“It Is Still a Big Taboo”

For intersex people and their concerns, 2015 was a very important year because it saw intersex issues being thrust more and more into the spotlight of European and international policy making. Caroline Ausserer talks about these developments with Dan Christian Ghattas, co-chair of OII Europe, the umbrella organization of European human rights-based intersex NGOs.

Caroline Ausserer: The year 2015 saw intersex issues figure more prominently on the political agenda, bringing in its wake a shift in attitudes. Looking back at the events of the past year, what would you say the high points were?   

Dan Christian Ghattas: The most important high point was the new law passed in Malta in April 2015, the Gender Identity, Gender Expression and Sex Characteristics Act. It is the first law in the world that makes it a punishable offense to carry out medical and surgical interventions on intersex minors without informed consent provided that these interventions – because they do not constitute life-saving procedures – can be deferred. We underlined the significance of this law in our press release, and I recently had the opportunity to once again point out the importance of this law for Germany at a symposium hosted by the German Federal Ministry for Family Affairs, Senior Citizens, Women and Youth (BMFSFJ). But a number of other very important things also happened in 2015. OII Germany, for example, organized a thematic briefing for the UN Committee on the Rights of Persons with Disabilities (CRPD) as part of its Universal Periodic Review of Germany and also gave the Committee an introduction to the topic of intersex. We were very pleased that the Committee in its concluding observations called on the German government to finally take the measures outlined in the recommendations made by the Committee against Torture (CAT) concerning the protection of the human rights of intersex people in Germany. OII Europe subsequently drafted a statement on intersex and disability that was very well-received internationally. Germany is now called upon to implement the UN’s recommendations. Another high point was the publication in May of two major documents that were presented to the public at the IDAHO Forum in Montenegro: an issue paper of the Council of Europe Commissioner for Human Rights and an initial study on the legal situation of intersex people by the European Union Agency for Fundamental Rights (FRA).  

What is the significance of these studies?

The issue paper “Human rights and intersex people” published by the Council of Europe Commissioner for Human Rights – to which OII Europe and national intersex NGOs contributed in an advisory capacity – outlines the current state of affairs, identifies obstacles to the enjoyment of human rights, discloses rights violations, and offers recommendations that states should take to heart. The study “The fundamental rights situation of intersex people,” conducted by the Agency for Fundamental Rights, examines the situation of intersex people from a civil status perspective and investigates their inclusion in anti-discrimination legislation. The findings, in a nutshell, are sobering. The FRA also looks into an enormously important issue – the actual number of interventions. Among other conclusions, it finds that it is practically impossible in Europe to obtain statistical data on the subject, particularly data on medical interventions. NGOs have been making precisely this complaint for years, and I also aired this grievance in the study “Human Rights between the Sexes – A preliminary study on the life situations of inter* individuals,” which I did for the Heinrich Böll Foundation in 2013. Now, it has finally been officially verified by an EU agency.        

In Strasbourg in September, both papers were presented again at a seminar event in which OII Europe took part. Parallel to this second presentation, we had very fruitful meetings with decision makers from the European Parliament and the Council of Europe and noticed a growing awareness that, first of all, intersex people exist, and second, that unconsented interventions on intersex people are being seen more and more as a human rights issue. Support for the view that intersex is solely a medical issue is increasingly diminishing. The Maltese law, the issue paper of the Commissioner for Human Rights, and the FRA study are the yardsticks against which future governments must measure themselves.          

What were some other notable events in 2015?

A UN expert meeting on intersex and human rights was held in September. I was invited as a representative of OII Europe as were other intersex experts from five continents. Its aim was to inform UN experts about the situation of intersex people around the world. Following the meeting we intersex experts hosted a public side event on the human rights of intersex people as part of the 30th session of the UN Human Rights Council. It is important to mention that the UN High Commissioner for Human Rights highlighted the situation of intersex people in his opening remarks for this very session and also opened the expert meeting. This sends a wonderful signal that human rights violations against intersex people have moved to the center of human rights discourse. Another high point in Europe was the second European Intersex Meeting, which was held in Athens in late October prior to ILGA-Europe’s annual conference. In November, a further highlight took place in Germany, namely, the BMFSFJ’s symposium on consultation support for intersex people and their family members. Plus, I just returned from an Inter* Conference in Vienna

There is a lot happening everywhere: at the international, European, and national levels. The developments at the international and European level ripple back to the countries while the experiences of the individual countries find their way into European and international advocacy work. This dynamic is very important.

