‘Music’ film with nonverbal autistic lead, directed by Sia

Post Reply New Topic

With "Music" being minimally verbal, it is showing a more severe and disabling side of autism which is not aligned with the ND movement.

I don't have a personal definition. It is a simple question. What is exclusionary in the ND movement? Nothing I have read shows it is. I have, however, seen a great deal of misrepresentation of the movement, and, oddly enough, from inside the community. But that tends to be based in anecdote and opinion, which is not very useful.

Many ND advocates Deny there is such thing as “severe autism”.

So some would say the girl in the movie wouldn’t have autism, in other words denying her condition.

This despite official diagnosis of autism in such people.

Many like to blame other conditions attached as co-morbidity like intellectual disability for example as being the cause of the severe symptoms.While that may be true in some cases they ignore the plain fact that what caused the autism probably caused everything else as well as autism is malformation of the brain.

To use a metaphor some small numbers of people have a stroke and end up with a cool foreign accent or artistic ability they never knew they had. Others may end up blind, paralyzed or dead.

The event that caused the artistic ability in one caused the death in another, the only thing that separates them is the severity and how the damage manifests.

These brain conditions from birth usually cannot be separated as from the single cause as many ND like to claim.

I have seen nothing you describe in the ND movement. I am sure there are people with extreme views, but taking a sample of the extreme view to paint the whole is simply misrepresentation.

I don't have a personal definition. It is a simple question. What is exclusionary in the ND movement? Nothing I have read shows it is. I have, however, seen a great deal of misrepresentation of the movement, and, oddly enough, from inside the community. But that tends to be based in anecdote and opinion, which is not very useful.

Isn't this whole thread about the ND movement criticizing Sia for not casting a "neurodivergent" actor?

I.e: excluding "neurotypical" actors from playing "neurodivergent" roles.

Nina Skov Jensen and Rosanna Kataja, who started the petition together shortly after the Globe nominations were announced, spoke with Newsweek via email regarding their campaign. Jensen is autistic, while her friend Kataja has an older brother who's autistic. The two met at Harvard, where they are currently students. Jensen is a royal portraitist originally from Denmark, and Kataja—a native of Finland—is a student researcher at the university's Foreign Policy Initiative.

More than half of their petition's signatures came in the past six days.

"I actually found out about the nominations from my mom, who told me close to midnight. I remember being so shocked and infuriated that I could not sleep until 3:00-4:00 AM," Jensen told Newsweek. "Every day I try to achieve amazing things to prove to the world that I can do it despite my autism. The world needs to know that we will no longer accept others controlling our lives while ignoring our wishes. There are so many things wrong with the movie, and nominating it for not one, but two Golden Globes screams 'we don't actually care about you.' The entertainment industry cannot continue profiting from our disabilities while simultaneously doing nothing to help us."

When asked how she would feel if Sia and Hudson withdrew their own names from Globe contention, Kataja replied she "could be quite content" with that scenario, but she and Jensen "want Sia and other people working with this movie to truly understand why the autistic community reacted the way they did."

Should Sia win and use her speech as a way to try to reach out to the autistic community, Jensen said such a move "would only be pouring salt into the wound. There isn't much she can do at this point to earn our forgiveness, except destroy the entire fiasco of a movie and apologize properly. There is nothing wrong with owning your mistakes."

Asked whether she saw Sia's recent apology, Jensen wrote that she did not find the star's words sincere,

Particularly troubling for her is the fact that there is no indication so far that the restraint scenes have been removed. (The New York Times reported more than a week after Sia's declaration that the scenes would be taken out that they were still featured in a screener the outlet received.

On December 24, 2020, the musician Sia publicly offered to fund CommunicationFIRST to make an introductory short to her new movie MUSIC. The short was intended to help humanize and spread awareness about real nonspeaking autistic people, who were left out of MUSIC, despite being the subject of the movie. After a team of nonspeaking and autistic people brought together by CommunicationFIRST in January 2021 previewed MUSIC and provided feedback and recommendations to Sia on how to improve it, they received no response from her team. In early February 2021, CommunicationFIRST decided to move forward to produce a self-funded short by and with real nonspeaking autistic people, and to launch it on February 12, 2021, the MUSIC US release date.

The film LISTEN is the result.

