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

Abstract

Young people born with variations in sex characteristics (VSC) or disorders of sex development (DSD) face numerous challenges in navigating issues relating to identity and to their lived and embodied experience. There is limited published research amplifying the voices of young people with a VSC, especially from Aotearoa/New Zealand. This qualitative study provides an up-to-date picture of the lived experience of 10 young people with a VSC in Aotearoa/New Zealand. The research was conducted in collaboration with the advocacy group, Intersex Youth Aotearoa, and explored the level of support provided by health services, peers and advocacy groups in relation to the ways the participants viewed themselves and their bodies, and their health related decision-making. Findings reveal the pressure on young people with a VSC to conform to cultural and societal norms, specifically, heteronormative and traditional constructs of how male and female bodies should look in Aotearoa/NZ society. Such views, often held and perpetuated by health professionals and parents, contributed to complexities surrounding identity, agency and acceptance of difference experienced by these young people. The implications of these findings are discussed, including the need for better psychological and peer support for young people.

Keywords:

• Variation in sex characteristics
• identity
• lived experience
• young people
• Aotearoa/New Zealand

Acknowledgements

Thanks go to Foundation Brocher for providing DS with a visiting resident scholarship to facilitate the initial drafting of this paper and to the other authors for their input into subsequent drafts of this paper. Special thanks to participants in the study for their time and openness, and to the health professionals/VSC advocates who referred them to the study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1 Identity is defined here as ‘our sense of self as seen by ourselves and others in relation to a complex combination of psychological and sociological factors over time and place’ (Erikson 1968; McAdams and Cox 2010).

2 Aotearoa is the Māori language name for New Zealand.

3 The NZHRC Intersex Roundtables (2016, 2018) included medical specialists, legal, bioethics and academic experts, government representatives and those with lived experience. The roundtables aimed to identify current healthcare practice, areas of concern and possible future actions.

4 Whilst there is some collaboration between the VSC youth advocacy sector (ITANZ/IYA) and health professionals working in the VSC field (e.g. the CRG), funding gaps, lack of capacity and terminology continue to be impediments to providing successful support, and only some health professionals regularly refer young people to ITANZ or IYA.

5 Cloacal anomaly is a variation in which a female is born with their lower abdominal structures (rectum, vagina and urethra) merged.

6 Vaginal dilation involves gently stretching the vagina to increase length and width and to improve the elasticity of the vagina wall tissue.

Additional information

Funding

The study was funded by grants from the University of Otago, New Zealand and the Australasian Paediatric Endocrine Group.