‘You're basically calling doctors torturers’: stakeholder framing issues around naming intersex rights claims as human rights abuses

Abstract

In this article we address activist, patient advocate and medic perspectives on framing intersex, variations of sex characteristics and disorders/differences in sex development medical treatment as human rights abuses. Problematic aspects of intersex medical treatment have increasingly been highlighted in national debates and international human rights bodies. Some intersex activists have framed aspects of intersex medical treatment as human rights abuses since the 1990s. Other stakeholders in shaping medical treatment, such as patient advocates and medical professionals, are not always content with human rights framing, or even the term intersex. In order to address the different perspectives in this arena we provide background on the primary rights claims that have arisen followed by key human rights framing of these claims. We provide a short discussion of activism styles, looking at pan-intersex social movements and variation-specific patient associations as different styles of health social movements. The analysis of stakeholder perspectives on the use of human rights strategy in health areas provides a useful case study for medical sociology and policy in general.

Intersex: cultural and social perspectives

“…This research has been empirical (for instance Kessler 1998;Preves 2003;Karkazis 2008;Davis 2015;2015a;Monro, Crocetti and Yeadon-Lee 2019;Crocetti et al 2020), autoethnographic or informed by personal experience (Holmes 2009;Morland 2009;Davis 2015;Rubin 2017;Carpenter 2018Carpenter , 2020Malatino 2019) and archival (Griffiths 2018;Dreger 1998). Rather than focusing on what intersex people are, this growing body of work has examined the challenges that intersex people face, which include systematic oppression, discrimination and human rights violations (Ghattas 2013;FRA 2015;Carpenter 2016;Crocetti et al 2020). The emerging field of interdisciplinary intersex studies, therefore, can be characterised by the co-constitution of knowledge with the individuals and communities it seeks to study, as intersex activists (both academics and non-academics) are important authors in the field.…”

LGB+ and heterosexual-identified people produce similar analogies to intersex but have different opinions about its medicalisation

“…We assess lay people's understanding in this research because medical intervention has the ultimate goal of social acceptance (Lee et al, 2006), but research on public understandings of intersex have been sorely lacking (see Liao & Simmonds, 2014 for a call for such research). We build on a small body of work showing that intersex can be differently framed as medical or non-medical by advocates (Crocetti et al, 2020) and lay people who first learn about the topic in focus groups (Lundberg et al, 2019). Stigmatised characteristics (a) can be framed as something physical to be concealed or 'fixed', as a basis for identity pride, or as something that engender token representation (Goffman, 1963;Tajfel, 1978).…”

“…Sexologist Meyer-Bahlburg (1998) coined the term 'the optimal gender policy' to describe Money's protocol. Since the 1990s, medicalisation has been protested by intersex rights groups and their allies (Chase, 1998;Crocetti et al, 2020;Davis, 2015). The 2005 Chicago consensus statement was the principle medical response to these controversies in recent times.…”

“…It acknowledged harms of some surgeries, significant gaps in knowledge, emphasised that the overall aim of clinical medicine was societal adjustment, aimed for a new classification system grounded in genetics, and introduced the neologism disorders of sex development, or dsd, as a new umbrella term in this area (Lee et al, 2006). The Chicago consensus statement has diversified collaborative and oppositional relationships between advocacy groups and medicine (see Carpenter, 2018;Crocetti et al, 2020;Davis, 2015).…”

Towards an agency-based model of intersex, variations of sex characteristics (VSC) and DSD/dsd health

“…While the respective debates have grown and evolved, many contend that medical treatment itself has not shifted significantly (see Feder and Dreger 2016). Intersex stakeholder requests for change are increasingly framed in the human rights language of autonomy and bodily integrity (Crocetti et al 2020). Agency is central to these requests.…”