And then we start sometimes creating what’s called a circular firing squad where you start shooting at your allies because one of them is straying from purity on the issues. And when that happens, typically the overall effort and movement weakens.Barack Obama, April 6, 2019, Berlin.
My first ever comedy show, “Labelled” never named autism but talked about social perceptions of autistic people through my childhood experience. After a sold out show in Darwin a group of NDIS professionals approached me and one was itching to know if they were right about my diagnosis. They were. I was okay with them asking, it was a good conversation that my show had deliberately provoked.
Then I started comedy that was more up front about disability and now…now I just want to be me. I just want to do anthropology and sometimes some comedy.
I’ve had to postpone my disability stereotype debunking show so many times, but it’s been a blessing in disguise. One reason is I want to back off from comedy performance and concentrate on my PhD (which is focusing on the politics of satire).
But mainly I am sick of the circular firing squads in the disability community.
I once talked about negative solidarity in workplaces, well it exists in movements too.
I’ve take au off the end of my Facebook name. I’ve left a bunch of Facebook groups. The infighting and the puritanism is beyond my capacity for patience in a pandemic.
I am tired of the constant oppression Olympics – internalised and externalised oppression.
I’ve been disabled my whole life plus some acquired disabilities through co-occurring chronic conditions. But only since 2016 have I been exposed to so many waggly fingers and dissections of invisible vs visible, physical vs non-physical, from birth vs acquired BINARIES, BINARIES, BINARIES!
I’ve spent an entire anthropology career trying to debunk binaries and now I feel enslaved to them. All in the name of supposed disability pride.
Autism isn’t invisible and it’s physical. Same for mental health. Same for chronic conditions.
There isn’t some dotted line between mind and body and an x marks the spot.
All these experiences have physical aspects too, they have physical manifestations. Speech is a physical act! So is thinking! If it’s different and noticeable, it’s visible and physical.
The person that cannot get to work on time because of fatigue is treated as a social pariah.
The person that cannot get to work on time because of mobility issues is treated as a social pariah.
The expectation that both should work or should be on a pension in response are both binaries that reinforce difference.
There is always a need for differentiation when working out supports – but not for COMPETING in pissing contests between community members.
What are you competing for? Misery? Status? Ego?
So maybe stop impairment judging? Now I am going to get screamed at because someone has more difficulty.
Okay, I agree that some people need more support and impairments are complex and difficult. I am not saying otherwise.
But that’s not to say the people who some think don’t need support are not needing support either.
The difference in how they are treated by society and the world at large is a difference of degree not kind. We are not discreet categories for the purposes of organising rocks, we are human.
If one thing the high functioning/low functioning debate in the Autism world SHOULD have taught us – it’s this –
Infantilisation is bad – treat someone like a child and set the bar too low and you won’t allow someone to thrive and it will lead to frustration and poor outcomes.
The amazing narratives are bad – set the bar too high and say people are amazing and they don’t get help when they need it.
BOTH OF THE ABOVE are problematic, particularly when we apply them to our own community.
ALL disability has a commonality by how some portions of society treats disabled people so poorly.
If the way we are different wasn’t noticeable in some way then we would be treated better. Plenty of people with a supposedly ‘invisible’ condition have stories of discrimination (regardless of whether they have disclosed the condition or not).
And today I cried because I will never dance the night away again because of one of these conditions. Because I’ve had to move temporarily out of my home I love because the lift is broken and I’m too much pain to be able to do some things that I need to do to manage impairments. And all I have been doing is pushing on and today was the first time in ages I stopped and thought about it, because I am stranded and having to hurt myself to get my assistance dog out to pee or go for a our short very slow walks that keep my mental health on track.
And I am not apologising for hating parts of my disability and I am also not apologising for being proud of my achievements.
I’m not apologising for being human. Humans can be disabled. Disabled humans can succeed and they can feel despair for the impairments they experience.
So speaking as an anthropologist who has a couple of decades in the nature vs nurture debate – you can pretty much juxtapose nature with medical and nurture with social.
The reality is…both nature (medical) and both nurture (social) are intersecting factors in human behaviour. I need to add here that the nature vs nurture debate was an academic debate that was popularised, often so that some people could justify away bad behaviour.
The academic debate around it is very nuanced until the meme like representations in public and popular representations. In popular, non-academic conversations, you could dismiss any behavior by loosely muttering “it’s human nature” with no evidence of to what extent, how and why and wherefores of what parts of nature (physical disposition), coupled with nurture (environment) might support that behaviour.
For the last time, (and some of this I have been guilty of at times by allowing people to drag me into these conversations – and done my best to remedy over time and will continue to work to do better) the SOCIAL MODEL DOES NOT MEAN:
- Diagnosing each other or questioning each others diagnosis. YOU ARE PRACTICING THE MEDICAL MODEL that could potentially put our diagnosis before our humanity. You don’t like how someone behaves from within your disabled community? Then don’t hang out with them, but to think it’s to do with their diagnosis…wow…nice medicalising there!
- The flip of the above is rejecting someone’s self diagnosis without listening to them. YOU ARE PRACTICING THE MEDICAL MODEL – nice medicalising again! It’s suggestive that diagnosis is more important than behaviour. Perhaps fight for everyone to be able to afford diagnosis or a good thorough and safe diagnosis on their own terms and then don’t force people to disclose or not disclose.
- The excusing of really bad behavior because of a diagnosis. YOU ARE PRACTICING THE MEDICAL MODEL that says a diagnosis makes people ENTIRELY child-like or unable to practice discretion. People can and do manage impairments and some may not be able to – but you are not the judge, jury and hangman on this….and MISdiagnosis is a thing when done by people way more qualified and experienced than you. So what makes you think you got it right?
- The flip of the above is to not allow any successes at all because of a diagnosis. YOU ARE PRACTICING THE MEDICAL MODEL. Same as above.
- Labelling all behaviour on a feature of a diagnosis. Again…medical model. Behaviour is behaviour. The environment (the social model) shapes that behaviour too. For example there are plenty of ways people manage pathological demand avoidance (PDA). It doesn’t mean they don’t have PDA or that all behaviour is PDA. Maybe changing the environment will be beneficial, maybe it won’t.
There are many things that are hard for me, and somethings impossible for me to do. But there is always workarounds and some are bad and some are good and some work and some won’t and environment has a lot to do with that too.
I will never support things like ABA, primarily because they say the person is the problem and that society is fixed and rigid (which it isn’t – whose society? where? how?).
For a few years now I’ve been stuck in this cycle of looking for a label by naming the labels and debunking the labels on rinse and repeat.
I want my life back. I can’t dance the night away anymore and I’m heartbroken. But I will find other things that give me joy – I’ve been playing piano. I’ve been writing songs. I am not defined by what I can no longer do…or even but what I can do.
Make no mistake, I have disability PRIDE. But I am done with the circular firing squads.
I’m keeping the labels that are helpful to me, but I am taking my agency back.
I’m me. And I am pretty damned cool.