The Invisible in Health and Healing: How to Talk Suffering in the Age of Cure

• In Event: Injury and Invisibility: Empiricism and Anti-Empiricism in Knowing Damage and Regeneration - I

Abstract

Based on two years of ethnographic research in Austria, I will discuss the unseen repercussions of healing and presumed health in the case of Hepatitis C viral infections (HCV). Almost invisible on global health agendas for decades, HCV gained hyper-visibility with a pharmaceutical solution and the promise of cure. In the last six years, a “regime of cure” has calcified for the treatment of HCV, underpinned by a bio-exclusive conception of viral infection, a logic of care oriented at quantitative impact, and the constitution of particular risky subjects. Beyond the conceptual, this novel regime has also loaded presumed sense into the experience of sufferers - even if some feel “cured but not healthy” given decades-long histories with the disease. In my paper, I will explore the question of how to create pause for experiences and existences made invisible and unknowable by the overwhelming logics of biomedicine, curing and global health. I will reflect on the work of relating the invisible to the traceable, speculative and evocative: How can analyzing the means by which such a treatment regime is achieved, maintained and made meaningful trace out experiences rendered invisible? How can we entertain speculative truths about experiences that cannot be seized by hegemonic means of understanding health and healing? And, how do we evoke lived experience without presuming to represent or speak for our interlocutors? Finally, what is the value of such counter-epistemologies beyond the intellectual exercise; how can they manifest meaningfully in the lives of our interlocutors, and should they?

Author

• Lisa Lehner, Cornell University