As my profile gets bigger (it’s still very small and I am still not earning a living as an artist) I am being asked to have work or take part in events in places that have problematic histories and are currently problematic. So I want to be transparent about the things I consider when being asked to work in these spaces. I fully support people who make a different decision to mine, but this is my process of reasoning:


1. What effect will I have if I choose to boycott this space versus what effect can I have if I choose to work in this space?

  • I am not a famous or well-known person, if I choose to boycott a space not many people will hear about it. There will be no publicity on the reasons I have boycotted that space and it will not affect that space in the slightest.

  • However, this is not reason enough for me to take the job. I also ask myself what conversations can I have in that space? If I am told nothing is off the table and that I can openly criticise the institution whilst inhabiting, then at this point in my career I can do more to highlight the issues with the space than if I boycott it.

  • If I am told I have to stick to a certain narrative or I can not speak out about the things I think that institution needs to change then I will boycott.


2. Who is hiring me and what are their intentions?

  • Museums generally in the UK tend to be full of very problematic and stolen artefacts that need to be repatriated and I will always state my opinion on that. There are now more and more great curators working in museums today on changing museum culture and bringing in activists to curate exhibitions or be on panels. All of this work is putting pressure on these museums to actually represent the communities they stand in and acknowledge the violence that their historic collections are rooted in. This kind of work is at present the only way I see museums changing for the better, by allowing activists to take over the spaces and change the culture.

  • A really amazing example of an exhibition that worked with activists to change museum culture by reflecting on the problematics of their own collection was 'The past is now' which took place in Birmingham Museum in 2017. And more recently an exhibition a piece of my work is in We Are Birmingham which was curated by activists from Don't Settle.

  • Bringing marginalised conversations into these mainstream places is important work and I am proud to be a part of it.


3. Will I grow as an artist?

  • This is the most cynical question I have to ask myself. Unfortunately we aren’t living in luxury automated communism and most of us need to work and earn to survive, I am no exception. I am a disabled, chronically ill, low income artist with a very small platform and very little capacity to grow that platform. I need mainstream publicity and paid work to both grow my platform and the work I would like to put into the world, whilst having a sustainable career. I currently have to depend on my parents to survive who are in their 60’s and still working pretty intense shift work because they have a sick adult daughter who can’t earn full-time anymore and often needs to pay privately for neurosurgeries that I can’t get in the UK. I don't want them to have to work for the rest of their lives because I was never able to earn enough money to live independently. I am putting this information in because I want to highlight the financial privilege that goes along with boycotting paid work. I foresee this final reason being the one people understand the least but it’s an extremely important one because it highlights the reality of living and working as a sick person on low income.


On a final note, for those of us who are already marginalised and have certain political beliefs we often have to negotiate certain institutions and systems which are already stacked against us and uphold cultures of oppression in order to work to change that culture by having radical conversations in those spaces.


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Dotted around my website are audio-visual artworks and video essays.

I wanted to collect them all in one place.


So here is a list with links of the audio-visual pieces and video essays I have made which are currently public:


Artworks:


Artwork collaborations with Oscar Vinter:


Video essays:

  • Both the video essays I have made which are currently public can be found here

Narratives of Space and Time in Jen Brea's Unrest (2022) &

Resisting the "sick role" through self-portraits with Charlie Fitz (2021) - https://www.sickofbeingpatient.com/audio-visual-essays


I am currently working on more video essays and a music video.


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During my In Transit online residency earlier in the year, each artist had an online studio which they posted updates and works-in-progress to. As a sick and disabled artists, who works mostly digitally from a bed I find this process really pushed my work forward and gave me a way to track my progress, as well as a space to reflect. I would like to continue this practise in this blog space. Although, I will be doing this whilst trying to adhere to a personal Crip Time, so the posts will be as infrequent as I need them to be. Social Media has sort of served this function for me, but I don't trust it as an archival space.


For now, here is something I posted to social media recently.



I am sick - a statement of self collage I made recently.


I have a rare, genetic, incurable condition. I have multiple comorbid chronic conditions. I am sick and disabled and I will always be sick and disabled.


I have a spine that is not fit for purpose and a body that is always pushed to a point of survival.


My life is worthy, my life is not pitiable, my life is just another type of existence.


Whenever I have a big surgical intervention I come up against the assumptions that after this I will be well rather than the understanding that this is just one more patch up on a body that is failing a bit faster than most. This intervention may save my life and may improve certain symptoms and change my day to day in some positive and some negative ways but it is not a cure.


A family member said to me recently they were struggling with the questions they had been getting about me from well meaning parties who want to know how I am and were sort of expecting this current surgery to make me "well" and they were finding it hard to explain the reality of serious chronic illness to people and explain that this surgery is needed and positive but it will never be the fix/cure all these well-meaningly individuals hope or expect it to be.


I felt really seen by this family member when they expressed this to me, as previously I don't think they understood chronic illness or my existence to this extent, but this comment showed me how much they get it. It was extremely validating.


Also, these comments aren't negative or positive, this is just my reality and I am accepting of that. I get joy and pleasure from life as well as pain and grief. I don't want pity or to be an inspiration. I just want to make art, be in the least amount of pain, eat good food, collaborate with interesting people, spend time with my partner and my dog and get decent healthcare.


I made this artwork as a little reminder that I'm still sick, as long as I breathe I will be sick and that's fine.


#SickOfBeingPatient #CollageArt #DisabledArtist #DisabledGrief #DisabledJoy #ChronicIllness #EDS

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