I have Autism Spectrum Disorder, or ASD for short. Over the past few months there has been some discussion surrounding megastar Sia and her upcoming movie Music.
The controversy has centred on Sia’s decision to hire a neurotypical actor – Maddie Ziegler – to portray a character on the autism spectrum. Does this make Sia ableist?
From the get-go, the genuine concerns within the autistic community, and our responses to the pain that Sia has caused, has been labelled ‘Cancel Culture’ and an overreaction.
But my community isn’t calling Sia ableist simply because of the hiring. It is about everything Sia has done since by the media, especially here in Australia.
Although I think Sia probably means well as she clearly thinks she is helping, her conduct and refusal to stop is only causing more pain. So far everything has been presented in a way to defend Sia instead of hearing our side of the story, so I will be breaking down the entire issue from the perspective of someone on the spectrum.
Nowadays, every time a disabled character is written, directed, and portrayed by people who are not affected by that disability it is called out, unless, for some reason, that disability is autism.
Until people like Adam Hills took the issue to the mainstream media, we were completely ignored.
When you’re making a film, it is the writer, the director and the actor who wield the power over how a character is portrayed.
It nobody in those roles have the disability being portrayed, it leads to terrible characters. Characters where their whole personality is their disability. And endless false stereotypes – like the extremely hurtful and common ‘Character with Autism Has No Empathy and Learns to Develop Empathy Over Their Character Arc’.
Along with the media praising shows like The Big Bang Theory, a show that uses autism as such a caricature that the term ‘Sheldon Cooper’ is now used as a shorthand to denote the most offensive a portrayal can possibly be, it’s safe to say we are a bit hesitant when we aren’t involved. It is no coincidence that the portrayals like Abed from Community that are praised by Disability groups are created by people with the disability.
If you’re wondering whether Sia’s film suffered from this, take a look at the trailer. Maddie’s performance seems similar to Sheldon Cooper and the movie seems to be about using music to escape from autism, which – if that is what it’s about – is extremely fucked up.
And in case you’re wondering, having ‘consultants’ simply isn’t enough. They have no actual power. The ACTUAL creator of Dragon Ball consulted on the film adaptation Dragonball Evolution and they overruled him, even when he pointed out the fucking name was spelled wrong.
The first proper ableist moment with Sia was when she began to ‘defend’ herself and the movie. She told reporters in breathless terms that she’d spent three years researching autism. She said that she worked with the group ‘Autism Speaks’ to make sure the movie portrayed autism well.
This was the first big problem.
For those of you who don’t know Autism Speaks is hated by every disability activist group because they are horrible and actively encourage hate against people like me. They have referred to people with autism as a ‘disaster’ and defended anti-vaxxers for their views on autism. Fucking anti-vaxxers!
The people who would rather risk their child and other people dying from a fucking horrible preventable disease than risk a (non-existent) chance of autism! Autism Speaks has done a lot of other bullshit too, which you can read all about on their Wikipedia entry. If that sounds lazy to you because checking Wikipedia is barely doing any research, please remember that Sia didn’t even do that level of research!
This was her first moment of ‘misinformation’, a pattern she continues to adopt. After the backlash, Sia then immediately denied she had worked with them and said they joined the project after the movie was made. Sia has also said she didn’t realise the group was problematic.
So we shouldn’t be quick to judge Sia because she’s done ‘three years of research’, but that ‘research’ was so scant that she didn’t even know that the group that she claimed to work with (and then claimed she didn’t work with) was an anti-autism front group. Right. Just so we’re clear.
Another big issue was Sia’s responses to the initial criticism of the trailer to the movie. While I won’t go through all the now deleted tweets, many of which used terms that were outdated even before she began her ‘research’, here are a couple to remind you of the kind of shit she was saying:
Exhibit 1: Attacking people who pointed out that she didn’t do an open casting for people on the spectrum.
What a fucking good role model she is for kids everywhere!
This one is one she has been praised for by the media, so let’s break it down. Let’s put aside the fact that this conflicts with what she has said about making the project with Maddie in mind and talk about how this excuse isn’t as good as it appears to be.
First of all, if Maddie is allowed to play the character surely someone on the spectrum but isn’t non-verbal still would have been a better choice because that is just one trait. So, unless that one trait is all the character is, then someone who isn’t non-verbal would have been a way better choice. Again, doesn’t look good for the portrayal of the character if she has to defend that specific part.
