Intersex Awareness Day takes place on October 26 because on October 26, 1996, intersex activists gathered together publicly on the street in Boston in front of a medical convention of pediatric surgeons for the first time. The activists criticized the medical practices and unauthorized gender reassignment surgeries on intersex children and adolescents. That was the first politicization by and for inter* people. In 2003, this day was launched by the US-American inter* activist Betsy Driver as "Intersex Awareness Day". Since then, this day has been celebrated by inter* organizations around the world.  

We are holding the rally in front of the Bundestag because the current federal government has laid down the abolition of forced medical interventions - i.e. forced hormonal treatments and gender-changing operations on inter* children and young people - in the coalition agreement of the current legislative period. We want to draw attention to the fact that this goal will actually be achieved by the next federal election in September 2021. There are various draft laws that are being discussed in working groups in the Bundestag and Bundesrat, which is why we decided to hold the rally on the Bundestagswiese in order to clearly address the political decision-makers.

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DevelopMind : Can you explain very briefly what "intersex" means and please briefly explain the difference between the two terms "intersex" and "intersexuality"?

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Robi : "intersex" is the English term used in political activism in English-speaking countries. The term "intersexuality" is the medical term used by doctors to describe these physical developments as "malformations" and as "diseases". For me, intersexual is therefore a term with negative connotations, which I therefore do not want to use and which I reject. It offers itself as an alternative term intersex, in short: inter*. A brief explanation of what inter* means: inter* (or intersex) denotes the innate presence of genetic-anatomical-hormonal diversity that does not correspond to the constructed gender norms of man and woman. Intersex can be discovered before, at or after birth, during puberty, later in life, or not at all. Inter*people can have a gender identity as inter*. Inter* can also have a male, female or non-binary and/or trans identity.  

From a medical point of view, people born intersex do not fit into the socially constructed binary gender norm: what a “man” “should” look like or what a “woman” “should look like”. Because of this medical "diagnosis".  the bodies are therefore subjected to forced medical changes according to the stereotypical images of "man" or "woman", so that an attempt is made to erase gender diversity.

The term intersexuality is therefore characterized by this medical, pathological understanding and this is exactly where the criticism of various political inter* activists* starts. On the other hand, intersex is a term that contains a social, empowering component and at the same time eludes this medical interpretation sovereignty over our bodies.

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Intersex is not a “medical problem” and “a malformation”. I feel that I am not a diagnosis or a supposed "gender development disorder". I am physical variety! I am part of physical diversity! Of course, my body today is the result of these sex-changing surgeries that are forced on intersex children. Of course, my body is also a result of this discourse of how a man "should look" and that's why I had surgery. But for me and my psyche I cannot accept and dismiss this pathologization of my physicality. By using the term intersex, I clearly differentiate myself from the diagnosis and say: "No, medicine no longer has any power over me and from now on I make decisions about my body myself." With operations, medicine is trying to erase our various physicalities. This discourse and this violence are so blatantly normalized that medicine assumes that you are doing the children a "favour". In a way, a “medical emergency” is constructed because intersex is not allowed to exist due to these social norms “man” or “woman”. For this reason, various diagnoses have been used since the 1950s. With the idea of saying that it would be "healthier" (= "normal") if the children grew up in a binary physicality and binary gender identity.

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The criticism from human rights activism of this medical system thinking is that these medical interventions are human rights violations. This violates the right to physical integrity and the right to sexual self-determination. Because it's not that I decided to have these surgeries, it was simply a foreign decision for me when I was an infant and toddler.  

It's systematic abuse.  

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DevelopMind : Do you happen to know roughly what percentage of the world's population is born intersex?

Robi : An estimate by the UN assumes that approximately 1.7% of the world's population exhibits intersex characteristics. Not all intersex people undergo surgery. That depends on the parents: if the parents are informed and have dealt with the issue, medical interventions may be rejected. But the problem is that inter* is so invisible and there are few opportunities to find out about it. The majority of inter* people don't even know they are intersex. Many are "discovered" after birth and then undergo compulsory surgery. Some inter*people may discover each other during puberty. If you had surgery as an infant and no one tells you later in life, then you don't know what's going on with you. This makes an individual work-up enormously difficult.

DevelopMind : What has changed in medical practice since the late 80s when you were born and how does the communication between doctors and parents work?

Robi : My impression is that the doctors put enormous pressure on the parents. The doctors learned during their studies that inter* would be a "disease". When doctors claim that the babies need to be operated on, parents are unsure at first and quickly agree. In my opinion, there is a lack of information and education in these moments of decision and parental consent to these gender-changing procedures. There should therefore be more inter* people or self-help organizations from this area in hospitals and maternity clinics who can inform and advise parents in order to postpone these decisions about a possible surgery, since the interventions are not medically necessary. There is simply a lack of knowledge and transparency that intersex is part of gender diversity and not a disease.

