the speech loss experience @our-unspoken-experiences - Tumblr Blog

introduction!

[PT: introduction! /end PT]

welcome to our-unspoken-experiences! this is an experience and confession blog for anyone with speech loss and/or difficulty communicating

this blog is aimed towards anyone with temporary or permanent speech loss, mutism, disorganised communication, alogia, aphasia, and more

this blog welcomes rants, cool things that happened to you, culture-is posts, and any experiences (positive and negative) related to speech and communication loss :)

mod's name is sol! please use our name in place of 3rd person pronouns

inbox rules

[PT: inbox rules /PT]

our inbox is open unless otherwise specified

mod holds every right to not answer certain asks, and delete anything unrelated to speech and communication difficulty

you don't need to start asks a specific way, but if it'd help, you could start with "my experience is," "semiverbal culture is," or any variations you can think of

(you can also just say hi :)

if an ask has seemingly triggering content, it will be tagged #[thing] and #tw [thing]

if you share images without descriptions, they may take longer to be posted, but we'll still try to describe them

(more to be added)

current signoffs:

Last night I had a bad dream themed around people misusing the term nonverbal and being unable to correct them because my hands were too shaky to write ☹️

^

#that's not a good dream :/#we had a dream we used our aac in public and were like. really proud of ourselves #i don't remember the rest #hope you have better dreams ^^#our unspoken experiences #speech loss #verbal loss #communication loss #disability #dreams

I feel so guilty because I just don't really care about losing my ability to talk, the only reason it bothers me is because it's not an active choice I make (and it's scary when you're not in control of you're own body)

I know how much this negativly affects other peoples lives and I guess I just feel like it's not fair to them that I'm okay with not speaking ever again.

^^

#most of our distress comes from not being able to mask anymore #but we also just don't want to #we don't NEED to speak. there's no rules about it #idk #our unspoken experiences #speech loss #verbal loss #speech issues #disability

i really hope that one day it's okay that i can't speak

and people won't ask for my responses to things. or constantly expect that i have something to say. and if all i can say is "okay" then they'll continue their conversation

i'd ask for patience (AAC takes centuries) but sometimes i just want to live in silence

sometimes i'm just tired.

^

#<3 #our unspoken experiences #speech loss #verbal loss #aac #disability

or general communication (lexicality? i think we're semi-lexic) is going down, and a lot of the time we can't interpret any text without our screenreader

i'm glad we have it in the first place, but it's so rare that we find any text in plain text and plain language. if we're using it at all, it's cause really need it. and it's so disappointing when it breaks every few sentences

it's also just isolating. i physically can't read that. i can't join this conversation. it's something i am barred from

i don't know what to do there.

– 🌒

^

#our unspoken experiences #speech loss #verbal loss #communication loss #semilexic #disability #🌒 anon

we can't make small talk anymore

like we physically can't. the words won't come out of our mouth. and on one hand it's fine, cause i hated small talk anyway, but it's also really awkward and distressing.

i didn't ask for that ability to be taken from me.

– 🌒

^

#our unspoken experiences #speech loss #verbal loss #speech issues #disability #🌒 anon

pixierainbows

Is really hard to think , and impossible have actual conversation , about things Pixie not have picture buttons for on Pixies AAC device .

Have page of “ identity “ words NOW , Guardian Wizard help whole whole lots make it . And also get words from @windwardstar on tumblr too ( thank you ! ) . But not have any that before / during Pixie actively transitioning . Also not help explain Words Pixie still not understand for self .

Pixie *could* be trans , although that label make Pixie feel sick when used describe Pixie . Pixie transitioned , medically and socially , Because Pixies doctor and therapist said that fix what wrong with Pixie . Went from one ( wrong ) gender “ box “ to other ( also wrong ) gender “ box “ . ( see note 1 ) And yes some things got better . But also , many things got worse . Especially socially . Especially the more Pixie felt urgent burning need to push back against be forced to identify as trans - ** “ box “ .

Nonbinary was not talked about to Pixie , was not offered as possibility , until much too late . And anyways . Nonbinary be too much abstract contradictory chaos for Pixies “ black / white “ autism brain .

So many different words , so many different identities , all kinds of different ways to be nonbinary .

