“Shaping bodies, shaping narratives”, PhD thesis on intersex, epistemic injustice and human rights

I have completed my PhD studies in bioethics at Sydney Health Ethics, in the University of Sydney School of Public Health. The doctorate was conferred on 29 January 2024.
Page last reviewed 18 February 2024

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From March 2018 to December 2023, I was a part-time PhD candidate in the University of Sydney School of Public Health. I submitted my PhD thesis in bioethics for examination on 30 September 2023. On 5 December 2023 the final thesis was formally approved by the chair of the examination. The doctorate was conferred on 29 January 2024.

My thesis is entitled “Shaping Bodies and Shaping Narratives: Intersex People, Epistemic Injustice and Human Rights”, and it considers the many impacts on individuals and families of siloed and conflicting perspectives on the nature, meaning and treatment of people with innate variations of sex characteristics:

The population of people with innate variations of sex characteristics (intersex variations or differences of sex development) is heterogeneous, but individuals typically share risks and experiences of stigmatisation and harm. Dominant ideologies and clinical and legal frameworks typically characterise people with intersex variations as disordered and in need of ‘fixing’, or as comprising a third category of sex that needs recognition or reassignment. Neither approach adequately recognises or respects the diversity of the population and individuals’ values and preferences. Discussion about what it means to have an intersex variation can fail to be intelligible to people with lived experience, and fail to recognise the impact of clinical and legal decisions on lived realities. In this thesis, I argue that these amount to an ‘epistemic injustice’. I consider the nature, material effects and responses to epistemic injustices in a range of settings. In medicine, epistemic injustices include limited disclosure of treatment options and current practices; the systemic marginalisation of community voices and psychosocial professionals; and attempts to discredit or misrepresent testimony. These injustices are mirrored in law and social policy by failures to comprehend the impact of medical and social attitudes on the population, the systemic marginalisation of community voices and expertise, and a preoccupation with protections only for particular kinds of identity, and not also particular kinds of body. Sport and the LGBTQ+ movement are fields where these injustices are notably evident. The human rights system has begun to address the material effects of these injustices. It does so in response to an intersex movement that I argue provides opportunities for epistemic justice and liberation.

The thesis includes 10 chapters journal articles and papers published during my PhD candidacy, including (in the order they appear in the thesis):

  • Carpenter, Morgan. 2023. ‘The Health and Human Rights of People with Intersex Variations’. In Routledge Handbook on Sexuality, Gender, Health and Rights, edited by Peter Aggleton, Rob Cover, Carmen Logie, Christy Newman, and Richard Parker, Second edition. London: Routledge. https://dx.doi.org/10.4324/9781003278405-12.
  • Carpenter, Morgan. 2023. ‘Fixing Bodies and Shaping Narratives: Epistemic Injustice and the Responses of Medicine and Bioethics to Intersex Human Rights Demands’. Clinical Ethics, 1–15. https://dx.doi.org/10.1177/14777509231180412.
  • Carpenter, Morgan. 2022. ‘Ambivalent Attention and Indeterminate Outcomes: Constructing Intersex and DSD in Australian Data’. University of Huddersfield. http://www.intersexnew.co.uk/wp-content/uploads/2023/04/Morgan-Carpenter-MNC-publication-version-aihw-paper.pdf.
  • Carpenter, Morgan. 2018. ‘Torn between Two Worldviews: Intersex People and Marriage Equality’. In Going Postal: More than ‘Yes’ or ‘No’, edited by Quinn Eades and Son Vivienne, 42–47. Melbourne: Brow Books.
  • Karkazis, Katrina, and Morgan Carpenter. 2018. ‘Impossible “Choices”: The Inherent Harms of Regulating Women’s Testosterone in Sport’. Journal of Bioethical Inquiry 15 (4): 579–87. https://dx.doi.org/10.1007/s11673-018-9876-3.
  • Carpenter, Morgan. 2020. ‘Caster Semenya’s Life and Achievements Are Cause for Celebration, Respect and Inclusion; Her Exclusion Is Consequential’. Journal of Medical Ethics 46 (9): 593–94. https://dx.doi.org/10.1136/medethics-2020-106506.
  • Carpenter, Morgan. 2018. ‘Intersex Variations, Human Rights, and the International Classification of Diseases’. Health and Human Rights 20 (2): 205–14. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6293350/.
  • Carpenter, Morgan. 2021. ‘Intersex Human Rights, Sexual Orientation, Gender Identity, Sex Characteristics and the Yogyakarta Principles plus 10’. Culture, Health & Sexuality 23 (4): 516–32. https://dx.doi.org/10.1080/13691058.2020.1781262.
  • Carpenter, Morgan, and Christopher Jordens. 2022. ‘When Bioethics Fails: Intersex, Epistemic Injustice and Advocacy’. In Interdisciplinary and Global Perspectives on Intersex, edited by Megan Walker. London: Palgrave Macmillan. https://dx.doi.org/10.1007/978-3-030-91475-2.
  • Carpenter, Morgan. 2022. ‘Intersex Human Rights in a Time of Instrumentalization and Backlash’. In Human Rights at the Intersections: Transformation through Local, Global, and Cosmopolitan Challenges, edited by Anthony Tirado Chase, Pardis Mahdavi, Hussein Banai, and Sofia Gruskin, 169–80. Bloomsbury Academic. https://dx.doi.org/10.5040/9781350268692.

This comprises a specific, thematic subset of papers that I have authored (or coauthored) and seen published during my doctoral candidacy.

Full acknowledgements, at time of submission, appear in the thesis. At this stage of completion of the thesis, I’m profoundly grateful for the support and encouragement that I’ve received from my supervisors, Christopher Jordens and Ainsley Newson; from the wider Sydney Health Ethics community; coauthors, editors and reviewers including Katrina Karkazis; examiners including Elizabeth Reis and Jackie Leach Scully, and chair of examination Anne Tiedemann; and of course friends, family, and folks in the intersex community.

My thesis is available open access in the University of Sydney library at https://hdl.handle.net/2123/31944.