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. Main Protagonists Medical Practioner (MP) 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
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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
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Activists Advocates Medical Practitioners (MPs) Intersex activists use Varia on specific ‘pa ent’ public facing tactics and associa ons o en use DSD teams appeal to human rights private-facing tac cs and frameworks as they may collaborate directly with generally no longer DSD teams believe in medical self- reform
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Tactics
MPs may work as allies
Intersex Differences on Patient group activists human rights associations framing
Request for legislation
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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 HR Claims need changing in childhood framing medical protocol applied to bodies with variations of sex characteristics Policy
Intersex We need to activists Change in focus on childhood practices! medical practice?
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No unnecessary Framework for interventions Strategy quality healthcare without consent services
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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.
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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
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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 Variations of differences female Terms: Sex of Sex Characteristics Development
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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.
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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
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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.
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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)
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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.
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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
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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.
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Stakeholders and styles of activism
International Intersex Activism Health Advocate Associations
• protests • peer-support • awareness campaigns • ‘patient expert’ • criminalization of non-consensual, • better medical care unnecessary practice
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Intersex Activism and HR lobbying
UN 2004 - NGO statement (Mauro Cabral) International Intersex Activism Appeal to International 2008 CEDAW Criminalization of Human Rights (IMeV and XY-Women non-consensual, Mechanisms Germany) unnecessary practices
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Health advocate associations generally have private facing tactics, and may be founded in direct collaboration with a medical structure.
Positions on Human Rights tactics can be very different.
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Variation groups led by parent centred specific people with VSCs groups groups
1980s AIS groups
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IT, SW, UK groups
In the UK, Italy and Switzerland variation specific patient advocacy groups do not appeal to human rights tactics. Their interview responses ranged from very critical to not-engaged with Human Rights.
Some indicated that Human Rights lobbying (or public facing activism in general) did not fall in their mission statement, but that they might support certain issues that Human Rights statements represented.
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Primary focus is peer-support
I Want to Be Like the majority of AISIA’s people don’t Nature Made Me identify with an intersex condition
2017 AIS-DSD/InterACT/Human Rights Watch Italian AIS association – Not an identity
I see myself as an advocate for those affected as opposed to an activist, we can’t do that (be critical of doctors) but at the same time have always aimed to challenge clinicians
UK AIS association – clinician allies UK CAH association – chronic endocrine care
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Groups that have the most difficultly with Human Rights framing (in particular claims of torture, and harmful practices) and/or a moratorium on unnecessary genital surgery, generally are led by, or are strongly focused on parents.
Examples of parent led groups:
UK parent association want to support all parents (even those who have already chosen surgery).
IT CAH association (only parents) - unaware of HR issues
US CAH association very critical of Human Rights Watch 2017 report
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Human Rights framing is not well received by MPs. Even interviewed MPs who supported intersex rights claims were wary of HR proclamations and against a moratorium on childhood DSD cosmetic surgery.
Whereas I think the IGM kind of claim, they just go ‘not a chance’ [...] If IGM is abuse and torture and mutilation and the medics I think one of the surgeons has said to me absolutely do not see it as that, then where this needs to be a law, if someone tells me the hell do you go?[…] these surgeons are not to do it, I can’t do it, I won’t do it. That’s human beings and they have gone into this interesting […] I went so you just don’t want practice to, you know, they have sworn to to have to make the decision, […] you want […] then accused that they are butchering, someone else to say no it just cuts to the core of what the hell UK MP they’re doing […], its so challenging, and its scary for them, its scary for them. UK MP
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MPs reluctant to support HR tactics
International Best Practice statements refer to International HR proclamations
Growing body of medics who condemn unnecessary childhood cosmetic interventions
Question the utility of a moratorium on childhood genital surgery
Collaborate with patient associations
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A clear example of health advocates being mobilized against human rights tactics can be found in The Response to the Council of Europe Human Rights Commissioner’s Issue Paper on Human Rights and Intersex People, which was co-authored by medical practitioners and health advocates.
Claims:
1. Erroneously informed by LGBTIQ activists
2. Was not informed by health advocates or practitioners
3. Misrepresents current practice
4. That the term intersex people is not widely recognised as appropriate among adults and children having atypical sex development
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Appropriation of intersex issues by LGBT activism is also an area of contention for many intersex activists.
Arguments over terminology can also serve to obscure rights claims surrounding the practices themselves.
More pressing is the claim that International Human Rights Mechanisms (and indirectly intersex activists) misrepresent medical current practice.
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the other thing that Most states (except for Malta) parents refuse to do is permit parents to decide. postpone the operation (IT urologist DSD-Team) Interviews with Italian CAH (Congenital Adrenal Hyperplasia) parent advocates indicate a medical bias towards surgery that persists today even in some centres of excellence, while doctors who collaborate with this group continue to claim parents push for surgery we were told it was always better to sometimes I hear operate early…the about patients [in parent chooses the team meetings] I’ve surgery and the never seen and never problem is resolved heard of (IT CAH ass.) (IT psychologist DSD team)
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There is little data supporting the claim that intersex childhood medical practice has changed.
Interviewed MPs and scientific articles indicate that parents are still not receiving emotional support as first-line interventions in most countries.
Our analysis of UK-NHS data does An Italian urologist also stated that not support the claim that childhood they “perform a large number of intersex surgeries have diminished genitoplasty operations when children are less than a year old… both the clitoral and vaginal plastic surgery in a single operation”
For instance AISIA members Medical publications such as the expressed frustration at being 2016 consensus statement update involved in a genetic database continue to indicate there is a lack of project that did not provide the data to base opinions on promised research on hormone therapy and total body health, stating “they didn’t provide them [the results] …there is no interest” (Claudia - AISIA)
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Shared by 1. Medically unnecessary childhood treatments activists and 2. Communication, including access to medical records patient advocates 3. Life-long health issues (rights claims) 4. Social prejudice
Shared by 5. Data collection activists, patient 6. National review of practice advocates and 7. Patient centred care based on research MPs 8. National guidelines and centres of excellence
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Areas of contestation in Human Rights proclamations
Against appeal to Confusion with Rights and Best International LGBT issues, Interests Human Rights particularly of the child Bodies Trans Parent led versus individual Against led health moratorium on advocate groups unnecessary Contestations genital surgery
Concern regarding criminalization of medical Opposed to Best interests procedures legislation of of the child? medical protocol
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Policy and Intersex Human Rights
Rights of the child Perceived Concerns around Awareness of versus rights of stakeholder regulating medical Human the parent conflict around HR practice Rights Condemnations
Address rights National inquiry into Harmful (cultural) claims practice practices
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EUICIT University of Huddersfield https://research.hud.ac.uk/institutes-centres/ccid/projects/current_projects/intersex-dsd_human_rights/
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