Dan Christian Ghattas , PhD ( Outreach and Networking Officer)

1. Dan Christian Ghattas, PhD (Outreachand Networking Officer)

2. What is OII The OrganisationInternationale 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.

3. 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

4. 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.

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

6. Therefore intersex infants, children, teenager and adults are subjected to ‘normalizing’ surgical operations which aim to alter reproductiveorgansandgenitaliatowards a morefemaleor male appearance. In many European countries they take place without adequate informed consent by the intersex persons.

7. Still veryfewstudiesaboutthelifesituationofintersexpeopleexist. In Germany threeempiricalstudieshavebeenconducted so far: Hamburg 2007 Lübeck 2008 German Ethics Council 2012 The studiesof Hamburg and Lübeck werebothperformedby a teamofpsychologicalandmedicalpractitioners. None ofthethreequestionnaireshadbeendevelopedwithparticipationofintersexpeople.

8. The studiesof Lübeck and Hamburg bothdepict a significant lack ofcontentmentoftheparticipatingintersexpersons in regardtothesurgeriestheyhadundergoneandtheimpactthosehad on theirlife. The studyof Lübeck (2008) included 439 intersexpersonsof all agesfrom Germany, Austria andSwitzerland. 81% hadbeensubjectedtosurgeries due totheirintersexdiagnose.

9. Almost 50% oftheparticipatingintersexadultsofthestudyof Lübeck reportedpsychologicalproblems(Netzwerk Intersexualität 2008, 24) and a varietyofproblemsrelatedtotheirsexlifeandsexuality(Netzwerk Intersexualität 2008, 30f.). 2/3 ofthe adult participantsdraw a connectionbetweentheir sexual problemsandthemedicalandsurgicaltreatmenttheyhadbeensubjectedto(Netzwerk Intersexualität 2008, 31). Participatingchildrenreportedsignificantdisturbances, especiallywithintheirfamilylifeandphysical well-being(Netzwerk Intersexualität 2008, 21) – thosebeingtheareasthatthemedicalandsurgicaltreatment was supposedtostabilize.

10. Thoughthisnumbersarealarmingandthestatementsarequiteclearaboutsurgeriesandmedicaltreatmentbeing a causeforthestatedproblemstheresearchgroups still hesitatedtodrawtheobviousconclusionsfromthepresenteddata. Theyadmittedthatthecomplicationsfollowingthesurgerieswere still quite high („die Komplikationen infolge von Operationen trotz verbesserter Operationstechniken „immer noch recht hoch“ liegen, Netzwerk Intersexualität 2008, 37) but optedforfurtherstudiestoresearchthereasonsforthestatedpsychologicaland sexual problemsofthetestpersons(Netzwerk Intersexualität 2008, 39).

11. The studiesof Lübeck and Hamburg - thoughtheyarecommendable in beingthefirstonesproducingstatisticaldata - showthatstudiesconductedbythemedicalestablishmentare in dangerofreproducingthehegemonicmedicaldiscoursewhichoptsforsurgeriesasthesolution. Furthermore such studiestendtoonlyaddressintersexpeoplewhoarewillingtoget in touchwiththemedicalestablishment. As self-helpgroupsreport, intersexpeoplewhohavebeentraumatizedbymedicaltreatmentwon‘tnecessarilybeabletoparticipate in such a survey, thus not addingtheirexperiencetothedata.

12. 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 alreadysaidintersexpeopledid not participate in thedevelopmentofthequestionnairethusagain not beingabletoincludequestionsbased on theirlifeexperience.

13. The paper presented by the German Ethics Council in February 2012 is progressive in terms of emphatic recommendations concerning • the need of legal representationofthefactthattherearemoresexesthanmenandwomenwithinofficialdocuments (e.g. birthcertificates, identitypapers) • theneedofgovernmentalfinancialsupportofintersexorganisationsand (peer- )counseling for intersex persons and their parents • (Deutscher Ethikrat 2012, 86-89)

14. Unfortunatelythepaperisa severe backlash when it comes to ensure the right of bodily integrity and self determinationofintersexinfants, childrenandteenagers. ThoughtheEthics Council firstadmitsthat „all medicaltreatmentshave a moreorlesssevereimpact on thecoreareaof a personsidentityandcorporalintegrity“ („alle Therapieformen [zeigen] mehr oder minder einschneidende Wirkungen auf den Kernbereich der personalen Identität und auf die körperliche Unversehrtheit“, Deutscher Ethikrat 2012, 30).

15. thepaperthenabstainsfromwarningagainstmedicalinterventionforintersexpeoplewith so-called CAH (Deutscher Ethikrat 2012, 33) - thisgroupbeingonemostoftensubjectedtosurgicalalteration in infancyandchildhood. The reasonforthisabstentionis, accordingtotheEthics Council, thatthisgroupofintersexpeopleissupposedtomostlyidentifyasfemaleandthustoprofitfromtheconductedfeminisationsurgeries. HeretheEthics Council unexpectedlyfollowsthemedicaldiscourse - althoughthe online questionnaireshowedthat 20% oftheparticipatingintersexpersonswith CAH did not voteforsexassigningsurgeriesat an non-consensualageand 14% did not identifyasfemaleor male (Deutscher Ethikrat 2012, 39).

16. 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).

17. 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.

18. Thankyou!