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

Sunday, 16 August 2020

Cinderella, Prince Charming and prosopagnosia

 
 

Why doesn't the prince in Cinderella simply go round all the homes in the area and look at the women's faces to identify the owner of the lost glass slipper? After all, he's danced with her all evening and he's fallen head-over-heels in love with her, so it should be easy, right? 

Actually, not necessarily.

There's a condition called prosopagnosia - in lay terms, "face blindness" (and it's relevant here because it's something a proportion of autistics have; I myself don't as far as I know, as I'm generally pretty good at recognising faces, although I do have what I call "context blindness", where I don't recognise someone I know if they're in a setting/context I'm not expecting to see them in). There's also the fact that people can be difficult to recognise if their appearance has radically changed.

It won't have had that technical label at the time Cinderella as a story was created, but I'm sure that as a concept it will have existed.

Theory: the prince in Cinderella had prosopagnosia. And that is why he had to go round every single home with the slipper - because his brain simply could not identify and recognise faces. He needed an alternative cue, which in this case is the unique, slipper, magically-tailored to only fit Cinderella's foot, in order to identify the woman he's fallen in love with.

Maybe someone else has already put this theory out there online (if they have, I've never come across it). I've just seen a couple of memes mocking the prince, and come across several articles about unanswered questions and ridiculous things in fairy tales/Disney films, in this particular case saying how implausible it is that he doesn't recognise her. And then this theory occurred to me.

 Edit: I can't find the original meme (either it's been deleted or the original poster has changed their privacy settings) but here's another one:

 

Some resources on prosopagnosia:

Centre for Face Processing Disorders (Bournemouth University)

Face-Blind: Why are some of us terrible at recognizing faces? By Oliver Sacks 

Looking beyond the face area: lesion network mapping of prosopagnosia

NHS: Prosopagnosia (face blindness)

Oliver Sacks describes his struggle with face blindness 

Prosopagnosia Research Center

Prosopagnosia: The artist in search of her face 

Prosopagnosia: What it's like to live with 'face blindness' 

Striking a Path into Neurotypical Space – Yenn Purkis

Friday, 24 July 2020

Open letter to The Telegraph


In reference/response to the following article:

Face masks in shops: rules on compulsory coverings, fines and who is exempt from wearing one 


This appeared in The Telegraph, a UK newspaper, on 23/07/2020.

(I don't actively seek out this publication to read, as their politics and worldview contrast greatly from mine; it came to my attention as a news article via the Upday news app that my phone came with, so I read it to see what they said about autism-related exemptions.)

**********

Here is what I wrote to them:


I am autistic. This is highly relevant to the article content.

The article, when detailing those who are exempt from wearing face masks, uses the phrase "Those who suffer from autism". We suffer from the impact of a world that does not (and frequently will not) accommodate our differences. We suffer from systemic, societal ableism and discrimination as a result of having a neurology that deviates from the majority of the population. We suffer from co-occurring conditions (particularly mental illness) brought about from trauma, bullying, ableism and discrimination due to being different from the majority. We suffer from low self-esteem and a sense of being "broken" and "defective" as a result of constantly reading things like this statement, phrases that reinforce the (false) notion that we are lesser, inferior, wrong, a world telling us we are inherently defective and that our way of being is unacceptable.

We DO NOT "suffer from" autism itself.

This is a highly offensive phrase.

This type of language is deeply hurtful and harmful. It is outdated, inaccurate and ignorant, clearly written by those who have no real knowledge or understanding of autism or what it means to be autistic. Autism is not a disease; it is a perfectly natural variant in human neurology that means we process and interact with the world differently from the neurotypical majority.

This phrase being used in such a prominent, wide-reaching publication such as The Telegraph causes significant harm to autistic people, and normalises and renders acceptable to the wider public such pathologising language. It perpetuates the notion that autism is something terrible. It perpetuates fear and misunderstanding. It enables the flourishing of false, sometimes dangerous "treatments" such as MMS and the Nemechek Protocol. It promotes (often insidiously) the notion that eugenics is acceptable when it comes to autism. It is complicit in the filicide of disabled children by their caregivers as something understandable and makes it acceptable in the public mindset to sympathise with the caregiver. It contributes to poor self-image among autistic people.

