Intersex people in EU: ashamed and invisible
By Philip Ebels
Mainstream society in Europe is slowly coming to understand sexual minorities - lesbian, gay, bisexual and transgender people. But intersex people in the EU live largely in the dark.
"There is very little knowledge about intersex people ... It is a part of our society that is entirely hidden," Silvan Agius, a researcher at the Brussels-based NGO Ilga-Europe and co-author of a new study on the subject, told EUobserver.
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The study - requested by the European Commission and released on Monday (11 June) - reflects that obscurity.
"It remains unclear whether intersex people are covered by the existing EU anti-discrimination legal framework mainly because EU legislation is silent on the issue," it says.
Most national-level legislation in the EU is similar - laws in Germany and Scotland are the only ones to make explicit mention of intersex people.
It might fall under discrimination on the grounds of gender. But the study adds that "no case of discrimination against intersex people has yet reached the EU Court of Justice to challenge the current understanding of the ground of sex ... which is based on the male/female binary sex model."
Intersex people - according to the study's glossary - are "people who have genetic, hormonal and physical features that are neither exclusively male nor exclusively female, but are typical of both at once or not clearly defined as either."
They used to be called hermaphrodites.
It is unclear how many intersex people live in the Union. But it is estimated that as many as two percent of people worldwide are born with some form of intersexuality. Its features range from anomalies in genitalia to - at a later stage in life - muscle mass, hair distribution or stature.
Agius says that it is still normal practice in Europe to perform surgery on babies "in order to normalise them, to say it crudely." But as adults many of them come to regret the "normalisation" ever happened.
Del LaGrace Volcano - an intersex activist and artist living in Sweden - says on his website that he "escaped" the fate of "thousands of intersex individuals who have had their 'ambiguous' bodies mutilated and disfigured in a misguided attempt at 'normalisation'."
He says that he passes as a male but tries to celebrate his intersexuality: "To my child, I am a mapa [mama plus papa]."
He adds that one of the reasons for the relative obscurity of intersex people is shame: "A lot of intersex people are in hiding ... They self-pathologise. They think they have a deformity."
On the side of society, people do not seem comfortable with the idea of blurring the lines between male and female.
"It is a big shameful secret. We're not taught this in biology. I have met medical doctors who know nothing about it," he adds.
As far as legislation is concerned, LaGrace Volcano says the world's frontrunner is Australia, where government officials do not even ask your sex anymore. "Europe is lagging far behind," he notes.