Intersex lived experience: trauma and posttraumatic growth in narratives

ABSTRACT

Intersex people have diverse bodies and identities but are unified by experiences of pathologisation, enduring human rights violations, stigmatisation, and mental health issues stemming from shame and secrecy. Medical interventions aimed at mitigating inferred psychosocial or parental distress occur without substantial evidence of their benefit and have been found to be themselves, stigmatising. Medically unnecessary and non-consensual interventions have been identified as human rights violations. Access to psychosocial and peer support for intersex people has been inconsistently facilitated by clinical multidisciplinary teams and intersex people are at danger of epistemic injustice in healthcare settings. A manuscript of 26 collated narratives written and illustrated by people aged 18–87 with intersex lived experience (N = 17) was examined using Interpretative Phenomenological Analysis. Four superordinate and 13 constituent themes emerged describing experiences of trauma and posttraumatic growth. Narratives depicted how experiences of systematic pathologisation of intersex bodies were negatively internalised and affected sense of self, family function, and social agency. Posttraumatic growth was facilitated through overcoming epistemic injustice, developing self-acceptance and increasing social connection. The findings are discussed in terms of posttraumatic growth and their implication for development of affirmative healthcare services for intersex people and the importance of psychosocial support as a primary intervention.

KEYWORDS:

• Intersex*
• di* of sex development
• human rights
• lived experience
• narrative
• phenomenology
• posttraumatic growth
• qualitative

Acknowledgments

The authors wish to thank the intersex community members whose gave permission for their narratives to be used in this qualitative analysis. They also would like to thank Phoebe Hart, Morgan Carpenter and Steph Lum for their intersex expertise and input.

Disclosure of potential conflicts of interest

No potential conflict of interest was reported by the author(s).

Ethics approval

This research study used existing written and drawn material as secondary data and was conducted in line with the principles of the Declaration of Helsinki. Queensland University of Technology Human Research Ethics Committee approved the research (Reference number: 1,800,000,978).

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Consent to publish

The authors affirm that human research participants provided written informed consent for publication of quoted narratives and their illustrations in Figure 2.

Figure 2. Image B – The head that towed around a body.

Authors’ contribution

All authors contributed to the study conception and design. Material preparation, data collection and analysis was performed by Bonnie Hart. The first draft of the manuscript was written by Bonnie Hart and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Additional information

Funding

This research was not supported through dedicated funding.

Notes on contributors

Bonnie Hart

Bonnie Hart, BBehSc (Hons Psych), is an intersex woman, peer support worker, and advocate whose research addresses how people born with variations in sex characteristics navigate complex psychological, social, and medical issues to safely access healthcare and social services. Bonnie has taken leadership roles with Intersex Peer Support Australia (formerly the AIS Support Group Australia) and is an original signatory of the Darlington Statement, an Aotearoa/New Zealand and Australian community consensus statement.

Jane Shakespeare-Finch

Jane Shakespeare-Finch, PhD, is Professor in the School of Psychology and Counselling at Queensland University of Technology, Brisbane, Australia. Professor Shakespeare-Finch’s primary area of research is in posttraumatic growth. For more than 20 years ago, Jane has worked to promote positive post-trauma changes in a wide variety of populations including emergency services, survivors of sexual assault, natural disasters, bereavement, and people from refugee backgrounds. Jane is Immediate Past President of the Australasian Society for Traumatic Stress Studies and has published approximately 120 peer-reviewed works.