If the answers to the questions are no, it’s not strange at all. There’s too little knowledge about intersex people’s health and situation in Sweden.

Intersex means having a body that, innately, has variations regarding sex. There is a large number of different bodily variations. It might mean that your chromosomes are different, that you have XXY or X0 instead of XY or XX. It might also mean that the body doesn’t recognize sex hormones, such as estrogen and testosterone, or that the body produces too much of these hormones. Sometimes the genitals look different, but most often not.

Children born with genitalia that looks different are often subjected to surgery during their first years of life to look more “normal”. It’s not uncommon that the surgery is performed for cosmetic purposes, i.e. that it isn’t medically warranted. Sweden has been criticized by the UN for continuing with this practice since it contravenes human rights. In many countries, there are laws that prohibit cosmetic surgery on the genitalia of intersex children, but we haven’t gotten that far in Sweden yet. We think that there’s a need for a governmental investigation that examines how unwarranted surgeries on children’s genitalia can be prohibited here too. If Malta and Argentina can do it, so can we.

About 20 children who require different medical treatments because of intersex variations are born every year in Sweden, but the number of people who have different kinds of intersex variations is significantly higher. Many people discover their intersex variation during adolescence or as adults. Difficulty conceiving or the absence of menstruation are examples of reasons for how an intersex variation is discovered. Some never discover it and need no treatment.

Some people with an intersex variation need healthcare to feel good. But intersex healthcare for adults today is inadequate. There are very few doctors who are sufficiently knowledgeable about the medical needs of adult intersex people. Access to health care varies across the country. In some cities there are specialists, but in great parts of the country, the knowledge is insufficient. It’s understandable that there can’t be specialists in every region, as the patient group is small. We, therefore, want the existing specialists to be tasked with supporting doctors in other regions who have patients with intersex variations.

Intersex people often grow up feeling ashamed of their body. It’s not uncommon to have experienced offensive doctor’s visits where the body has been inspected and examined. The surrounding world rarely speaks of intersex, you might believe that you’re the only one. It’s incredibly important to get to meet others with the same experience and find people to relate to.

Therefore, intersex organisations are important to health. We want to see specific donations to these organisations. The organisations have a unique position to educate healthcare staff and the general public, to create meeting spaces and do advocacy work, which is important to societal development. Today, there are no grants for intersex people’s own organisations, and they have insufficient funds for the work that they are doing.

Sweden still has a lot to do for intersex people’s health and situation. But if we start by changing the legislation around surgery, improve care and support intersex people’s own organisations, we have taken a great step in the right direction.

Del LaGrace Volcano, president OII Sverige

Frank Berglund, vice president RFSL

Facts

October 26 is Intersex Awareness Day, a day to recognise intersex people’s rights and situation.

In Sweden, we have the organisation OII Sverige. OII stands for Organization Intersex International.