Between Critique and Reform: Ways of Reading the Intersex Controversy
This chapter shows that intersex activism requires a particular theory of the relation between activism's critique of medicine, and medical reform. In a 2002 conference presentation, Intersex Society of North America (ISNA) founder Cheryl Chase complained that 'many people misunderstands what criticisms the intersex patient advocacy movement makes of standard practice, and what reforms people ask for'. The chapter aims not merely to understand the Society's principal criticisms of medicine, together with its suggested medical reforms, but moreover to analyse how leading intersex activists, in their narratives about intersex, implicitly theorize the relationship between critique and reform. It explains the weakness or strength of progressive paternalism depends upon what intersex activists claim to know about patient-centered care, and the manner in which their claims are made. The reluctance of psychiatrists such as David Sandberg and Heino Meyer-Bahlberg to reform medicine without outcome data for ISNA's recommended treatments is therefore not irrational.