OII Europe recently became a non-profit NGO. How did this come about?

OII Europe was founded as the European network of national OIIs on Human Rights Day, December 10, during the 2012 ILGA World Conference in Stockholm. Individual national NGOs, including OII Germany, had been working intensively on the issue since 2009, and we wanted to connect our efforts. This year, on September 25, 2015, we registered OII Europe here in Berlin as a non-profit association under German law.

How do you work and how is OII Europe financed?

Since 2009, when we began working at the European level, we have received support from ILGA-Europe, which TGEU put us into contact with. All of this would not have been possible without ILGA-Europe’s contacts, networks, and travel grants. We all continue to work on a volunteer basis and are pushing our health to the limit. In 2015, the US-based Astraea Lesbian Foundation for Justice established the Intersex Human Rights Fund. This fund support 29 projects around the world with a total of 187,000 US dollars; the maximum amount of funding per project is 10,000 US dollars. We at OII Europe receive support for our web project European Intersex Visibility Works, but this, of course, does not cover staff costs or the costs that arise from our political advocacy work. The project is extremely important to us because it addresses one of the challenges that we constantly face in Europe: the multiplicity of languages and the lack of depathologizing information on intersexuality in many languages. The web platform will include audio and video clips from intersex people as well as translations of important human rights texts on intersex. The aim is to create a platform that enables people, no matter where they are, to inform themselves about intersexuality from a human rights perspective. The platform is slated to go online next year.

What are the possible dangers if OII Europe continues to lack funding?

Our personal lives, our financial security and our health have so far taken a back seat to our work as activists. That we receive funding – OII Europe as well as the national intersex NGOs – is a major wish of us all, because without funding it will be impossible to carry out our projects and to continue our work. Working without a solid financial basis poses huge health risks. Many intersex people are still living under a cloak of invisibility, and building networks is a lengthy process. Since intersex people continue to be subjected to discrimination after “coming out,” deciding to be publicly visible is a very conscious choice. Because once you have started, there is no turning back, and it can have negative consequences such as losing your job, which has recently happened again. It is still a big taboo. What’s more, going public requires a whole other step: the first step is to recognize one’s own internalized pathologization and to free oneself from it. That is not an easy thing to do. Although the movement is constantly growing, there are lots of barriers, including some related to interventions, that prevent many people from joining in.

What are the priorities for 2016?

We will continue to pursue the possibilities that opened up in 2015. This means continuing our work at the EU, Council of Europe, and UN levels. Another priority is, as already mentioned, the search for funding. We also plan to get in touch with other groups that are subject to similar human rights violations. So far we have cooperated mainly with LGBTI organizations. If our resources permit us to do so, we want to establish closer ties in 2016 with the deaf community, whose members face a very similar pathologization. Initial talks already took place in 2013 and 2014 at the Douarnenez Film Festival, which focuses on cultural minorities and is held in France’s Breton region. The festival has been in close contact with OII Francophonie for several years and has now made intersex a major emphasis in its program. The deaf community has also been active there for several years, for example, with the program The World of Deaf People.

If you had one wish, what would it be?

I wish to see a global society in which the existence of more than two biological genders and identities is celebrated. That way, unconsented interventions would no longer be an issue and thus an absolute no-go. At the same time, it must be made clear that even when we put an end to the interventions, a large part of the discrimination against intersex people will remain as long as they are perceived to be ill or genderless or “freaks.” Our goal must be to create a society in which the existence of intersex people is just as common and natural as that of blue-eyed people.

Thank you for talking with me.