Towards an Agency-based Model of Intersexuality, Variations of Sex Characteristics, and DSD Health. (20th October 2021)

• Record Type: Journal Article
• Authors: Crocetti, D; Monro, S; Vecchietti, V; Yeadon-Lee, T
• Is Part Of: European journal of public health. Volume 31(2021)Supplement 3
• Publication Date: 2021-10-20
• Subjects: Epidemiology -- Europe -- Periodicals; Public health -- Europe -- Periodicals; 362.109405
• DOI: 10.1093/eurpub/ckab164.320
• Languages: English
• ISSNs: 1101-1262

Abstract

Abstract: Background: The health harms caused by sex-normalising and unnecessary irreversible medical interventions on intersex infants and children can include chronic pain, a need for repeat surgeries, damage to sexuality, serious mental health problems, and sterility. However, access to appropriate healthcare is needed - occasionally for lifesaving treatments in minors, but more often for reparative treatment or condition management in those able to give consent. A social model of intersex health, drawing on disability theory, is useful but insufficient to address intersex issues. Agency and bodily autonomy are key for this population, and this paper aims to develop an agency-based model. Methods: Qualitative semi-structured interviews were conducted with 40 stakeholders in Italy, Switzerland and the UK, and participant observation and action research was carried out with the intersex activist organisation Zwischengeschlecht. The research was funded by the European Commission (grant number 703352). Results: At present there are still serious healthcare deficits which are underpinned by social norms that include rigid ideas that there are only discrete categories of male and female, and entrenched medical practices that continue to violate intersex minor's bodily integrity, whilst overlooking healthcare needs that intersex people may have. Key impediments to intersex agency include body normativity and sex and gender binarism. Conclusions: Agency-based approaches to the health of intersex people and those with differences of sex development (DSD) focus on bodily autonomy and the cessation of normalising medical interventions until an under-age person can exercise fully informed choice regarding treatment. These approaches can be useful in incorporating the social model's critique of the pathologisation of bodily diversities, whilst supporting the provision of effective healthcare where needed.