Thursday, October 29, 2015

Intersex Issues in the International Classification of Diseases (ICD)



From discussions at the Third International Intersex Forum in Malta, December 2013, a meeting of activists and experts took place in Geneva, in September 2014, on revision and reform of the International Classification of Diseases (ICD) by the World Health Organization (WHO). The meeting aimed to develop a collective analysis of intersex issues in the ICD, identify connections between diagnoses and treatments, and to highlight human rights issues related to current biomedical management practices.

The September 2014 meeting was organised by the GATE International Initiative on the ICD Reform Process, in partnership with ILGA. It was planned and coordinated by Mauro Cabral (GATE) and facilitated by Ruth Baldaccino (ILGA). Participants in the meeting were Janik Bastien-Charlebois (Canada); Morgan Carpenter (Australia); Dan Ghattas (Germany); Holly Greenberry (UK); Natasha Jimenez (Costa Rica); Ev Blaine Matthigack (Germany); Nthabiseng Mokoena (South Africa); Daniela Truffer (Switzerland) and Markus Bauer (Switzerland). The meeting was also attended by Doris Chou (WHO); Sara Cotter (WHO); André Du Plessis (ILGA); Robert Jakob (WHO); Rajat Khosla (WHO); Eszter Kismödi (Human Rights lawyer); Renato Sabadini (ILGA); and Michael van Gelderen (OHCHR).

Following the meeting, this report was submitted in November 2014 to the WHO Topic Advisory Group for Genitourinary, Reproductive & Maternal Health (GURM TAG) for the ICD revision. The submission addresses specific concerns related to intersex issues in the ICD reform process. It was edited by Morgan Carpenter and Mauro Cabral, with substantive contributions from the intersex activists, experts and allies convened by GATE.

The report establishes a set of grounding principles, and provides an overview of terminological and historical issues, before an analysis of broad and specific issues with the ICD framework and diagnoses. The submission also details human rights concerns and presents an epistemological analysis. The submission is intended as an invitation for a critical dialogue between intersex activists and the World Health Organization.

Intersex issues and the International Classification of Diseases 

The ICD revision and reform process has a key relevance for the intersex movement. Diagnostic categories play a central role in expressing scientific understandings, establishing medical approaches, informing clinical protocols, defining surgical, hormonal and other treatments. Diagnostic categories defining intersex bodies reify differences between stereotypical female and male bodies on the one hand, considered to be healthy, and bodies that vary from female and male standards on the other hand, considered to be “disordered”, or “abnormal”. Current classifications therefore contribute to stigma and discrimination against intersex people; they endow appropriateness to medical attempts to “fix” or “normalize” intersex bodies through surgical and hormonal means. 

They play a direct role in determining how intersex bodies are treated in society at large. Everywhere in the world, people born with intersex traits are subjected to “normalizing” procedures, including clitoridectomies, labioplasties, vaginoplasties, gonadectomies, hypospadias “repair”, and treatment with steroids or sex hormones. Many of these procedures are performed during infancy and early childhood when intersex individuals cannot provide their informed consent. Intersex babies, infants, children and adolescents are also subjected to related practices in medical settings, such as continued exposure. 

In different parts of the world, treatments also include socio-legal measures, including a lack of birth certificates. Most of these treatments have lifelong consequences: they produce sterility, genital insensitivity and impaired sexual function, chronic pain, chronic bleeding, and chronic infections, post-surgical depression, and trauma (in many cases associated with the experience of rape), massive internal and external scarring, metabolic imbalances. These procedures have been internationally denounced as institutionalized forms of genital mutilation. 

They reproduce and reinforce the cultural sense of intersex bodies as disordered and shameful; they produce coercive social environments. The ICD reform process would benefit from a in-depth revision of assumptions and conceptions around sex, and the connection between clinical language and treatments. In our review of both ICD-10 and ICD-11 (Beta), it is notable that the term intersex is not explicitly included; however, intersex-related diagnoses are contained in both versions, with many common characteristics: ! Both ICD versions share the same implicit and normative conception of sex as binary, rendering all bodies that vary from female or male standards as pathological by definition. ! While heterogeneous in their application, both ICD versions share the same negative definitional approach to intersex bodies, employing pathologizing and stigmatizing diagnostic descriptions such as “disorder”, “disease”, “malformation”, “pathologic”, “defect”, and “abnormality”. Multiple such terms may be employed in the same diagnosis. Both ICD versions combine different diagnostic languages (such as, ‘hermaphroditism’ and ‘DSD’).

Download the Document HERE 



Peace & tolerance

H

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