Sunday, 22 November 2020

Sia, "Music" and outrage: when non-autistics get autism wrong

48 hours ago, I had never heard of Australian singer Sia. Then her directorial-debut film's trailer was released, and the global autistic community exploded with completely justified fury.

*****

Dear Sia,

I, like many other autistics, am beyond disgusted and horrified with "Music". Not just the infantilising, inspiration-porn-style presentation of us, but perhaps even more so with your response. "Explosive fury" is an understatement, and it came from autistics all over the world. And responses from us are pretty much unanimous: it's ableist, NT-centred inspiration porn. It's a strop with the same magnititude as those of Donald Trump. There's a whole Airbus 380 cargo-hold's worth of baggage to unpack here.

 

The trailer

This was pretty painful to watch. It's cutesy, saccharine and reeks of inspiration porn. Although you wanted it to be "feel-good", that is nothing like what I and so many autistics are feeling. Obviously I haven't seen the entire thing because it's not out until February next year and we have only the trailer to work from. It looks like it had the potential to be quite fun...except it ended up feeling anything but, because of the way it was handled. 

It starts with the sister saying "this magical little girl", which suggests that Music is aged 10 or under. It was a shock to see that she's actually coming into adulthood. It's infantilising and reinforces the myth that we are perpetual children. Trust me, we're anything but. The "pure", "innocent" stereotype is old, overdone and clichéd, too, and we're sick of it. It's the perpetuation of this stereotype that contributes to people presuming our incompetence. Depriving us of experiences. Removing our rights and access to the world and information. Endangering us. It's myths like this that lead to us being denied sex education, valuable information about consent, the right to live outside of the family home or some sort of institution. You're simply adding to it and making it that much harder for us to demonstrate our capabilities and our competence. This phrase would probably work well enough if she was, say, 12 or younger, but at 18 it's painful.

"Magical" others us, implicitly encourages others to see us as not quite human, and that is damaging; it also carries an infantilising undercurrent, especially given the tone used. I'm getting vibes of Music's role turning out to be the "angel" sent to "rescue" the sister from what I've read about her, and we as a community are so sick of this narrative. We are not here to rescue you, to teach you to be better human beings/teach you life lessons.

The other big problem that I can glean from such a short trailer is that there's a strong whiff of the abled "protector/saviour" in the sister. Those narratives are infantilising and make our skin crawl.

Stella Young: Not Your Inspiration

 

Language use

https://twitter.com/Sia/status/1329726137375870976


First, your choice of language to describe us (and refer to disability generally) is atrocious, inappropriate and offensive. "Disabled" is not a dirty word and the linguistic contortions you put yourself through in a desperate attempt to avoid using it (like so many before you) is painful to watch. Many of us actively embrace the term, and you are doing every disabled person a huge disservice in your efforts to say anything but "disabled". You reinforce the taboo of the word, reinforce that it is A Word That Must Not Be Spoken. In doing so, you erase our reality, you erase our struggles and difficulties. You send a very public message that our way of being is fundamentally, inherently wrong.

"Special abilities" is cringey, infantilising and painfully euphemistic. We see no difference between that and "special needs". We hate "special needs". We've been shouting this for years. "Special abilities" also implicitly contributes to the falsehood that we all have some kind of savant ability - and that's simply not true. Don't perpetuate it. This is an excellent video that you need to watch: Not "Special Needs"  

Use the language we prefer.

Additionally, we are not called "special abilities" now; that's just you. It's literally just you. Just you, like so many others before you, deciding on a term for us, without consulting us, imposing your uninformed, ignorant, infantilising, patronising, inappropriate term on us. You are not part of that community, therefore it is not your place to hand out labels. And your phrasing of it in the Variety interview presents it as a a term that's in widespread use, and it isn't at all. This is sheer arrogance.

