously either way, sorry. i have had periods of my life where i can talk sometimes and periods where i can't ever. they aren't going to take you seriously if you use our language because they don't take you seriously at all. because of the ableism.

"my therapist / SLP / doctor says 'going nonverbal, though -" that doesn't mean it's ok. professionals don't always listen to the people they are attempting to serve. they should, but they don't. because of the ableism. and racism, sexism, etc.

the autism community already has a problem with driving out higher support needs autistics, nonverbal autistics and especially autistic people of Color. you can be part of the solution. you can support marginalized autistic voices and make your community safer and more inclusive. but first you have to listen.

thank you for listening. i hope something good happens to you today!