Hello, and welcome back to The Autistic Writer. How’s everyone bearing up under the pandemic? It feels like there is a new vaccine being promised every other day, so hopefully we have reason for optimism.
I’m going to be honest with you. I’ve not had a great week. It’s not been the worst week of my life, no, but it’s been a bit crappy to say the least. My fellow autists will understand when I say my normal routines have been disrupted over the last seven days, leaving me feeling annoyed, upset, frustrated… basically completely out of sorts. But it’s Saturday again now, the weekend ahead, and hopefully a return to normal over the next seven days.
Something on social media caught my attention yesterday. It concerns someone called Sia, who apparently is a musician, actor and director. The story is that she’s made a movie in which the lead character is autistic… but is played by a neurotypical actor. There has been outrage over this, which seems to have caught Sia by surprise. For the life of me, I cannot understand why she is so shocked. The world has come a long way since Dustin Hoffman starred in Rain Man. That movie did a lot to help raise awareness of autism, although it did also help perpetuate some misconceptions. Overall, for its time and circumstances, Rain Man was probably a positive for autistic people. But it’s 2020 now. There are plenty of autistic people working successfully in all kinds of fields, including actors. Fair and equal representation is not too much to ask for.
How has Sia dealt with the criticism? She’s claimed to have employed neurodivergent people in other roles on the film (missing the point that the main character, who is austistic, is not one of them). She has also said it would not have been fair to cast an autistic person in the main role because “casting someone at her level of functioning was cruel, not kind,” (LA Times, 20/11/2020) which really has inflamed tensions even more. I’m not sure why Sia has decided she is the judge of how well autistic actors can handle challenging roles. She seems to be taking a position that an autistic person at a certain point on the spectrum is too disabled to play an autistic person at that same point on the spectrum. Well, autism as a disability is a thorny subject, which I discuss below, but if I was to give Sia the benefit of the doubt on this one (I don’t want to, but for arguments’ sake), then I’d nevertheless be saying that part could still have gone to an autistic person. Or is Sia saying a neurotypical actor can play the part of a severely autistic person better than any autistic actor? That’s nonsense, I’m afraid. She claims that she has put three years of research into this project, but somehow she has taken the organisation Autism Speaks on board as an advisor. This tells me she has been badly informed. Autism Speaks‘ record when it comes to anti-vax fluff, eugenics, and treating autistic people as problems to be fixed is pretty despicable. Unfortunately, Sia’s reaction to criticism is to get angry.
At some point, someone is probably going to get through to Sia, and explain where she’s going wrong, and that will be followed by a contrite apology, and this movie wil be consigned to history.
Sia has tweeted, “why don’t you watch my film before you judge it?” Well Sia, we’re not judging your film (yet)… we’re judging your decision making, and your attitude to autism.
In this week’s blog…
Aberrations: A quick update on my novel-in-progress.
The Aut Life: How I’m dealing with my mental health issues, and coming to terms with the knowledge that I am autistic.
The Aut Files – Disability Mode Enabled: Is autism a disability? There have been some pretty feisty disagreements over this, and I’m attempting to find the answer here.
I mentioned above that my routine has been disrupted this week. The effect is that I’ve missed three days of writing, and my output has been a measly 1,957 words. But progress is still progress, even when it slows. I’m confident I’ll be back on track over the next few days. I’m part-way through chapter 48, so edging ever closer to the finish line of chapter 60. I plan to have this first draft finished by December 11th. I’ll then take a break to get some distance from the work, before coming back to the second draft with fresh eyes on January 11th. There will then be a third and final draft before publication, so I expect this, my third novel, to be available for September 2021.
The Aut Life
The level of discomfort I’ve felt this week has been really annoying. Some minor home improvements have caused just enough disruption to get in the way of my writing. Plus, some minor changes in routine at my day job have been enough to trigger anxiety attacks. I’ve had to change the route of my lunchtime walks to avoid some mildly antisocial people. And then, the books I’ve been reading this week have not been particularly interesting – to the point where finishing them has become a chore. These are small, minor issues that many people wouldn’t think twice about. But for my particular location on the autism spectrum, it’s been really annoying, and left me with this underlying feeling of just not being quite right.
As I mention pretty much every week, reading is great for my mental health because it is so relaxing, particularly when I listen to an audiobook while on my lunchtime walk. But the audiobook I’ve just finished, a biography of Nikola Tesla, was badly written and badly narrated. Informative, yes, but pleasurable? Nope. And then my kindle read, AE Van Vogt’s SF “classic” Slan has been hugely disappointing. It’s a book I’ve known about since childhood, and always seems to have been whispered about in reverential tones. Well, I thought it was a really poor, plotless mess, with poor science fiction elements, and characters I couldn’t care less about.
Moving on, I’m going to listen to Bernard Cornwell’s King Arthur trilogy on Audible, and I’m going to find something non-fiction on my ever-expanding Kindle to-read pile!