The correct phrasing should be "autistic people".

**********

 24/07/2020 - They have replied to me. Apparently it doesn't breach the Editors' Code so it cannot be considered a "complaint", so it's been passed on to the editorial team. I just replied in an effort to educate them on suitable language and hopefully obtain some sort of promise or guarantee that they will never again use such atrocious wording. I have also said that I am happy to continue the conversation regarding appropriate language in relation to autism.


If you want to add your own voice to pointing out the inappropriate wording, either use their Contact form https://www.telegraph.co.uk/customer/contact-us or, if you are unsure which option to select from the drop-down menu, there is the general email address at the bottom of the Contact Us page.

Sunday, 26 April 2020

Response to Autism Speaks' "Steps For Kindness"


On April 25th 2020, Autism $peaks held a virtual/individual alternative to their usual "Autism Walks", due to the current coronavirus Covid-19 situation. You can find it here: https://www.facebook.com/autismspeaks/videos/666979750790422
Word about the event, as so often happens, swiftly got around the autistic community. Autistic people flocked to the live-stream video to speak.

Here's my contribution. To my knowledge, as of 5pm 26th April, it is still there (although it's hard to find now, due to the 4,400 or so other comments, many of which are from other autistic people speaking out against Autism $peaks and the hypocrisy of this event, which is fantastic to see; A$ has been deleting comments left by some autistic people, but there is such a huge quantity that many are still there and visible, which is brilliant).

*****

Kindness? From your organisation? The hypocrisy and doublespeak is so intense that I'm not sure whether to laugh or cry. Why? Because kindness is the LAST thing you as an organisation has ever shown autistic people.

You want kindness, Autism Speaks? I have a few suggestions (not in order of importance, just the order in which I think of them) - and for the record, I am autistic:

1) Stop constantly and persistently silencing #actuallyautistic people (that includes deleting any comments that you don't like) - start LISTENING to autistic people; you say "It's time to listen" but it's perfectly apparent that that does not include listening to autistic people

2) Stop constantly and persistently ignoring #actuallyautistic people - start taking on board what we say and actually do something productive and constructive (such as what we suggest)

3) Stop using and promoting ABA, which is a harmful intervention that causes PTSD in autistic people (I recommend you start with Henny Kupferstein's research on the matter), an "intervention" with the same principles and practices as gay conversion therapy (Lovaas is responsible for both, in case you were unaware)

4) Stop treating us like tragedies and burdens (I Am Autism and Autism Every Day make it perfectly clear what you think of us), and that includes continuing to uphold parents as warriors and superheroes and so on just for BEING PARENTS (it's literally their job description, they chose to have children) because that sustains and reinforces the notion that parenting autistic people is so much harder and that it's basically a nightmare

5) Stop using the puzzle piece for autism - it needs to be consigned to the history books; we are #PeopleNotPuzzles (check out https://intheloopaboutneurodiversity.wordpress.com/2019/03/20/the-ableist-history-of-the-puzzle-piece-symbol-for-autism/ for your introductory reading, and then start doing some more reading, and there's some good research showing that the puzzle piece has inherently negative connotations) - we do NOT have pieces missing, we are NOT puzzles, and we'd seem far less puzzling if you actually LISTENED to autistic people

6) Apologise for the aforementioned horrific short films painting us as tragedies, burdens, etc, and that an autism diagnosis warrants grieving (yes, you have significantly contributed to that mentality and culture)

7) Stop blindly supporting the parents who murder their autistic children (your tragedy/burden narratives in the aforementioned films are drectly responsible in part for enabling and perpetuating that mentality) because of their disabilities, and start channelling far more resources into supporting those people and families who are struggling

8) Start putting substantially more of your funds towards actually supporting autistic people (and that does NOT include ABA)