While the film has not been released outside of Australia as of this writing, a teaser released in November 2020 managed to condense an impressive number of harmful tropes into one minute. It opens with protagonist Zu reading a letter informing her that she's now the only person available to care for her autistic sister, the eponymous Music. We're then shown a helpful neighbour pontificating on the spectacular hidden world of non-speakers like Music, while she remains wordless in the background. The trailer closes with a montage of elaborate, garish dance numbers interposed between shots of the characters grinning at each other.

To the non-autistic viewer, this is all innocuous enough - a yawn of generic images and bland dialogue desperate to inspire a non-autistic audience. But to a non-speaking AAC user such as myself, Music's caricatured expressions are just the start of the trailer's issues. The inspiration cues, the diaper dance costumes, the Care Bear-esque colour palette - these elements serve to infantilise autistic people, and they fail to mask a particular negativity towards people with communication disabilities. In all of this, we the audience are given a measly four words from Music herself, while her non-autistic caretakers constantly explain her experiences and what her autism should mean to us. Every disabled person knows this type of degradation- the assumption that we are not capable of controlling our own narratives - and when done to non-speakers, it can be especially dehumanising, even violent. For me, it has ripped away academic opportunities and crushed friendships.

Even when the words are ostensibly nice, they carry ableist views about non-speakers that have become enmeshed in the conversations on autism. Lines such as "she can understand everything you are saying to her... she sees the world in a completely different way from us" may seem like advocacy to speaking people, but in actuality, they exemplify an issue non-speakers have fought for years: that we geniuses locked inside broken bodies, and our worth as people is hidden in that intellect. Feeling locked-in is a familiar experience to me. It's a type of frustration that comes with having words constantly bubbling to come out, but never having a body that will cooperate enough to say them. But this isn't an experience that speaking people have the sensitivity or basic understanding to write themselves. Instead, it contributes to the ever-growing silencing of non-speakers, shutting us in even further as our voices are deliberately left out of the conversation. By tying our worth to out ability to think, then denying us the ability to share out thoughts, Sia reveals her true, if unconscious, hateful feelings towards non-speaking autistic people.

This representation has consequences for millions of autistic people and non-speakers. Already, access to communication is limited due to false assumptions within the medical community. Non-speakers judged to be unintelligent are not given access to training to use AAC, and prominent non-speakers are accused of faking when they learn to type, write, or point. Meanwhile, people like me, viewed by authority figures as too intelligent to be "that kind" of autistic, are assumed to be silent out of choice, are we are therefore cut off from correct diagnoses and support systems that can come with them. Music being the first makes its representation of non-speakers doubly important, because, like Rain Man before it, it will be the majority's only exposure to information on non-speakers and AAC. The false impressions made by this film, ranging from the eye-rollingly ignorant to the potentially lethal, will impact real non-speaking lives. The most powerful thing speaking people can do is to uplift works by nonspeaking creators. Investing in non-speakers' works combats the assumptions that devalue our lives and lock us in silence.

One morning in late November 2020, I woke up to find that my rather modest twitter account had somehow gained around 1500 followers overnight. The final exams were upon me and various projects and papers were coming due, so I was not quite “woke” to what was going on outside my academic bubble at UC Berkeley, at least not till the exams were out of the way.

It turned out that I had been mentioned in a conversation by Julia Bascom, the executive director of the Autistic Self Advocacy Network (or ASAN) of which I am also a board member. The conversation had been about a trailer released by the Australian music artist, Sia, for a musical titled “Music,” which featured a nonspeaking autistic character, also named Music. The twitter furor was over the fact that a non-disabled person, specifically a non-autistic, had been cast in that role of a nonspeaking autistic character. And it seems, the movie has received a Golden Globe nomination.

There was all kinds of wrong in the above scenario and for me almost a sense of deja vu. It immediately brought to mind the 2005 documentary, “A Girl Like Me,” by Kiri Davis that we had seen in my Stigma and Prejudice class at UC Berkeley. The point of the documentary was the lack of authentic representation of Black girls in the media, including even their hair and facial features. After all, the media often shapes how we view ourselves and how others around us view and esteem our place in society. When there is lack of representation or improper representation, it directly feeds into the internalization of stigma, where your membership in a group is the very cause of your negative self-esteem, feelings of inferiority and even feelings of self-hatred. In fact, in a 1940 study by Kenneth and Mamie Clark studying self-perception of race, Black girls had identified White dolls as preferred and good, while Black dolls were less preferred and associated with bad. That study went onto becoming part of the testimony used in the 1954 Brown v. Board of Education Supreme Court ruling.

