In reading ‘Deaf-accessibility for spoonies: lessons from touring Eve and Mary Are Having Coffee while chronically ill’ I was able to partly relate to the invisibility of experience chronic pain and fatigue, being diagnosed with Chronic Fatigue Syndrom/Myalgicencephalitis over 10 years ago. I also can relate to experience a mixed response from medical professionals who due to the pain being invisible, some outwardly and bluntly describe the condition as non existent as well as non treatable.
I equally have tried acupuncture, eating dark chocolate but none have really been to avail. My pain and fatigue are no way near on the scale of the authors, and their approach to performing across the globe is remarkable. I think it is especially important that they included the anecdotes of experience where they were discriminated against, patronised and ostracised by the various institutions they visited. The work put in to highlight intersectionality as the core is so vital, which exposes even more so the lacking institutional responses and makes me question what their programming intent truly was, if they had thoroughly considered it even.
I continued to read on a couple of the referenced articles, including on ‘total pain’ which is ontologically very interesting, especially how it accrues and can operate intergenerationally.
2 responses to “what Yasmin Gunaratnam calls ‘total pain’”
I was diagnosed with suffering from migraines when I was a just 12 years old (and whilst my experiences are not as sever as some that I have read or discussed with other migraine sufferers), during an episode, I experience loss of vision, numbness in my face and upper limbs, inability to speak, which are totally debilitating.
Like you I have seen many healthcare professionals, who have told me just to manage it…don’t get stressed out, and avoid cheese, red wine and chocolate. I have been given opioid painkillers that have negatively affected my daily ability to function normally. Mostly, I’m shooed away by people who should know better, so I gave up trying to get medical help and sought ways to manage it myself as they told me to.
I never considered that I had a disability until I read the IN.VIS.I.BLE DIS.A.BIL.I.T.Y article, a poem by Anonymous, She/Her, UK (https://issuu.com/shadesofnoir/docs/disabled_people p.220) for my Session 2 pre-task and the pages that followed that listed (some) Invisible Disabilities.
I will say that experience begets knowledge. I want to think that whilst I am no medical professional, if a student was to disclose to me that they had a hidden disability (or a disability of any kind for that matter), it is the minimum requirement that I do some research into that disability, so that I can find out how to make that students’ time in my technical area an inclusive, accessible, comfortable and understanding encounter.
Hi Will,
I find opening with your personal account particularly powerful. Specifically, ‘I also can relate to experience a mixed response from medical professionals who due to the pain being invisible, some outwardly and bluntly describe the condition as non existent as well as non treatable.’
I would love to hear you explore this more in concrete terms; centring the experience of the intersectional individual in the academy, whether student or staff.
A few questions spring to mind;
How do we bridge gaps in positionality to improve inclusivity? (i.e. not pertaining to the same Ability/Gender/Race)
How does your understanding of a (somewhat) shared experience of disability highlight the similarities and differences in relation to intersectional experiences?
This SoN reference seems pertinent, ‘I am staff, not a student’: https://issuu.com/shadesofnoir/docs/disabled_people/219
The use of complaint points me towards the work of Sara Ahmed, Complaint! https://www.google.co.uk/books/edition/Complaint/_dc7EAAAQBAJ?hl=en&gbpv=1&printsec=frontcover
Best
z