“Everyone has a gender: their own” Intersex people and their rights in Germany

Intersex people suffer human rights violations and discrimination in Germany – from medically unnecessary, harmful interventions to everyday exclusion. In this photo series, six people share their experiences and their hopes for political and social change.

Intersex people are born with a variation in sex characteristics, so their bodies cannot be assigned to the prevailing definitions of what is considered male or female. This can include variations in their chromosomes, hormonal balance or the appearance of their genitals.

It is estimated that 1.7% of children worldwide are born with sex characteristics that are not aligned with the conventional idea of what is considered to be a girl’s or a boy’s body.

Growing up as they are

On the whole, intersex people are healthy. However, only a few of them are allowed to grow up as they are. In Germany most intersex children are operated on or undergo hormonal treatment – without any medical necessity for these interventions.

This common medical practice attempts to seemingly ‘normalise’ those children whose sex characteristics are considered ‘ambiguous’. Thus begins the ordeal for the people concerned: testicles are removed; an enlarged clitoris surgically reduced. Sometimes the vagina or penis are remodelled. Typically, several operations are performed over a number of years. They cause pain, scars and nerve damage, and can lead to the loss of sensitivity in the sex organs. Removing a person’s gonads causes sterility, and means they will need to take artificial hormones for the rest of their life. But most importantly, sex-assignment interventions are irreversible and cause survivors to suffer serious, lifelong physical and emotional harm.

No interventions on healthy intersex children

All this is known, yet the interventions in Germany remain common medical practice. From Amnesty International’s perspective, these are human rights violations. Intersex people have a right to health, self-determination and bodily integrity. These interventions on healthy children must be stopped.

Instead, the treatments should be postponed until the people concerned are old enough to participate meaningfully in the decision-making process and give their informed consent to potential interventions.

Listening to intersex people

In daily life intersex people are constantly confronted with confusion, prejudice and ignorance whether when checking in at the airport, paying at the supermarket checkout or registering with the medical practice. Whenever forms of ID supposedly don’t match the person, intersex people have to give a public explanation on the spot. This is also often the case where no unisex toilets are available.

In this photo series, Anjo, Charlie, D*, Eves, Lucie and Steffi share their personal experiences, their view on intersex and set out their pressing demands for political and social change. Their voices need to be heard to raise awareness and increase acceptance until it is clear to all that everyone has a gender: their own.

Photos: Chris Grodotzki / jib collective
Interviews: Andreas Koob
Illustration: INTER*SHADES © Alex Jürgen*

Charlie

“You look like a woman, so you are a woman,” is what people sometimes say as if denying the fact that I’m an inter person. I then try to explain that I look like this because certain things happened to me. At the age of one my abdominal testicles were removed, and I’ve been taking hormones ever since I turned twelve. If I didn’t, I’d look completely different. This is why I try to raise awareness wherever possible.

I do so because for me it would be a dream come true if everybody knew that inter people do exist – and that it is perfectly normal, just like there are women and men. It would also put a stop to that blatant astonishment that people look at you with as if you were a car and then blurt out: “What, such people exist?”. If the topic is not discussed, when there is a de facto veil of silence, it makes it incredibly difficult for people affected to accept themselves and their own body – in other words: my body is fine as it is, and not only after it’s been operated on or I’ve taken a bunch of hormones to fit the binary gender norm.

At school I always had to look for excuses. When I had to go to the doctor, I said I was going to the zoo. That was the official version. The appointments were always in the school holidays, so there were no issues with missing classes. I had to pretend and fit in, I disguised my hormone tablets as the pill and acted like I’d been having periods since a young age. It worked, but it wasn’t cool for me to lie to my friends for fear of being stigmatised, excluded or bullied. I denied I was intersex; I put up a mental barrier. There wasn’t anyone I could talk to openly about being intersex. There were only the doctors and my parents. As such, I didn’t discuss it with anyone. It wasn’t healthy for me.

And things are still pretty complicated to this day. My parents, sister and closest friends know about it. For some friends, I make excuses. However, I now feel bad such as when I travel the world as an inter activist knowing that I deliberately keep silent about it to some people. That’s why I intend to be more open about it gradually.

I’m also faced with the issue before entering into a longer-term relationship. I first check out the person – which can be a long process. Only when I’m happy that the person is really cool do I go for it. In some cases, my former partners, who are of any gender, don’t know I’m inter. Sometimes they know it and have handled it surprisingly well and kindly. For me, it’s a sort of coming out. If it is going to be relevant to the relationship and the future, I have to decide if it’s worth it as I don’t know how the other person will take it.

I love to move in LGBT(I) circles as people deal with diversity in a different way. They are relaxed about the topic. And it brings a smile to my face each time I pop into a café and I see unisex toilets there. It’s really not that difficult to have them – after all, they work well on trains. A lot would change if there was also greater ‘inter’ awareness in society as a whole.

D.

While people usually think I’m a man in everyday situations, I can sense the irritation in many by the way they act. For most, there are only men or woman – the notion of intersex is something they simply cannot get their head around. Even if I’m frank about it, people dismiss this and still address me as “mister”.

I’ve known for a very long time that I’m different. Looking further back, I’d say I was more like a girl than a boy in terms of the way I acted and felt. Since then, I’ve also noticed that I’m more of a woman inside when it comes to falling in love. That said, I’m far from being a woman because anatomically I’m simply not one – and that’s been the case right from birth.

If anyone explicitly questions my gender in discussions, I clarify things. This also applies to job interviews, for example: depending on the situation, if it’s appropriate I turn my intersexuality into a topic – after all, first impressions count! If a big question mark hangs over my chances, it means the odds aren’t in my favour. And anyway, if the person can’t deal with it, why should I spend eight hours a day working in the same office as them?

I’ve had nine operations. As I see it today, all these interventions have forced me medically into a male role – and that was unnecessary. The same goes for the last few operations I decided to have done. They took an enormous emotional toll on me, but I dealt with what happened and the after-effects much better as it was me who decided to have these operations.

Over the years, doctors only ever spoke about malformations – never of intersex. Even a therapist once said to me, when I was having problems during my counselling, that my self-esteem was at rock bottom because I had not been operated on correctly – I am not seen as being a real man. I believed all this, and allowed myself to be operated on one further, final time – which, of course, didn’t change anything for me emotionally. The fatal thing was that I was unable to adequately weigh this up at the time as I was not properly made aware of my ‘inner self’.

The main thing that sticks in my head about my childhood operations is the pain – the hellish pain that accompanied the interventions, such as when I was discharged with a urethra that had been freshly operated on, but without a catheter. That was like torture.

Intersex wasn’t something anyone talked about, which is why it was a long process of self-discovery. I couldn’t say I’m a homosexual or I’m a transsexual as it just didn’t fit. Nevertheless, I weighed things up and outed myself as such to my parents. But it was always like wearing a pair of jeans that are a size too small or too large for you. When my intersexuality became clear to me, it took away a lot of pressure – socially and personally. Today it’s perfectly natural.

Now I even provide peer support. I advise adults, who have just discovered they are intersex, or parents, who have an intersex kid. Making a decision on whether to go ahead with an operation is often complicated, especially for parents. Even though I’m not a parent, I always ask myself what parents should say to a child if the kid is unhappy with a non-essential operation taken at the parents’ decision? What is cut is cut. This saddles you with guilt for an eternity. By contrast, if parents postpone surgery, they can support the child in their development and environment until the child themselves can decide for or against having surgery. I also talk about this a lot more with my parents now. They explain what motivated them at the time – that compromises had to be made. This has also made a lot of things easier for me.

Eves

I realised who I am a year and a half ago. Up to then I had been living a role assigned to me as a child. I had to live as a girl, yet I always knew I wasn’t one. At the age of 42 I couldn’t live like that any longer. I broke down – physically and mentally. I had travelled a long road until I got to the point where I realised who I am – and to decide how I want to live, and in doing so come out and confront myself and others: my family and friends, neighbours, kindergarten teachers and doctors. Incidentally, I also enjoy talking to the ranger when I bump into him in the village shop. It’s all PR work to me.

To repeatedly stand up and say: this is me being my true self – and this is my right, is something that empowers me. Society must become more open to all the diversity that being a person means. And children must be able to grow up the way they are.

This wasn’t an easy step for me, but a vital one: I decided to let my beard grow and finally be me – inwardly and outwardly. I changed my name: I’m now called Eves and I’m neither a woman nor a man.

My wife was fine with this – she loves me for who I am. For our two kids, I’m sometimes still mum, but recently more dad, or simply Eves. This will be a gradual process, and we can take our time.

I – as a middle aged, overweight woman – was often treated really badly. This is because as a woman, in this society you’re very much judged on your body and nothing else. Now, in fact, people usually think I’m a man. And as a man, you’re also allowed to be fat. But regardless, people are now friendly towards me nevertheless – I even get winked at by young women! It’s so much easier being a man in this society – something I’d never have believed.

When I was 18 I even tried living that way once without me having any grasp of the concept of intersex. I stopped shaving and just stepped out into the world. I was marginalised, bullied, treated like a monster. I couldn’t keep it up – and didn’t receive any support. So I gave in and thought that I needed to live outwardly as a woman.

