Moving intersex/DSD rights and care forward: Lay understandings of common dilemmas

Abstract

When sex characteristics develop in ways that do not conform to binary models, dilemmas arise regarding how to understand the situation and what terminology to use to describe it. While current medical nomenclature suggests that it should be understood as a disorder of sex development (DSD) prompting medical responses, many describe intersex as a human variation in sexed embodiment that should be protected under discrimination laws. These opposing perspectives suggest different principles to employ in responding to dilemmas about gender assignment, early genital surgery and full disclosure of medical information. In this discursive psychological study, we explore how lay people, without prior knowledge or experience of intersex/DSD, make sense of these dilemmas and the underpinning discourses giving rise to how they talk about these situations. By using the discursive framework of ideological dilemmas, we analyse how people make sense of sex and gender (as binary or non-binary), how they deal with difference (as problematic or not), and how they understand who is in a position to make decisions in such situations. We conclude that engaging with dilemmas in-depth is more constructive than favouring one principle over others in moving social science research, reflexive clinical practice, and wider political debates on intersex/DSD forward.

Psychosocial care and support in the field of intersex/diverse sex development (dsd): counselling experiences, localisation and needed improvements

“…Given the paradigmatic change towards a full informed consent approach, treatment policies and ethics are changing. Research and human rights activism both contributed to an altered perspective that stresses the importance of long lasting psychosocial support; psychosocial care and peer counselling are now central elements requested by the new guidelines [ 20 – 22 ].…”

Dealing With Uncertainty and Lack of Knowledge in Diverse Sex Development: Controversies on Early Surgery and Questions of Consent

“…As we have to deal with controversies and knowledge gaps, matters of handling risk and uncertainty 66 and ways of dealing with specific dilemmas 41 , 67 play a crucial role. Thus, awareness of these issues should be raised.…”

“…60,62,63 Shared decision-making tools have also been developed for dsd conditions such as CAIS and CAH, and their generalizability and applicability need to be researched. 64,65 As we have to deal with controversies and knowledge gaps, matters of handling risk and uncertainty 66 and ways of dealing with specific dilemmas 41,67 play a crucial role. Thus, awareness of these issues should be raised.…”

‘You're basically calling doctors torturers’: stakeholder framing issues around naming intersex rights claims as human rights abuses

“…, Lundberg et al . : 371). Some patient group representatives and medics have claimed that IHRBs who have addressed intersex rights claims have not listened to patient associations, and are misinformed by LGBT organisations (Cools et al .…”