9) Stop treating us as broken neurotypicals in need of fixing (again, that includes stopping promotion of ABA); we are NOT neurotypicals "trapped" inside a "shell" of autism, we are autistic through and through; we DO NOT NEED FIXING

10) Stop using person-first language ("with autism"/"has autism") and start using the identity-first language ("is autistic") that the overwhelming majority of autistic people prefer (by all means use both, but the exclusive use of PFL, despite you being told again and again and AGAIN, even on your own polls, that we strongly and overwhelmingly favour IFL, makes it abundantly clear that you ARE NOT LISTENING TO AUTISTIC PEOPLE. https://autistic-on-wheels.blogspot.com/2019/07/resource-key-articles-on-identity-first.html

11) Stop centring non-autistic parents instead of actual autistic people (this links in with 1, 2, 7 and 9 in particular).

12) And don't even get me started on how little of your funds are spent on supporting autistic people (1.7% in 2017 - yes, that's one point seven percent).

Your ableist attitudes towards us contribute to a substantial portion of mental health problems among autistic people because you contribute so much to broader societal attitudes about us. You say "different, not less", but less is how we are made to feel, and you have directly enabled this. Not just you, there are plenty of other groups, but you have a lot to answer for in that regard.

You may have made recent superficial changes, but it's going to take a LOT more than a bit of window-dressing to even *begin* to undo the massive hurt you have caused autistic people since your inception - and to be honest, it's unlikely you ever will, the damage is that severe. Actions speak louder than words.

Autism Speaks DOES NOT speak for me.

We DO NOT need (or want) a cure. Autism is a perfectly natural and acceptable neurological variation and should be accepted.

You have directly contributed, through your genderised use of blue, to the misdiagnosis and underdiagnosis of female and nonbinary autistics, because you and the colour choice (chosen for genderised reasons) have perpetuated, and continue to contribute to the perpetuation of, this myth that autism is a male thing.

You know who we SHOULD be lighting it up blue for? The NHS (the UK's National Health Service) and other care workers, especially in the current pandemic. (Blue because that's the NHS logo colour, for non-UK people.) NOT AUTISM. #LightItUpGold #RedInstead #AutismAcceptance #NothingAboutUsWithoutUs

Saturday, 26 October 2019

Resource: blue pumpkins for Halloween



So, last year (2018) a few of us in the autistic community encountered the following image claiming that carrying a blue pumpkin for trick-or-treating signified that the person was autistic:


[Text reads: AWARENESS: Trick or Treat...the BLUE BUCKET...if you see someone who appears to be an adult dressed up to trick or treat this year carrying this blue bucket, they are probably autistic. While they may have the body of a 21 year old, they love getting dressed up for Halloween. So when you see the blue bucket share a piece of candy. Spread awareness! These precious people are not "too big" to trick or treat.]


It was not, in fact, anything like the trend or convention it is made out to be. It was ONE SINGULAR Martyr Parent. The shop from which the bucket was bought sold buckets of all different colours, not just blue. There was a Snopes article debunking its presentation as a widespread trend. I wrote my own rebuttal/explanation of why it was so harmful on the Autistic on Wheels Facebook page, which you can read here:

https://www.facebook.com/autisticonwheels/posts/2001751866586022

For those readers who don't use Facebook, this is what I wrote in 2018:

First of all, this is NOT a widespread thing; it appears to be one person's thing (Snopes is a pretty trustworthy source; see the link at the bottom of this post for their more detailed verdict on the post).
Secondly, blue-for-autism is specifically related to Autism $peaks, a US-based organisation pretty much universally regarded as an anti-autistic hate group by the #actuallyautistic community. The choice of blue has been unnecessarily gendered by Autism $peaks and sidelines/ignores/excludes female and nonbinary autistics (due to the reasons it was chosen).

Thirdly, and VERY importantly, this blue pumpkin bucket will confuse matters, potentially dangerously so, with the teal-pumpkins-for-food-allergies practice. In dim light, teal and blue are practically impossible to tell apart, putting children with food allergies at risk.

