Context: At the beginning of December Jonny Leitch and I went to the LEVEL Centre in Rowsley to start development on a new project.
We’d been at the residency for a couple of days, both Jonny and I were feeling a bit ill in different ways. This residency marked the beginning of our working relationship as a duo, and it was as much about working out how to work together, and what exactly the practice of us two in a room together meant, as anything else. It took some time to get in sync with each other, navigating the ways we’d both worked in the past and our lack of a shared language. It was half way through the second day when I felt like we fell in step with each other, trying things out symbiotically and giving way to tumbling ideas. Jonny and I both have ADHD, which also formed the basis of the work. Both diagnosed in our 20s, both with symptoms that hadn’t been picked up because of the focus on our physical disabilities, both prone to crashing, hyperfocusing and self neglect. Our starting point was- what does it mean to make work that represents ADHD through form (focusing our week at LEVEL on sound design form), and how do we make a rehearsal space that actually represents the way we work best.
We talked about having someone come in to remind us to take breaks, working intensely for four spaced out hours a day to give us time to rest, starting rehearsals at 6pm, forcing ourselves to go outside for five minutes every hour.
We talked about using modular synths to provide a basis for a form we couldn’t control, disabling the time stretching software so everytime we changed speed we’d also change pitch, writing songs which lasted 25 minutes and others that were ten seconds, using noise and cacophony as the default and silence as burnout, we recorded conversations about capitalism and our bodies and disassociation and shame, executive function and parenting/tricking ourselves, dopamine and the ways we had been failed by the healthcare systems that raised us.
Through this, we were both sick. Both run down, wired and exhausted. On the second day, Jonny got worse, slipping in and out of feverish periods. He wanted to work, to give him focus and structure through the displacement. The work felt good, we were both distracted from having bodies. He felt better.
We went back to the hotel and separated for the evening. I was exhausted but hopeful for the next day. We had a list of things to try out. At about 9.30 Jonny texted me
I need iv
He then sent me a concise list of everything I needed to tell the Doctor.
We got a taxi to the hospital because the ambulance would have taken four hours.
I forgot everything and had to stop at a cash point and use Jonny’s card to pay for the taxi.
We were shepherded through the first round of A&E fairly quickly, and Jonny was feeling a little better. We talked with a coarse optimism, swapping stories about times we’d been in this situation before.
He started feeling worse.
They found Jonny a bed, to go in a corridor whilst they looked for a room. Two hours.
They found Jonny somewhere more private, fluorescence and syncopated beeps. Four hours.
He felt a little better.
The doctor came, and Jonny spoke to him in a way I’ve never seen anyone else do. There is a – hey, I’m not like other patients, I know the score, I’ve been here before, let’s be real with each other, I can be brisk and jovial in these moments – performance that I tend to put on in front of chaos doctors (as opposed to routine doctors, which are given a very different patient). It’s a little flirtatious. It’s a way to maintain control in a hospital at 3am. It was eerie watching someone else do it. The doctor said they’d keep Jonny in and give him some antibiotics. I left.
At 3.30 I texted Jonny
Taxi takes card
I’ve emailed level
Sorry I’ll be more sane in a bit
I had a blunt head- complete emotional shutdown. I found the situation difficult to process, it was the wrong way round, I felt like I was meant to be in Jonny’s body.
The last time I had gone to the hospital it had looked a lot like this: me, not well but in a manageable way, to delirious and sweating through the sofa cushions, crying to my terrified housemates about how I felt like I was going to die, shivering in a hospital waiting room while my mum stroked my hair, shivering in a hospital chair alone while they tried to find me a bed, sweating and drifting in and out of consciousness, crying in the corridors because I felt so unwell, so vulnerable and left alone, being taken to a ward and seen by a doctor who treated me with contempt for crying because of a UTI [who knows if this was the case, who knows if my addled victim brain made this up], being given antibiotics, being casually told that I had sepsis and had no one mentioned that to me yet, a moment of relief- the meds, the I’m not overreacting- and sleep, actual sleep, brief sleep, being woken and moved to another ward, the constant needles, the quality of the fluorescent light, the true care from overworked staff, the fever, the ward camaraderie, the moments when I cried in a way that terrified me, in a way I couldn’t control, that were pure vulnerability.
