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How to advance the human rights of intersex people: lessons learned from Finland

Speech
Strasbourg 30/06/2020
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Webinar organised by the Permanent Representation of Finland to the Council of Europe
and the Council of Europe Sexual Orientation and Gender Identity Unit

I would like to start with a heartfelt thank you to Finland for taking the initiative of this webinar and for its expressed commitment to help move things forward for intersex people, both in Finland and across the Council of Europe member states.

My office was one of the front runners among international institutions in helping to bring to light the situation of intersex people in Europe. In 2015, it published a ground-breaking report, drawn up on the basis of consultations with intersex activists, experts and government representatives.

This report was first and foremost an important educational tool. Indeed, the very existence and the human rights situation of intersex persons are not well-known in Europe.

The report highlighted some of the key human rights challenges faced by intersex people. I am particularly troubled by the stories of intersex babies and children who are routinely subjected to medically unnecessary sex “normalising” surgeries -- without their informed consent -- to make them fit the societal expectations of male and female bodies. There are profound negative impacts of these often irreversible procedures, including misgendering children, permanent infertility, incontinence, and loss of sexual sensation, sometimes causing life-long pain and psychological suffering. Some intersex people experience these treatments as nothing less than torture.

Intersex children and adults should be the only ones who decide whether they want to modify their bodies, on the basis of comprehensive, objective, non-discriminatory information.

Five years have passed since my office’s report, and despite the tireless work of intersex activists and the further mobilisation of international actors, such as the Parliamentary Assembly of the Council of Europe, the European Parliament, UN bodies, and most recently the European Commission against Racism and Intolerance, progress has been too slow.

In its 2020 survey of LGBTI lived-experiences, the EU Fundamental Rights Agency included for the first time intersex people from EU member states, North Macedonia and Serbia. It found that 62% of respondents went through medical treatment without consent; 34% experienced discrimination; 33% reported bullying and violence, and 19% faced difficulties with their civil status. Only two countries (Malta and Portugal) in Europe have prohibited non-medically necessary surgeries without informed consent. Last year, I regretted that no progress was made towards the depathologisation of intersex people in the new World Health Organisation International Classification of Diseases 11.

I met with intersex activists, including at ILGA-Europe’s annual meeting last year, and they stressed to me that the visibility of intersex people continues to be far too low. The lack of knowledge and training of medical professionals on intersex issues remains pervasive.

I wanted to be with you today to deliver a simple message: there is an urgent need to protect the human rights of intersex people and Europe has the potential, and thus, in my view, the responsibility to be leading the way. Malta’s legislation, for example, is considered a model. 

All governments in Europe should review their current legislation and medical practice to identify gaps in the protection of intersex people.

The first step is of course to collect data and understand the experiences of intersex people. In this regard, I commend Finland on undertaking the study that will be presented later at this seminar.

National authorities must also raise awareness about intersex persons and abandon pathologising approaches, in order to foster full acceptance and recognition.

I call on states to consult with and support the local intersex civil society organisations as they develop their policy approaches. States should prohibit medically unnecessary sex-normalising surgeries without informed consent and ensure that sex characteristics are listed as prohibited grounds in their anti-discrimination legislation.

I also believe that peer exchange between countries is essential – I understand that several states are currently considering taking steps in this field and they would benefit from interacting and sharing information. Now is a good time to join forces to achieve real change for intersex people.

I wish you a fruitful webinar. You can count on my ongoing support in defending the human rights of intersex people in Europe.