Spoonies: People who live with chronic pain and subscribe to spoon theory may refer to themselves as “spoonies… it’s a way for anyone who lives with chronic pain to explain the way they ration their energy based on their illness.”
People with chronic pain start each day with a set number of proverbial spoons, each one representing the physical and mental energy it takes to complete a daily task or activity. Smaller tasks, like showering may cost only one spoon, while larger tasks, like cooking may take three or four spoons. On days with increased pain, even sma
People with chronic pain start each day with a set number of proverbial spoons, each one representing the physical and mental energy it takes to complete a daily task or activity. Smaller tasks, like showering may cost only one spoon, while larger tasks, like cooking may take three or four spoons. On days with increased pain, even smaller tasks may require multiple spoons…“Patients have to be economical in how they spread the use of their spoons in their daily activity.” (What Is the Spoon Theory Metaphor for Chronic Illness?, 2021)
I’d actually denied myself the truth of the pain involved in a show about making pain apparent”
(Barokka (Okka), 2017)
Khairani Barokka (Okka) is an Indonesian writer and artist, with extreme chronic pain and fatigue, who produced Eve and Mary Are Having Coffee, a solo deaf accessible poetry/art show about pain (which she manages with the highest possible human dosage of an effective painkiller).
Okka talks about a really fundamental notion of experiencing pain but the difference in how that is perceived by herself vs others. To make her pain visual to those who could not see it, in her performance, Okka would paint her right-side and chest in blue coffee and use poetry to describe her experience of living with the condition caused by a concoction of intergenerational trauma, healthcare abuse and neglect.
It is sad to hear that Okka had to wait so long to get the treatment and help she needed years before it was offered to her. However I can imagine this to unfortunately not be an uncommon experience as Okka describes “because women’s pain in particular, and brown women’s pain (in Western settings in particular, but also globally) is underestimated and undertreated” (Barokka (Okka), 2017). Again, an important reason to consider the intersectional discrimination of disability, race and gender, especially within the healthcare systems.
It feels empowering to hear how Okka had eventually embraced and embedded her disability further into her show. “I am 98% of the time kneeling or laying down, performing poetry and performance art while refusing to stand and cause myself pain, whether seen by others or not… spoke about pain and allowed my pain to be visual – throughout the show, I pour and rub in blue ‘divine coffee’ paint all over the right side of my body and chest. I wanted to make an ‘invisible disability’ visible, through refusing to stand up to perform, and through the paint’s visualisation of my pain.” This directly contrasts the ignorant concept of those in chronic pain are told that they ‘hide it well.’
Something that Okka mentions also reminds me of the video “Not all disabilities are visible – The Horizontals” from the pre-task. Okka says that she “paid such attention to how accessible the show would be for other disabled people who might want to attend, and because there had been no option of dedicated care given to me, I’d given up on my body being allowed to be free of pain.”
Similarly, Suriya Aisha from The Horizontals explains:
Partway through, I had to have a word with myself. See I treated my volunteers well, but not me. For me, just about sleeping was okay, always working was okay. I got burnt out.”
(TEDx Talks, 2017)
It seems like the lack of care for yourself is a practice that is inbuilt within the Arts and creative sector. It is something that artists are having to fight for – even thought it should be something that is easily accessible to all. This is re-affirmed by Okka’s experience: “the academia and the arts, for some of us, are contact sports. What we do literally bruises us, maims us, and brings to bear how intellectual and artistic curiosity, our intelligence and our knowhow may face head-on the fact of not being the recipient of proper healthcare for years.”
How could you apply the resources to your own teaching practice?Due to the pandemic, UAL has adopted a blended model of working which has in many instances made education a lot more accessible to those with disabilities, caring responsibilities, those joining internationally/ from different time zones or working many hours due to financial restraints. It has shown that education and work can actually be done in ways that is more inclusive so how can we maintain and continue to make it more accessible as we shift away from blended learning? How can we acknowledge the importance of students and staff’s wellbeing and mental health when it comes to learning. The notion that the lack of self care being inbuilt into the Arts sector could be something that we dismantle within education itself by making it easier for students and staff to be vocal about their capacity and expectations.
Bibliography:
Miserando, C., n.d. The Spoon Theory. [image] Available at: <https://complextruths.org/wp-content/uploads/2019/01/SpoonTheory3.gif>
Cleveland Clinic. 2021. What Is the Spoon Theory Metaphor for Chronic Illness?. [online] Available at: <https://health.clevelandclinic.org/spoon-theory-chronic-illness/#:~:text=What%20is%20a%20%E2%80%9Cspoonie%E2%80%9D%3F,energy%20based%20on%20their%20illness.>
TEDx Talks, 2017. Not all disabilities are visible. | The Horizontals | TEDxBrum. Available at: <https://www.youtube.com/watch?v=YhXcP65h0sI>
Barokka (Okka), K., 2017. Deaf-accessibility for spoonies: lessons from touring <i>Eve and Mary Are Having Coffee</i> while chronically ill. Research in Drama Education: The Journal of Applied Theatre and Performance, 22(3), pp.387-392.