And then there's your use of functioning labels:

3 years of autism research and you didn't know how restrictive, inaccurate, offensive and inappropriate that terminology is? Pull the other one. If you'd put in the effort, you could easily have found this out - we've been talking about this for years. There are so many articles, blog posts, memes, etc. explaining precisely why it's such harmful language. You know who uses that terminology? The Martyr Parent crowd. The clinicians who view us through a lens of deficits. So much of your language indicates that they, not autistics, were your primary source.

You say that you have cast a number of "neuroatypical" actors (see below, under "Using trans people as a shield"). I'll be frank, I've never come across this word before and it doesn't have anything like common usage in the neurodivergent communities from what I can tell. It's a poor choice of wording because it's so similar to "neurotypical", with a difference of only a single letter, and because it's in the middle of the word, the 'a' gets completely lost. I've seen it quoted as "neurotypical" instead of "neuroAtypical" in a number of articles because people haven't seen that extra 'a' - it's not in common use so nobody was looking out for it. I didn't even notice it at first, and it took several re-reads due to the sentence not making sense (because I was reading it as "neurotypical") before I spotted it. It's not dyslexic-friendly in the slightest. Besides, "neuroatypical" does not necessarily mean "autistic", so that doesn't actually tell us whether there are autistic cast members or not. They could be dyslexic, have AD(H)D, Tourette's... There's a plethora of neurodivergences beyond autism; "autism" and "neurodivergent"/"neuroAtypical" are not interchangeable.


Omission of autistics

So who was this autistic actress you supposedly originally hired? A lot of the autistic community aren't actually convinced that this is even true, given your close relationship with Maddie Ziegler, and suspect you're just claiming to have originally hired an autistic actress but never actually did, to deflect criticism from that angle. I'm not sure what I believe on that front, but I'm sure you can understand the scepticism of so many.

https://twitter.com/edgar_a_bitch/status/1329826164819550208

https://twitter.com/sia/status/1329723656768024577


https://twitter.com/sia/status/1329721477025947648

Before the first rehearsal Ziegler was concerned that people (i.e. autistic people) might think she was making fun of them, to the point that she turned up in tears. She was absolutely right to be concerned: just look at the fallout. But you pushed her to continue anyway, and dismissed and invalidated her very real and valid concerns.

(Let me make this clear: Maddie Ziegler, if you ever read this, we are NOT UPSET WITH YOU. You did your job, you did what you were directed to do. I am not angry or hurt by you. And from what I've seen across the autistic community generally, neither is anyone else (if there is, they're in a tiny minority and I haven't seen anything). It is SIA we are upset with.)

Sia, you've basically said that we autistic people are too difficult to work with. Which in this case clearly translates into "I wasn't willing to make accommodations or change the environment". If you'd really done good research, if you genuinely wanted to better represent our community, you would have made those accommodations. By your logic, would you hire a hearing actor who knows a few signs rather than hire a Deaf actor whose first/preferred language is sign language (I'm deliberately not specifying any sign languages because there are many and it would depend on location) because it would be slightly slower communication-wise and there are costs of hiring interpreters, etc? Would you favour an able-bodied actor who then crips up to play a wheelchair user because it would be too difficult to make the physical accommodations (including provision of appropriate toilet facilities) for a wheelchair-using actor? My gut instinct is that the answer would be "yes" (accompanied by some half-baked excuse).

Judith Drake's article "My Left Foot: The cripping-up debate" has an excellent discussion on the topic of cripping up, and includes a number of other articles on the subject.

Also, the inclusion of "beautiful" is cringeworthy - what does a person's beauty have to do with any of this? It's irrelevant, patronising and superfluous. As for "young girl" - no. Absolutely not. This is so inappropriate and infantilising for a character that is approximately 18. If she was, say, under 10, it's applicable. But by using the phrase in relation to a young adult, you are contributing to the myth of us being perpetually children, just because we don't conform to NT notions and behaviours.

By presenting us as too difficult to work with, that sends a message to others who may be considering hiring autistic actors. What if they initially decided they specifically wanted to hire an autistic actor but changed their mind after what you've said? Or have just hired an autistic actor but then doubt their choice and renège on on that? Have you any idea of the long-term damage this could do to already-marginalised autistic actors?