And I’d left him there I’d left him there I’d left him there I’d left him there.
I’d never been the caregiver before. The guilt of the mattress and blackout curtains.
The next day Jonny felt marginally better, and kept me updated while I ate my premier inn breakfast. He checked in on me, and coached me through my own anxiety, whilst lying alone in the same room thoroughfare alcove he’d been in all night.
Whilst we waited for the doctor, Jonny- who also operates as a caregiver- and I had a conversation about how unnerving it is to have that role flipped. We are both very good patients.
They let him go, we went back to the hotel, he got more symptoms. Considered the hospital again, decided not to do it, he didn’t want to worry me. He probably should have gone back.
The next day we got the train, him a little delirious, shivering, forgetting to eat, telling jokes and putting the train staff at ease. Always making sure they were ok, I was ok, everyone was ok.
After the train he went straight to the hospital.
I started walking in the wrong direction for the bus, and remembered we’d been at an artist residency.
After these four days, I had no thoughts or feelings for a week. I was exhausted, irritable and refused to engage with anyone. At the same time, Jonny was dealing with continued illness and patronising treatment at another hospital. He slowly got better. He asked me how I was feeling. I stayed husk like and grumpy.
In our imagined timeline, we’d agreed to have a meeting the week after to talk about the next steps for the project. We didn’t do that.
In our imagined timeline, we would have had some fragments of content and recordings we could send to potential partners so that we could have the work programmed and apply for some money from the arts council.
In our real timeline, we needed to do the first week again. Whilst this sounds like a mild inconvenience, in practice it involves navigating Jonny’s incredibly busy (and my erratic) schedule and trying to find more funding in a climate where the funding we’d been given was gold dust. Working with an organisation like LEVEL – who care about access in non-tokenistic ways, and ground their work days to a halt to take me back and forth from the hospital to the rehearsal space to the hotel – was brilliant. I cannot recommend working with them highly enough, especially as Disabled artists. LEVEL, like the arts in general, is chronically underfunded, and doing everything it can with the money it has.
Being disabled is governed by lack of control, and consequent derailment of your plans. This is especially difficult when you work in an industry that relies on knowing you will be well and able to work six months in advance. Which leads to work getting cancelled, or working when you really shouldn’t because you know you won’t have the chance otherwise, and masking your symptoms in a rehearsal room, and punishing yourself for not living up to an impossible standard. Or in punishing yourself for not going to a networking event because you’re sick or because getting there would be exhausting. Or in punishing yourself because you’ve fallen behind your idea of where you’re “meant to be” at this point in your life, because of the the depressive periods and complete inertia that accompany the waves of shame, and the recovery that needs to be done after any interaction with the NHS, and because of the constant readiness for each sickness you have to lead to a prolonged illness or extreme pain, or a permanent shift in how you live your life, and for these terrors to be a regular & mundane. You could have got really sick, but you didn’t. You nearly did, but you’re fine. You have to move on. Mostly, because of having fundamental decisions made about your health without your knowledge or consent, sometimes by doctors, sometimes by your own body. The most painful of all.
I think, in retrospect, the reason I shut down like that after the work was because when I’ve been in that situation before, I’ve had to focus so hard on the getting better and the relief of being better [for now for now for now] that I haven’t had time to soak in how frustrating it is, and the churn its perpetual cycle. The way my Disability plays out forces me to be so present sometimes that I can’t see past the next ten minutes, and when it’s over, something kicks in to make it feel very far away. And the vague narrative of how the next few days/weeks/months will be goes with it, each time starting from scratch. I think seeing it from the outside broke my brain a little.
In trying to write a manifesto for making work as Disabled artists, we had to accept that sometimes you can’t make it.
[This is difficult when your ability to pay rent and to be creatively fulfilled is at stake].
This won’t be able to happen until Disabled artists are supported in non-Enabled ways.
Until then we just have to start again.
This is as far as we got.