Pixie not can understand . And for honest , sometimes not really want try because too hard . Sometimes even wish “ conversion therapy “ be not abusive and actually worked … ( see note 2 )

note 1 : Pixie will not tell which “ box “ , or what Pixies agab is . Please to not ask assume or try guess .

note 2 : this NOT about “ inside “ transphobia / exorsexism , is about be cognitive disabled in ways that affect ability to understand complex and abstract ideas . DO NOT DERAIL !

hellooooo

please send us asks.....this blog is starving

we will take anything. you rant about something cereal or show off your aacs

we might show off our aacs.....theyre very cool

happy disablility pride month :)

#feeeedd ussss #we should post about being semilexic #should do that.#speech loss #communication loss #mod posting

five-thousand-loaves-of-bread

defining nonverbal person’s reality n experience for them when they tell you otherwise even though you think you doing them a favor n the nonverbal person just don’t know what they experiencing n saying is… still speak over nonverbal person actually.

it still speak over & saviorism. n in some cases even gaslighting, n not using that word lightly.

have had verbal speaking people (plural!! many occasions!) so desperately think they doing me favor when they tell me “no actually you not struggling with communication 🥺you great with it” when am saying hey being nonverbal naturally mean am struggle w communication, n have many other language cognitive struggles that make communication even harder.

some they keep insist even when tell them no, assume am say it because am just… unconfident n low self esteem n falling for deficit language n also assume have never heard of well, autism advocacy for past decade (bc context of convo be abt autism).

n have had some actually argue with me about… my own experience? n when naturally as person who struggle with communication (that they conveniently deny, while said struggle actively helping them), cannot argue back as easy as they (person w communication privilege) do, try get other people help explain, they then call me… deploying other people n dogpiling them.

this still speaking over me even if they mean well, even if they seem to use advocacy language. because no matter what they claim to be saying n supporting n believing, thru their actions they been ignoring what am say, refusing listen to me, denying while same time benefiting from my struggles they denying, assuming can’t possibly know myself or historical basis / bigger concepts n they as verbal person know more, n paint my own accessibility needs for said struggle as unfair advantage harming them. that still ableism.

aactailmon

I think the thing that bugs me the most about using AAC is the fact that most AAC prioritizes efficiency and speed over personal expression. Of course I don't think this is by design or is intentional, but it is a side effect of the general public not really knowing how to interact with AAC users and expecting us to match their verbal speed. So instead of being able to communicate the way that I want to communicate, using AAC feels like a constant uphill battle of trying to get my words out as fast as possible, lest the other person becomes impatient.

It sucks because I'm generally a very articulate person. I like using words in ways that feel very personal to me, and I'm sad that using AAC makes me feel like I'm being stripped of my ability to express myself fully in that regard. Which is why I wish it was possible for me to just force my way out of my speech impairments-- I'm aware that's not possible, but I know myself and others around me get very tired of my deficits. Every day I wish that solving this was as simple as just "speaking more to get better at it," but it's not, and it feels like I have no good alternatives.

maes-aac

This is something I still find myself struggling with. I continue to realize just how much AAC is not a sudden, overnight, magical fix for my communication struggles, and how it is a learning process for the AAC user and everyone the AAC user communicates with. I can't stop prioritizing and forcing speech over reaching for and using AAC due to it being much slower than speech (especially when one is still new to using AAC, still needing to fully familiarize themselves with using their AAC and that's if they don't change things around constantly to try and figure out what is best for them). And the pressure I feel from communicating with others to use my AAC fast enough doesn't help.

I can't stop feeling how inconvenient AAC actually is and can be sometimes because of much it does not match verbal speech speed. I can't actually be fully articulate, can't actually take the time I do need in order to process the other person's words, think, and then put my words together with my AAC (which is the time I need when using mouth words anyway), and it's just beyond frustrating.

I keep wondering how I can make it easier, but I am just so tired of having to teach others, so tired of being the only person around me/in my life who understands this exact struggle. It makes me wonder if AAC is even worth it, which is a shame because I love my AAC, I love being an AAC user. Literally these days I have been sometimes wishing that I could just speak without any issues, but speaking as primary communication is just not me and has never been.

chrome-barkz-aac

i dont think non aac users will ever understand the helplessness that we feel in regards to communication.

your device pronounces a word wrong. laughter. its fine, just go with it. but thats not what you meant. the meaning is changed. you type it differently, hoping to trick the program into saying it right. it doesnt.

your device bugs. you have to use a voice that does not match how you feel inside. you feel dysphoric like you did before you went on t. laughter from others. its fine because it has to be.

someone makes a bigoted remark to another person. you are typing as fast as you can - "that's not okay, you need to apologize" - your hands are shaking with the effort to be fast. the conversation moves on before you can hit "play". harm has been done and you have no control over it.

you navigate through a few folders. you want the word "sun". you keep hitting the button next to it, cloud. you hit delete. try again. you hit cloud. delete. try again. you hit cloud. over and over again. your body seems to have a mind of its own. it is frustrating. it is so so easy for everyone else.

your tablet is in the other room and you are trying to fingerspell. you want to sign "d". you see the shape your hand needs to be in in your mind. you keep signing "f". your hand will not make the correct finger go up and the rest go down.

the other person is trying to be patient. but theyre not. theyre frustrated. theyre trying not to show it. theyre frustrated. theyre frustrated. it radiates out from their body and makes your blood run cold. you're nauseous. you are always waiting for someone to lose their patience. it has happened before. it will happen again.

