Do you know what the term intersex means? If the answer is no, you’re not the only one. Many people couldn’t tell you; nor could they say what issues intersex people face.
As well as stigma and discrimination, many children who are born intersex face unnecessary medical surgeries in their early years, which irrevocably shape their lives before they are even able to express their opinion.
We’ve been catching up with leading intersex activist Kitty Anderson, who has dedicated her time to fighting for the rights of intersex people for the past two-and-a-half years.
What does it mean to be intersex?
Intersex is an umbrella term used to cover a broad group of people who have sex characteristics that fall outside typical, binary “norms” of male or female. These can include primary sex characteristics such as internal and external genitalia, reproductive systems, hormone levels and sex chromosomes, or 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.
How did you find out that you are intersex?
When I found out I was 13 and I completely freaked out. There can be a lot of secrecy and stigma related to being intersex and it was something that had been kept from me. But when my cousin – who is also intersex – was born a couple of years later, my family didn’t keep it a secret and it was a healing process for all of us.
It took a long time to get over feeling that this was something I should not mention, which affects your social life. When topics like menstruation or having kids came up, I would just nod and go along with the conversation because that was what was expected. But I didn’t want to.
I first started talking about being intersex when I went on exchange to Australia; I thought to myself, “I’m in another country, I’ll just try it out here”. So when I met new people I made being intersex a part of who I am and I didn’t have any trouble or problems with it – a couple of people made weird or inappropriate comments but it wasn’t the norm.
It doesn’t really matter if they’re an intersex kid or not – all of our children deserve to grow up in a world where their human rights are respected
When I came back home to Iceland at 19 I started talking about it more. I wasn’t running around yelling “Hi, I am intersex!” but I came to a point where I could talk about it and it was fine. Now it’s just a part of me and it just comes up in conversations because I stopped moderating what I say. Being intersex has been so hidden and under the radar that a lot of people actually miss out on the chance to meet other intersex people, which has hampered community building.
What human rights issues do intersex people face?
In order to ‘normalise’ people who are born intersex, so that they fit into a traditional male or female appearance, medical interventions are carried out on some very young children.
Most early interventions are surgeries on cosmetic or social grounds that serve to make the appearance of a child’s genitalia normative. These procedures include clitoral reductions, which is when tissue that is full of nerve endings is removed to make the appearance of the clitoris seem smaller, or surgeries to remove internal gonads (ovaries or testes), surgeries to create a new vagina or surgeries to normalise the appearance of the penis.
These invasive and life-changing interventions take place before the child can even voice their opinion on what is being done to them.
Generally surgical interventions today take place with the consent of parents. But what information is given to the parents about the surgeries – or the consequences – is usually questionable. Parents are expected to consent to treatments that may have long-term health consequences, which can include life-long needs for hormonal treatments. But really these children should have the right to make such major choices about their own bodies themselves.
So what changes do you want to see?
Our goal is to end all medically unnecessary interventions on children that are based on cosmetic or social grounds. We also need to educate people and raise awareness to overcome stigma, as well as provide more psychological support for parents, so that intersex children do not feel isolated or alone and can get easy access to support and peer networks.
We need to move towards a psycho-social framework which accepts intersex people, because the problem isn’t with intersex kids, it’s with society expecting them to conform to their ideals. It doesn’t really matter if it’s an intersex kid or not – all of our children deserve to grow up in a world where their human rights are respected.
There have already been a number of positive developments. In 2015, Malta outlawed surgeries based on social grounds on intersex children (this actually happened on April 1, which did initially lead to a sneaking suspicion that it was an April Fool’s joke!).
Colombia has also set up a system so that surgeries of this nature have to go through the court system. The United Nations Committee against Torture and Committee on Children’s Rights have issued recommendations to several countries to stop medically-unnecessary surgical interventions on intersex children.
These children should have the right to make such major choices about their own bodies themselves.
But there is still work to do. If we don’t raise awareness, current practices will continue. What history has shown us is that the main focus of interest is in creating better techniques for surgeries of this nature, rather than protecting the rights of children and their bodily autonomy and integrity.
It was society that created this paradigm, and without society now demanding that children’s rights be respected, it is always going to be easy to sweep these issues under the carpet.
Until people who are scared to speak out see that there is a shift in societal perception and support, it is going to be a lot harder for them to raise their voices and join the broader movement which so desperately needs them.