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my frustration with “going nonverbal/nonspeaking” (as a fully nonverbal person)

transcript: my frustration with “going nonverbal/nonspeaking” (as a fully nonverbal person)

this written for instagram because of this post. but thought tumblr may like it too. “you” means general you, no one specific.

the instagram post and this on wordpress

this disclaimer is for instagram but also for anyone new to this discussion:

in full honestly, don’t know how to write this. am tired, language and complex ideas too much at time of writing, and general exhaust at having to argue same thing over and over again and justify own existence. tired of being minority within minority, wish there are others to do these work for me so i don’t have to do it all by self, singlehandedly advocate for everyone (not to mention problem with that—i can’t speak for everyone).

so honestly, if you don’t have anything nice to say, especially if you speaking (yes, even if you lose speech. include you), just don't say anything at all. move on.

online actually autistic community (AAut) dominated by white, lower support needs. level 1, speaking, late diagnosed, high masking autistics. find people like you is great, what not great is you treat your very narrow community as “voice of all autistic” and your experience as ultimate autistic experience. i write plenty about that, many more elaborate than this, if you not familiar with this concept.

many people in this community experience times when cannot speak, sometimes because overwhelm, shutdown, dissociate, or anxiety (situational mutism), but do not struggle with act of speaking rest of time (some struggle with speech all the time but still can speak - more on that later). the community call “going nonverbal/nonspeaking,” or even “when i am nonverbal nonspeaking” (not talking about those nonverbal as child and verbal now older), after clinical term “nonverbal” (nonverbal autism) and term coined by apraxic nonspeaking autistics “nonspeaking.”

both of which talk about it as an “all the time” experience.

when i search nonverbal or nonspeaking because i want community too, want see people like me too, two category i see: 1) parents of nonverbal nonspeaking children, whom can’t relate to because age, who can’t write own experience because their age and developmental ability. and 2) overwhelming amount of speaking autistic talk about going nonverbal going nonspeaking.

and the very very few fully nonverbal nonspeaking voices. drowned out. cannot find anyone.

nonverbal used to be term to describe us, people who can’t speak or cannot functionally speak beyond few words. medical term, alright, so some of us don’t like. so some of us reject that and create term all of our own, called nonspeaking. created by nonspeaking autistics with severe apraxia and brain body disconnect, describe their own experience of able to think in words able to spell out words (with great dedication and work and support), just cannot do that with mouth. their term. they create.

and you take it? without knowing context? without reading anything by those same nonspeaking coiners?

when is last time you purposely seek out nonverbal nonspeaking voices? when is last time you accidentally came across us? can you name any nonverbal nonspeaking advocate that talk about their experiences? one? two? three? a BIPOC person, a (specifically) Black person? a Black woman? a trans person? a physically disabled person? a person not from western world?

same narrative over and over. “i can speak for nonverbal autistic i understand their experience because i am autistic i can’t talk sometimes” no you cannot. as someone who was able to speak when young who lose speech (”go nonverbal”) but now have no speech to lose because full time nonverbal. no the experience not the same. not comparable. you gain it back. i don’t. you can explain with mouth words what happen when you get out. i can’t, i only have AAC. countless nonverbal nonspeaking people without AAC or sign cannot, at all. you never experience daily small and big struggle of casually being nonverbal all the time.

your experience of lose speech unique from my nonverbal. but if you so insist to compare and equate, you only guest to my experience, my daily life.

“when i go nonverbal and no one understand so have to force to speak” i cannot force words out. know you don’t mean to say this, and not saying you at fault for this, but nevertheless accidental perpetuate and reinforce idea that anyone who don’t speak can just be forced to speak if try hard enough. but often not how it works. and this exact harmful rhetoric devoid and delays nonverbal nonspeaking people given access to AAC, because “need try to force words out first, AAC unnatural so last resort.”

this may be new concept for you. new concept to instagram, to tiktok. to other places. it may seem i only one with this problem, “i once saw a nonspeaking person’s account and they don’t have problem.”

