Citizenship studies is highly relevant to understanding intersex, variations of sex characteristics (VSC), and Disorders of Sex Development (DSD), yet little scholarship exists to date about intersex citizenship. This article outlines and develops the foundations for a distinctive intersex citizenship studies, addressing health citizenship, children's citizenship, legal rights, and breaches of human rights experienced by intersex people and those with DSD. The paper presents original qualitative data from research in the UK, Italy and Switzerland with intersex people and their advocates, medics, and policy stakeholders. It shows that asserting citizenship is crucial for intersex people and those with VSC or DSD. This extremely marginalised population require social, intimate, children's and health citizenship. Intersex citizenship addresses both medical and human rights issues in an integrated way.
Agency-based approaches to the health of intersex people and those with DSD focus on bodily autonomy and the cessation of normalising medical interventions until an under-age person can exercise fully informed choice regarding treatment. Discussions regarding intersex agency and health care can be inspired by the social model of health that emerged from disability theory. However, a purely social model is insufficient to address the harms that has been caused by DSD medical interventions, and the healthcare needs that some intersex people have. Drawing on original empirical research conducted in Italy, Switzerland and the UK, this article explores agency-based approaches to intersex and DSD, incorporating the social model's critique of the pathologisation of bodily diversities, whilst supporting the provision of effective healthcare where needed. The article addresses healthcare deficits and their cultural underpinnings. It identifies key impediments to intersex agency, including body normativity and sex and gender binarism. While there has been slight movement towards an agency-based approach to intersex in some national medical settings in the last ten years, there is still a need for change to the conceptualisation of intersex/DSD and subsequent revisions to healthcare provision.
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.
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