Epistemic and institutional recognition work in changing conditions of social visibility: Anosmia's journey from the shadows to the spotlight

Abstract

This paper explores the complex relationships between recognition, collective action, and social (in)visibility of health conditions. We trace how collective action for recognition changes as conditions of visibility shift. We investigate how the Covid-19 global pandemic thrust one health condition (anosmia) and collective efforts around its recognition from almost complete public invisibility into a sudden spotlight. We show how 'prepared' movement actors leveraged this sudden hypervisibility to mobilize resources and change cultural values, noting how prior 'recognition work' becomes a resource for new ways to advocate for their condition's recognition, toward epistemic and institutional recognition: from building a shared epistemic ground and improving relatability, toward resource distribution and finally, creating and institutionalizing new cultural values through policy change. Our findings highlight organizational efforts to mitigate community tensions and dispersions related to hypervisibility, through boundary and integration work.