How is what we are doing helping us survive?
On Burnt Out In Biscuitland & Disability in the arts
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“We assert our right to exist in the world. Even in crisis this right does not change.”
There is a difference between saying you are creating an inclusive space, and actually being one.
For the first time in my life, I found a truly inclusive space.
You may have heard of Jess Thom, also known as TourettesHero. If you haven’t, you should. She’s a true tour de force of an artist, transforming perceptions of what disability means but moreover the idea that to be disabled and an artist are antithetical to one another.
Recently, she brought her show Burnt Out In Biscuitland to Margate, supported by Looping The Loop. The show was predominantly set in a post-apocalyptic landscape -a bunker, where Jess, Chopin and Charmain - go through day after day trying to survive, collectively. When they do brave the outside world, which breezes in white ash across the stage, they wear vests with ‘DNR’ prominently displayed across their chests.
Having just lived through a pandemic in which many disabled people had Do Not Resuscitate’ placed on them without their consent - including autistic & learning disabled people my own age - I was more than aware of the ways disabled lives were and are continually disregarded. I don’t know that everyone in that audience was.
The thing that affected me most about the show was not the show itself, though. Which isn’t a criticism of the performance - it was brilliant. The thing that totally overwhelmed me was the access, the safety. I felt held.
Not only was the entire performance captioned and audio-described, but access was embedded into all aspects. There were ear-defenders available if you needed them. Before the show, there was a visual story available, and a sonic story which helped prepare people for the event. There was no limit to the number of wheelchair spaces, and the seating had loads of leg room.
Jess explained the plan for the show, the rough timelines and emphasised that we were welcome to do whatever we needed. Even things like the fact there were chairs with armrests, and those without. So much was thought about. Access isn’t rocket science, it’s consideration and it’s care.
I spent half of the performance sat on the floor on a cushion pad, before standing up halfway because I really needed a wee and then stimming at the back before coming back the floor. No one judged me, but moreover, no one batted an eyelid. There was an incredible drag performance by local Margate disabled drag artist Tivoli about endometriosis and gendered disparities in care and research.
I put my sunglasses on.
Inside.
I realise that does not sound like a big deal, but it was monumental, for me.
It was the first time that, in public, I felt empowered to do what I needed to do to make the situation accessible for me.
I am not ashamed of being autistic, nor am I limited by it. But I am limited by other people’s perceptions. It is easier and safer - materially, socially, physically - not to identify myself as different when out and about. Even my closest friends have not seen me unmasked, really, because it takes years for me to build up that kind of trust.
I am often assumed to have mild autism. That is not how autism works, for a start.
But I know what people mean: ‘You don’t seem like those autistic people. You can say you’re autistic, but don’t you dare act like it. You don’t struggle, and struggling is the only way I know to think of autistic people.’
I am reminded of a line from Elle McNicoll’s A Kind of Spark, whereupon being told her autism is mild by her twin sister, Keedie retorts “it's not mild to me. It's not mild to Addie! It's mild to you because we make it so, at great personal cost!”
I can advocate until the cows come home about the importance of access, of inclusion and yet I still find it really hard to respond to my own needs. I know full-well that part of the reason I have been able to enter, exist and even flourish in some of the mainstream spaces I have is because I can ‘pass’ as non-disabled.
In the arts, I’ve felt that acutely. Almost everyone I know has some sort of neurodivergence, mental health diagnosis, chronic illness and yet can’t speak about it for fear that in an highly-competitive industry, any perceived ‘weakness’ will result in them not being able to succeed.
There’s an irony in that: be vulnerable in your creativity, but don’t you dare fail to conform to a hegemonic, homogenous norm. Even in supposed utopias and imagined worlds, disabled people don’t exist.
The arts is slowly getting better with inclusion, but it is slow. And, like so many aspects, disability is left behind. I think that’s a particular shame when you realise that its something anyone can get involved with. I am a writer at heart - I like that I can create who worlds and images by combining 26 letters and a handful of punctuation in a myriad of ways. But, writing is not for everyone. Given the right support and opportunities, art is something anyone can access in some way, no matter their background and circumstances.
Disabled people grapple with so much every day - from lack of access, denial of care, poverty, lack of housing, overt discrimination, eugenicist thinking. Then there’s the other stuff that comes from just having a body - pain, exhaustion, vomit, blood.
For what it’s worth, there is also a hell of a lot of joy, too. Joy as resistance is what keeps a lot of us going. Oftentimes, it feels like all we are left with.
Arts spaces that feel accessible shouldn’t be a revelation. It shouldn’t be revolutionary.
Maybe the only reason it feels like it is is because access is an act of care, and act of recognition. I wonder, for all the talk, how much the creative industries actually care and recognise people.
The key question of Burnt Out In Biscuitland was a simple one: ‘how is what we are doing helping us survive?
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