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Report

Teaser, summary, work performed and final results

Periodic Reporting for period 1 - EUICIT (EU Intersex Citizenship)

Teaser

Summary

Intersex in an umbrella term that can be defined as being born with bodily sex characteristics that do not conform to standard binary definitions of male or female. In this arena stakeholders use a wide variety of terms such as intersex, variations of sex characteristics (VSC), Disorders or differences of Sex Development (DSD for disorder and dsd for differences), and variation-specific medical terms. Those concerned with human rights and citizenship tend to focus on problematic practices as opposed to terminology differences, while primarily using the terms intersex or VSC. The global medical treatment of VSC continues to include practices that are experienced by affected individuals as harmful, including infant and childhood surgeries, sterilisation, and hormone treatment conducted for psycho-social motives without consent of the child.

The main research objectives were to:
â€¢ Develop specialised knowledge on the two main strands of intersex/DSD agendas in the EU; those claiming intersex identities and rejecting the pathologization of intersex, and those associated with DSD medical approaches.
â€¢ Develop knowledge of intersex/DSD citizenships, including the claims of individuals/groups with specific medical conditions which have broad, socially-transformative agendas.
â€¢ Provide socially situated comparative knowledge about intersex/DSD activism, citizenship, and democracy in the EU.

Work performed

The project adopted a case study approach of the situations in Italy, Switzerland and the UK. Documentary analysis provided understandings of human rights, citizenship and democracy, as well as the history of the various styles of activism and rights claims in this arena. Interview schedules were designed using the findings and concepts developed in the review of EU-wide developments and the literature review of relevant scholarship. Qualitative research was conducted with patient advocates, intersex activists, medical practitioners and policy makers (a total of 40 interviews). Participant action research with the partner organization Zwischengeschlecht was conducted which included preparation of the NGO report for the CEDAW\'s (Convention on the Elimination of all Forms of Discrimination Against Women) review of Italy in July 2017.
Dissemination activities were conducted throughout the course of the research action. Five events in the UK and Italy were organized in collaboration with stakeholders. The PI and supervisor gave 28 seminars, talks and conference presentations, including a keynote speech, at 16 different institutions in five different countries. Downloadable dissemination materials were developed including stakeholder and human rights briefs and a visual presentation on â€˜stakeholder perspective on intersex human rights proclamationsâ€™. A policy report was published in October 2017, which has since been widely downloaded. A pioneering international conference was organized at the University of Bologna, 4-5 June 2018. The conference was attended by 75 academics, activists and advocates from over 20 different countries and a call for papers for a special multi-disciplinary journal issue on intersex was launched. An editorial board of 9 renowned interdisciplinary intersex scholars was constructed and the special issue proposal was accepted by the journal Culture, Health & Sexuality. Two scientific articles were published during the course of the project in Citizenship Studies and the International Journal of Human Rights. Two other articles are forthcoming subject to revisions in Etnoantropologia, and Sociology of Health and Illness and a further paper is being developed for the Special Edition of Culture, Health & Sexuality.

Final results

This project contributed to the state of the art in social studies of intersex in numerous manners.
Participatory democratic mechanisms, such as consultations, were shown to be limited in their efficacy, with only certain groups being consulted by medics (such as parents and some patient-advocates). Those who sought to effect change via more oppositional means such as international lobbying and demonstrating were usually sidelined by national policy makers and medics.
The research confirmed that non-consensual cosmetic medical interventions on infants and young children, forced sterilisation of intersex minors, and terminations of intersex foetuses continue to take place. Damaging unnecessary elective medical interventions in childhood appear not to have diminished despite guidelines that suggest postponement of irreversible cosmetic medical interventions until a child can give consent, and condemnation of current practices by human rights declarations. The situation regarding practice and attitudes is complex and consistency is lacking across and within countries. Some medics condone current practices despite evidence of their harm, whilst a few others seek to postpone interventions but face pressure from parents to conduct surgeries.

Whilst activists and patient advocates diverge regarding with the strong emotional register of Human Rights framing language (such as â€˜mutilationâ€™ and â€˜tortureâ€™), concerns regarding bodily integrity, autonomy and quality consensual medical care are shared across patient advocate and activist stakeholder groups. The project findings progressed beyond the state of the art in documenting the wide range of citizenship deficits currently faced by intersex people. It developed understandings of the complexity of agendas and strategies regarding human rights and citizenship that move knowledge beyond the current impasse of human rights advocates versus medics. It also exposed the way that tensions regarding gender-related rights claims are present amongst patient-advocates and activists.

Some changes took place during the course of the project; notably a Call for Evidence about sex variations (by UK government) and increased human rights lobbying and media coverage. The project impacted on awareness levels and provided space for networking across and within sectors (medics, intersex people, policy makers and practitioners). It also fostered the development of intersex studies as a new field, including organisation of the pioneering international intersex studies conference.