“Nothing About Us Without Us”: Post-Exertional Malaise (PEM) and the Challenge of Designing Activism for People with ME and Long Covid
Document Type
Book Chapter
Publication Date
2025
Department
Department of Humanities
Abstract
This chapter explores the unique problem experienced by communities of people with debilitating diseases who must combat the epistemic injustice they experience in order to improve their situation. The author draws on activism by people living with myalgic encephalomyelitis (ME) and Long Covid to explore how designers can create accessible forms of protest for people with disabilities. The #MillionsMissing campaigns created by #MEAction serve as a case study that shows how activist participation can help people understand and enact social justice principles. This case study highlights how complex chronic diseases facilitate embodied knowledge, which #MEAction uses to design protests that are accessible to people with ME and Long Covid.
Publication Title
Designing for Social Justice: Community-Engaged Approaches in Technical and Professional Communication
ISBN
9781003469995
Recommended Citation
Nish, J.
(2025).
“Nothing About Us Without Us”: Post-Exertional Malaise (PEM) and the Challenge of Designing Activism for People with ME and Long Covid.
Designing for Social Justice: Community-Engaged Approaches in Technical and Professional Communication, 162-179.
http://doi.org/10.4324/9781003469995-12
Retrieved from: https://digitalcommons.mtu.edu/michigantech-p2/1569