Then there's the massive visual target that marks someone out as potentially vulnerable (and many kids won't want their neurology broadcast to the world without their explicit permission). There are better ways to go about this - if you *have* to do something to let people know the child is autistic, something more discreet, like a badge, is much better, or a card the child can choose to show people if they wish to.

Guilt-tripping people and manipulating their emotions by playing the disability card is NOT COOL.

Finally, the language used: "the body of a 21-year-old" and "appears to be an adult". No, they ARE a 21-year-old and they ARE an adult. This is incredibly infantilising language and implies their body and brain are completely separate entities. Then there's the use of the word "precious". *shudders* Again, incredibly infantilising, condescending and patronising. No thanks.

Let's hope it doesn't catch on - although I'm sure the moment this comes to the attention of Autism $peaks they'll want to capitalise on it in order to raise funds for their toxic brand of autism "awareness" and their not-eugenics-honest-guv research.

Naturally, as I predicted, Autism $peaks was quick to jump on the bandwagon.



Once Halloween passed, it died down and many of us in the autistic community hoped (and prayed, for those of us who are of a religious persuasion) that it would swiftly be forgotten and disappear into the black hole of the internet.

Except it didn't. The opposite did.

In the last three weeks or so it has EXPLODED across the autism community. The Paaaaarent brigade is pushing it and spreading it as a good idea like the plague, countless news outlets (including reputable, wide-reaching ones like The Independent here in the UK, from whom quite frankly I expected better) are promoting it and the autistic community wants it to f*** off and DIE.

It's now EVERYWHERE. From the lone post and image above from 2018, there is now a plethora of posts of different blue buckets, all loudly proclaiming it to symbolise that the carrier is autistic. Well, usually that the carrier "has autism". And some of them are full of infantilising language like the original 2018 post, which is UNACCEPTABLE. If someone is 13, or 21, or 35 or whatever, just say that. If you absolutely have to disclose their age at all! DO NOT say they "have the body of a [fill in age]-year-old", and CERTAINLY DO NOT say that they have "the mind of a child" or any variant. It's patronising, condescending, infantilising and completely inappropriate.

2019 images are at the bottom, should you wish to peruse them.

Since this plague/virus/horror/blight on humankind* has exploded across social media, various autistics and allies have written posts reiterating WHY this is A REALLY BAD IDEA and why you SHOULD NOT DO IT. You can read them here:

*delete as appropriate


Facebook posts
Anna Rico 
Autistic, Typing
Autistic Union
Giraffe Party
Jyn Virago
Lori Jacobson Campbell
Quirky. Stimmy. Cool.
Radical Neurodivergence Speaking
The Autistic Avenger

Articles
A Diary of a Mom: Some Thoughts About Blue Pumpkins
Autistic and Cheerful: Supporting autistic kids at Halloween (brief mention)
Autistic Pride Reading: We don't need no Blue Pumpkins!
CTV: Autism Canada doesn't endorse 'singling out children' with blue Halloween buckets
Fierce Autie: The Blue Pumpkin and Why I will Never Get One for my Children
Grounded Parents: Today's Terrible Idea: Blue Pumpkins for Autism
Not An Autism Mom: 3 Reasons My Autistic Children Will NOT Carry a Blue Pumpkin for Halloween

Additionally, other fact-checking and myth-debunking websites have kicked into action to attempt to debunk this bollocks; you can read their articles here:

Debunking articles
FullFact: Blue trick or treating pumpkin buckets are not official symbols for the autistic community
Snopes: Does Carrying a Blue Halloween Bucket Signify That a Trick-or-Treater Has Autism?
That's Nonsense: Does using a blue bucket at Halloween indicate autism? Fact check 

It's worth noting that a lot of autistic-run Facebook pages are sharing these posts and articles because they, too, oppose the blue bucket, and adding their own comments on it.

