Navigating the complexities of adult healthcare for individuals with variations of sex characteristics: from paediatric emergencies to a sense of abandonment.

Intersex people and those with variations of sex characteristics face significant health and social issues. This paper analyses the complexities of adult healthcare for this diverse population, including the root causes of deficiencies in care provision. Many minors with variations of sex characteristics are subjected to irreversible, non-consensual medical interventions, which can have negative effects on their health and wellbeing as adults. This 'emergency' approach to intersex paediatric healthcare has been challenged since the 1990s, but there is still a lack of understanding about how the paradigm affects adult care. This paper aims to raise awareness of the health challenges faced by adults with variations of sex characteristics. It identifies themes related to the challenges associated with accessing appropriate adult care, including the repercussions of childhood treatment, the lack of transitional services and psychological support, the limited general medical knowledge about variations of sex characteristics, and the reluctance to access services due to fear of stigma or past medical trauma. The paper indicates the need for more attention to intersex people's health needs as adults, moving away from attempts to 'fix' them as minors towards approaches which consider and provide for their diverse healthcare needs in a broader temporal context.

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

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.

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

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.