Dr Daniela Crocetti, Prof Surya Monro, Dr Tray Yeadon-Lee, with Zwischengeschlecht/StopIGM This project has received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Sklodowska-Curie grant agreement No 703352.
Medical Practioner (MP) Main Protagonists positions regarding Overview human rights tactics EUICIT The Council of Europe Evolution of Right Claims Current practice? Rights Claims Shared aims reflected in Human Rights proclamations Human Rights Contestations Activism/Advocacy Conclusions Activism Health Advocate Associations Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 2
seeing how these rights claims are mobilized and translated into human looking at the rights rights framing, or not claims put forth by both public facing ...and then piecing intersex activists and together ideas on how private facing patient policy can act on these associations seemingly different agendas put forward by intersex activists and patient group advocates trying to sort out what has alike actually changed in childhood medical practice besides rhetoric, and what remains stagnant Dedicated to Arianna co-founder of AISIA who, thanks to her deep humanity, was a tireless and unforgettable agent of change www.aisia.org Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 3
Activists Advocates Medical Practitioners (MPs) Varia%on ¡specific ¡‘pa%ent’ ¡ Intersex activists use ¡ associa%ons ¡o1en ¡use ¡ DSD ¡teams ¡ public facing tactics and private-‑facing ¡tac%cs ¡and ¡ appeal to human rights may ¡collaborate ¡directly ¡with ¡ frameworks as they DSD ¡teams ¡ generally no longer believe in medical self- reform Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 4
Tactics MPs may work as allies Differences on Intersex Patient group human rights activists associations framing Request for legislation Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 5
Health In synthesis: advocate by focusing on the rights claims associations themselves, as reflected in human rights framing’s focus on practices, policy Right makers can move forward and address the numerous issues that Claims HR need changing in childhood framing medical protocol applied to bodies with variations of sex characteristics Policy We need to Intersex focus on activists Change in practices! childhood medical practice? Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 6
No unnecessary Framework for interventions quality healthcare Strategy without consent services Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 7
This simply means not performing unnecessary interventions on those who cannot consent, but also providing a framework for quality healthcare and services where it is desired. The differences in tactics are reflections on strategic priorities, such as peer support as opposed to public education, for instance, however, patient group tactics generally stem from similar rights requests to intersex activists framed by specific sex variation experience. Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 8
EUICIT investigated perspectives on Human Rights approaches to Intersex, VSC, DSD and dsd in Europe (specifically focusing on Italy, Switzerland and the UK), mapping the agendas, actions and results of the diverse Intersex activists and health advocates, including the views of clinicians and policy makers working in this area. Identity/role of IT SW UK Total number interviewee 15 6 19 40 Intersex 6 2 7 15 Activists Patient 3 (included one 0 5 8 + IT focus group advocates focus group) Policy 1 2 6 9 And related Medics and 5 2 1 8 Healthcare professionals Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 9
1980s 1990s 2000s Intersex rights ISNA (Intersex Society of International Human Rights mobilization began North America) is devoted Bodies begin to address in the form of variations to systemic change to end Intersex specific support groups shame, secrecy, and unwanted genital surgeries FRA definition Variations in a person’s bodily characteristics that do not match strict medical Intersex Disorders or definitions of male or differences Variations of female of Sex Sex Terms: Development Characteristics Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 10
Intersex Genital Mutilation (IGM) The birth of the Intersex Society of North America (ISNA) in the 1990s inaugurated public facing tactics and initial human rights framing with the introduction of the term ‘Intersex Genital Mutilation’ (IGM). This new form of activism sought to end ‘shame, secrecy and unwanted genital surgeries’, making ‘normalization’ surgical procedures their first line of criticism. Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 11
Intersex activists and health advocates have made numerous rights claims that generally concern medical practices in childhood, there is also concern for the inadequacy of adult care. • Normalizing procedures without fully informed consent • Stigmatizing, coercive, and/or deceptive medical communication • Invasive medical exams and photography • Selective termination of intersex foetuses (and infanticide) • Gender-normalising prenatal interventions Lack of: • Long term overall health research • Adult services • Psychological and peer support in medical protocol Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 12
International Human Right Mechanisms increasingly contend that genital surgery is not necessary for gender assignment, and that atypical genitals are not in themselves a health issue. There are only very few situations where surgery is necessary for medical reasons, such as to create an opening for urine to exit the body. Specific aspects of Intersex medical treatment are increasingly being addressed as serious Human Rights abuses. Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 13
International Human Rights proclamations Among recent important proclamations are those of: • UN Committees and Agencies • Convention against Torture and Other Cruel, Inhuman or Degrading • regional Human Rights bodies Treatment or Punishment (CAT) (2011). • Council of Europe • Special Rapporteur on Torture (SRT), • European parliament • Juan E. Méndez (2013). • Australian parliament, • UN Interagency statement on involuntary sterilization (2014). • National ethics committees • Committee on the Rights of the Child (CRC) (2015). • (Italian, German, and Swiss) • EU Fundamental Rights Agency (FRA) (2015). • Three ex-US Surgeon Generals • United Nations High Commissioner for Human Rights (2015; 2017). • (Palm Center report) • The Yogyakarta Principles +ten (2017) • Human Right’s Watch • European Parliament resolution (2017; 2019) • Amnesty International • European Parliament resolution on the rights of intersex people 2018/2878(RSP) Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 14
International Human Rights proclamations In February of 2019 the European parliament approved a resolution on the rights of intersex people • urging member states to address the issue • condemning sex normalizing treatments • and welcoming laws that prohibit surgery as in Malta and Portugal. It should be noted that the Portuguese law actually still allows legal guardians to decide for children, and the Maltese law does not criminalize the act of taking children to the UK, for example,for unnecessary cosmetic surgery. Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 15
1. Harmful (cultural) 2. Prohibition of 3. Integrity of the 4. Access to justice practices torture and inhuman person or degrading treatment Human 5. Involuntary 6. Violence against 7. Right to life 8. Coercive Rights medical children sterilization experimentation framing 9. Right to health 10. Rights of the 11. Anti-discrimination Child laws that include sex characteristics Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 16
Human Rights framing StopIGM (among other international intersex activists) recognizes Harmful Practices as the most effective human rights framework capable of prohibiting IGM practices. Framing unnecessary Intersex medical practices as harmful cultural practices requires policy bodies to address the central issue of whether these are practices that parents have the right to consent to. Rhetoric of change and perspectives on strategic appeal to International Human Rights Mechanisms 17
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