One of the biggest concerns that I and many other autistic people have (as I mentioned in the original AoW post, above) is that in the dark or dim, multicoloured lighting, blue and teal pumpkins could be confused, which is Potentially Really Dangerous for people with allergies. I've already seen easily 100 people on a handful of Facebook posts getting confused about this, just in the last few days, and so have many other people I know. The Teal Pumpkin Project is A Real Thing, and one I and many other people wholeheartedly support. You can read about it here:

Teal Pumpkin Project website

It's a brilliant idea, and one that I really hope spreads further every year.

The other big, important concern is, as mentioned above, that if this becomes a mainstream, promoted thing, vulnerable people are being put at great risk, because these buckets are a huge target, having the potential to attract predators and bullies. Additionally, those people carrying blue buckets "because autism" are learning that their neurology/diagnosis is for the public domain and they do not have the same right to privacy or consent/withholding consent as NT and/or non-disabled people do. This is why this whole thing is An Incredibly Bad And Dangerous Idea.

And while on the subject of consent, what if the person doesn't want a blue bucket? What if they don't like blue? What if they would rather have pink, or red, or green, or any other colour because that's their favourite colour? If the autistic child wants a blue bucket because blue happens to be their favourite colour, that's fine, because that's their choice and it's not because it's parading their neurology for all the world to see without their consent. There are plenty of Martyr Parents that simply wouldn't care if the person doesn't want blue - clear evidence that it's all about the Parent, not the autistic person. I've seen a number of parents saying that they're getting their autistic child a blue bucket "because autism" and the child has no say over whether they even want a blue buclet.

Alternatives? Don't disclose. No autistic person owes you their diagnosis. If you really feel that there needs to be something to indicate that the person is autistic, opt for something more discreet, preferably something that the autistic person can choose to disclose or not. If you want something discreet, try for something like a card the person can show to people. Maybe a badge. But NO puzzle pieces, NO blue buckets. The autistic community widely rejects the association of blue with autism.

And for those people saying, "But the intentions are good!" so what? So. Bloody. What??? Impact is greater than intent, and there's that famous line of "The road to hell is paved with good intentions". It doesn't matter what your intentions are if the outcomes are harmful. And countless autistic people ARE saying that the outcomes are harmful.

Blue-for-autism means Autism $peaks, There is a plethora of articles available from many autistic people (and some allies) about why they are a really, REALLY bad organisation. That's not a post for now. If you want to know more, Google is your friend, go to autistic-run blogs and Facebook pages. The information is easy to find.

Listen
to
autistic
people.

DO NOT put people at risk. DO NOT support this harmful idea. DO speak out against it wherever possible.

2019 posts





Sunday, 14 July 2019

Resource: key articles on identity-first language

I've been meaning to write this for a while. Following a conversation just now (in a cat group on Facebook, of all places!) I thought it was about time I pulled together a comprehensive list of articles by autistic people about why identity-first language is overwhelmingly favoured by us (and person-first overwhelmingly - and often vehemently - rejected).

DO NOT try to minimise or trivialise this subject. DO NOT say, "There are more important things to discuss", or "This isn't important in the grand scheme of things", or anything like that. It may not matter much to you which language is used, but for many autistic people, it really does matter because of how language works and because of the impact of language. At some point I'll be writing something about the linguistic effect and significance of PFL and IFL (and differences between the two), but that hasn't come into even planning existence yet, so keep an eye out. When I do, I will update this list.

I am aiming to make this as thorough as possible, so it is quite likely that as I come across more articles, research, etc on this subject, I will be updating this list. If there are any you readers know of that I have not included, please do let me know and send them my way!

Note: if the article is from The Mighty, don't link it directly and instead try to find it on an alternative website; if you have to, use DoNotLink. The Mighty partners with Autism $peaks.

*****

Definitions

Person-first language (PFL): puts the person before the condition, separates the two.

Examples: "has autism", "a person with autism", a person living with autism" (I wrote a scathing comment on THAT one on this blog's Facebook page a few weeks ago, which you can read here: https://www.facebook.com/autisticonwheels/posts/2360697670691438), "a person experiencing autism"), "someone touched by autism". I have fibromyalgia and ME/CFS.

