Taking Tragic Measures? Disability Studies’ Anti-Metrology and the Government of Thalidomide

Abstract

This paper interrogates the relationship between thalidomiders, the name used by victims of the drug thalidomide, and the kinds of subjectivity assumed in disability studies as an activist research enterprise.  The thalidomide case presents a fundamental challenge to disability studies’ understanding of tragedy.  I begin by reviewing some founding and more recent literature in disability studies.  Next, I discuss the thalidomide tragedy, and how victims groups are using their existence as tragic in order to participate in the drug’s regulation and the public narratives of the drug.  In the third section of this paper, I discuss three perspectives on subject formation, the Foucauldian, the Heideggerian, and Actor-Network Theory, and ask how we can make sense of this instance tragic subject-formation.  I make a distinction between ‘active’ and ‘passive’ tragedy discourse, and conclude with a discussion of how disability studies might continue to talk about active tragedy.