sick tax

I’m still ….. learning how to be sick in the workplace, sick outside of my house, sick in self-employment, and that means learning how to ask for help or other accommodations. so if you are disabled and thinking this is old news Zzz then bear with, I’m only a year and a half in, god bless

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I did my first solo trip to another city this weekend, going from Liverpool to Birmingham to chair a panel talk at a museum. The fee on the initial email was £150 but that didn’t feel like it was enough? If it was in town, yeah, sound. But another city? I explained to the organisers that because of POTS, I would need to come over the day before and rest up to make sure I was up for doing the job on the day. So, I wouldn’t be able to work for the day before. They agreed to up the fee to 225, and also cover taxis, trains, and a night in a hotel. That felt fair and also genuinely doable. And it worked. I was able to go, rest, work, and travel back.

But at the end of the event on the Saturday, I was chatting to one of the panellists Sumaya Kassim about how our chronic illnesses meant that the next day was going to be a write-off. I was picturing myself back home in Liverpool, flat out in bed, fan on, snacks, eyes closed, recharging. Yeah. It’s a change I’m still catching up on. And I realised in speaking to Sumaya that maybe when I plan to say yes to these things, I shouldn’t just ask for a fee that covers my time the day before the work, but the day after too. Because I can’t make any money when I’m lying in bed with my eyes closed. And that’s what happened. On Sunday, my body felt bruised and slow-motion, and my mind was somewhere else.

I’m not bringing this up to accuse the organisers of anything, because they accommodated everything I was able to communicate — it’s more that I’m still learning what I need, and next time I know what else I should request. I feel nervous saying these things because I worry it will scare off employers. Has my sickness made me too expensive? Just in time for a cost of living crisis. Great :) I think of the way Arts Council budgets are divided — the ‘making work accessible’ category. I think of the bigger budgets for art events outside of England but how much more rest I’d need after getting on a plane. I can just about manage a train station, imagine an airport. I think about my appetite for doing these things, and how I wish I just wanted to stay put; how I wish the money would just come here to me /// and how nice it was, actually, to do an art-thing in person, and not on Zoom, chatting to the audience after, eating crisps, making what feels like real connections (and even investment in future work?)

I think about what’s worth it, and what isn’t. I think about worth so much since getting sick. Is 225 worth the next-day-agony? In this instance, yeah, I really enjoyed myself and I felt cared for, and I think I did a good job (I hope, I hope)?? The higher the numbers go, the more it is worth it and the quieter that questioning becomes. paying off the pain, money as relief, buying me time to recover. I hope in writing these quick things, organisers who do not have experience of chronic illness and chronic fatigue can bear it in mind when they are planning events, and more importantly, budgets.