Identity-first language (IFL): incorporates the condition as an inextricable part of the person's identity.

Examples: "is autistic", "is Deaf".

*****

Articles on IFL

Listed alphabetically for ease. Mostly from autistic people, but also a few parents who listen to the autistic community and defer to our preferences.

Amy Sequenzia
Person First Language and Ableism
The Gymnastics of Person First Language

Autistinquisitor
Actually, I Do Let Autism Define Me: Identity-First Language

Autistic and Cheerful
Autism terminology: Identity or person first language
Actually, autism DOES define me

Autistic Zebra
No, I Will Not Call You a "Person with Autism"
Identity First Language 

Beth Wilson
Identity First Language

Dawn-Joy Leong
Identity First


Diary of a Mom (*NT parent of an autistic child)
Person First: An Evolution in Thinking (at TPGA)
I do not have neurotypicalism: where person-first language fails
Neurology as identity, not accessory

Emily Ladau
Why Person-First Language doesn't always put the person first

Erin Bulluss and Abby Sesterka
Talking About Autism

Gordon Darroch (Autistic Dad)

On Language


Identity-First Autistic
A Brief History of Identity-First Language

Illusion of Competence
Disability first: autism is not an accessory

Jean Winegardner
'Autistic' or 'Person With Autism'? (at TPGA)

Jeff Gitchel (Turtlemoon)
Autism First (Again)

Jim Sinclair
Why I dislike "person first" language

Julia Bascom
Dear "Autism Parents"

Kassiane A (Radical Neurodivergence Speaking)
I don't have autism. I am autistic.
Remember autistic & person aren't mutually exclusive! Language, again.
Classic Neurodivergence: The Cancer Comparison. AGAIN.

Katherine Lawrence (Autistic on Wheels; me)
30 Days of Autism Acceptance: day 15

Kaylene George (Autistic Mama)
3 Simple Reasons to Use Identity Language For Autistics
Yes I Will Say That My Son is Autistic, and Other Unpopular Autism Opinions

Kieran Rose (The Autistic Advocate)
An Autistic Identity (*VERY long; for specifics, scroll down to the heading titled "How we talk is how we think" in particular)

Lorcan Kenny, Caroline Hattersley et al (*researchers; neurology unknown)
Which terms should be used to describe autism? Perspectives from the UK autism community (*abstract/summary only unless you have institutional or paid access)

Lydia XZ Brown (Autistic Hoya)
The Significance of Semantics: Person-First Language: Why It Matters
Identity and Hypocrisy: A Second Argument Against Person-First Language
"People First - Create an Environment of Respect"
My Dog Isn't Named Autism 

Maxfield Sparrow (Unstrange Mind)
Labels are Valuable Tools

Michelle Swan (Hello Michelle Swan)
The language of identity, or "I am not an autism parent"
Why do you say "autistic" instead of "person with autism"?
Autism does define me

Musings of an Aspie
The Logical Fallacy of Person First Language

Patrick Dwyer (Autistic Scholar)
Identity-First Language

Reaca Pearl (*NT parent and wife of autistics)
5 Reasons Why I Use Identity-First Language For My Autistic Daughter

Robin Eames
Identity first language: a note on language 

Ryan Boren
Identity First

Speaking of Autism
How Person-First Language can be Dehumanizing 

Wibbly Wobbly, Neuro-UNlogical Stuff
Person First vs. Identity First Language

Yenn Purkis
"It's my 'me'!" Identity, language and autism

Yo Samdy Sam
Person with autism or autistic person?  My problem with “person-first language” for autism

*****

Articles on IFL not specific to autism:

Brittany Wong
It's Perfectly OK To Call A Disabled Person 'Disabled', And Here's Why

Cara Liebowitz
I Am Disabled: On Identity-First Versus People-First Language

CL Lynch
Confused about person-first language?