This decision was, according to you, "compassionate". Do you truly expect us to believe that? There are so many autistic actresses out there who I'm sure would have done a damn good job (and a number of them reached out to you). This is disingenuous and arrogant.

https://twitter.com/Sia/status/1329735312126455814

But then, you were rude to someone who pointed out that you were merely making excuses, without having seen any of their work. Rude, judgemental and completely without foundation. Personal attacks are an ugly look.

https://twitter.com/Sia/status/1329738992519147521 


When it comes to assessing the accuracy of the portrayal, instead of sending it to a variety of autistics for feedback, you sent it to...the Child Mind Institute. A place that describes us solely in terms of deficits, uses person-first language exclusively, presents autism as a linear mild-to-severe spectrum, talks about "risks" of autism and promotes ABA as a "treatment", as well as directing people to the Autism $peaks 100-Day kit. https://childmind.org/guide/guide-to-autism-spectrum-disorder/

This is unacceptable. The best people to give you accurate, authentic feedback is autistic people, not a group of non-autistics. You've said that Music is based on a friend's autistic brother. Did you run this caricature past him and get his feedback? What about a viewing with some autistics? Given that nowhere that I can find have you said you did, we can only extrapolate that you haven't. What is not said, what is omitted, is just as revealing as what is said, what is included.

 

"Rain Man: The Musical"

Another clear indication of how out-of-touch you are with actual autistic people is the way you referred to it as "'Rain Man: The Musical' but with girls". When you said this, I winced. A number of autistic people over the years have written about their issues with this film (not least that the character is never officially labelled autistic) and I can definitely see the parallels. Given the community's feelings towards that film, though, you've done the opposite of selling it to us. For its time, it wasn't toooooo bad (although it does still have a number of deeply problematic elements, which have been discussed widely by autistics; my own feelings towards and opinions about it are very ambivalent) but it's very outdated now. The world has moved on. We have a far better understanding of autism now. By comparing "Music" to "Rain Man", you're basically taking us back over 30 years and that is not a good thing.


Support and promotion of Autism $peaks 

You claim to have been immersed in researching autism for 3 years, yet you still appear to be utterly clueless about how harmful Autism $peaks is, how they are almost universally regarded as a hate goup by the autistic community. That you had no idea they were so "polarising". 

Bluntly, I don't buy it, not if you'd spent any significant time with autistic people and in the autistic community. 3 days, maybe, but 3 years is more implausible than Torquay United winning the 2020-21 Premier League title (for context for those of you unfamiliar with English football (soccer), Torquay are in the 5th tier of English football and the Premier League is the top division, and would require 4 promotions to even get into the Premier League). We're extremely vocal about A$. We constantly educate people about them. There are tons of articles all over the internet explaining, often in great detail, why they are so problematic and harmful. And yet you claim you didn't know??? Sounds like an excuse (something you're full of), nothing more. 

It gets worse. On April 2nd you tweeted this from A$: 

https://twitter.com/Sia/status/1245761824902901760

People educated you about why A$ is a terrible organisation and not one to support, and gave you alternatives such as ASAN and AWN. You thanked them for the education in this tweet:

https://twitter.com/sia/status/1245768272420564992

 

...And then on November 13th 2020, only a week ago, you retweeted something from A$ on World Kindness Day (and added a blue heart...). 

https://twitter.com/Sia/status/1327305594890403841


 

So you clearly had no intention of genuinely educating yourself. Don't try to claim otherwise, because it's there in your own words and images. 

As for promoting the notion of "be kind"? In your case it is clear, audacious hypocrisy, because "kind" is the LAST thing you have been to so many of my neurosiblings, so many disabled people and basically anyone who has called you out.