"do you understand how hard it is for us to get used to this" they say. youre about to cry. and if you, the aac user, if you show frustration, anger, sadness, anxiety, about not being able to communicate - you are difficult. "if you tried harder to speak, we wouldn't have these problems" - it stays unspoken but you hear it echoing in their words, on their faces, on the exhale of breath as they put their hands in their lap and call you "sweetie."

positivelyqueer

Is good thing when people ask how want to communicate for disabled person. Much much more nice have quick conversation @ start than spend whole time misunderstand or guess or pretend or be uncomfortable. (Some) Disabled people yes can tell when u too embarrassed to say don't understand & just pretend & is frustrate.

2 part: how u want me (asker) 2 communicate with u & how u want 2 communicate with me.

example like: 'is okay if I talk?' 'Would u like me to write down for you?' 'Is it easier if I'm facing u?' 'How would u like me to explain to u?'

&

'would you like to use your AAC device?' 'Can u show me on ur board/cards?' (<- for people what is help to have prompting.) 'Would you like someone else for speak ur behalf?' 'I be happy wait for u 2 type' (not question but is yes kind assurance.) 'Is okay if ask ur caregiver how u communicate?'

is also good what ordinary communication strategy repeat back what people say to make sure understand. 'yes is frustrating when people not listen to you.' 'Yes can get ur drink bottle from fridge.' 'Do you mean [summary of what said]?'

Radio write from perspective autism & nonverbal (& hearing) & often what confused for d/Deaf. Much would appreciate other disabled people input who what have communication differences/challenges.

p1xelpc

Hello! I hope it is ok if I ask you a few questions about AAC?

I am doing mentoring in a school and the student I am mentoring uses AAC. What would be good for me to ask them? I had some questions i am thinking of asking:

How they want to interrupt me if they have a question or want to say something but need time to type/make sentence.

How to tell me if they have lots to say that might take multiple goes of typing/creating sentences and needs me to be patient and wait.

Do they want things they could ask for in college/university/work specifically to do with AAC or do they want me to ignore the AAC.

I do not want to be rude, and i do not want to make their AAC a focus. But i want to be able to listen to them as best as i can. And you might have things i can ask that are individual to each person that would be good for me to ask them. Or tell me some of the things i want to ask are stupid questions or would be rude or mean.

Thank you :D

hi ! always okay ask pix whatever questions have :)

questions you say look like good but do not fully understand the 3rd one

some questions would recommend asking:

do you prefer to be given options or leave questions open ended?

do you prefer talking about your aac or ignoring it? / do you like talking about your aac?

is there anything i can do to make understanding me easier? [ suggestion ideas if needed: do you need me to write things down / talk slower / split up my sentences more / use plain language / explain tone? ]

is there anything else i should know about communicating with you? [ suggestion ideas if needed: is ecolalia communication or should i ignore? are there signs of need break? are there home signs / what they mean? ]

are there any other accomodations i can give you? [ suggestion ideas if needed: breaks , having charger available , sensory changes ( like light dim or background noise )]

would you like me to explain these needs to other people if needed?

a lot of aac user have additional disable so is good ask about more than just expressive communication issues. presume competence regardless of any these answers. talk to them like would anyone else while keeping their needs in mind

also important just let them know can always tell you when need something , even if you not ask first

other aac users feel free add to this !

frog-sorta-speaks

For question 3, I think it means asker is helping this student with prepare for college/university/work, and would want to know if should include AAC use in that planning and help think of accommodations to ask for related to AAC, or if should ignore AAC in that planning.

Frog think this is good question! Answer will depend on a lot of things, so is good to know what the person want. (If am wrong though, anon free to correct)

Other question could be: Do you want me to keep talking while you type, or do you want me to stop talking and wait for you to finish? (A lot of AAC users will want you to wait, but some don't want that, so is good to be sure)

magiccarpetman

I’m beginning to develop some militant opinions on AAC use as a one-size fits all band-aid in schools.

If every nonverbal kid in your school is given a tablet and the same AAC app regardless of their personal needs and abilities, every adult who regularly interacts with those kids needs to have spent, at minimum, an hour playing around with the same version of that app so they know what it can and can’t do and how the buttons work.

Especially because I keep seeing scenarios where the communication options a kid uses at home are different than the ones provided and enforced at school. In those cases especially, it is your job as their teacher to understand the technology better than they do so you can teach its use.

If you wouldn’t duct tape someone’s mouth shut for repeatedly making annoying noises with it, you shouldn’t take a kid’s AAC device when they choose to use it in a way that annoys you.

