I decided to jump ship from Tinyletter- the formatting was abysmal and it kept sending emails into junk folders. So here I am on Substack! You’ll get updates about my work here, rather than Tinyletter now, hope thats ok.
Anyway, I’m delighted to announce that I’ve been selected as first Artist in Residence at Sussex Uni’s Digital Humanities Lab, starting this very week. Pretty cool eh?
Once the imposter syndrome backs off a bit, during this residency I’ll be looking into ways to develop my GUTS project that I began at the end of last year, alongside those working with the Lab, in some new digital ways. This is a project looking at my experiences living with Ulcerative Colitis, a chronic condition affecting the large intestine.
For the most recent part of this project, I took part in Lightform Lab- a short residency with two other artists led by Thomas Buckley at Old Market TOMTech, Hove. As part of this residency, I got to experiment with the ‘invisible illness’ aspect of my condition a little more, whilst using Lightform projection mapping software and hardware.
Whilst being interviewed for this residency, I was asked how I felt about the potential for this project to focus solely on my experience- would i feel ok becoming a kind of illness ‘activist’? Being defined by my illness? This is certainly something I’ve always hoped to avoid. For a lot of people with chronic health conditions, there can be a fine line between accepting that an illness is a part of you and being defined by it.
This brought up a lot of questions for me, and over the last couple of weeks, given that what most excites me about working with the Lab is the potential for some exciting collaboration (something I need a lot more than I’d realised) I’ve been thinking more about the potential for a project about illness to be a collaborative one- that shifts the focus away from me.
Illness- whether short-term and mild or long-term and serious- is certainly something everyone will experience: so why is it so isolating? Why when we are sick do we retreat and want to be alone? Could it be deeper than simply not wishing people around us to see us at our most vulnerable?
So I’m beginning to think of how, through this residency, this project might aim to involve a wider range of people and how digital tools could facilitate that. How do we process illness as a community?
Here’s a picture of the Borg queen, who I’m sure has some interesting ideas about how we experience things collectively.
Early thoughts for now, as well as my (re-)reading list: