Intersex activism, bringing the personal to the public

This paper provides initial findings from an EU funded project about Intersex, Human Rights, and Citizenship in the UK, Italy and Switzerland. It focuses on intersex peoples’ accounts of the developments in contemporary Intersex activism, towards human rights claims that move away from both purely medical jurisdiction and/or identity politics. The topic of Intersex human rights is highly pertinent to sociologists, as Intersex activism is currently entering the international and national human rights spheres, and there is a dearth of research about this. This new project provides original insights into the ways that personal and social troubles are intertwined.
Historically, Intersex medical treatment is multi­layered, contradictory and problematic. Treatment for minors has been especially concerning, as medics have used psycho­social rationales as a justification for coercive surgery, combined with shaming and inaccurate diagnosis communication. Since the creation of multi­disciplinary centers and teams following the 2006 Consensus Convention guidelines, many medical centers now claim these previous issues have been resolved (or claim the surgical techniques are now ‘better’). Yet, generally these clinics still do not refer new patients and families to peer groups and/or patient associations as would occur with some other medical conditions, evidencing ongoing discord between user generated expertise and medical authority. Therefore, this presentation will address different forms of intersex activism, their fluctuations between biosocial patient association forms and social movement organizations, and the varied targets of their actions, which increasingly include the general public and international policy bodies outside the medical realm.