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Okay, about the Sia thing and my reaction. I'm going to wait for @ekverstania to give more complete explanations, but I will briefly touch on the word "Nonspeaker" (no hyphen). This is a word that I thought was better understood in our community to mean something specific.
Nonspeakers (no hyphen) is more of a community identity than a literal description. It refers to the community of apraxic autistics who may have speech in that they can say words, but it's often unreliable and not what they intended to say.
They typically have a lot of difficulty controlling their motor movements, facial expressions, and what they want to do is not always what they do. Like this from Ashna, a Nonspeaking teen: (any images have alt text)
From this article: https://neuroclastic.com/2019/11/26/the-view-from-here-but-you-can-speak/
Nonspeakers do not want to be called non-verbal because they have been disregarded as totally incapable of communication and many were actually officially diagnosed as severely r*t*rded. DJ Savarese is a Nonspeaker, poet, & filmmaker. He says this (source) https://www.opensocietyfoundations.org/voices/qa-what-real-inclusion-nonspeaking-autistic-people-means
They use the word Nonspeaking as opposed to non-speaking because they, as an identity similar to how Deaf folk are not non-hearing, do not want to be seen as missing something. They're a whole human, not a human minus speech.
Nonspeakers are usually denied communication rights. From the above article from DJ Savarese:
There is a very small, tight community of Nonspeakers. This is because they don't usually have access to communication that works for them or they're given up on before they have time to develop the motor pathways to control movements to spell in a way that works for them
Soma Mukhopadhyay is a major pioneer in communication rights & access for Nonspeakers. She developed the method Rapid Prompting Method (RPM) because she knew her son Tito understood more than he communicated. This may be the most openly-oppressed family in the autistic community.
Soma and Tito were brought to the United States by the organization Cure Autism Now, which has since merged with Autism Speaks. They wanted to study him to see if he were real because they did not believe a "severely autistic" person could write and learn complex material.
Portia Iverson, a co-founder of Cure Autism Now (CAN), brought Soma and Tito to the United States because her son, Dov, was also Nonspeaking. But Soma did something that was not expected. ( https://abcnews.go.com/GMA/DrJohnson/story?id=125418&page=1)
During their "study" of Tito, CAN realized that even if Nonspeakers could communicate, they still could not always control their body movements, intense emotions, and impulses. (CN: ableist language) source: https://www.nytimes.com/2007/02/27/health/27book.html
There is a group of ABA and SLP Behaviorists who have bullied Nonspeakers for years, directing much of their violent ableism and vitriol at Tito. These are prominent leaders in the field of ABA. On the NeuroClastic account, I call them out regularly, by name.
Here's the most recent one. https://twitter.com/neuroclastic/status/1327455822797021187
They call Nonspeakers puppets and their communication partners magicians and Ouija Boards. When I asked Jason Travers why he doesn't acknowledge Tito writes with a pencil, he reported me on Twitter for threatening suicide and had my account locked until I appealed https://twitter.com/neuroclastic/status/1181072876159590400
They brag about removing the pages of Nonspeakers from Wikipedia. They actively literally bully Nonspeakers & their families on social media. They hate the idea of "presuming competence," claiming we should just accept Nonspeakers are too intellectually disabled to read & spell
Many behaviorists try to force Nonspeakers to speak, which is not always reliable for them and is difficult. They limit communication to PECS and AAC devices that have limited options for expression,
but apraxic Nonspeakers who learned to spell to communicate regularly express that they don't always type the right things on the childhood AAC devices they were given, causing tremendous frustration because they couldn't express what they wanted.
Not all people who don't speak are nonspeaking because they are apraxic. What I saw of the film trailer yesterday appeared to (albeit poorly) depict an apraxic Nonspeaker. I assumed the dance sequences are part of the rich imagination of the character.
Many Nonspeakers have rich inner worlds that they describe in their books. In no way am I defending the approach to Sia's movie, or her responses to the autistic community. They were abysmal. But also, the Nonspeaking community faces extreme antagonism and degradation from ABAers
I felt that many of the responses to the preview contained a lot of insensitivity to the Nonspeaking community and apraxic autistics and were inadvertently erasing their true and real struggles as if things Nonspeakers or those who are unreliable communicators do are not real.
Many autistic people, myself included, have degrees of mutism, apraxia, and unreliable speech; however, those of us on social media regularly are mostly requiring less support than Nonspeakers, most of whom are never given access to communication rights that accommodate them.