Second, people with non-verbal autism can eventually become verbal, something that definitely would have come up with all that research Sia keeps patting herself on the back for. So why not use an actress who used to be non-verbal but isn’t?
Lastly and this one is very important, if you want to tell our story and your workplace isn’t conducive for one of us to be there, you have to fucking fix that shit! Why the fuck are the media acting like that was a good point? That is the dumbest bullshit out of all this! Having a disability friendly workplace should be encouraged, especially if you are using that disability to make money for fucks sake!
Now this tweet is bad for several reasons. The thing about ‘level of functioning’ is another example of Sia’s ‘research’ not coming up with how ‘level of functioning’ is an outdated metric that is no longer used due to autism not existing on a linear scale which people who use ‘level of functioning’ tend to claim does exist. This tends to lead to people judging people by ‘how autistic’ they are, which is not a thing, but presents autism as something that is a negative.
The main problem and example of actual ableism is the following part: “I’ve never referred to music as disabled. Special abilities is what I’ve always said…”
Oh, get fucked!
To those of you who don’t know the issue with that, let me explain. We are disabled, that is it, that is what we are and the term that we use. ‘Disabled’ does not inherently have a negative connotation, any perceived negative connotation is because either the user or the person hearing it sees it as being used as an insult or to demean. Terms like ‘special needs’, ‘differently abled’, ‘special abilities’ are all super condescending and feel like they come from people who don’t feel comfortable thinking about disability, especially when people frame our disability as some sort of superpower.
If we were to make a version of Get Out for disabled issues instead of race issues, ‘I don’t use the term disabled’ would definitely be somewhere in that movie.
That’s why we became comfortable calling her ableist after the first Twitter argument, because we had seen it all before time and time again. We had that feeling that something was wrong: where they hadn’t dropped a slur, but you know that they don’t see you as a regular person.
Again, this is a thing that I am surprised didn’t come up in three years of ‘research’, disability activists have been calling for that shit to stop for years. No, but she did enough research to be in control of a movie about the disability, apparently.
Also, we can’t forget about this fucking gem that she ended it with:
Man, she really did a good job listening to the community she is committed to representing right?
Also, quick side note, this isn’t about the ableism it’s just something that bugs me with movie makers in general. What the fuck do you mean don’t judge the movie by the trailer? Isn’t that the whole fucking point of a trailer?
Also, when the trailer has a performance that seems to be an impression of Sheldon Cooper, why the fuck would we want to see two hours of it first? Why is it that trailers are only useful for judging a movie when audiences like the trailer?
Sorry, back to the point.
Now I want to talk about the apologies that never actually happened. Ever since the first day, and especially after this interview with the Sydney Morning Herald, the media has vaguely said she has apologised but never actually quote her apologising. That is because she hasn’t, at least from what I have been able to find.
In the interview she said she ‘should have just shut up’ but ask any primary school teacher if that counts as an apology. In fact, that interview includes some of the worst stuff she has gotten away with.
“[Maddie] had researched her role for two years, we watched movies together, and I taught her the nuances and ticks I had observed from [a] friend [with autism].”
Maddie doesn’t deserve to have hate sent her way. Obviously, none of this is her fault. However, Sia keeps bringing her up as if we came at her, but we didn’t. Every issue we have with Maddie’s portrayal goes back to Sia. She cast and directed her. Sia was also the one to give her that bullshit ‘research’.
First, watching movies is not a good way to learn how to portray autism, as most portray it poorly. The good portrayals are almost all on television shows.
Second, that she went about using her own observations of ‘nuances’, while probably well meaning, is not good. Observing people on the spectrum is not the same as being on the spectrum. If you can’t explain the why, don’t depict the what. The ‘important nuances’, whatever she is talking about, isn’t what is needed for a nuanced performance.
The way she mentions that she has a friend on the spectrum is worth pointing out. It isn’t super important, but I think it is just funny that she would try the ‘I can’t be ableist, I have a disabled friend’ defence. I mean surely you give up at that point.
Then she said the worst thing she’s ever said:
“What I do know is that people functioning at Music’s level can’t get on Twitter and tell me I did a good job either,”
There is a lot in that sentence.
So, like I mentioned before, the idea of ‘low-functioning autism’ is a long outdated and problematic scale, that she uses a lot despite her ‘three years of research’. But that isn’t close to the main problem.
