First, Do No Harm: ensuring the rights of children born intersex.

‘Is it a boy or a girl?’ It 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, and that everyone’s biological and genetic characteristics fit neatly into one of two categories.

But that is not always the case; in fact, more often than you might think. An estimated 1.7% of children in the world are born every year with variations of sex characteristics. 

These variations are diverse; for instance some children have genitalia outside the standard norms for boys or girls, others have feminised bodies but have XY (male) chromosomes, or masculine bodies and XX (female) chromosomes.

Many of these children undergo surgery in an effort to ‘normalise’ them, despite the fact that these interventions are often not emergency-driven, invasive and irreversible. 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 children. Such practices can constitute gross violations of their human rights.

I am furious about what has happened to me. They should have waited until I was old enough to make my own decisions.

Ditte, activist, Denmark

Is gender a binary system or a spectrum?

Intersex is an umbrella term used to cover a broad group of people who have sex characteristics that fall outside the typical binary of male or female. Some people with such variations describe themselves as intersex, some do not.

They can include differences in primary sex characteristics, such as internal and external genitalia, reproductive systems, hormone levels and sex chromosomes. Variations may also occur in secondary sex characteristics, which become apparent at puberty.

Being intersex is about biological features and not your gender identity per se. It’s not about your sexual orientation either – intersex people have many sexual orientations.

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”.

Everybody should be entitled to get access to their medical journals. I have 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.

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. 

Lack of support for parents

In Germany and Denmark, where Amnesty International recently conducted research, many people born with variations in sex characteristics undergo surgery during infancy and early childhood to ‘normalise’ their gender appearance, despite being too young to consent to such medical interventions.

The responsibility to decide whether or not these children will undergo surgeries then falls to parents, who are often not provided with adequate information to make an informed decision. They often feel under pressure to make their child ‘fit’ the male or female box, for fear that they will face psychological problems or harassment in the future.

Thousands of children end up having their bodies and lives profoundly affected by invasive, irreversible medical interventions that violate their rights to bodily integrity, to identity and private life, and to the highest attainable standard of health.

Parents should be offered information and support to make the right choice for their children and make an informed decision on what is best for their children, not based on how the society expects them to look like.

Stephanie Stine Toft’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.

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 am now trying to get coverage through the public healthcare system, again.

Not medically necessary

Most people interviewed by Amnesty International stated that the surgeries they had undergone as children were non-emergency, but performed to make them conform to the standard norm of what a girl or a boy ‘should’ look like.

But the consequences of such operations should not be taken lightly. Many people Amnesty spoke to reported lasting negative impacts on their health, sexual lives, psychological well-being and their gender identity.

When performed without informed consent or adequate information, these surgeries violate people’s right to physical bodily integrity and may have long-term consequences on their right to health and their sexual and reproductive rights, particularly since they can severely impede people’s fertility.  

“The doctors thought they were doing something good so we would fit better with society – they didn’t realize that it’s worse with damaged bodies.” 

Anjo, activist, Germany

Steffi’s story

I am 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 have 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.   

The impact of not acting

Research to date has primarily focused on people that have undergone surgery or treatment as children or adolescents, rather than those who have not been treated. Therefore, the evidence for not intervening is largely anecdotal, while research on the outcome of surgeries shows the dissatisfaction of people who have undergone them.

M*, a German physician, told Amnesty International that she has treated older patients with intersex conditions who had not had surgeries: “No-one has said that they were angry that they did not receive surgery. Some people who did not have surgery noted that peeing was different from other boys… but it was not a big problem”.

Activists also told Amnesty International about the benefits they had seen in children whose parents delayed the decision on whether or not to operate.

Long-term research is lacking, however, that would establish the impact of not acting early. Assessing the quality of life and health of individuals who have not undergone treatment should be a key factor in assessing the value of surgery. 

Speaking Out

In the 1990s, more and more people with variations of sex characteristics who had undergone medical interventions began to speak out about their experiences. Many highlighted their opposition to ‘normalizing’ medical treatment and promoted the use of the term ‘intersex’.

Since then, organizations, activist groups, human rights defenders and support groups have worked hard to bring visibility to these issues. This advocacy and awareness work has led to intersex rights issues being incorporated in a declaration by 12 UN agencies calling on states to end violence and discrimination against lesbian, gay, bisexual, transgender and intersex people and highlighting the practice of “unnecessary surgery and treatment on intersex children without their consent.”

Challenging the status quo

We now have a more detailed understanding of sex and gender and know that people don’t always fit within the binary of male and female.

Medical practices, which subject children to painful and often damaging surgeries for them to fit this binary, cannot be allowed to continue unchallenged.

Of course all decisions must be taken on a case-by-case basis; there will be cases where there is a genuine medical need to intervene to protect someone’s health. But intersex people – like everyone else – should have the right to make informed decisions about their own bodies. 

I have been operated on, it’s too late for me, but if I stay silent it’s like I support surgeries and I can only change things if I speak up.

D*, Germany, who underwent five genital operations