Dan Christian Ghattas, PhD(Outreach and Networking Officer)

What is OII

The Organisation Internationale des Intersexués – OII – is the world’s largest intersex organization with members representing almost all known intersex variations.

OII has affiliates in twenty countries, on six continents, speaking ten languages including Mandarin Chinese and Arabic.

OII does not consider intersex an illness.

OII considers intersex to be anyone who is born with a body that is not considered typical according to the norms in effect for standard male or female.

OII advocates for the de-pathologization of intersex people and for the their human right of bodily integrity and self determination

It is necessary to understand that being an intersex person is not a medical issue.

It is like being male or female.

It is the reality that more than two sexes exist within the human race.

One of the primary human rights breaches against intersex people is the denial of theirexistence outside of the male/female binary sex model.

Therefore intersex infants, children, teenager and adults are subjected to ‘normalizing’ surgical operations which aim to alter reproductive organs and genitalia towards a more female or male appearance.

In many European countries they take place without adequate informed consent by the intersex persons.

Still very few studies about the life situation of intersex people exist.

In Germany three empirical studies have been conducted so far:

Hamburg 2007Lübeck 2008German Ethics Council 2012

The studies of Hamburg and Lübeck were both performed by a team of psychological and medical practitioners.

None of the three questionnaires had been developed with participation of intersex people.

The studies of Lübeck and Hamburg both depict a significant lack of contentment of the participating intersex persons in regard to the surgeries they had undergone and the impact those had on their life.

The study of Lübeck (2008) included 439 intersex persons of all ages from Germany, Austria and Switzerland. 81% had been subjected to surgeries due to their intersex diagnose.

Almost 50% of the participating intersex adults of the study of Lübeck reported psychological problems (Netzwerk Intersexualität 2008, 24) and a variety of problems related to their sex life and sexuality (Netzwerk Intersexualität 2008, 30f.).

2/3 of the adult participants draw a connection between their sexual problems and the medical and surgical treatment they had been subjected to (Netzwerk Intersexualität 2008, 31).

Participating children reported significant disturbances, especially within their family life and physical well-being (Netzwerk Intersexualität 2008, 21) – those being the areas that the medical and surgical treatment was supposed to stabilize.

Though this numbers are alarming and the statements are quite clear about surgeries and medical treatment being a cause for the stated problems the research groups still hesitated to draw the obvious conclusions from the presented data.

They admitted that the complications following the surgeries were still quite high („die Komplikationen infolge von Operationen trotz verbesserter Operationstechniken „immer noch recht hoch“ liegen,

Netzwerk Intersexualität 2008, 37) but opted for further studies to research the reasons for the stated psychological and sexual problems of the test persons (Netzwerk Intersexualität 2008,

39).

The studies of Lübeck and Hamburg - though they are commendable in being the first ones producing statistical data - show that studies conducted by the medical establishment are in danger of reproducing the hegemonic medical discourse which opts for surgeries as the solution.

Furthermore such studies tend to only address intersex people who are willing to get in touch with the medical establishment. As self-help groups report, intersex people who have been traumatized by medical treatment won‘t necessarily be able to participate in such a survey, thus not adding their experience to the data.

In 2010, the German government commissioned an expert position by the German Ethics Council on the living situations and challenges faced by intersex people.

The position was developed on input by•public hearings with experts and concerned persons (June 2010 and June 2011)•an online questionnaire on the situation of intersex people (June 2011); and •an online consultation (June-July 2011);

As I already said intersex people did not participate in the development of the questionnaire thus again not being able to include questions based on their life experience.

The paper presented by the German Ethics Council in February 2012 is progressive in terms of emphatic recommendations concerning

-the need of legal representation of the fact that there are more sexes than men and women within official documents (e.g. birth certificates, identity papers)-the need of governmental financial support of intersex organisations and (peer- )counseling for intersex persons and their parents

(Deutscher Ethikrat 2012, 86-89)

Unfortunately the paper is a severe backlash when it comes to ensure the right of bodily integrity and self determination of intersex infants, children and teenagers.

Though the Ethics Council first admits that „all medical treatments have a more or less severe impact on the core area of a persons identity and corporal integrity“ („alle Therapieformen [zeigen] mehr oder minder einschneidende Wirkungen auf den Kernbereich der personalen Identität und auf die körperliche Unversehrtheit“,

Deutscher Ethikrat 2012, 30).

the paper then abstains from warning against medical intervention for intersex people with so-called CAH (Deutscher Ethikrat 2012, 33) - this group being one most often subjected to surgical alteration in infancy and childhood.

The reason for this abstention is, according to the Ethics Council, that this group of intersex people is supposed to mostly identify as female and thus to profit from the conducted feminisation surgeries.

Here the Ethics Council unexpectedly follows the medical discourse - although the online questionnaire showed that 20% of the participating intersex persons with CAH did not vote for sex assigning surgeries at an non-consensual age and 14% did not identify as female or male (Deutscher Ethikrat 2012, 39).

Considering the status quo we therefore recommend to the European Parliament

•that Intersex people should be explicitly covered under EU anti-discriminiation legislation with explicit reference to legal recognition and the right of bodily integrity and self determination.

•that the EU should closely monitor the implementation of the demands in terms of anti-discrimination legislation, including the legal recognition of the fact that there are more sexes than men and women (e.g. within official documents like birth certificates, identity papers).

• the EU should encourage laws prohibiting sex assigning surgeries on babies and establish a legal frame which ensures a fully informed consent of the intersex individual as compulsory requirement in all medical practices and protocols . It is especially crucial that Member States respect the human rights of intersex babies/children.

• Members States should ensure the legal implementation of those demands and facilitate the education of parents, medical practitioners, teachers, administrations and the society in general on intersex issues to make them aware of the existence of intersex persons.

Thank you !