In case any of you were wondering, yes, people with autism can use social media. Using it has its advantages and disadvantages, however early research has shown that people with ASD can thrive on social media. Everyone with ASD is different, but again surely while researching a movie about how music can help people with ASD, the fact that technology is becoming one of the ways to help as well would have also popped up, right?
Here is the thing, Sia did not say this to make a point or have a teaching moment, she did it to discredit those criticising her. It has led to stans on Twitter saying that people who have complaints could not actually be on the spectrum because otherwise they wouldn’t be able to vocalise their opinions.
That is not why she was not getting praise; it was because she doesn’t deserve it.
If you are wondering, ‘hang on, haven’t I heard that line before?’, that’s because you have!
Remember when a bunch of stupid ableist man-children tried to attack Greta Thunberg? Remember when they said stuff about ‘handlers manipulating her’ because she ‘wouldn’t be able to express her own opinions in public forums’. Sound familiar? The only differences I see is that those ableists aimed the horrible generalisation at one heroic girl and Sia generalised our whole community.
According to the media, only one was factually inaccurate ableism. The other was merely Sia showing how much she has listened and grown.
While I’m at it, quick shout-out to the Sydney Morning Herald for not pressing her on that or providing at the very least a factcheck. Way to fight truth-to-power and hold those in power responsible for the damage they cause. Fuck me, you have such good editorial standards.
The thing that really inspired this article was not any of those, it was the last thing I want to bring up. The interview Sia did for The Project with Lisa Wilkinson on the 3rd of January. The Project has won a lot of awards over the years, including ones for stories about issues affecting disabled communities. Safe to say my heart sunk when I saw this post on twitter:
I’ve always loved @Sia – her music and all she stands for – and tonight she doesn’t disappoint. Hope you can join us at 6.30PM.
The SUNDAY @theprojecttv Back live on @channel10 https://t.co/qfJky1WDtJ
— Lisa Wilkinson (@Lisa_Wilkinson) January 3, 2021
If you are wondering if the interview was one of journalistic merit calling out Sia for her consistent lies and/or mistruths, her direct and in direct ableism, or even the way she clearly does not care to listen to our community; it wasn’t. The entire interview was a celebration of Sia.
A lot of focus has been put on the one question surrounding the issue of ableism, but again it has been represented in a way that favours Sia. Wilkinson ignored the criticisms and asked if hiring Maddie was ableist. ‘Yeah, but she said it was, she owned up’, well lets double check that shall we.
“I realized it wasn’t ableism. I mean, it is ableism, I guess, as well — but it’s actually nepotism, because I can’t do a project without her. I don’t want to. I wouldn’t make art if it didn’t include her.”
She has not learned shit. I mean, we all knew it was nepotism, that was never up for discussion. The only thing this did is disprove the claim that Maddie was not originally in the movie and was added later. Did they call her out for the lie? Of course not.
‘Why is it such a big deal?’
The stuff I heard through this entire controversy were the same things I have heard my whole life.
From bullies at school who spat on me or beat me up to the point I was hospitalised 3 times in 5 years, from the teachers who wouldn’t stop bullies calling me ‘Sheldon Cooper’ or ‘the Spastic Ret*rd’ during class, or the Vice-principle who said ‘If you were more normal, they wouldn’t bully you’, or the friends I have lost as an adult after they learned I was disabled, or the university textbook used around the nation to teach upcoming teachers how to teach diverse students that argued experts are wrong because ‘Students with Asperger’s unlike autistic students are not intellectually challenged’, or the ER Doctor who took over my care while I suffered a stroke and sent me home without treatment because “it’s hard to trust the symptoms of an autistic patient”.
Now if I had to guess, none of those people thought they were being ableist, and I am not saying I think Sia is at the level of some of those people, but that is why these issues and how they are covered are so important. Those bullies did not call me ‘Sheldon Cooper’ for no reason. Our representation in the media matters. Misrepresenting our arguments as if we are lying about Sia puts into people’s minds that we are not trustworthy or that we bring things upon ourselves.
So anyway, about the movie. Please don’t go see it in theatres. We all know the only thing Hollywood cares about is money. I mean if The Big Bang Theory can win awards, Hollywood clearly doesn’t care if we get hurt. After all of Sia’s lies, all her subtle and not so subtle ableism and the absolute shit show that is her ‘3 years of research’, please don’t support the movie. If you want something to watch instead, I suggest watching Hannah Gadsby’s Netflix specials. They are amazing.
This Shot article is by John Delmenico, you can find him on twitter at @thebigjohnnyd