If you’ve read any of my blogs, you’ll know I am neurodiverse and have had chronic pain for over a decade. Last weekend I had a flare-up, a scary one, where all my usual tricks to calm the nervous system didn’t work, and I spent hours tracing the outline of light and shadows in my room, in an effort to interrupt the pain signals. It was all I could do for the best part of 2 days.
Some of the knock on effects of this flare up, other neurodiverse folks will recognise: I had to cancel plans (again). This time I had to tell a friend who has cancer, that I wasn’t well enough to travel the 4 hours to where he lives, to attend his birthday party. I felt like a jerk. Worse. I kept checking my phone to see if he or his wife had sent me a message to let me know it was ok and that they understood.
I wonder if people who do not experience precarity, ever really do understand. We subscribe to the fallacy that we are stable entities and identities. Probably due to the neoliberal capitalist system that requires us to be stable and able to deliver services and commodities to the same degree every day. When I was devising a piece about chronic pain, one of the participants described herself as “vulnerable” and “intermittent”. She talked of an identity that was “on” when she was able to engage with life as we have organised it, and “off” when her pain and fatigue meant she could not. The “off” is not seen, recognised, or validated. It is shameful and hidden.
My “off” this weekend was racked with guilt. But it was necessary. That, and a conversation I had on Friday with Jamila Prowse, reminded me that precarity is simply a part of being neurodiverse, and although our system and culture do not recognise the rest and recovery time needed (not just at the weekend, but throughout my day, every day), it is necessary. And maybe we can begin to build it into the processes and projects we imagine and devise.
This was a brilliant reminder that A Crash Course in Cloudspotting is not just the chance to create an installation that reveals our participants live patterns of rest in a public space. It is also the chance to shape the way our team runs the project. It’s inherently flawed if my team create beautiful resting spaces, but are frazzled by the undertaking. So, drawing on the work of the brave artists and activists that first began to articulate the needs of neurodiversity, as of next week I will shake up how we have been doing things:
- I will build in paid recovery time post busy periods (i.e. residencies, + workshops). I will use some of my access budget to pay myself a part day’s wage to rest after these busy times. Thanks to James Leadbitter for this idea. I’m sure giving rest a monetary value coupled with broadcasting my rest, will shift my experience of rest further still.
- When our producing team next meet to go through Alice Tatton-Brown’s Contract of Care, I will ask that we do this in a relaxed space, if possible lying down together with our heads close, so we can talk intimately, but I can be comfortable for the entire process (I’ve described this before as the difference between ‘enjoying’ or ‘enduring’ something: when I sit the experience is normally one of endurance).
- We’ve already talked about building precarity into the solo I am developing that will take place within the installation, but we need to talk about how we build it into the whole project i.e. let’s say I can always do a meeting via Skype (from bed if necessary), so I don’t feel the pressure of ‘professionalism’, to have to make the meeting for fear of being unreliable.
- Lastly, and most importantly, I am going to renew that permission to myself to lie down to work whenever possible. And remember that I often do my best thinking and my best writing, from bed.
These things are so simple, but potentially a radical, restful, revolution.