This video explores Gipsy’s lived experience of chronic illness to give an introduction to disability politics. She invites the listener to investigate their own relationship to disability and able-bodied privilege and how this may show up in their narrative work. Gipsy shares with us the methodology (participant action research) that enabled her PhD research work (on young women’s lived experience of chronic illness) to also be a tool for social change and to create a positive impact for participants by the collective coming together and sharing of stories.
Hosking, G. (2023). Complexities of disability, chronic illness and able-bodied privilege [Video file]. International Journal of Narrative Therapy and Community Work, (1). https://doi.org/10.4320/GEZJ8486
Author pronouns: she/her
Disableism: Disableism is a form of social oppression and refers to the social beliefs, actions, practices and assumptions that consciously and unconsciously oppress, exclude, marginalise and otherwise disadvantage people because of actual or assumed disability (Campbell, 2009; Pease, 2010).
Ableism: The focus of ableism is on the devaluing of disability by valuing able-bodiedness as the presumed normal, and the accompanying belief that any impairment is inherently negative and should be treated or eliminated (Campbell, 2009). Campbell defines ableism as “a network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as perfect and species-typical, and therefore essential and fully human. Disability then is cast as a diminished state of being human” (2009, p. 5).
ME/CFS – myalgic encephalomyeltits/ chronic fatigue syndrome – a complex medical condition causing extreme fatigue, cognitive impairment (brain fog), pain, muscle weakness, sensitivity to lights/sound/chemicals. There is currently no diagnostic test or biomarker found.
Fibromyalgia (Fibro): A chronic pain and inflammation condition that affects the whole body and has accompanying symptoms of extreme fatigue, cognitive impairment (brain fog), pain, muscle weakness, and sensitivity to lights/sound/chemicals.
POTS – postural orthostatic tachycardia syndrome – Increased heart rate upon sitting or standing.
Participant Action Research (PAR) – involving research participants as co-researchers in research method and design. Central is a desire to take action and transform social conditions.
ABLE-BODIED PRIVILEGE CHECKLISTS
Exploring the invisible knapsack of able-bodied privilege by Phillis M. May-Muchunda
Autistic Hoya’s brief abled privilege checklist https://autistichoya.files.wordpress.com/2016/03/brief-abled-privilege-checklist-mar-2016.pdf
INVISIBLE ILLNESS WARRIORS BOOKLET AND VIDEO
Resource for young people living with ME/CFS and fibromyalgia
https://invisibleillnesswarriors.wordpress.com/ Includes the video “You can ask that! Getting real about ME/CFS and fibromyalgia”
INTERSECTIONS WITH COLONIALISM
Australian Indigenous people with disabilities facing additional racism and ableism by John Gilroy https://theconversation.com/indigenous-people-with-disabilities-face-racism-and-ableism-whats-needed-is-action-not-another-report-187528Bell, C. (2011).
Blackness and disability: Critical examinations and cultural interventions. LIT Verlag.Grech, S. (2015).
Decolonising Eurocentric disability studies: Why colonialism matters in the disability and global South debate. Social Identities, 21,(1), 6-21. https://doi.org/10.1080/13504630.2014.995347
Soldatic, K., & Grech, S. (Eds.). (2016). Disability and colonialism: (Dis)encounters and anxious intersectionalities. Routledge.
REFERENCES FOR VIDEO NOTES
Campbell, F. K. (2009). Contours of ableism: The production of disability and abledness. Palgrave Macmillan.Pease, B. (2010). Undoing privilege: Unearned advantage in a divided world. Zed Books.