 

Using trans people as a shield

https://twitter.com/sia/status/1329736604819316737

Moving away from autism for a moment, you go on to use the trans cast members as nothing more than shields, defensive trophies to shout about how amazingly inclusive you're being, and to deflect and shield yourself from any criticism about inclusion. There is no good reason whatsoever to bring them into it unless the trans actors are also autistic/neurodivergent. You've reduced them to a box on the Inclusion Bingo card, to make yourself look super-inclusive. You want a pat on the back from putting them as doctors, nurses and singers instead of prostitutes and drug addicts. No, you don't get a medal for showing a basic level of decency towards marginalised groups of people. This is about you trying to save face.

https://twitter.com/NotLasers/status/1329824873489854464

 Oh, and to add insult to injury, you did this on Trans Day of Remembrance.

 

Intentions v. impact

https://twitter.com/Sia/status/1327305594890403841

You say your intentions are "awesome" and that your "heart has always been in the right place". I don't give a f*ck what your "intentions" are. Are you at all familiar with the phrase "The road to hell is paved with good intentions"? Because that's certainly applicable here. Impact is greater than intent. Always. You're using the "but my intentions..." line to discredit, deflect and silence criticism, to basically victim-blame us for having the audacity to be upset about your non-autistic representation of an autistic person.

 

Sources and engagement

Following on from the above tweet, it is clear that you prioritise and focus, as so many "real life" autism narratives do, on those around the autistic person, rather than the autistic person themselves. You admit that in the above tweet, wehere you say that this film is "a love letter to caregivers and to the autism community". Not the autistic community. That sums up in a nutshell who you have written this for. Not us. You're yet another non-autistic taking our story for yourself. Profiting off our neurology.

Are you aware that there is a difference between the "autism community" and the "autistic community"? If not, how and why not, given your supposed 3 years of research? It's one of the most basic distinctions out there, and if you'd engaged directly with the autistic community (and I don't just mean one or two, I mean with the global autistic community, with many people), you would know that. Your choice of the former rather than the latter is incredibly revealing and rather suggests that your primary source came from the former rather than the latter - and non-autistic members of the autism community are the ones who invariably get far more attention and who also frequently get it wrong.

I'd love to know the specific sources of your "research". According to various news articles, your star Ziegler "watched YouTube videos by parents who recorded their child's episodes". I've been an active part of the autism world for long enough to know that "episode" is code for "meltdown". Many of my autistic friends and acquaintances are saying this, it's not just me. That's a whole other discussion for which there isn't space here, and plenty of other autistics have written about why that sort of thing (parents filming their autistic child's meltdowns and then putting them online for the world to see, without the child's consent) is Completely Not Okay. Did she not talk to adult autistics?

https://twitter.com/fodderfigure/status/1329519783910445064 


Your place in the autism narrative

The short version: it is not your place to tell our story. I appreciate that you acknowledge that our community is "underrepresented" (one of the very few things you've got right, and it was nice to see that the autistic character was female, which is still a rarity even within autism representation - although there's also a distinct lack of trans and non-binary autistics, and AAC-using autistics); however, if you truly want to increase that representation, you should use your position to promote the many actual autistic writers, actors, directors, producers, etc out there who would benefit far more from the publicity and support. Hire autistic scriptwriters. Hire autistic actors. Hire other autistic staff. And accommodate them. Then you'll get a far more authentic representation of us. Fund our projects, use your huge platform to shout about our work, give us opportunities to shine. Increase our representation that way. Not with this. Not by speaking over us. Not by projecting your personal, second-hand, non-lived-experience, non-autistic-coloured outsider view of us. Amplify us.