Research and information about Nonspeakers is sparse for a few reasons. Mainly, the cabal of Bro-Skeptics
actively seek out, bully, and disrupt all attempts, shaming anyone who tries. Spectrum News has been an agent to promote this bullying.
actively seek out, bully, and disrupt all attempts, shaming anyone who tries. Spectrum News has been an agent to promote this bullying.
They even use Q a n 0 n/ alt-r1ght techniques of equating spelling methods of communication like S2C, FC, and RPM, equating it with sexual perversion and pedophilia. Like this jerk.
One of my most favorite Nonspeakers to read is teen TrevorTypes. He's so funny, snarky, and spirited. In this article, he talks about before having communication access, not being able express even the most basic opinion, like that he loves hockey: https://neuroclastic.com/2020/01/23/hockey-rules-and-other-opinions/
While any autistic is completely entitled to use phrases like non-verbal to self-reference, it's important to respect the majority consesus of the Nonspeaking community and use the words they choose.
And also, for people like myself for whom speech can be unreliable and we experience periods of devastating mutism or catatonia, we do not have the same challenges or experience the oppression that apraxic Nonspeakers have.
In fact, some Nonspeakers even regret that Asperger's as a diagnosis is being fazed out or that we advocate against functioning labels like "severe" and "classic" autism because they feel that in the spirit of neurodiversity and autistic empowerment, they have been left out.
I do not think the answer is to conceive functioning labels as beneficial language, but we do need to talk about communication tights and access, and we need to honor the efforts of Nonspeakers.
Sia's film is going to have a lot wrong, which I fully expect from the mainstream. But I was discouraged that it seems like we are also not listening to Nonspeakers enough. Nonspeakers will often need a lot more time to respond to current events.
And if the movie is about the inner world of an apraxic autistic, with complex choreography, then yes, that role would be unrealistically cast as an apraxic autistic. That's not saying that there's not a person who doesn't speak, who is autistic, & who also can do dance sequences
That's not to say that an autistic person couldn't have been cast, but that I would love to encourage the autistic advocacy community to not treat the reality of the lives of Nonspeakers like it's a harmful and baseless stereotype.
We can honor and respect the humanity of Nonspeakers while also not unintentionally erasing their struggles.
If you don't read anything else today, please read this short and very powerful article by Philip Reyes, Nonspeaking teen, and watch the short video at the end that shows his journey to learning to spell to communicate with RPM with Soma Mukhopadhyay. https://neuroclastic.com/2019/08/08/the-cage/
Philip was a victim of ABA before being given access to communication rights. At the beginning of the video, Soma is teaching both literacy and helping to develop neural-motor pathways and muscle memory. You can also see why it's called "Rapid Prompting Method."
It takes years of hard work and dedication for many nonspeakers to get to where Philip is in that he can type independently. He still needs someone to constantly prompt him to be focused and on task. Not every Nonspeaker will be able to type as independently as Philip.
But back to the film. The main phrase that the abusers of Nonspeakers opine and hate is "presume competence." While there are oh-so-many problems with this movie, I would like to ask that we do also talk about the fact that the premise is to presume competence.
While we don't need to praise or congratulate Sia for anything, if our very small community doesn't understand the power and subversive message of "She understands everything she hears," then this is a very good opportunity to learn. I'm going to pin this thread and add to it.
I'll add resources from Nonspeakers and allies who work closely within the Nonspeaking community. I also will add articles and threads and links to orgs that center about communication rights. I also want to note that communication rights are not limited to apraxic Nonspeakers.
Communication rights are a human rights issue that impacts many people with disability, including those with medical conditions, traumatic brain injury, PTSD, mutism, anxiety, and movement disorders that can limit or prevent someone's ability to speak with reliable fluency.
I believe that the most comprehensive historian of Nonspeaker rights, content created by Nonspeakers, and quality information on the subject on Twitter is @ekverstania. I wish every human would follow her. @autselfadvocacy regularly features Nonspeakers and content from them.
So does @NeuroClastic. Both orgs have Nonspeakers and other AAC users as members of their executive boards. @Communica1st is a nonprofit wholly centered on communication rights. @ReachEveryVoice is a nonprofit school that teaches RPM.
And this helpful article about Selective Mutism from an autistic teen may help others to understand more about Mutism. https://neuroclastic.com/2020/11/04/selective-mutism-just-because-somebody-cant-speak-doesnt-mean-they-dont-have-a-voice/
This is a critically important thread running parallel to this discussion: https://twitter.com/ekverstania/status/1330222341494874114
