I’m having a hard time with the discussion about the movie, Music, written and directed by @Sia. First, everyone is referencing NonSpeakers as “non-verbal.” NonSpeakers are nonspeaking because they are apraxic, and that means they can’t coordinate their movements to speak.
They often also can’t coordinate their bodies. They do things without being able to control themselves. Asking them to act in a movie where they have to do very complex ordered tasks would be overwhelming.
It can take a NonSpeaker a week to write an article because of the difficulty of spelling to communicate. But when we publish articles by nonspeakers, nobody reads or shares them. They are our lowest traffic demographic despite that I put 10x more effort in promoting them.
And they are ACTIVELY oppressed and degraded and mocked by these colonizer ABAers that we could shut all the way down if we worked together. And Ren Everett was one of the most amazing advocates for NonSpeakers, by THEIR consensus, and Ren was bullied out of advocacy.
I saw a 60-second clip wherein an apraxic autistic GIRL was said to be able to understand everything she hears. She was given access to AAC. In reply, @Sia said there were 13 autistics and there were also trans actors on the cast. The girl who plays Music does everything Sia does
And people are acting like that relationship is gross & toxic. @Sia's interview features her stimming by rocking back & forth the whole time. She says she never leaves the house even outside the pandemic. She has a history of suicide attempts. She impersonates everyone she hears
She has historically not been able to perform and can't without a mask or something covering her face. She laughs compulsively at things that aren't humorous. She is wearing a hat made of socks and a stuffed animal. Her profile says she should be in diapers.
She has to sleep 7-12 hours a day and spends the rest of the time watching TV to help regulate because she feels too much. She needs to watch documentaries to turn down her feelings.
She stutters and loses words. I'm sorry, but we don't show this kind of moral outrage when actually, actively oppressive things happen to Nonspeakers.
@ekverstania works her ass off to make sure the community understands and learns from Nonspeakers but most of the people complaining about @Sia's language are using "nonverbal," which is so reductive. We have to advocate for @AllAutistics by listening to them.
If Nonspeakers feel dehumanized by the character's portrayal, I'll honor that. But we are not listening hard enough to them. How many of us have Nonspeaking apraxic autistic friends you can consult about their opinion on this portrayal?
Because if we don't do that FIRST, then we need to ask them before we speak over them. I'm going to ask my nonspeaking friends today, if they have time and spoons, to react. But I do not see that the actor was mocking autistics. She moves like me.
Also, I find Rainman and Forest Gump highly relatable. I'm not sorry about that. I move the way the character in the movie clip does. So does my kid. What's wrong with that? I find incredible ableism in a lot of the way we are reacting.
And let's talk about the predatory Autism Speaks moving in at the 11th hour to put their stain on things. They have a script. They also have neurodiversity advocates and autistics on their staff they use as confirmation bias. Call them and ask them about anything and get this:
"They are a small but vocal minority who are very active on Twitter." That's what they told our board member before they knew she was calling on behalf of NeuroClastic. They also told her they didn't have the resources to focus on what we are doing, then stole my project.
With mega dollars. With all the work we do, we have never even raised a total of $10k. That's facts. They can and do afford to make sure we can't afford search engine real estate or get our content out there.
I researched Autism for 12 years before ever finding out the community exists. It was a local friend who put me onto it after reading my novel and saying that my female main character was autistic. I told her, no, but the protagonist and his dad and grandfather were.
We have to realize that yes, you can be 💯% immersed in Autism and not ever find anything from a neurodiversity standpoint. That day, I saw Agony Autie's sponsored video on neurodiversity, and I just wept. I saw @aspergersgirls’ list of female traits. This is why we need money.
We need to sponsor content. We need to help each other rank up in search engines. You know what Autism Speaks doesn’t have? An autistic audience. The director of adult services there told me that if a site could get an autistic audience of 10k people they’d have major leverage.
If we want people to find us, to find the community and understand themselves, we need to try harder to put all this moral outrage to work. Matthew Rushin’s was politely passed on or ignored by the mainstream, but our community got over 85,000 signatures on a petition in one day
That pardon is historic for a lot of reasons. WE (the autistic community) did that, not the orgs, media, or celebrities who came in at the 11th hour and went right back to their deficit model language. Yes, @Sia is using language that needs some guidance. BUT...
She's also asked the world to #presumecompetence-- which is the biggest revolt against the narrative pushed by the detractors who are trying to maintain Nonspeakers are not the authors of their own words. She is normalizing AAC. She's not making the star into a burden.
Maybe she should have hired an autistic actor for the lead, but using "level of functioning" to describe apraxia is an imperfect way to say that yes, it would be overwhelming for an apraxic person to maintain that kind of schedule and overwhelm and follow that many ordered steps
Deej was free in the month of July, and we advertised it on our platform. There's a heartbreaking scene where he gets embarrassed because he couldn't control during an interview constantly putting his fingers in his mom's hair. He got overwhelmed and the producer had to go meta
And explain that he had to step back. No one would watch it. In See It Feelingly, Tito Mukhopadhyay goes to the Melville (oh, Melville 🖤🖤🖤) house and can't control picking up one of Melville's books on display.
In this hilarious article, Nonspeaking teen Trevor talks about how he can't control himself and uses scissors to cut his own hair. The results are hilarious (with pictures) and he's really got a good attitude about it. Let's platform apraxic autistics. https://neuroclastic.com/2020/02/11/put-down-the-scissors/
Trevor's hair. 😂
I'm just saying, there are really important messages in this film that everyone is criticizing so harshly, but hot damn, the whole premise is PRESUME COMPETENCE. If you don't know why that's revolutionary, subversive, and EXACTLY what we need, you need to listen to Nonspeakers.
They have a severe human rights crisis with a cabal that functions like an actual cult to prevent them access to communication rights and to maintain that nonspeakers are not mindless meat sacks. This film is doing something that to the mainstream is vitally important.
Let’s wait for Nonspeaker input, who often are not on social media because they require a communication partner and the privilege of communication access to be able to even share their opinions. Let’s use the attention on this film to promote nonspeakers and their work.
Let’s share their films, their YouTube channels, the orgs focused on communication rights, their books, articles about oppression against them, and let’s hear from own-voice nonspeakers. We need to put in work to make sure they are heard. Sia isn’t responsible for that. We are.
They’ve had movies out for years. Let’s Champion them and learn about communication rights. We already have own-voice representation that we can try harder to platform and signal boost.
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