This presentation is based on my paper, “Reimagining Protest: Artivism in the Myalgic Encephalomyelitis (ME) Community,” published in Including Disability Volume 4. 

I have long been interested in activism, which is a critical element of the disability rights movement. Disabled activists and protesters have paved the way for creating more accessible activism opportunities. However, traditional forms of activism often exclude activists with severe energy-limiting disabilities, like myalgic encephalomyelitis (ME). ME is a chronic, multi-system disease characterized by post-exertional malaise, a worsening of symptoms following ordinary activity that may result in a permanent decrease in functioning. There is a well-documented history of marginalization and negative stereotyping of people with ME from scientific, clinical, and social communities, in addition to outright denial that the disability exists.

People with ME have been ignored, maligned, and disbelieved for decades while being excluded from traditional forms of disability justice activism. ME activists have had to adopt creative activism techniques to raise awareness and share their stories while adhering to their energy limits. In this presentation, I will explain how artivism, the intersection of art and activism, provides a unique way for people with severe ME to participate in protests and movements from their homes or beds.

In this project, I aimed to analyze the artivist practices of people with severe ME, shine light on more inclusive activism techniques, and call for further awareness of and research on ME. When I decided to research artivism among people with ME, I turned to #MEAction, an organization dedicated to advocacy for the ME community. In July 2023, #MEAction shared their Severe ME Artists Project 2023 Gallery. The Gallery includes written, art, video, and mixed media submissions, all created by artists with severe ME.

I identified 5 main themes from a sample of artwork from the Gallery: lack of freedom, anthropomorphism of ME, invisibility, anger, and fear. The themes speak to the challenges of living with ME in a society that has disbelieved and stigmatized ME patients for decades, if not longer. Examining the artwork through the lens of crip theory offers further nuance to the analysis, arguing that ME artivism can critique the status quo of established institutions and the treatment of people with ME.

As the number of people with ME increases globally due to COVID-19, it is of the utmost importance to share and continue this research. Several studies estimate that half of patients with Long COVID fulfill ME criteria. It is also critical that disabled people—particularly people with lived experience of ME—lead the research. I plan to continue this work, analyzing the artwork from the 2024 and upcoming 2025 Severe ME Artists Project as a companion research piece. I hope sharing my research can create new opportunities for disability studies scholarship to center historically missing voices and uplift the artwork created by people who are so often silenced.