Coding Gender: ICD-11 Revisions in SA

Currently, I am attending a meeting regarding the ICD-11 revisions of certain F codes – specifically those related to sexuality and gender; the ICD is the International Classification of Diseases that is compiled by the World Health Organization (WHO). Currently, the WHO is revising the ICD from its tenth version to version eleven, as the ICD-10 was approved in 1990 – that’s more than two decades ago. The entire process is a long and extremely bureaucratic one, full of draft proposals that are “not for distribution” and the like. Specifically my participation was regarding to the F64 block, which in the ICD-10 are labeled as “Gender Identity Disorders” and, it being located in the chapter of mental and behavioural disorders.

The WHO has decided to field test revised codings put forward by the working group that has proposed them, and during today and tomorrow a clinical protocol for this is being developed by a group of South African medical practitioners; you know, because doctors know best *cough, cough*. Anyway, the field test will take place in five countries, of which South Africa is one, and South African medical practitioners who work in the specific fields of sexology and gender are asked to contribute to the protocol development. Concurrently, Eszter Kismodi who used to work for WHO but is now a consultant has put forward the need for an assessment of the policy and legal environment concerning transgender related health care provision. Unfortunately, bureaucracy struck, and the initial idea might not be feasible anymore. WHO as an agency is overseen by the World Health Assembly, a collection of all ministers of health of all 194 member states, and countries such as Russia and others tend to be a bit allergic to any human rights language – especially related to gender and sexuality.

For the legal and policy review, Gender DynamiX, TIA, Women’s Legal Centre, and several other entities and activists are participating; it is disturbing that this is the only part of the meeting where human rights NGOs that advocate for the people ultimately affected by ICD-11 codings are properly included, unlike within the clinical part. The argument is always that clinical expertise is needed, i.e. “the doctor knows best”, but experiences related by transgender persons in South Africa tell a different story: it seems that for the most part “the doctor thinks they know best”. Patients’ rights are important across the board, but with transgender persons – who are extremely stigmatised in broader society – this is even more important; having “MD” behind your name doesn’t automatically purge existing stereotypes, attitudes, etc. from you – some of which simply are perpetuated without thinking about them, neither does it mean that your opinion is by definition beneficial to the communities you serve.

It is in such a complex context that new codings are being tested, codings which supposedly try to avoid pathologisation of transgender persons, while not endangering any potential access to gender affirming medical care. It is a tight rope, and it doesn’t always make sense. In an ideal situation, one would have an informed consent model and direct access to medical care that is required for any illness or health condition; a health condition doesn’t necessarily mean it is a disorder, simply referring to the need for health care provisions (think abortions, contraception, vaccination, etc. that don’t function on a diagnoses.) The practical reality – with political and bureaucracy, with economical considerations, with cultural and religious attitudes, with prevailing stigma of anything deemed to be “non-conforming” – means that this is a far fetched utopia at this stage. The discussions between transgender activists themselves tend to be around striking a balance between the idealistic and the pragmatic. In terms of WHO and the medical establishment, merely being seen as people who have clear agency regarding their bodies and their health seems the be the tip of the proverbial iceberg, larger and more dangerous than the one that put the Titanic at the bottom of th Atlantic.


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