Beauvoir, Ernaux, and Me: On Age, Disability, and Dying Well.

Abstract

Can the fraught relation between disability and aging ever become untangled? What is the place of the catastrophically disabled in a time when giving voice and being seen are significant lodestars of political activism? And what becomes of the caregivers, who often labor in silence, and who hope to work well enough just to get through another day? This essay draws on the memoirs of Simone de Beauvoir, Annie Ernaux, Amy Bloom, and my own experiences to show the complicated imbrications of age, disability, and caretaking. I attempt to demonstrate through these experiences that age and disability, which appear to be intimately woven together, are oftentimes misleadingly connected. I suggest that an ethic of vulnerability, rather, is a more useful heuristic that avoids collapsing the categories of age and disability together. Nevertheless, these reflections inevitably lead to a discussion of death and the choices, policies, and other care structures (un)available for persons who sometimes desire to make significant decisions about ending their life when confronted with the possibility of terminal and catastrophic mental and bodily decline. Finally, I suggest that these relationships and the decisions about (end of life) care must be understood to be ambiguous and require a deep reciprocity of care based upon love, sympathy, and respect.