Young people with a variation in sex characteristics in Aotearoa/New Zealand: identity, activism and healthcare decision-making

Healthcare for Germline Genetically Modified People

“…Interviews with medical experts and intersex individuals further suggested that physicians often use sex, gender, and other sexuality terminology interchangeably (Davis and Murphy 2013). The way healthcare providers communicate intersex conditions at the point of diagnosis and throughout life-long medical care can significantly influence the identity and self-acceptance of intersex individuals (Steers et al 2021).…”

“…As shown in the intersex literature, intersex individuals have been present in our society since the beginning and these individuals continue to face bias in healthcare settings (Steers et al 2021). The intersex literature provides important examples of how a genetically diverse population can be mistreated and suggests ways to improve these negative physical and psychological outcomes.…”

Decolonising and demedicalising intersex research

“…Carlson's framework aspires to "co-ownership, mutually beneficial outcomes, and sharing power by prioritising patients' voices to develop the criteria for determining the effectiveness of the intervention" (2019, p. 86). This resonates with intersex advocates' calls for people with variations in sex characteristics to be more involved in their own healthcare decisions, and for healthcare interventions to be assessed in relation to their experiences and understandings (Carpenter, 2018(Carpenter, , 2020Chase, 2000Chase, , 2002Holmes, 2002Holmes, , 2009Jones et al, 2016;Steers et al, 2020). This could provide an avenue for healthcare interventions to be rejected for upholding a Western model of sex and gender that does not address an individual's cultural needs.…”

“…Although an increasing body of research addresses the topic of intersex, or variations in sex characteristics, none of this research explicitly focuses on Indigenous cultures (Roen & Lundberg, 2020). In Aotearoa this leaves Māori and Pacific parents of intersex children with “no clear point of reference with which to identify” (Steers et al, 2020, p. 3). What might Indigenous knowledges say about intersex advocacy and community building, or about the medical treatment of intersex children?…”

Engaging peers and future parents, creating future turbulence: activist biocitizenship practices and intersex transgression in the classroom

“…It is therefore important to critique the ways in which globally circulating discourses about intersex bodies might potentially be questioned and/or transformed locally (Rubin 2017). It is nevertheless evident that the norm in the vast majority of hospitals worldwide is still one in which the best interest of the intersex-bodied child does not assume the right to bodily integrity, autonomy and selfdetermination (Carpenter 2018;Steers et al 2021), and so forced medical practices occur wherever medicine is accessible (Carpenter 2016). In the words of Morgan Carpenter (2016), despite the existence of Malta's official ban on infant genital surgery as a rare policy exception globally, there has been no research done on subsequent developments there, and so what prevails is 'an unsubstantiated rhetoric of changing clinical practice on one hand, and an inconsequential rhetoric of inclusion on the other.…”