The Aut Files: Disability Mode Enabled
There is an ongoing debate in the autism community, some might say a vociferous argument, about whether or not autism is a disability. People on all sides of the debate are passionate about it, and many seem to think that it should be obvious that they are right. But surely, either autism is a disability or it is not; both sides can’t both be right, right? So how can we solve this conundrum? Well, I’m going to have a go.
It seems to me there are four broad categories of how disability is defined.
These categories do not always define in agreement, and each has its own criteria. Let’s look at them.
Each person has their own idea of whether they consider themselves disabled. This whole blog post was inspired, partly, by various series of exchanges between autistic people on the internet. In one conversation, a person said they had been officially diagnosed as autistic, but did not consider themselves disabled. Fair enough. However, this person claimed that as he could function without disability as an autistic person, autism clearly was not a disability. One argument against him was that he does not speak for all autistic people, many of whom are more seriously affected than he.
Another person passionately argued at great length in favour of autism being classed as a disability. This person seemed to have profound difficulties, and relied on disability benefits to survive. Those benefits would disappear if autism was not legally classed as a disability. It was a strong double-pronged argument: She felt she was disabled because of how her autism manifested, and also felt that the definition was important from a legal and social point of view.
By social definition, I mean the types of preconceptions and tropes that are repeated and perpetuated in society by common sets of opinions. As an example, we’ve probably all seen stories reported in the media in which someone has parked their car in a disabled spot, and walked away looking healthy and sprightly, only to be challenged by someone along the lines of “Hey! That’s a disabled parking spot! You’re not disabled.” In some stories, the person who parked is openly abused. And then it transpires the person actually is disabled, and has the appropriate disabled parking permit; the person has a disability that is not immediately visible. The common social opinion evident here is that you’re only disabled if you’re on crutches or in a wheelchair, which is clearly misinformed. But these unhelpful opinions exist, and are repeated and perpetuated. It’s one thing for an autistic person to say “I don’t see myself as disabled,” as a personal definition. It is not okay for able Joe Bloggs to start mouthing off uninformed opinions about what constitutes a disability. Of course, not all social definitions are negative, and recent years have seen a welcome increase in the public’s general understanding of mental health and disability. Both positive and negative definitions are out there in society, and they spring from personal definitions, so education and awareness-raising are key.
An authoritative definition comes from an organisation that is widely regarded to be an authority on the subject. If we look at the National Autistic Society, which seems like a good example, they define autism as a lifelong developmental disability. That seems straightforward. The NHS definition doesn’t use the word disability, but does say “If you’re autistic, you’re autistic your whole life“. However, on a google search, you will find various sources call autism a developmental disorder. Now wait minute… we could go all the way down a rabbit hole here, and examine various definitions of disorder. Or we could be sensible, and take a fairly uncontroversial definition: A disorder is something that causes significant difficulties, and can be either short term, or long term. Well, the NAS and NHS consider autism lifelong, so we are talking about something that causes lifelong difficulties. Does lifelong difficulties meet any criteria of disability? Keep reading.
A legal definition is something that is enshrined in law, of course. In the UK, and many other countries, the term disability is given a legal definition. It is this legal definition which will be the determiner of whether someone can claim disability benefits, or a disabled parking permit, etc, as well as providing various protections for the disabled person. In the UK, this is all covered by the 2010 Equality Act. What does this legislation tell us about disability?
So, we know that authorities such as the NAS define autism as a disability, and the NHS describes autism as lifelong, and lists various difficulties that come with it… and with a disorder being something that causes significant difficulties for a person, we see autism is covered by the Equality Act as a disability.
With all the above in mind, is it possible to make a sweeping statement about the status of autism as a disability that is fair and accurate? I think so.
What I have drawn from the debate is that it is okay for any individual to class themselves as disabled or not. But to try to force that personal definition into the social or legal arena is doomed to failure. The social and legal arenas necessarily deal with large groups of people; not individuals. Having a personal definition for yourself is fine, but none of us speaks for all of us.
Assuming we live in a reasonably civilised society, any definition of disability is only worth the power invested in the enforcement of it. In terms of power to enforce, clearly the legal definition is king. However, if you are autistic (therefore legally defined as disabled) but you don’t personally define yourself as disabled, that’s fine: no one is forcing you to claim disability benefits, or even tell people you are disabled.
Where disability is concerned, let the individuals speak for themselves, and the law* speak for the principle.
*Come on, guys, you know what I mean. Yes, some laws are evidently and obviously bad laws. When such laws emerge, it’s up to all of us to exert social pressure to demand reforms. But a law that says disabled people should be treated equally and fairly is not a bad law.
That’s it for this week. As always, I welcome any comments on the subjects covered, either here or on Twitter; @Autist_Writer. Be good to yourself, stay safe, and I’ll see you next time.