In my opinion, the fact that bodies are actually changed by forced medicine based on a binary idea of gender conception is absolutely inhuman and discriminatory. And that's why I say "compulsive medical interventions" because they aren't medical interventions that I needed or wanted. I personally never had the chance to agree because I was a baby and a toddler and because of this discourse the doctors and parents decided for me.

I put that off myself for a very long time. It was only through intensively dealing with the topic of intersex that I found out and learned to accept my diverse body as it is. I was able to find diagnostic records from my parents' home that confirmed my suspicions. I found records of hospitalizations and surgeries in the '90s. Having documentation is important for possible compensation. If the draft laws are actually renegotiated in more detail and a compensation fund is set up, it is good to be able to document the interventions. And I hope that political compensation will also be included in the draft laws.

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To come back to your question, I do believe that there is a greater awareness today. In contrast to the lesbian and gay movement, whose emancipation struggles in West Germany began in the late 1970s, the inter* movement is still a very young political human rights movement.

In the WHO health catalogue, the International Catalog of Diseases (ICD), for example, homosexuality was deleted as a "mental illness" in 1991. In 2022 trans is to be deleted as an alleged "disorder". Diagnoses to inter* are still in this catalogue. There are there is still a lot to do. Above all, all forced medical interventions must be ended immediately and there is a whole lack of discourse in medicine. Human rights activism by intersex people and for intersex people and their allies have established this discourse.

DevelopMind : What are the biggest challenges inter* people face in everyday life?

Robi : My impression is that due to these forced medical interventions, which are irreversible - i.e. not reversible - the physical consequences for those affected can be devastating. If, for example, internal gonads (gonads) are removed, the hormonal balance can be completely upset. This can have negative repercussions on the psyche.

Another challenge for intersex people is legal recognition as an inter* person. The third option in Germany divers is not sufficient because it is still too medically pathologising. If I wanted to change my marital status to diverse, then I would have to submit a medical certificate showing a "variant of gender development". This is what the legal text for changing civil status according to paragraph 45b provides. I criticize that because I then need a medical description again so that I can get legal recognition as an inter*person. I am an intersex man. That may sound contradictory at first, but it's not: I give intersex visibility on a physical level for me and on an identity level I currently feel male. That's why I'm homosexual and therefore feel part of the LSBTIQA*+ world in several ways: inter*male and gay.

I think we need to de-pathologize these inter* diagnoses, get rid of them, and say no, I'm not a diagnosis! This is a diverse physicality. My body is different! And not to evaluate this otherness negatively and to internalize it negatively in the psyche, but to work through what happened. This requires emotional resources and, above all, a society that sees gender diversity positively.

I would have found it interesting to know what it's like to grow up intersex. I don't know what it's like and I haven't met anyone personally. I know from reports that this intersex experience exists. This means that the parents have dealt with intersex and ideally let their children grow up as inter* without medical intervention until they are 18 years old. That would be one possible ideal where society could end up.

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DevelopMind : That leads me to the question of what concrete demands you make on politics and thus also on society?

Robi : In any case, we demand a ban on forced medical interventions on intersex children and young people, a fundamental de-pathologization of intersex bodies, so that our right to physical integrity and sexual self-determination is preserved and protected. Our bodies should be considered life worthy of protection. We demand legal protection against discrimination based on intersex. What is also absolutely necessary is unrestricted access to medical interventions for inter*people when they need and want it.

In any case, we need more intersex topics and inter*peers as well as teachers at educational institutions, universities and hospitals. In the medical system itself, midwives and doctors need further training.

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About the rally itself: We meet on Monday, October 26th. at 3:00 p.m. The speeches will begin at 4:00 p.m. Various self-advocacy organizations will give speeches. We organized German sign language interpreters on site and English speeches. We will place a huge Inter* flag on the Bundestag meadow and want to photograph the event accordingly for social media. We hope it will be a nice event. Of course, we also want to celebrate: us inter* and everyone who deals with inter*. We want to show that we exist and create visibility.

DevelopMind: Then we hope for a large circle of supporters on Monday!

Robi, is there anything else you would like to say in conclusion?

Robi : For me it was incredibly good to discover my intersex. I really wish that these specific biographical experiences that inter* people make become more known. In this way, other people who notice this may find out about their intersex status. That's why I'm very grateful that you're dealing with it, because I think it's very important that the experiences of inter* are heard more. This can help some people understand what's going on with them and that they are not a medical diagnosis, but may be part of gender diversity.

So my main message is: Guys, stand by your body! I am happy to be part of gender diversity and thus part of the inter* community.

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THANK YOU FOR THE INTERVIEW!

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You can find more information about the rally and TransInterQueer eV here:

https://interprojekt.wordpress.com/