
Content note: includes discussion of mistreatment of autistic people, including prone restraint
Amidst the utter mess that was 2020, I found a bright spot by discovering the tv show Everything’s Gonna be Okay on Freeform. Though it’s not perfect, I did really enjoy the fact that it’s the first TV show to have an autistic lead played by an actually autistic person. The character of Matilda (played wonderfully by Kayla Cromer) is one of the more well-defined, humanized autistic people I’ve seen portrayed. She reminds me of myself when I was younger, before I was diagnosed: a little awkward, hilarious, very dramatic, and deeply human. Seeing Matilda (and Cromer herself) gave me hope that maybe things were going to get better when it came to media representation of autistic women—that we’d be able to tell our own stories more easily and show the world what we’re capable of.
Then the film Music started gaining buzz, and all of that hope immediately got thrown into the void.
If you’re not aware of Music, I don’t blame you. I’ve been trying to avoid hearing about it for weeks. Music was produced, co-written, scored, and directed by Australian musician Sia, who worked principally alongside American actresses Kate Hudson and Maddie Ziegler. The latter plays Music, a non-verbal autistic girl who’s taken in by her older sister Kazu following the death of her guardian.
Ziegler, unlike Cromer, is not autistic. In fact, there’s no one on the spectrum in the entire main cast. There’s a phrase in autistic circles—“Nothing about us, without us”—that comes to mind. I will state that this is not wholly Ziegler’s fault, especially considering that she was only fourteen at the time of filming. Rather, I choose to place the blame squarely where it deserves to go: atop Sia’s shoulders.
Backlash toward Music was swift, which is to be expected when you have non-autistic people playing the roles of autistic folks. Sia’s reaction to this was telling. Allow me to give you a bullet pointed list of what’s happened so far – barring any other incidents before the film’s February release in the United States.
So far, Sia has:
- Consulted essentially only with the charity Autism Speaks, an organization widely discredited by the autistic community (especially the Autism Self-Advocacy Network) as not actually listening to autistic people and only focusing on how we affect the neurotypical people around us.
- Stated in (now deleted) tweets that she attempted to work with a “beautiful young girl non verbal on the spectrum,” but that the girl had found the experience unpleasant so she’d gone with Ziegler instead. Note that, as the driving force behind the project, Sia could have done any number of things to make the experience easier on said unnamed girl…if the girl ever existed at all.
- Said in a (now deleted) tweet, “I cast thirteen neuroatypical people, three trans folk, and not as fucking prostitutes or drug addicts but as doctors, nurses and singers.” As though casting trans folks and neurodivergent people as near-wordless background characters in a narrative dominated by neurotypical cisgender folks is some kind of noble act.
- Responded to criticism from autistic actress Helen Z regarding being unable to find an autistic performer for the role of Music by saying “Maybe you’re just a bad actor.”
- Refused to actively listen to autistic people, even after admitting in an interview with the Australian talk show The Project that the casting was indeed ableist.
But all of that is not the worst of it. Set aside the fact that, once again, our main autistic representation is a non-verbal person played by a neurotypical person, spoken and seen through the lens of a neurotypical caregiver. Set aside the fact that Music only gets a true voice in her own head in fanciful musical numbers. We need to talk about what I think is the most dangerous part of the film.
While Music is having a meltdown, the character of Ebo – portrayed by Hamilton star Leslie Odom Jr – uses a method called prone restraint to “calm her down.” This involves a person being restrained by having their face forced down into the floor while another person sets their entire body weight on top of them until they calm down. Ebo, when asked by Kazu what he’s doing, responds: “I’m crushing her with my love.”
There have been many moments during the time I’ve known about this film where I’ve wanted to ask Sia “why?” Every time she tweeted, I wanted to ask it. Every time she attempted to insist that she’d done the very best she could, done all of the research in the world—despite not asking a single autistic person for help—I wanted to ask her why.
But Ebo’s line left me with a new question for Sia. I want to ask if she knows who Max Benson is.
If she doesn’t, I want to tell her about him. About how he was a thirteen-year old autistic boy whose only crime was having a meltdown at school. About how he was killed by being forced into the same position as Music is pushed into. Max died because of the ignorance and cruelty of the people who were meant to care for him, because they thought that the only way to calm him down was by forcing him to lay on his face until he “calmed down.”
