Narratives of Resistance: Ethics, Expertise, and Co-Production in the Intersex Rights Movement

Daniela Crocetti ()
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Daniela Crocetti: Faculty of Medicine, Bar-Ilan University, Ramat Gan 5290002, Israel

Social Sciences, 2025, vol. 14, issue 10, 1-18

Abstract: The medical treatment of people with innate Variations of Sex Characteristics (VSC) and intersex individuals remains a contested ethical field, where personal narratives have emerged as strategic and epistemological tools. This article examines how such narratives challenge entrenched medical authority, resist pathologizing models of care, and shape evolving legal and ethical frameworks. Using a reflective, interpretive approach grounded in thematic analysis of publicly available cases, we trace narrative interventions across two domains: as medical evidence in clinical contexts and as testimony in policy and legal advocacy. Examples include public protest, contested collaborations with medical professionals, and participation in legislative debates. These accounts not only document the harms of non-consensual medical interventions but also reconfigure definitions of legitimate knowledge, positioning lived experience as counter-expertise. In doing so, they disrupt traditional hierarchies of authority and contribute to the co-production of alternative visions for intersex healthcare and rights. While narrative mobilization can catalyze significant institutional change, it also entails emotional and ethical burdens for those repeatedly called upon to share their experiences. We argue that storytelling is not merely an accessory to reform but a foundational mechanism for advancing medical ethics, influencing policy, and expanding human rights protections.

Keywords: intersex; Variations of Sex Characteristics; narrative; social movements; social health movements; human rights (search for similar items in EconPapers)
JEL-codes: A B N P Y80 Z00 (search for similar items in EconPapers)
Date: 2025
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