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.