The Ontopolitical Life of Pain in Paralysis: Negotiating Pain Ethics in US Hospitals

Abstract (English)

This paper is based on oral history and ethnographic data focused on how paralysis patients negotiate pain within their lifeworlds. From the setting of a multi-tiered care apparatus, this paper discusses how those with varying degrees of physical and sensory functioning navigate their own care and well-being, personal relationships, and selfhood alongside pain that is often medically normalized and objectivized. This paper argues that for those with paralysis, pain is felt, understood, and processed in various ways within various necropolitical spaces. For instance, I describe how the Visual Analog Scale which measures pain in US hospital institutions often fails to account for the experiences of certain individuals for whom pain is expected to be both normal and novel. Pain is often an expected secondary condition, but it must also be interrogated as its stated presence can deploy necessary forms of care and pain management for those affected. Pain can thus create opportunities for agency. As such, pain often exists within a double bind. What are the nuances of this double bind? What are its social life, its costs, and bodily affects that result?