A sociological investigation of the lived experiences of people with Androgen Insensitivity Syndrome (AIS) in South Africa

Abstract

Androgen insensitivity syndrome (AIS) is an intersex variation where a person is born with male chromosomes (XY chromosomes), but as a result of their body not responding to androgens, they develop and are born with a phenotypical female body. Individuals with AIS usually identify and live as women and the variation is often only diagnosed when they are medically investigated as a result of delayed puberty. Although AIS comes with specific health concerns that may require medical attention and intervention, it has been increasingly medicalized over the last 50 years, with gendered assumptions guiding medical protocols. Medicalized practices include medically unnecessary surgeries in many cases and also a conviction that individuals should not know the full truth about their variation as this would result in gender dysphoria. These medical practices of promoting secrecy and silence have contributed to the stigma surrounding an AIS variation. As a result of the shame that individuals have been made to feel about their variation, their experiences have been hidden and knowledge on AIS has until recently been limited to medical studies on the variation. Little is therefore known about the lived experiences of people with AIS worldwide and specifically in South Africa. This study aimed to contribute to sociological investigations on the lived experiences of people with AIS in South Africa. This was done by providing a review and analysis of the existing literature and by making use of gender structure theory as a theoretical position. To gain access to the subjective views of people with AIS, data were gathered by making use of in-depth data collection methods. These methods included online written or face-to-face interviews with South African women with AIS. The findings of this study confirm findings in the intersex literature and show that medical practices and interactions with medical professionals over the years have contributed to the stigma of having AIS and to feelings of shame, objectification, and difference among participants. This contributed to negative health outcomes in participants’ lives. Negative feelings of shame and difference were also reinforced by gendered expectations in everyday interactions with family and friends. Nevertheless, most participants had come to terms with their AIS with the support of an intersex community and supportive family, friends, and partners. There were also positive accounts of interactions with medical professionals where honesty, transparency and bodily autonomy were at the centre of interactions. This contributed to participants

understanding their conditions, making informed choices, and living healthy and happy lives.