yeah, because we are not monolith. some nonverbal nonspeaking people don’t care. some nonverbal nonspeaking people may even welcome “go nonverbal nonspeaking” or “when i am nonverbal nonspeaking.”

but don’t be fooled into believe i only one. have many nonverbal/nonspeaking and/or higher support needs friends on tumblr, who talk about this who have been saying this for years. *years*. years before i joined. i am not creator, i only bring message here, because many of us are too high support needs too disabled to do anything else. many of us only stay on our small corner of tumblr because it most peaceful, because at least some listen, because least hostile, because need to defend our experience against our own community the least. (but it happens less doesn’t mean it doesn’t happen, we still exhausted.) many of us only stay on our small corner of tumblr because that all we can handle, or because we not allowed or shouldn’t be on other social media because age or abilities or both.

i cannot handle conflict i do not do well and i shouldn’t be here. but if not me, who else? if i don’t do it, who else is going to?

some nonverbal nonspeaking people and parents of them may question, why you start debate about useless term when so many nonverbal nonspeaking people don’t even have access to communicate, real problems. to that i say i do those work too. and to that i say this is real problem too, because am autistic so online actually autistic community should also be my space too but it not. but it hostile. because am lonely because seeing yourself so crucial because don’t know anyone in person like me don’t have any friends in person like me, so i go online to find people like me and i cannot because no own term to search and what used to be term many people without similar experience insist they understand and can speak for me because they say we have similar experience. because this aloneness and the unique difficulty from being full time nonverbal and the struggle of future and the unique mistreatment from both outside but also inside community have drove me over edge many times and it is presence and knowing their presence of my tumblr nonverbal nonspeaking / higher support needs friends that gave me hope to stay. because so many people don’t listen and instead speak over. terminology only a symptom of problem. address roots, sure, but part of address roots is address symptoms.

‘well nonverbal people are never around” maybe it because you don’t make it welcome for us to join.

“fully nonverbal rare anyway” estimated 30% of us nonverbal nonspeaking, which this statistic probably only count those nonverbal since birth. even more are minimally speaking or without full functional communication, abilities limited to requests. sure, 30% still not majority. but significant amount never the less. speaking lower support needs autistic without intellectual disability not majority anyway too but your experience still deserve heard. ours too.

“see less nonverbal people because they don't have ability to communicate and use social media” yes, many nonverbal nonspeaking people not given access to communication (like AAC), forced to live in silence (because body language communication not enough alone!). silence from birth to teenage years, to adulthood, even until they die. some cannot understand social media or AAC because intellectual disability or cognitive ability. some not allowed on there because safety, some not allowed on because presumed incompetent and abused. all true. do you advocate for them too? or is it just talking point against me, pretend you care?

but not all of us, we exist. some of us thankfully supportive parents all along, parents given resources, us given resources, so we access to AAC since beginning. some of us became nonverbal later in life (which not same experience as those early in life, i acknowledge). some of us after years of forced silence, finally given access to AAC and can now communicate and advocate! some of us on social media - do you listen?

but you see none of us in your community anyway. maybe one token person.

you can go nonverbal. i cannot go verbal. see difference? you can come close to my experience, but i never will have (future) ability to go to yours.

it frustrate that have to specify am nonverbal **all the time** when write this, because if don’t do that will be assumed otherwise. frustrate that when in neurodivergent space stranger see me AAC they assume i can speak because they only know part time users (know part time users frustrate too because people assume they cannot speak and get surprised when they do. me being assumed automatic part time is not fault of part time AAC users.)

even been told am privileged to be nonverbal nonspeaking, privilege over speaking autistic who lose speech because in their mind it mean i get all support i need i get all recognition get all the representation. which. couldn’t be farther from truth.

all that. is fraction of reason i frustrate at “going nonverbal nonspeaking” and “when i was nonverbal nonspeaking.”

so many other words. lose speech. intermittent speech.

just want have own sub community where can find people similar experience.

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Text adapted from this post by palestinian writer and my dear friend Siraj Abudayeh ( @siraj2024 )

Since siraj's home was destroyed in november by the IOF, he and his family have been displaced seven times. Since then they have been at constant risk of starvation, violence and illness.

