Abstract 

This provocation examines how digital chronic illness communities have evolved into ‘necessarily oppositional’ spaces where alternative forms of knowledge and care emerge in response to systemic ableism in healthcare. The COVID-19 pandemic has accelerated the growth and importance of these patient-led spaces, leading to new forms of digital access and knowledge sharing (Maslen and Lupton, 2019), with Long Covid communities demonstrating how digital knowledge sharing and research that meaningfully engages with experiential expertise can advance medical understanding of contested conditions (Callard & Perego, 2021). Drawing on disability justice principles (Sins Invalid, 2016) and Smilges’ (2023) concept of crip negativity, I argue that these digital spaces, while acting as support networks that validate lived experiences, have simultaneously become sites of resistance and knowledge production that challenge traditional medical authority. 

I will explore how post-pandemic chronic illness communities both critique and create new ways of knowing illness and disability. Using Fayn, des Garets and Riviere’s (2021) framework for Collective Empowerment, I consider how sharing illness experiences and collaborating to understand and interpret medical knowledge builds collective expertise. I highlight the value of opposition and refusal in these spaces to resist compulsory positivity and build resilience (Smilges, 2023). Drawing on Kafer’s (2013) work on crip futurity and resistance, alongside Price and Kerschbaum’s (2016) crip methodology, I raise that these necessarily oppositional spaces have the potential to reshape access to healthcare knowledge, representation of lived experience, and communication between patients and medical institutions  In doing so, I consider how digital chronic illness communities exemplify disability justice principles in action - particularly around leadership, interdependence, and wholeness - while raising important questions about knowledge co-production that challenge traditional medical authority for complex and contested chronic illness communities. 

This provocation raises important questions for critical disability studies by highlighting the subversive potential of crip knowledge production in digital chronic illness communities, arguing for greater engagement with these oppositional spaces as sites of resistance and transformation in the post-pandemic healthcare landscape.