I still believe in the above when other students are distracted. As much as possible, the consequence for that should be the same you’d give to another kid being disruptive and noisy in class.

If you want kids to feel secure using a specific AAC method to ask for help or talk about their feelings, access to that method cannot be contingent on good behavior.

This has been my angry teaching rant, with seven hours left of the school day.

faerydelle

for those who don’t know, selective mutism does not have to happen ALL the time. i have selective mutism and I can occasionally speak in situations i can’t normally. And sometimes in places I do speak, suddenly my vocal chords are ripped away from me.

It also doesn’t just happen at school, and adults can have it too.

For me it’s also people specific. It depends who I’m speaking to, who’s in the room and how safe I feel with them.

the-attaarmadhaj

I find it can be topic specific aswell. Like. I'm less likely to stop being able to talk if the topic of conversation is cephalopods. It can also come into effect if the method of conversation is new, for example, I often struggle a lot with video calls. Not all video calls, and sometimes I can do a video call with a certain person one day but not another. But isn't has also gotten easier the more used to the whole sensation of video calls has become.

And it doesn't always manifest as a complete stop in talking, it sometimes manifests in talking really quietly or in short practiced and repeated phrases, because the brain isn't letting the noise come out any louder or isn't able to think of any new words or phrases.

Also. Sign language isn't always an option to get around selective mutism. I've read a lot of fics where there is a character who is selectively mute and uses sign language, which is fine, for some people and in some cases, that does work. But sometimes it shuts down all forms of communication, even silent ones. And in those cases, the best way to have a conversation is to remove yourself from the situation and resort to written responses.

And also, even if someone is selectively mute, they're not gonna always be quiet and meek, we do have personalities outside of "cant always talk", you know.

discombobulated-mermaid

I HATE when people say "they communicate just fine" About a nonverbal person in their life.

No. How do you know that for sure? Unless you are inside that persons head and know everything they want to say, and know that all those things they do say...

Do not tell me they communicate just fine based of a presumption.

The thing about communicating is, if someone cannot communicate effectively, there's a good chance they also can't communicate they cannot communicate effectively to you!!

And if they have told you they don't feel like their communication with others is as functional as they want, then you tell them that they communicate just fine, stop making assumptions…

They communicate just fine because the only things you see them communicate are things they are successfully communicating!! Obviously!!

pixierainbows

Pixie get told that all the time . and . is so very invalidating of Pixies severe language disability . And . Is absolutely not a good or positive thing to say . even if is intend to be compliment , it really is not .

What it do sound like is that . the person is claiming to know Pixies disability better than Pixie self . and . that is so not okay to say about anyone .

dailymanners

When having a conversation with others, make sure everyone in the conversation is getting a chance to speak and everyone who is speaking gets a chance to finish their thought. Avoid speaking over others or cutting others off. Even if you do accidentally interrupt someone before they had a chance to finish their thought, give them a chance to finish by saying something along the lines of "sorry for interrupting, please continue what you were saying"

And, if you do notice someone in the group keeps trying to speak but someone else keeps speaking over them, or someone else speaks first every time they try to open their mouth, you can create an opening for them by saying "what did you want to say?/what was it you were saying?" or you can look at them after someone else in the group has spoken over them / cut them off and say "go on, I'm still listening" to make them feel heard and included.

Ideally in a conversation everyone deserves equal speaking time, and everyone deserves to finish their thought. If someone is dominating the conversation by not giving others the chance to speak and interrupting others before they can finish their thoughts, it can give the impression that they view what they have to say as more important and more valuable that what others in the conversation have to say.

Likewise if someone isn't getting the opportunity to speak or finish their thought due to always being spoken over, it gives the impression that others in the conversation don't value what they have to say, that what they have to contribute to the conversation isn't as valuable or as important as what those dominating the conversation are contributing.

courtkossai

especially problem with lack of mouth speech . people see SGD device* as much much lesser over voice , devalue word and language difficulty , and , in general lack any and all respect .

many people also see time when SGD user type , as time to talk with someone else . but this will only break concentration of SGD user , and is just very rude anyway . that time might be silent , but not free to talk . just make SGD users feel as if no one really care to hear thoughts , easier to give up and just not try .

*specify SGD device over other AAC because different methods have different uses and problems , but many still in common . if any kind of AAC user look for words , that is not time to talk . need to have patience , yes , much more than would need for mouth speakers .

pixierainbows

So much this . It got so bad , so intensely frustrating , that Pixie now almost never even try communicating using AAC device with people what are not family . Pixie will make a family person translate Pixies home sign , or , more often , just say Nothing …

is so much hard , Painful , isolating , dehumanizing …

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