Growing up, I too have wondered on the lines of “A Boy Like Me.” Where was this boy I could look up to and emulate from in books, in movies, and on TV? Someone who had to navigate the world of limited spoken communication skills and perhaps brown too? Did a boy like me even go to college and dare to dream of accomplishing great things? Where was this boy like me? I only saw Stephen Hawking on the one end and then Sheldon Cooper of the Big Bang Theory on the other.

When they did include a nonspeaking autistic character in a movie, it usually traumatized me. The focus was invariably a meltdown by the autistic accompanied by a helpless looking able bodied person that the audience sympathized with and rooted for. The meltdown was the entertainment value which gained brownie points and built character for the long-suffering caretaker.

So the fundamental question remains – do meltdowns, whether it is due to sensory overstimulation or any other reason, define the entirety of the nonspeaking autistic who is still a living, breathing and thinking individual? If such sensationalized scenes are the only images being flashed over and over, in movie after movie, what impression is being cemented about the members of this group to the rest of society? What kind of opportunities can this group hope to have if society deems them incapable or is even fearful of them at the door itself? Will they ever be allowed to be included and visible in mainstream society? What about the potential internalized harm and trauma of this stigma for members of this group?

The fact of the matter is that many nonspeaking autistics can be contributing members of society too, and go onto accomplishing much, for those who desire and are given the right opportunities to do so. Negative and fearful stereotypes result in gatekeeping of both opportunities and acceptance. Besides, the worth of an individual should not be based on their ability to contribute. Some autistics simply can’t due to the nature of their disability and that’s ok. The point being that every human life (abled or degrees of disabled) has value and this is the message that needs to be portrayed in plot lines of movies and TV. One of the things that stood out to me in my Stigma class was how continued and frequent exposure to exemplars of the category would help reduce and replace that automaticity of connection which in turn would reduce prejudice. Which basically means nonspeaking characters in plot lines need to be shown as being creative, being innovative, being involved in the community, going to college, working in new innovative and non-traditional ways, and doing great things; with all of these images presented continually and frequently in order to change mindsets.

I’m one of those nonspeaking autistics or minimally speaking autistics. I can maybe speak a dozen “want phrases” and repeat or read out a few other phrases after much practice but holding down a full length meaningful conversation using “speech” is still a work in progress for me. I would very much like to recite my poetry in my own voice and get to some basic talking conversational skills, so I keep practicing. Having to type every thought can be time consuming and exhausting, devices can be unpredictable, they are not readily accessible the way your tongue is and batteries die. Then there is my body which itself can often feel like a car with a loose steering wheel, I never quite know which way it will decide to go with a brain-body disconnect, oral-motor apraxia, repetitive body movements and sensory dysregulation issues. Meltdowns are part of my existence, and I have struggled with them.

But I’m also a student at UC Berkeley, excelling at academics and I get to do many things including being a student journalist and being part of research labs and advocacy. And get this: I teach a class on autism as a student instructor, which is a societal oxymoron, as teaching and nonspeaking autistics are not thought possible together. Me as a teacher – well, that thought startles me all the time too and seems almost unreal and temporary, an internalized cognitive dissonance, as maybe I am still caught up in my own internalization of stigma built up over the years in the special education system where negative stereotypes are often perpetuated, whether knowingly or unknowingly.

The other, though less annoying, stereotype of the nonspeaking autistic is the large headphones that we all apparently must wear. There is no factoring in of individual differences or situational differences. The message being sent is that you can whisk away sensory differences by plopping noise-cancelling headphones on a nonspeaking autistic’s ears. Problem solved and a pat on the back! Unfortunately, it doesn’t work that way as some sudden sounds can end up being magnified. Let me illustrate with an example. In all earnestness I wore headphones to my first college football game to help dampen out the crowd noise. Then came the cannon shot, fired in celebration right after a touchdown, which ended up magnified in my headphones. I got the fright of my life, my heart was racing so fast I thought I would just keel over and my eardrums would burst as I raced out of the stadium in agitated alarm. As I heard and read later, noise cancelling works by phase cancelling the peaks and valleys of regular repeated sound waves, but are less effective with sudden unexpected peaks, the cannon shot in this case, which I’m guessing sounded even louder in contrast to the other dampened noises.

