#sorry for long post know it inaccessible but literally do not have ability write short…

[five-thousand-loaves-of-bread]

my issue with right now AAC advocacy, nonspeaking (autistic) advocacy (from individual advocate, to organization like communication first and assistive ware) (mainly outside tumblr), can all be summarize by their one phrase:

“presume competence.”

“wait, what wrong with that? isn’t it good? don’t they follow that?”

half yes. idea is good, hope everyone follow it, must: all disabled people should be give tool & help to learn, all diagnoses, all amount of struggle.

yes, “even” that person diagnose with severe autism & profound ID, who never speak or look like show sign of understand any language, who scream and make noise and run away all time, who give self & other many injury and broke bone and concussion.

but. me problem not with idea. have problem with, use two big complicate word as basic key important idea for movement: a movement for those who hard speech & communication.

this group, naturally mean have many people (more than “average” amount), who hard communicate, hard communicate big words, hard remember big words, hard understand big words.

“then just change name or explain idea, why say it summarize problem with entire movement?”

on tumblr, AAC user community, semi- & nonverbal/nonspeaking community, see lot people who not just struggle with mouth say word, but also with communicate hard. although less, and most borderline or mild, but do have a few people with ID who talk about ID. people with many layer disability, more affected. in fact, in some corner, we loud & seen here in community.

but. outside tumblr—like twitter, where majority AAC & nonspeaking advocacy get most hear, often influence even new AAC apps and AAC company and non profit and (US) law and (US) government groups. but also different organizations, and real life. so basically, people with bigger real life influence. this opposite.

it many life-long nonspeaking autistics with severe motor apraxia, who brain body disconnect cause mouth not able move make noise in way brain want. often diagnose with severe ID back when not able communicate, but now able full communicate, now realize have high IQ, use long sentence, complicate grammar, big words, who can “write right.” many who not be teach communicate or read, but able learn how read write, by self.

—who not speak because motor struggle, but “mind intact” (their word not mine), no fundamental expressive receptive language understand issue (edit: outsude not mouth speak), no intellectual cognitive issue?

they nonspeaking. they AAC user, or speller. yes, they deserve be in community. must be heard. people must realize this form of nonspeaking possible and many people like this. AAC nonspeaking community without them is still leave out people.

but. right now problem is: both them and allies, treat this form nonspeaking as only way be nonspeaking. all nonspeaking people like this. and what this group want (like be call nonspeaking and nonverbal wrong), need apply to all people who not able speak, because they seen as entirety nonspeaking community.

“all nonspeaking (autistic) people like this”—many times imply by never ever mention other “not speak” experience, but sometime even direct say (paraphrase). where my “not speak” friends who have expressive receptive language issues, who trouble communicate even with AAC, who don’t understand other and self communicate at all, who “mind not intact” (whatever that means), who ID not misdiagnose but is actual severe profound ID, who can’t learn AAC can’t ever functional communicate ever?

what about people who “not speak” not just because “motor but everything else fine,” but “motor AND expressive receptive language AND/OR intellectual”? people who don’t have all your abilities?

we not remembered. we not exist. we not talk about.

and this “ignore,” can be see in all area of their advocacy and movement.

the policing “no severe no functioning labels no levels no nonverbal ever they all bad no excuse”: all my friends who call own self by any of that been direct attack harmed many many times by people who say this, so no, there no “personal identify okay” exception. this silence us. anytime we mention how we dare call self, all what we actual say ignored, actual message ignored, and become argue over terms call us ableist, and lock us out block us crowd attack us harrass us—us with communication issues who words hard first place, and who often have big emotional regulate struggle.

harass us lock us out enough. of course we silent, of course we no longer write in community. of course “community” no have us, no one see us. no one know we exist.

the big words. complicate sentences. complicate ideas. everything confuse. overwhelm even parents without intellectual & communication struggles who want learn to help child. not to mention us, who “not speak” include receptive language issues and intellectual disability.

write enough big words. write enough complicate stuff. write enough confuse hard follow stuff. of course we who can’t understand that get frustrate. and stop read. stop be in community.

have ability write professional enough, write approximate closest to nondisabled people enough. not have ID. all advantages that make people listen you more, take you more seriously. but this advantage, or fact this even is advantage that some not have, they not recognize.

whether mean to or not. became “am nonspeaking and proud, but at least have high IQ mind intact and can write ‘normal,’ so still have worth still deserve listen to because still have those redeeming abilities.” —what about those us who don’t?

“what that do with term ‘presume competence’?”

presume competence key idea, root of movement & advocacy.

presume competence, big words, not everyone who struggle speak can say/speak/write/communicate these two words. not all can remember. not all understand. some, will never ever able communicate or understand these two exact words ever in life, even with best support most help.

key slogan of movement, inaccessible to group of people you claim advocate for. same group people you also ignore pretend not exist erase in your advocacy.

this how deep this exclusion and inaccessibility issue run in nonspeaking advocacy.

down to its roots.

[this about nonspeaking movement (especially outside tumblr) and people who do this exclusion + inaccessibility. this not say term nonspeaking bad or all individual nonspeaking person bad.]

#sorry for long post know it inaccessible but literally do not have ability write short… #long post #nonspeaking #nonverbal #actually autistic #actuallyautistic #loaf screm #discourse