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‘Some bodies are obviously undesirable’

Intersex persons often undergo surgery early in life in order for them to fit into the binary gender norm. The surgeries are standard procedure in all Nordic countries despite the fact that they cannot be justified on medical grounds.
‘The doctors think they can decide what a child’s “right” sex is, but they can’t,’ says Kitty Anderson, chair of Intersex Iceland.

According to Kitty Anderson, the decisions doctors make can never be anything more than guesses.
‘The ”right” sex is whatever sex corresponds to the child’s gender identity, and we can’t know anything about that until the child grows older,’ she says.
The way she sees it, almost all surgeries and other interventions performed on children with intersex variations are carried out for cosmetic reasons or to make the child fit the standard for what men and women are supposed to look like.
‘People should be able to decide what is done to their bodies. Since the surgeries are rarely necessary from a health perspective, they shouldn’t be done at such an early age,’ she says.

Maarit Huuska. Press photo
 Maarit Huuska. Press photo

Only one hospital in the whole Nordic region, Oulu University Hospital in Finland, has clearly declared it will not perform surgeries on children with intersex variations for cosmetic or social reasons. Maarit Huuska from Seta – LGBTI Rights in Finland, believes the hospital’s resistance has been very important.
‘It shows there are alternatives. It has also sparked a discussion about what is ethically right.’
According to Maarit Huuska, not all medical experts in Finland are on the same page. The types of surgery that Oulu University Hospital refuses to perform are still available at the hospital in Helsinki. In May last year, however, new ethical guidelines for healthcare in Finland were presented, and they discourage doctors from performing surgery on children with intersex variations for cosmetic or social reasons.
‘We don’t know what the effects of it will be,’ says Maarit Huuska.

Selective abortion and silence important issues

The final decision on what medical procedures should be carried out on children with intersex variations is often made by the parents, yet the responsibility never lies with them, according to Ellie Nordfelt, intersex activist in Sweden. She says that the core of the problem is how doctors and other experts present the situation to the parents.
‘They are told that their child is not normal but that the doctors can fix it. It’s a shock to them,’ she says.
She also mentions selective abortions as an issue important to the intersex movement. In most cases when an intersex variation is discovered in a foetus, the pregnancy is terminated.
‘Some bodies are obviously undesirable. What does that do to those of us who actually end up being born? We really shouldn’t be born at all, and if we are born anyway we need to be surgically normalised as soon as possible,’ says Ellie Nordfelt.

Both Ellie Nordfelt and Kitty Anderson believe that intersex persons will not gain the right to healthcare based on informed consent without political intervention.
‘The surgeries will continue until we get a law that prohibits them. The medical experts will not implement the necessary changes on their own,’ says Kitty Anderson.

Kitty Andersson. Press photo
 Kitty Andersson. Press photo

Her own story shows that society also has a past to deal with. Not long ago, children were often not told that they had an intersex variation. Kitty Anderson did not find out she was intersex until she was a teenager.
‘At that point, when I finally found out, I was feeling miserable. I totally lost faith in the adult world. I just couldn’t trust grown-ups anymore. I thought that everybody had lied to me,’ she says.
In today’s age she believes it is unusual that the information is kept from the child in that way.
‘Now we understand better that it causes problems. Children have the right to know things like that about themselves. It’s super important,’ she says.

Nordic countries not role models

The Nordic countries tend to see themselves as pioneers and role models when it comes to LGBIT issues, but that is a false self-image, according to Kitty Anderson.
‘If there is a role model, it’s Malta,’ she says.
That’s the only country in Europe that has outlawed surgeries on children with intersex variations for cosmetic or social reasons. No Nordic county is considering a similar law at present, but both Kitty Anderson and Ellie Nordfelt are noticing a growing interest in the situation of intersex persons at the political level. For example, the Swedish National Board of Health and Welfare has been commissioned to investigate the health care that intersex persons receive in the country, and in Iceland, the Ministry of Welfare has appointed a queer council in which the intersex movement is represented.

Ellie Nordfelt believes that the increased visibility is important. She describes how the actual diagnosis system may isolate and alienate people.
‘We are divided into a bunch of different diagnoses and are told there are very few of us. That makes it hard for us to meet each other and talk about our experiences,’ she says.
‘In my dream society, there’s no need to diagnose and correct. Instead we celebrate differences and think of physical variations as something positive.

Updated 13 April 2020