“You’re Entering Our World Now”: Lyme disease, Crip Emotional Intelligence, and Post-Pandemic Care Work

Ritti Soncco (University of Edinburgh, UK)

Panel: Care in rare diseases

Abstract: Was the COVID-19 pandemic really unprecedented? Months before it reached Scotland, people living with Lyme disease were already organising formal and informal medical networks, stockpiling essential goods, arranging remote work, and shielding at home. They did this by reverting to familiar, former networks.

This paper builds on 12 months of hybrid fieldwork on Lyme disease knowledge production in Scotland. I first map Lyme disease as a “contested illness” (Dumes, 2020) or an “illness you have to fight to get” (Dumit, 2006). I then explore how care during the pandemic was produced by Lyme disease patients, to whom living in a world where sickness is the norm was comfortable, familiar, and preferable. I argue that crip emotional intelligence (Piepzna-Samarasinha, 2018) provided Lyme disease patients with care work tools that prepared them for the pandemic, and over the year 2020, these patients witnessed able-bodied people learn their skills, enter their world, and share (however briefly) a biosocial citizenship. As such, care narratives describing the pandemic as ‘unprecedented’ reveal themselves as ableist and silence the care experience of people living with contested illnesses.
This paper discusses crip emotional intelligence as a mode of attention normally excluded from notions of care, whose inclusion could have important consequences: it centers patients as authors of their own care; it offers itself as an important knowledge source in epidemic/pandemic preparation; it reveals care as an ableist structure and argues for post-pandemic care that does not continue to make people living with contested illnesses invisible.