Since the latest attack by the IOF that displaced his parents, his siblings and their families, Siraj is the sole provider for 23 family members now. This is already when three young children are sick with serious infections during a time where children in gaza are not even able to to get basic vaccinations anymore. He is struggling badly to make ends meet, and it weighs on him greatly that he is not able to provide for his family at such a difficult time.

Currently, he is at $51,480 CAD / $82,000 

He needs to reach his goal as soon as possible to take care of his family.

Please donate anything you can spare, easing this burden off his shoulders even a little is the least we can do right now

Vetted and appears #219 on @/el-shab-hussein and @/nabulsi’s list of vetted fundraisers, so please dont hesitate to share and donate.

Since the gfm organizer is based in canada, the gfm will not accept donations from paypal. Please DM @malcriada who is a trusted friend of siraj if you wish to donate using paypal, or are otherwise having any issue donating to the gfm with general cards.

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In an op-ed for the Wall Street Journal, novelist John Grisham recounts the flawed science that led to the conviction of Robert Roberson (pictured, with his daughter Nikki) and the inadequate legal process that has maintained that conviction. Mr. Roberson was convicted and sentenced to death for the 2002 death of his 2-year-old daughter Nikki. His conviction relied on a theory of “shaken baby syndrome” that has since been discredited. After a hearing ordered by the Texas Court of Criminal Appeals, a Texas judge rubberstamped a brief submitted by Anderson County prosecutors, ignoring exhaustive and unrebutted scientific evidence and upholding Mr. Roberson’s conviction. Mr. Grisham explains that, although the shaken baby hypothesis has been used to convict “countless caregivers,” “Mr. Roberson could be the first to be executed.” He recounts the circumstances leading up to Nikki’s death – “chronic and severe middle-ear infections,” “a high fever and undiagnosed pneumonia,” and a fall out of bed the night before her father found her unresponsive and took her to the emergency room. Staff there “didn’t know [Mr. Roberson] was autistic and decided he didn’t show the proper emotions given the dire situation.” When Nikki died a few days later, a doctor identified the triad of symptoms that were assumed to be indicative of shaken baby syndrome – “brain bleeding, brain swelling and bleeding in the eyes.” What Mr. Grisham calls that doctor’s “rush to judgment,” paired with a nurse’s unproven speculation that Nikki had been sexually abused, led a jury to convict Mr. Roberson and sentence him to death. But in the 20 years since Mr. Roberson’s trial, medical science has evolved, and even Dr. Norman Guthkelch, the doctor who initially proposed the shaken baby syndrome hypothesis, has disavowed it. In 2012, Dr. Guthkelch argued for a review of shaken baby convictions, saying, “I am frankly quite disturbed that what I intended as a friendly suggestion for avoiding injury to children has become an excuse for imprisoning innocent people. We went badly off the rails.” In 2016, just five days before Mr. Roberson was scheduled to be executed, the Texas Court of Criminal Appeals ordered a hearing in his case. The trial court heard ten days of evidence, including testimony from six experts “who showed that the outdated version of shaken-baby syndrome used at his trial has been discredited and that Nikki died as a result of her undiagnosed pneumonia, medications and accidental fall.” According to Mr. Grisham, at that hearing, Mr. Roberson’s legal team “produced unrebutted evidence that no homicide had in fact occurred.” The state replied by submitting “a 17-page brief that hardly touched on the new science—instead rehashing outdated evidence and theories from the original trial in 2003.” Judge Deborah Evans “rubber-stamped it, following the prosecution’s lead in ignoring most of the new expert testimony and all of the scientific studies showing a change in understanding of shaken-baby syndrome.” Mr. Grisham concludes with a call to review cases like Mr. Roberson’s, and to “demand more from judges than a copy-and-paste job that entirely ignores changes in the scientific understanding of a case, especially when a life is on the line.” Mr. Roberson has a petition for a writ of certiorari pending before the U.S. Supreme Court. On June 15, 2023, five amicus briefs were filed on his behalf by scientists, judges, and innocence organizations.

