Positive response and constructive debate at the HOOU: Successful intersex symposium at UKE

The symposium “Intersex Controversies” on 22 November 2017 was the second symposium hosted by the HOOU Intersex-Kontrovers project. The response was tremendous and the ballroom in Erika-Haus at the UKE in Hamburg was fully booked. Prof. Peer Briken, Director of the Institute for Sex Research and Forensic Psychiatry at the UKE, opened the event.The initiator, Dr Katinka Schweizer, was delighted that so many people accepted the invitation. She introduced the host project along with all the guests, and moderated throughout the afternoon.

Lived-experience expertise and art – opening our eyes and expanding our field of vision

Lucie Veith paid tribute to the changing times In the past, lived-experience experts were at best tolerated at events like this. Today they are invited to deliver the welcome address. Social psychologist Prof. Peter Hegarty presented new research results on knowledge and attitudes towards intersex from England and the USA. Prof. Hertha Richter-Appelt explained the new AWMF guidelines (2016) and provided insights into the many years of negotiation involved.

The artist Fabian Vogler reported on his sculptural work on the theme of intersex. He introduced the art book project Die Schönheiten des Geschlecht. Intersex im Dialog (On the beauty of gender: Intersex in dialogue), which will be published in spring 2018. He brought along five bronze sculptures to put on display especially for the event, adding another dimension of splendour to the banqueting hall. They were a clear testament to the artist’s joy that gender transcends mere man and woman.

Legal channels, criticism of operations and tips for hospitals

The performance artist and photographer Del LaGrace Volcano called upon society to finally put an end to early, unnecessary “gender-normalising” medical interventions so that children born intersex can develop a worry-free relationship with their own bodies.

It was both a particular pleasure and an honour to have jurist Prof. Konstanze Plett make a brief statement on the ruling of the Federal Constitutional Court regarding the third gender option. Plett was co-author of the constitutional complaint on which the ruling was based. She gave an outlook for 2018 and the practical advice that applications for entry in the register under the third gender marker can already be submitted today – even if these applications will not be ruled upon until enactment of the law at the end of 2018.

Three parent representatives, the doctors Prof. Margit Fisch and Dr. Esther Schulz, and the ethicist Dr. Katharina Woellert also took part in the final panel discussion. Many of the controversies could only be touched upon – for example, the use of medical language such as “anomalies” or “deviations” instead of “variations”, the classification and dubious necessity of genital surgery for adrenogenital syndrome (AGS) and hypospadias – but simply having a forum for this is important and unfortunately very rare. It was impressive to hear, through accounts of everyday life of families with intersex children, that it is quite possible and “undramatic” to deal openly with intersex. The parents reported on both the good and the difficult experiences with their own environment, on the medical profession, and on the lack of counselling at the very beginning. Small gestures were often helpful: “… the doctor congratulated me on the birth of my healthy child, and determining the child’s sex, which was not yet certain, took a back seat.”

This parental wish from the panel discussion could have wide-reaching consequences: “Competence centres and DSD centres should advertise that they ‘do not perform surgery’ – if there is no vital or functional need. Their websites could state: ‘We do not carry out any irreversible, medically unnecessary interventions on your child in our establishment without your personal consent!'” – a way to promote information that could serve as a model!

The evaluation revealed great satisfaction among the participants, especially with the choice of topics, the variety of perspectives, the interdisciplinarity and the openness, as well as enthusiasm about the integration of art and lived-experience expertise into the scientific debate at a university medical centre. Regret about the limited amount of time available was expressed. Our thanks go to all participants, guests and helpers and the participating media representatives. A podcast on the symposium was aired by the science magazine LOGO on 1 December 2017 on NDR Info.