As I looked like a girl when I was a baby, I didn’t need any surgery. That’s all well and good, but as my body started to change during puberty I had to endure very painful hot wax treatments. I also put an immediate stop to a feminising hormone treatment I was undergoing at the time.

Right from when I was a child I gave myself a boy’s name. I called myself IF, pronounced like Yves. Since as long ago as I can remember, my life has been a struggle for my identity and my body. I always felt there was something wrong, bad, not quite right about me. Things went so far that I was just five years old when I attempted to commit suicide for the first time. It was unsuccessful, thankfully. But it’s something that has never left me. You learn to really hate yourself when you can’t be the person you truly are. Because of all the self-rejection, to some degree I disassociated myself from my own body – practically losing all sense of feeling: it meant I could run around in a t-shirt in winter without feeling the cold. And even when you start to regain a sense of feeling, you first have to come to terms with it. I still experience difficult phases, but now I have people around me who love and support me for who I am.

Lucie

I’m neither a woman nor a man, but an intersex person. That’s why I don’t want to be addressed as a female or male – something I insist upon – particularly in political dealings. And when I have to say for the third time: “Please don’t say Ms Veith; you are talking to Lucie Veith!” and the person ignores it and wants to humiliate me, I push back. In response I once addressed a secretary of state as ‘Miss’. Otherwise I try to take a friendly approach: all you need is love.

I don’t want to make anyone feel bad, that’s not the point; I just don’t pretend to be something I’m not. If you pretend to fit a norm, you get ascribed a stereotype and then certain things are expected of you. But when you’re unable to live up to those expectations, you trip yourself up. Nobody needs to do that.

Everyone is born into this world with a gender: their own. And everyone is born with the same rights. Why do we not embrace and enforce that as a matter of course?

When I was 22 my testes were removed without any medical need. I wasn’t told in advance of the consequences of this. I only found out I was fertile 20 years later, but I wasn’t allowed to reproduce because I have an intersex body. This is a serious case of sexual discrimination. My right to self-determination had been violated, as had my family’s – I was already married at the time.

Suddenly a norm loomed over this very personal relationship with the person I love and adore. My husband dealt with it extremely well by withdrawing for three days, then saying that no surgery and no diagnosis can ever come between us as I’m ultimately the same person. I’m still thankful to him for that to this day.

Nobody told us either that losing my testicles would also result in a loss in me taking pleasure in my own body as well as a loss of libido – among many other hormonal effects. It completely changed my social life and relationship. Nobody has a right to intervene in a relationship in such a manner. After all, it’s something that only concerns the two of us. And it should have been discussed with us, but it wasn’t.

It wasn’t until many years later that I realised that what had happened to me had a structural dimension: that it was a structural – a planned attack against an entire group of people. It made me realise that I need to defend myself and that I can show solidarity with many people. We need a legal standard that protects us against unnecessary operations.

It always used to be the case that intersex children needed to be operated on to save them from discrimination – that’s nonsense. In practice, we see children who were born intersex growing up well protected and well educated in an environment that is informed and which also provides the necessary protection.

I grew up in Friesland, Germany, and I moved back there with my husband, longing for the open skies and the smell of the sea. Here I live completely open in a small village with a wonderful neighbourhood that accepts me as I am. I don’t want to escape; I’m tired of fleeing. I want to be who I am. Life is beautiful and colourful here too in the countryside.

Steffi

At the age of nine I said I felt lonely and that I wanted to discuss this with others in my situation. The doctors said there wasn’t anyone else – and that what I am is so rare that there would be no point in even trying to find them. Years later I learned by chance that an intersex person who had been assigned a male gender was also being treated by my doctor at the university hospital at the very same time as me. I only uncovered this as the doctor had published uncensored full body nude photos of the two of us in a journal article.

It wasn’t until I was 28 that my childhood wish for contact came true. I attended the first meeting of a self-help group and I felt right at home – you tell your story and the other person understands. The people were like family to me right away.

For many years now, here in Germany I have provided first-port-of-call support to survivors who turn to self-help groups such as XY-Frauen [XY Women] and Intersexuelle Menschen [Intersex People]. My aim is to give people advice, empower them and bring them out of their shell. We receive enquiries from across Germany, and sometimes from all over the world. It simply fills me with joy when they come to their first meeting and I see them coming out of their shell and gaining confidence. This is why I pour a lot of energy and devotion into this work – energy I used to need to conform to a certain cliché, to put up a pretence that I could never live up to.