https://twitter.com/dacy_alex/status/1329919378834546690


Response to criticism

Then there's the way you've responded to criticism. I get it, nobody likes being criticised, being told they've got it wrong, that they've caused hurt, damage and offence. Yes, it hurts. Yes, it's upsetting. I've been there, done that. I doubt there's a single human on the planet who hasn't. But how you deal with it is revealing, and your aggressive, profanity-filled attacks on anyone (primarily autistics) who points out a problem is a stark contrast to Anne Hathaway when people with limb differences (I gather that's the preferred term) expressed their hurt and concern about some of the editing decisions taken to remove fingers and toes in the recent fim version of The Witches. She didn't try to defend the move, didn't try to argue with or invalidate the perspectives, feelings, etc of people with limb differences, didn't try to fall back on the "but my intentions..." line; she acknowledged that although her intention was not to cause harm, she realised she had in fact caused harm, and so she apologised wholeheartedly, acknowledged the harm she had inadvertently caused and promised to do better, without using the "but my intentions were good so that makes it OK and invalidates your hurt and criticism" line that you, Sia, have used. On top of that, she encouraged people to educate themselves on the #NotAWitch hashtag. 

You can read the article about Hathaway's response here: Anne Hathaway apologised and promised to "do better"

THAT is how you respond. You put your ego aside, you acknowledge and recognise the hurt you've called (and you identify it), you admit and accept that you got it wrong, you apologise (without quantifiers like "if" or "but") unreservedly, you do better in the future (and actually do better, not merely say you're going to and then carry on as though nothing happened) and you encourage people to be more educated.

You seem completely unable to recognise the harm you have caused (or if you do, refuse to publicly acknowledge it). Is your ego and self-image so over-inflated that you see yourself infallible and so unflawed that you are incapable of error?

You say in your interview with Variety that you "want people to show compassion"...yet you afford precious little (or, more accurately, none whatsoever) of it to the people you have hurt, instead viciously attacking them.


Blackface 

Metro: Sia denies using blackface

I'm sure you and your defenders will be quick to highlight that this took place in 2011 and point out that your "reason" for doing so was to "blend in to the background. But it doesn't changed that it happened and I'm sure you could have found an alternative if you'd bothered to try. Denial and deflection are inappropriate. Any explanation should have been in the context of an unreserved apology: "I admit that I did this. While my intentions were to blend into the background and not to harm the Black community, it was thoughtless of me and I did not consider the impact and consequences of my actions. I recognise now that they were harmful and that I should have done [insert alternative] instead." Followed by a full apology an genuine determination to do better. I refer you back to Anne Hathaway, above.


There are no ladders or ropes anywhere near long enough to get you out of this hole you have dug yourself. You have revealed yourself to have a nasty, vindictive streak, demonstrated a complete inability to accept criticism, take responsibility for hurt you have caused

What part of #NothingAboutUsWithoutUs have you completely failed to grasp? All of it.

Please, do everyone a favour and stop. Just STOP. Apologise. Properly, wholeheartedly, unreservedly apologise. Pull the film. Vow to do better and then actually do better - none of this lip-service-only in a face-saving attempt to placate us. Be more like Anne Hathaway.


*edited 25/11/2020 to include posts and articles published/that came to my attention after I originally posted this, as I want to include the voices of as many of my fellow autistics as possible.

A selection of posts from other autistics:

Actually Autistic Katie

A Gay Articulate Autistic

AUsome Training

Autish

Autistic, Typing 

Charlotte Colombo

Communication First 

Echolaliachamber

Emma Dalmayne

Fierce Autie

Hazelwood Consulting

Hayden Neely

I Am Autistic

I Am Cadence - Growing Up Unique

In The Loop About Neurodiversity (blog post)

In The Loop About Neurodiversity (Facebook post)

Mickey Rowe 

Naia B

Paige Layle

Parenting Through The Fog

Queerly Autistic

Sara Gibbs 

Stim for the Planet

Tania Melnyczuk

Yessica


Other articles and posts:

Carrie Grant 

Crutches & Spice

Digital Spy

Entertainment Weekly 

IndieWire

JustJared (also contains the trailer embedded in the article)  

NowThis News 

Wheelchair Rapunzel 

The Daily Beast 

The Metro

 

Appendix:

The screenshots from the YouTube video come from here: https://www.youtube.com/watch?feature=youtu.be&v=-j2QZyKdx_g. It can also be found on the official Variety YouTube channel: https://www.youtube.com/watch?v=SIVppt0YPio

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