Shaping Bodies and Shaping Narratives: Intersex People, Epistemic Injustice and Human Rights

Abstract

The population of people with innate variations of sex characteristics (intersex variations or differences of sex development) is heterogeneous, but individuals typically share risks and experiences of stigmatisation and harm. Dominant ideologies and clinical and legal frameworks typically characterise people with intersex variations as disordered and in need of ‘fixing’, or as comprising a third category of sex that needs recognition or reassignment. Neither approach adequately recognises or respects the diversity of the population and individuals’ values and preferences. Discussion about what it means to have an intersex variation can fail to be intelligible to people with lived experience, and fail to recognise the impact of clinical and legal decisions on lived realities. In this thesis, I argue that these amount to an ‘epistemic injustice’. I consider the nature, material effects and responses to epistemic injustices in a range of settings. In medicine, epistemic injustices include limited disclosure of treatment options and current practices; the systemic marginalisation of community voices and psychosocial professionals; and attempts to discredit or misrepresent testimony. These injustices are mirrored in law and social policy by failures to comprehend the impact of medical and social attitudes on the population, the systemic marginalisation of community voices and expertise, and a preoccupation with protections only for particular kinds of identity, and not also particular kinds of body. Sport and the LGBTQ+ movement are fields where these injustices are notably evident. The human rights system has begun to address the material effects of these injustices. It does so in response to an intersex movement that I argue provides opportunities for epistemic justice and liberation.