‘Boy or girl?’ is often the first question people ask parents about their baby. It’s a question based on the assumption that the world is divided into two groups of people, male and female. But that’s not always the case.
Worldwide, every year, an estimated 1.7% of children are born with variations of sex characteristics. Intersex people are born with physical sex characteristics (genitals, gonads, hormones, chromosomes or reproductive organs) that don’t fit medical and social norms for female or male bodies.
Being intersex is about biological features and not gender identity per se. It’s not about sexual orientation either – intersex people have many sexual orientations.
Many of these intersex children undergo surgery in an effort to ‘normalise’ them, despite the fact that these interventions are often invasive, irreversible and not emergency-driven. These children are too young to consent at the time of the intervention and their parents are often not given adequate information and support to make an informed decision about what is best for their child. Such practices can constitute gross violations of their human rights.
Here, four people tell us about their experiences of being intersex:
Ditte’s story
I was born in 1962. In some of my earliest memories I knew that I was not the same as other boys. At 25, I decided that I had to do something about it. I had had several blood tests over the years, with doctors always concluding there was nothing wrong. When I was 39 I met a physician who told me that my scars were the result of surgical intervention during childhood.
When my parents had both passed away I found out I had a much older half-sibling, who said that when I was a child our father had explained that “nature had made a mistake with me” and that “I had physically been born with both sexes”.
…when I was a child our father had explained that “nature had made a mistake with me” and that “I had physically been born with both sexes”.
Everybody should be entitled to get access to their medical journals. I’ve asked the authorities for information on what happened to me, but medical journals from the first ten years of my life suddenly disappeared. Instead I was told to accept myself as the gender I was recorded as, and as a transsexual who was applying for sex reassignment surgery.
I did not submit to this and consequently I was stigmatised as mentally ill, I lost my career and experienced a severe loss of income. The authorities are still labelling me a transsexual.
I am of course furious about what has happened to me. They should have waited until I was old enough to make my own decisions based on informed consultation.
Sandrao’s story
I only found out about my situation two years ago and I am still struggling to accept it. I have completely forgotten my first 11 years and am trying to figure out what happened to me. I know that I had surgery to remove testicles when I was five, as well as other genital operations. I knew I was different; I thought I was some kind of monster.
It was painful to have sex with men and I thought this was normal. I was pressed into the female role; I had to wear skirts, I had to have long hair. I have been miserable for 34 years.
I was pressed into the female role; I had to wear skirts, I had to have long hair. I have been miserable for 34 years.
This kind of surgery is still being performed and physicians don’t give enough information to parents. Instead of saying that your child is normal and will grow up healthily, they say something is wrong and it can be fixed with surgery.
There is a third gender option and I do not mind what name they will give this, as long as children will not feel that they don’t fit in. I know that I cannot change my life but I really want to advocate to prevent these surgeries being performed on others.
Stephanie’s story
From an early age I identified as a girl but as a teenager my body started developing in both male and female directions. I grew a lot taller, while developing female breast tissue. I tried to hide my body, I was binding my breasts with elasticated bandages. I gained weight to disguise my breasts as fat.
Once when my parents were out I prepared to cut [my genitalia] off, but I stopped myself at the last minute. I feared that I would bleed to death. I convinced myself that I would have to be as boy-like as possible, which became a lot easier at 17 when my beard started to grow. I didn’t like this, but it upheld the mirage. I stopped looking at myself in the mirror.
Once when my parents were out I prepared to cut [my genitalia] off, but I stopped myself at the last minute. I feared that I would bleed to death.
Around 21-years-old, I had a mental breakdown. I asked to be referred to a sexology clinic but my GP sent me for psychiatric examination instead. After a year I decided to end the psychiatric sessions and my GP referred me to a sexology clinic, but eventually they said that I didn’t fit the trans diagnosis.
Later on I was institutionalised for about a year to a year and a half. After a while I left and moved in with my then-girlfriend, but eventually I broke it to her that I wasn’t able to keep living as a stereotypical family guy. We broke up, but maintained a friendship.
I got into contact with a gynaecologist who discussed the possibility of treating me with oestrogens and testosterone-suppressors. He suggested I contact an endocrinologist, who then referred me to an expert, but the only thing he was able to offer me was testosterone treatment ‘to make a man out of me’ and to have my breasts cut off.
This was 5 years ago and I’m now trying to get coverage through the public healthcare system, again.
Steffi’s story
I’m forty years old and I was born “ambiguous”. I found out about my diagnosis at 11, by chance. During an annual routine check-up, it was said that ‘everything had healed well after the ovaries had been removed’. The subsequent conversation with my mother was crushing, a turning point. From one second to the next I was no longer a child.
My uterus was also removed – this should have been left. I was just told: “these pills will help you develop in a female manner…”
The doctor said this condition was so rare that I should not search for other affected people. I believed him. Until I was 28 I repressed everything. I played the happy girl and woman. No one knew how things looked inside me.
My education happened through a self-help group. It was a big support for me psychologically to see how others deal with it. People who support you, people who are there for you.
I am certified as severely disabled. I’ve received endocrinological treatment for the past twelve years. In 2011 I went to court because my appeal for compensation was rejected. But the case was also rejected because, according to the court, the expert (who had operated on me) had provided a ‘sound diagnosis’.
The judgment was crushing. I feel abandoned by the justice system. But I don’t want to let this expert opinion stand; I have to appeal. I don’t know how this will end.
More information
We encourage you to read the Darlington Statement, a joint consensus statement by Australian and Aotearoa/New Zealand intersex organisations and independent advocates.
Read Amnesty’s recent report First, do no harm: Ensuring the rights of children born intersex.