I see myself as an intersex person who has undergone surgery to make me look female. I refer to myself more as a female, but sometimes as a male – but that can change from minute to minute. Even at the age of 42, I’ve never had a medical diagnosis. At the time, the doctors told my parents that: “We can make a girl in three or four operations, or a boy in seven to eight.”

As things stand today, I wish they had simply left me as I was. Instead, on the fifth or sixth day after I was born I was separated from my parents and sent straight to the university hospital for three weeks. I was operated on at the age of nine months, twelve months and five and a half. To me, that’s a human rights violation. Conclusive facts were established without me having any say over them whatsoever. These are all interventions that restrict sensitivity and which could have destroyed all feeling: there are 8,000 nerve endings in the glans or clitoris – one simple incision with a scalpel is enough to sever a few hundred.

This all happened in my early childhood, yet I still remember everything and all the trauma I suffered. Following the operation I had at the age of five to remove my testes, I suffered tremendous genital pain and couldn’t understand why. By the time I was eleven I happened to find out at the annual routine check-up that that doctors were talking about ovaries, when in fact it was the testicles that they had removed.

I still suffer the serious side effects today – psychologically and hormonally. The doctors told me that: “Nobody will want something like you as a partner anyway; you’re better off looking for a hobby.” Allowing this to enter the back of your mind and falling for it is a slippery slope. More specifically, I now suffer from reduced bone density as I have not taken any hormones whatsoever in over 20 years.

Today, I try to make sure that I’m physically well by ensuring my body gets what it produces itself: testosterone and oestrogen. For this, I choose my doctors accordingly. I’m also selective about who I confide in within my social circle: they react well, which has deepened the friendships. The alleged stigma is a fallacy. Society is much more open than we think; now political and medical circles need to change urgently.

Anjo

If anyone wants to experience what I have to endure on a daily basis as a hermaphrodite, they should try using the opposite gender’s public toilet for three months in a row and see what happens. I, for instance, don’t like using men’s toilets – they’re not really my thing; women’s toilets aren’t either, but at least I’ve been accustomed to using them since a young age. At train stations or motorway service stations, it’s a real ordeal. I get comments like: “The men’s is next door!” or “Are you in the right place?”. When I say I’ve come to the correct toilet, people usually check out my bust – then they’re suddenly fine. Now I’ve got one of those Euro WC keys that lets me use toilets for disabled people, which are of course gender neutral.

Things are just as complicated when shopping, such as when the name on the credit card doesn’t match the face, or at a church service, where women and men are supposed to take turns in reading a psalm – at which point I just pop out for a moment. I can keep the examples coming, but in essence this stubborn attitude to binary sex or gender in people’s minds never lets up and is something I face each and every day. I wake up with it in the morning, and go to bed with it at night. The problem will not be solved until people start thinking in terms of is it a man or a woman, or is this a gender-diverse person?

If we were to reach this stage, nobody would even think about altering healthy children: there would be no more operations, and no more hormone treatments. After all, when a girl is born she isn’t just simply turned into a boy – there would be uproar, and rightly so. And the same shouldn’t be done to us intersex people either. But it is. And it happened to me.

I was 17 when I was prescribed oestrogen because I hadn’t started puberty. I took it like a good person should as I thought I’d become a female if I did. But it didn’t work, even though the doctor said it would.

When I was in my mid-20s I started to feel that something wasn’t right. And then at the age of 33 I realised that much still needed to be done: I found a self-help group and in doing so also found an identity. Instead of oestrogen, I took testosterone as this also matches my XY chromosomes. Only then did I actually start puberty. I became an adult at the age of 45. Prior to this, I had spent 30 years trying to live in this adult world even though I was actually still a child or adolescent. While I’m not sitting here bemoaning what’s happened, I realise that things could have gone differently. And the same goes for many other people. Indeed, there are people who, following an intersex diagnosis and subsequent genital surgery, suffer painful erections as the scar stretches. And there are others whose nerves have been severed in these types of genital ops, so they feel excitement but cannot experience satisfaction. If these are not human rights violations, I don’t know what are.

I am an activist because I want to spare others from all this and I want to bring about a positive change in society. Our voices are now being heard, but more support and backing would be extremely helpful as there’s so much to do. Besides all the medical arrogance, there is also the everyday parental conceit of “I don’t want to lose my little girl.” It was completely different in the case of my parents. While they were a bit uptight about a lot of things and always mindful of what others thought, they were absolutely fine with the fact that I’m a hermaphrodite. My father has since passed away, but my mother calls me by my new first name and uses the pronoun ‘it’ – just as I would like others to do.