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hey y'all ik i dont post on here often but it came to my attention today that an innocent man named Robert Roberson is about to be issued the death penalty in texas for a crime he never commited and was only accused of for showing lack of emotion in court (years later he was diagnosed autistic). please sign this petition and share to help save his life. thank you<33

article | petition

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The Innocence Project is asking for your help to prevent the unjust execution of someone for a crime that even detectives agree did not occur.

The death penalty is wrong and is about to be used, again, to end the life of an innocent person.

If you are too nervous to call sign the petition and spread the word.

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In 11 days, Texas is set to execute a man for a crime that never happened

This is Robert Roberson. He has been sitting on Texas' death row for over twenty years after being convicted of murdering his daughter.

The problem? The murder never happened.

Robert was convicted based on the discredited and outdated diagnosis of "shaken baby syndrome", which argued that babies could die from shaking that doesn't leave signs of physical trauma. Robert is also autistic, and his mannerisms lead hospital staff to suspect abuse. There is no evidence that Robert murdered his daughter, Nikki. Killing Robert is not justice.

Please click the link above to sign a petition asking Gov. Greg Abbott to halt Robert's execution. I will also link below to a news article with further information about the case.

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Robert Roberson due to be executed 10/17.

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Week of Rage

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⚠️TW⚠️

⚠️CH!LD MURD3R, V!OLENCE AGAINST CH!LDREN, S@, AND T0RTUR3⚠️

Real Israeli Targets - PALESTINIAN & LEBANESE BABIES & CHILDREN!!!!

MEANWHILE, ISRAELI TERRORISTS RAPE PALESTINIAN CHILDREN IN THE CONCENTRATION CAMPS!!!!

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TW ; H@RM TO AN!MALS

All of my friends that work at wildlife rehab centers have had to untangle animals from this stuff, or had animals brought in that died in it. This is especially nasty for small owl species.

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sign this.

call the number and demand this man is saved from execution

september 24th is approaching there is not much time left

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As we fight imperialism abroad, remember the people who are suffering under apartheid at home. Help Marcellus Williams by signing the petition to stay his execution! Read to learn more about Mr. Williams situation.

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What if you had 4 days left?

EVERYONE IS ASKING FOR HIS EXECUTION TO BE DELAYED

The victims, the prosecutors, a special panel of judges, and the governor of Missouri continues to deny them! Help give Marcellus and everyone in his corner more time to prove his innocence!

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Call Gov Parson 417-373-3400

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there are three days left to save Marcellus Williams from being wrongfully executed by the state of Missouri. Governor Mike Parson continues to ignore our requests, but there is still time. His voicemail is full; but you can email & tweet his accounts using this link. if you want to know more about Marcellus’s story you can visit the innocence project’s instagram or their website. if you would like to bombard the governor’s other socials here’s his Instagram. plz share this post and all other posts by the innocence project. There is still time to save Marcellus.

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Last week, St. Louis County Circuit Judge Bruce Hilton declined to vacate the conviction and death sentence of Marcellus, an innocent man on death row in Missouri. This means Marcelllus’ execution will go forward as planned on Sept. 24.

The state of Missouri has admitted major constitutional errors including removing potential jurors based on race, and mishandling the DNA evidence that could have proved Marcellus' innocence.

There’s still time for the courts or Gov. Parson to stop Missouri from making this irreversible mistake. We must do everything in our power to stop this wrongful execution. And you can help. Here’s how.

Keep calling Gov. Parson at 417-373-3400 and urge him to stop Marcellus’ execution.

Please help us prevent Missouri from making the irreversible mistake of killing an innocent person. Your voice could make a crucial difference in the fight for justice.

Text and photo courtesy of the Innocence Project

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Justice for Justin Robinson

Justice for Sonya Massey

Justice for Easter Leafa

Justice for Breanna Taylor

✊🏻✊🏼✊🏽✊🏾✊🏿 WE DEMAND JUSTICE