Coming back to Sia’s movie, while I have not seen the film, the reviews I read are troubling as the film seems to reinforce societal negative stereotypes about autism, agency, disability as a burden, and about “sending the more difficult autistics away” to a facility, at the convenience of the caretaker, where they can be tucked out of sight and out of mind of society and rendered invisible. The film features not one but three entertainment-value meltdowns. BUT OF COURSE (sarcasm intended)! For me, it will be another traumatizing movie featuring plot lines to avoid.

What is also worrying about Sia’s film is the apparent use of restraints, which is very reminiscent of the residential Judge Rotenberg Center where GED devices (for electric skin shocks) were routinely being used as aversives in behavior therapy. In fact, getting congress on board to urge the FDA to finalize its rule on banning these electric shock devices by the JRC was one of the issues my 2019 ASAN cohort (at the Autism Campus Inclusion) lobbied for in Capitol Hill. While the FDA did finally finalize its rule towards banning these specific electric shock devices last year, it does not preclude other forms of punishments, harsh aversives, or restraints by the JRC or any facility. In fact, another legislation my ASAN cohort had lobbied for at Capitol Hill was KASSA (Keeping All Students Safe Act) which would hold schools accountable. With respect to Sia’s movie, ASAN, Alliance Against Seclusion and Restraint and CommunicationFIrst, the only nonprofit organization dedicated to protecting the civil rights of people who do not rely on “speaking” to communicate, issued a joint statement calling the portrayal of restraints as dangerous as such media portrayal by a Golden Globe nominated movie would help normalize the use of restraints against the disabled in the public psyche.

The disability community has long argued for positive and proper representation of disability in the media. Check out the Ford Foundation white paper on authentic and positive representation by legendary disability rights activist, Judy Heumann. Representation was also a much discussed topic in the events organized around the celebrations leading up to the 30th anniversary of the Americans with Disabilities Act last year (here is one review I wrote for the Daily Californian).

The essence of authentic representation is that a disabled character in a movie plot be played by a person who actually has that disability, just as a White person can’t be an authentic representation of a Black person. It is the whole idea and hope for “A Boy Like Me.”

When the trailer for Sia’s musical came out, there was much outrage amongst the disability and autistic community in that an autistic should have been used to play the nonspeaking role. There were even news articles and interviews with some autistics apparently saying they were available and would have easily played that role if only they had been called by Sia.

Let’s pause a little here – we know that autism is such a wide spectrum where the lived experiences of a speaking autistic can be different from that of a non-speaker, each individual with their unique level of support needs in other areas. For instance, using AAC (augmentative alternative communication technology) is by no means as simple as is portrayed in the media with the stereotype of a limited set of icons on an iPad screen that apparently takes care of every possible communication need of a human across every scenario. Our emotional bandwidth itself is reduced to just a few emotion icons much like Facebook. You have to turn the device on, get to the correct app, clear the screen and hope the app does not freeze on you at a critical moment. The reality is that it’s not always available or accessible, or just plain difficult to navigate, so that is a whole set of additional issues to contend with along with other autism issues, topped off by anxiety in having to manage all these in a real time conversation even as the other person is staring impatiently at you for a quick response not realizing that AAC is never going to match the speed or ease of talking. The point being, how does that former autistic become an authentic representation of the latter nonspeaking autistic? How is that “A Boy Like Me?” Aren’t we just being a little ableist here?

I don’t know if there are many nonspeaking autistic actors out there. For instance, I may be a good writer and storyteller but would make for a terrible actor. Other intersectional identities, abilities and interests may mean that not every nonspeaking autistic actor is a match for every role that comes up.

I recognize that there are no easy or quick solutions when it comes to actors as you have to match up many things. But we can try to involve non-speaking autistics in other parts of media representation about them, even if there are not sufficient numbers of nonspeaking autistic actors to make it to the front of the camera at the moment. For example, in animated movies, I would like to see more non-meltdown focused plot lines. The representation must be both authentic and positive. How about turning some of these perceived negatives into positives? Maybe that heightened sensory perception can be used to sense clues and solve crimes in a detective story for instance, whether as a main or supporting character. And as soon as I wrote that sentence, my mind started thinking of many positive plot lines.

The disability rights movement has been about speaking “with” the marginalized group by being their ally, and not “for” them by removing agency. What I would like to see from my speaking autistic allies is outrage against such plot lines and stereotyping and helping build better technology that can make communication itself more accessible.

