Intersex kids in Germany and Denmark are undergoing up to five intrusive and traumatic medical procedures in the first year of their life, Amnesty International revealed.
They released a report looking into intersex kids in both countries who were born with sex characteristics which do not fit male or female norms.
Titled ‘First, Do No Harm’, it is in parts based on interviews with 16 intersex people and eight parents of intersex children to find out about their experiences.
D., from Germany, underwent five genital operations in the first year of their life alone.
‘I have been operated on, it’s too late for me,’ they said.
‘But if I stay silent it’s like I support surgeries and I can only change things if I speak up.’
Research suggests up to 1.7% of the world’s population are born with what researchers call a ‘variaton in sex characteristics’ – ie their genitals and/or reproductive organs do not match the binary system of male and female.
For comparison, between 1% and 2% of the world’s population are born with red hair (although more people carry the necessary gene).
To ‘normalize’ intersex kids’ bodies, they and their parents are often forced into highly unnecessary and invasive procedures.
They include operations to hide an enlarged clitoris and vagionplasty to create or enlarge a vaginal opening.
Some kids also have to undergo gonadectomies, in which the gonads – often including ovarian and testicular tissue – are removed. As a result, people will require lifelong hormone treatments and will not be able to have children.
They are irreversible and can do serious damage to children, even later in their life.
‘These so-called ‘normalising’ procedures are being carried out without full knowledge of the potentially harmful long-term effects they are having on children,’ said Laura Carter, researcher on sexual orientato and gender identity at Amnesty International.
‘We’re talking about incisions being made to sensitive tissue, with life-long consequences, all because of stereotypes about what a boy or girl should look like.’
The benefit of these surgeries is questionable, she said; research shows the procedures to be ‘an incredibly harrowing experience’ for the people ‘treated’ with them.
Here are some of the harrowing experiences:
Disclaimer: in some cases, it is unclear which sex the person identifies with and which pronouns they prefer. In these cases, we will use ‘they’, rather than a gendered pronoun.
Stine, intersex woman, Denmark
“[The endocrinologist I saw] spoke a lot about getting treatment with oestrogens, progesterone and testosterone suppressing medications.
‘But the only thing he wanted to treat me with was testosterone treatment “to make a man out of me” and to have my breasts cut off because “that is what we normally do”.’
Sandrao said they were miserable for 34 years and only found out two years ago they had surgery to remove testicles when they were five years old.
They have also completely forgotten the first 11 years of their life and are now trying to figure out what happened.
‘I had other operations, other genital surgery. I don’t know if I had a vagina at birth or if it was a reconstruction. My urethra is a different position. I saw a gynaecologist in 2014 and there is a lot of scarring,’ Sandrao said.
‘I knew I was different, I thought I was some kind of monster. I was unable to develop a gender identity. I was pressed into the female role, I had to wear skirts, I had to have long hair. It was painful to have sex with men and I thought this was normal.
‘I took part in a study and they found a “genetic disorder”. But I don’t like this word. I have a variation.’
‘Physicians don’t give enough information to parents. I think the reason is that the medical profession only thinks in this gender binary system. Instead of saying your child is normal, and will grow up healthily, they say something is wrong and it can be fixed with surgery.
‘I see an endocrinologist. When I first came to see him, he said I needed to make up my mind whether to be male or female. They are unable to think outside the box. But now his opinion has changed. This is what gives me the power and the energy to fight.’
H. was operated on when they were five, for hypospadias. This is a form of surgery where the urethra is ‘repositioned’ to the tip of the penis, in order to create a ‘functionally and cosmetically normal’ penis.
H. said they knew they had surgery, but never know what it was for.
‘My mother told me I didn’t pee straight,’ they said.
‘So that was the explanation I was told and that’s what I believed.’
Although they didn’t know what the surgery was for, H still remembered the aftermath.
‘I had to pee and it just hurt really [badly], so I held back my urine because it hurt so much. I was screaming in the toilet, running around, I had no clothes on,’ they said.
‘In the end, I peed all over – I screamed, I was afraid, I didn’t understand what has happening. I was a bit embarrassed for peeing all over the place. That was the only thing I remember after the 1984 incident… I still often sit down when I pee because I can’t always control the urine.
‘When I think about what happened, I get upset, because it wasn’t something for anyone else to decide – it could have waited. I get sad when I think about the fact that it is considered necessary to operate on these children, only because other people think it should be done.’
‘My mother told me a lot of lies and it was not right. I can understand that my parents were not the source of the problem, it was the doctor,’ she said.
‘My baby clothes were pink and then 18 months later they changed to blue. My mother told me that my children’s clothes were pink because the county where my mother came from had different traditions, boy’s clothes were pink. Why would I question my parents?
‘I don’t know fully what was done. But I found my first birth certificate, in which I was assigned female. After 42 years, there was no more information.
‘Eighteen months after I was born, I had a small operation. I was told this was to remove my appendix. But it wasn’t. I had my appendix out at seven.
‘Now I’m 58. I had a chromosomal analysis done – it found male and female cells. Two thirds female, one third male.
‘It’s my decision to have the choice of what I want, not my parents, not my doctor – I must have all the information about myself, what are my own realities.’
Anna, mother of Nina (11), Germany
Before Nina was born, Anna had an examination because of her age at the time of pregnancy.
Doctors told her she would have a boy. But Nina has complete androgen insensitivity syndrome, which means her cells are unable to respond to male hormones. This prevented the development of male genitalia both in the womb and during puberty.
It does not impact the development of female genitalia.
‘But then there wasn’t a boy. At first I thought: Science got it wrong,’ Anna said.
‘In hindsight I think: the medical staff had an idea straight away of what was behind this. They treated us very sensitively. I felt well looked after.
‘For the first two days I had a defensive attitude towards my daughter. But the medical staff supported me, our situation was treated confidentially. I was given a recommendation and a contact in the university hospital, appointments were arranged for us. We did not need to take care of that.’
Currently, Nina visits the hospital twice a year for check-ups, but something is missing for her mom: psychological support.
‘I raised this with the endocrinologist at the university hospital. She recommended someone in Berlin which is 150km away – that is not suitable for me,’ Anna told Amnesty.
‘There was a discussion within the Ethics Commission– this should filter through to the relevant areas of clinical expertise, should lead to a certain level of commitment for people to get trained.
‘This need not mean that everyone needs to undergo specialist training. But it should be possible for medical staff [who work with people with variations of sex characteristics] to take a “crash course.” I don’t want to be left feeling I have to explain everything. I would like to have physicians who are sensitive to the issues.
‘I feel like the health professionals are really not sensitive to the psychosocial situation of affected people.
‘For example: During the consultation the medical notes will be lying – openly visible – on the table so one can see the photos. Those photos were taken with my permission [some time ago when Nina was little]. One’s gaze falls on those photos – the medical professionals do not notice that. I don’t agree with this, I find it lacks sensitivity.
‘Equally, when the conversation is about my daughter there are issues about the use of language: in addressing my daughter, a doctor talks about “testes”. I then say “let’s agree to use the term “germinal glands”.
‘I raise this kind of thing, draw people’s attention to it, because I know the medical professionals are not conscious of this. I speak on my own behalf as a representative in the presence of my daughter because I want her to learn that it’s absolutely fine to raise such matters.’