A child died partially because of this method, a method that autistic people have spent decades saying is harmful and is painful and literally lethal in some cases, a method that’s been banned in over half of the United States—and Sia is promoting it.
Why?
Because she doesn’t care.
No matter what anyone tells you about her “good intentions,” how she “wanted to help the community,” it’s not true. Sia clearly doesn’t care about autistic people. We are to her what we’ve been to so many other people: little dolls to twist and turn, puppets to use to tell “heartbreaking” narratives. People like Sia believe they’re heroes for trying to represent us and we should be grateful that they would even try, no matter how harmful it actually is to us.
There is no good reason to watch Music. The only person it helps is Sia, and it hurts the entire autistic community. Instead, seek out media actually created by autistic people. There’s a wide spectrum – pun intended – of works out there for you to consume, almost all of which are infinitely better than Music could ever be.
Support actually autistic people: silence the Music for good.
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The prone restraint sequence was rather full on and I did find myself wondering what is the accepted way to handle such situations. All I’ve heard so far is this is not the way, not any insight on how it should have been handled. I have heard this has been cut from the film now and that is probably for the best.
This leads to the second point, this is a movie, cinema, an art form, not a documentary. You can be offended by the characterisation or exaggeration of a character, but insisting they should have been played by an actor with the same … well anything really is again missing the point. I mean where is the line for that? How about Kate Hudson playing a recovering addict? I didn’t find it terribly convincing acting either, should it have been played by an actual recovering addict? Should doctors in film only be played by doctors in real life? It’s an absurd request and I don’t think neccessarily helps.
Sia has not done herself any favours with some of her comments on twitter and in interviews. It is hard to understand where she is coming from as I haven’t yet read or seen any first hand accounts of what she was actually trying to achieve with this film.
To me it seems like she wanted to make a story of a girl who lived in a world of music clips, so from that aspect Maddie seems a good choice, as she has already done a few clips with her. At what point the character was made out to be a non-verbal autistic girl I’m not sure, but it is a choice that could have used better research and execution.
Note: I was diagnosed as bipolar and although I struggle with accepting the label. I however have little issue with non bipolar people playing bipolar people in film and TV. I actually think Mark Ruffalo did a pretty decent job of ‘being bipolar’ in ‘infinitely polar bear’. There are others depictions that are perhaps a bit exaggerated or mysticized like the Carrie character in ‘Homeland’ or to a glamorised in ‘Touched with Fire’. Would these have been better with actors diagnosed as bipolar? Probably not, because I think it is in these cases as with ‘Music’ where the understanding and depiction of a character and the story they are part of is already off point.
The people involved in this movie should be ashamed of themselves! I’m a former special education Para Professional & my daughter in law is also on the spectrum. I was beaten up so badly in my classroom while trying to protect the child having the meltdown & the other students in the room. I had to have 2 operations & 4 procedures I didn’t use the holds I was trained to use because I felt it was more important to make sure that ALL of the children were safe. I sacrificed my well-being for them. I did end up quitting my job because of what happened but I don’t regret my decision to protect the kids over myself. Maybe if the people making these movies actually spent time in a Special Ed classroom they would have some respect for the person with the disability & the people who are trying to actually help them. I wonder how many people out there would take a job that pays Aprox $12-$13 an hour & get beaten up on a daily basis?
Sia is an insult to the Autism community and the developmentally disabled in general. I have been a provider for over 20 years and would and have never used the push done method to restrain any one of my clients! The best part of my day is going to work and spending time with these amazing people!! Any one of them and more could have easily filled the role in this movie. She did not do enough research or speak to enough people! I have told everyone I know not to watch this film!
After reading this, I’m DISGUSTED, she has a nerve. She should have research for her project.
There are also several books out there about autistic people BY autistic people. There’s a a movie called TEMPLE, About a woman name Temple Grandin. Wonderful movie done by someone who did their homework. I think people need to boycot Sia’s film. Maybe she should uncover her eyes for once and get rid of that ridiculous “Nellie Oleson” bow, and try again, this time getting the input of people who have autism. I don’t have autism but I do have an adult son with it. So I don’t take this information lightly. Shame on you Sia.
Thank you for posting this. I was a teaching assistant for a classroom for children with autism and I agree with your information and assessment
The most upsetting part of this is the misuse of prone restraint. As well as being physically dangerous it can trigger flashbacks of other forms of abuse.