But at a more fundamental level, I would like to see much more outrage by my speaking autistic allies at the invisibility of nonspeakers in mainstream society. I believe this invisibility starts with the use of functioning labels. By labels I refer to the very stigmatizing and dehumanizing functioning label of low functioning. Being branded low sets you up for low educational expectations, low societal expectations and gatekeeping from the get go, it sets you up for lifelong failure. No one willingly labels themselves as low, it is others doing so.

“Low” becomes a self-fulfilling prophecy as shown in the Rosenthal & Jacobson study way back in 1968 – someone’s expectation about a person or group leads to the fulfillment of those expectations. When teachers were told a certain group of (randomly selected) students would do better, they did end up doing better; the better performance was attributed to the teacher’s behavior. By extension, if a teacher is given a child with the “low” prefix, unconscious bias will translate to lower expectations for the rest of that individual’s life.

In addition, terms like “low” will cause an almost priming effect as shown by Higgins, Rhône’s, & Jones (1977). In that study, one group of participants were exposed to, or primed with, negative words like, “reckless and stubborn,” while the other group was primed with positive words like, “adventurous and persistent.” They were then asked their interpretation of a person after reading a rather ambiguous description of him. The positively primed group had a positive image and vice versa. Similarly, in the 1966 Bargh, Chen & Burrows study, when participants were primed with “elderly words” they walked slower after leaving the experiment.

The point: labels influence outcomes!

Remember “high” is a problem too as it is a relative term, its presence implies some sort of superiority and its absence indicates its opposite, which is “low.” So we must get rid of both labels. We need to be autistics together, neurodivergent together, disabled together, humans together.

Clinicians, educators, scholars and therapists still routinely use these functioning labels. If you have a voice, you can use it to help bring dignity back for the members of the more marginalized autistics. Use the power of social media to spread the message. Interrupt the usage of the functioning labels when you hear it and encourage the alternative terminology of “support needs.” And let’s change the plot lines and the narratives around nonspeaking autistics so more and more are allowed to be visible in society and avail of opportunities in all kinds of areas. Then we will truly see more and more nonspeaking autistic actors who will be able to provide us with more positive and authentic representations.

We need to open opportunities for all of us to be included and belong in society. Langston Hughes had said, “I, too, am America;” to which I will add, “I, too, am human!”

Reactions from non speaking autistcs

https://communicationfirst.org/listen/

[...]



[...]

i’m non-speaking, i don't need sia to talk for me
This piece is part of a series of paid commissioned opinion pieces by Disabled writers

Mickayla is an autistic AAC user studying psychology and linguistics. In her free time, she dances and writes SF/F stories featuring disabled characters.

[...]

A Boy Like Me
Hari Srinivasan is a minimally-speaking autistic at UC Berkeley majoring in psychology and minoring in Disability Studies. At Berkeley, he is lead instructor for a semester-long class on autism, is the first nonspeaking president of the student org, Spectrum at Cal, writes for the Daily Californian and is an RA at the university Psychology Labs as well as the UC Berkeley Disability Lab. Hari hopes to go onto grad school and pursue research that relates to the autism and disability space. He also enjoys music, watching pro sports in addition to learning tennis. He loves creative writing with some of his poems and other work winning awards including a National Award at Carnegie Hall. Hari is passionate about disability advocacy and is a board member of ASAN and on the advisory board of ASA. Hari was featured on President Obama’s Instagram campaign on the 30th anniversary of ADA.

[...]

The above film and essays were recommended by speaking autistic writer Sarah Kurchak
in an essay for Time Magazine
Sia's Golden Globe-Nominated Music Isn’t Just Offensive. It’s Also Bad Art—and the Distinction Matters

[...]

Sia just swept the Razzie Awards with three wins and four nominations- but is winning a Razzie really winning at all?

Basically the opposite of the Oscars, the 'Golden Raspberry Awards' honor each year's very worst contributions to the movie industry. 2019's big winner (/biggest loser) was 'Cats,' and this year Sia's 'Music' was voted worst of the worst.

Despite being a quieter flop, 'Music' actually has a lower Rotten Tomatoes score than 'Cats.'

'Music' winning Razzies was some people's biggest hope:

Now that it's happened, people who identify with the hashtag #ActuallyAutistic are hopping onto their socials to celebrate.

Tweets like "she gets what she deserves" and "what goes around comes around" gained traction on the app alongside ones like this that aim to keep the conversation going: