Life as Sickness, Life as Care
Building on previous posts about people who influenced our thoughts, we’d like to write a short post about another person we briefly mention in our book “Museums and Well-being“, and who in reality was a greater influence on our thoughts than might otherwise seem: Johanna Hedva, a Korean American writer, artist, and musician. They are the author of the 2018 novel On Hell, and Minerva the Miscarriage of the Brain, a collection of poetry, plays, and essays published in 2020. Their work deals with death and grieving, illness and disability, as well as mysticism, ritual, and Ancient Greek myth.
We first came across Johanna Hedva from their presentation “My Body Is a Prison of Pain so I Want to Leave It Like a Mystic But I Also Love It & Want it to Matter Politically“, which was presented by the Women’s Center for Creative Work at Human Resources on October 7, 2015. It’s brilliant, thoroughy recommend watching this if you’re not familiar.
But it was the written work “Sick Woman Theory” that built upon this lecture that we most used in our book. That link is to the newly republished 2022 edition, we were referencing the 2016 edition.
Sick Woman Theory is an insistence that most modes of political protest are internalized, lived, embodied, suffering, and therefore invisible. Sick Woman Theory redefines existence in a body as something that is primarily and always vulnerable.
“The most anti-capitalist protest is to care for another and to care for yourself. To take on the historically feminized and therefore invisible practice of nursing, nurturing, caring. To take seriously each other’s vulnerability and fragility and precarity, and to support it, honor it, empower it. To protect each other, to enact and practice a community of support. A radical kinship, an interdependent sociality, a politics of care.”
– Johanna Hedva – Sick Woman Thory
This work prefigured the recent rise in discussion of the politics of care that has seemingly exploded in the last few years. Moreover the work gives a theoretical concepts and ideas for those of us with Chronic Illness. On a practical level we can see this in practice with recent #MEAction and #MEActionUK and #MillionsMissing protests around ME/CFS/LongCovid demanding appropriate funding and research.
Johanna Hedva hasn’t just written and worked in the realm of sickness though, and we encourage you to check out the vast range of their interests and projects. We particularly like the book in progress “the mess“, an attempt to write about music and mysticism. Part memoir, part hagiography, part political theory, part queer prayer, and part ecstasy at the fact that music exists at all.
& if you’d like to see how we incorporate Johanna Hedva’s work into our book, well you could buy a copy here: https://routledge.pub/Museums-and-Well-being
