#am in AAC user discord server where it does seem like there people from all these different tradition & belief & experience

[lavcommunicatez]

wish there are less people invested in one single narrative of nonspeaking / nonverbal identity.

feels like there many different “traditions” or something of nonverbal nonspeaking activists and each small community all says same thing, same origin story same definitions same words same talk points. and I understand this because we are all autistic! we are all echolalic we all echo language and ideas from the community we surround selves with. but find it really hard when echo words becomes ddogma becomes thing you can’t say differently and just assume everyone thinks same thing or else not really in group.

(going to try to use “nonspeaking” for first community and “nonverbal” for second community because that’s what each one of these communities usually prefer. language hard so sorry if don’t do this consistent.)

like if I go to one of I-ASC (international association on spell to communicate) conference or one of their neuro lyrical events online. as a nonspeaker since birth who does have experience of “learned language without having speech”, of people assume don’t understand anything until finally found way to express self that world understands, and people still doubt am really the one saying this. in some ways relate to these people much much more than people on here who mostly became nonspeaking later in life and have very different upbringing not raised as a person with a DD not grow up without speech. places like the I-ASC and the Spellers community and impAACt and local meet up group for nonspeakers feel like family to me, feel like my people who move and talk and live like me.

but. there things in these community that are very black and white. that just can’t relate to. don’t relate to mantra of “speech is motor, language cognitive” for example. or “it’s not about don’t understand or about I don’t want to, it’s about can’t make body do it.”. because my motor issues interact with language processing interact with cognitive stuff not able to neat separate. yes AAC is freedom but I still have to make a lot of compromises to express self with words. have to leave out a lot or (more often) add a lot unnecessary stuff because there things that brain stuck that just can’t say in a way people will understand.

think this is true for lots more nonspeaking people than organizations like these (which were started + run by speaking people and communication & regulation partners and SLPs) say is true. a lot of nonspeaking people in these communities encouraged by speaking people in movement to focus emphasize on “we don’t have intellectual disability we can communicate with words just as good as you can, the motor problems is all that there we don’t have any language problems .” because this is what parents and speaking autistics and well meaning allies/communication partners think is important. they think the way to value us and to say we feel and think and know and should have rights (which we should!) is to distance distance distance far far away from any associate with intellectual disabilities with language disabilities with cognitive disabilities with process differently.

so as long as can be acceptable enough nonspeaker to them they support. which does not feel like support. nonspeaking doesn’t mean non thinking but intellectual disability and language deficit and cognitive disability doesn’t mean non thinking too. and a lot of people in these communities do have more complicated relationships with language but are told by speaking people in these communities to not talk about that only talk about motor stuff or connect everything back to motor stuff. which doesn’t feel like support. feels like flatten make easier make more convenient.

and then when I go on tumblr and see the nonverbal people speaking out here. i started out not on social media mostly in offline AAC and speller advocacy and someone told me there was good community of autistics with good range of support needs on tumblr so I joined. and do find bigger range of autistic and nonverbal nonspeaking experiences able to talk about here. able to talk about mental illness & psychosis & dissociation (which even nonspeaking advocacy communities assume nonspeaking people don’t have these problems or not capable). able to talk about “challenging” behaviors that so so stigmatized. able to talk about language and cognitive stuff. able to talk about gender and queerness without be policed (a lot of professionals and communication support people in nonspeaking advocacy are weird conservative and don’t think can know our genders / sexualities even though always talk about presume competence. it weird.) just saw beautiful post about nonverbal trans experience with gender that I loved. really like that people with intellectual disability getting heard, that we challenge expectation to have “proper” writen language. speech therapy and even learning how to use AAC, learning how to use letterboard etc was always about correct every mistake, about fade prompting, about use grammar properly so other people think competent. and have been able to let go of that on here because the language norms are so so different.

but at the same time I feel like there lot more stuff that not useful. lot of focus on right words to say, a lot of calling out other blogs, a lot of trolls, lot of drama that really doesn’t exist in real life nonspeaking community. like frustrated when go in nonverbal or nonspeaking tag and most posts not about nonverbal people human rights or experience, but about words. specific about people saying go nonverbal, someone trying to say it’s good or someone trying to say it’s bad. every other post about someone ask for right word to say instead of “go nonverbal”, or list of other words to say. or people asking whether or not they’re nonverbal or semiverbal or lose speech. and even within nonverbal community on here lot more talk about words than about justice. or even about lived experience of be nonverbal. people forget that real world outside tumblr tags exist sometimes. that there people living without communication, people being deny communication, people in institutions, people without resources. and that there are ways to change that and to self advocate besides changing what word you call yourself.

not saying words not important. yes it is annoying and bad when people talk abouit going nonverbal and forget that we exist. yes am grateful to people who decide to change what word they call themself to not erase us. but frustrated with how there not really conversation, one opinion just take as The Nonverbal Opinion, just like how it is in offline nonspeaking / speller community.

not seem like these communities are interacting, are compare notes on experience are combine to synthesize into something better. into what community could be. community that leaves no one behind. community that doesn’t claim to speak for everyone, doesn’t claim account for all experiences but still says all nonspeakers exist and all deserve rights. doesn’t tell anyone “don’t talk about your experience with X because it doesn’t fit what we want to tell the world that nonspeaking people are like.” where everything able to be talked about without it ever make less true that all of us need respect and rights more than any one word / idea.

curious if anyone have ideas for how to make this community.