When Marleen Hendrickx used to have an appointment at the hospital, she always knew which room to be in. She just had to follow the parade of people. She joked about it with her mother: look, we have to go there. Once inside, she was asked if it was okay for the interns to watch. She endured it laughing, she says. “But in hindsight it made no sense. Nobody dares to say in such a situation: no, all ten of you go away.” It added to a lingering sense that she was apparently a very special case. “A species freakshow.”
Hendrickx (32) is a dancer and theater maker. She is one of more than 190,000 people in the Netherlands who can be regarded as intersex: someone who was born with a body that does not fall within the prevailing image of male or female. This group, according to one research published Wednesday, experiences great challenges in the field of sex and relationships. Young intersex people face ignorance and stigma. Medical treatments intended to help them often turn out to be harmful and hindering.
“We noticed that little was known about the sexual development of intersex people,” says Marianne Cense, senior researcher at Rutgers, expertise center for sexuality, which carried out the study together with the Dutch organization for sex diversity (NNID). The group of intersex people, she emphasizes, is broad and diverse. “For example, someone may be insensitive to testosterone or there may be chromosomal differences, such as in Klinefelter syndrome.”
The ‘silence’ surrounding intersex causes many to struggle with feelings of inferiority and loneliness
The research includes eighteen in-depth interviews. A common thread, says Cense, is that the interviewees experienced things in their youth that made it difficult for them to enter into (sexual) relationships later in life. “The feeling ‘I’m not good enough’ came back to everyone. It was caused by the medical treatments and examinations they underwent at a young age, or because they were told: you can’t talk to anyone about this. That affected their self-image. They got the feeling: there is something wrong with me.”
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The ‘silence’ around intersex means that many participants in the study struggle with feelings of inferiority and loneliness. Some interviewees said that their parents gave them inadequate or incorrect information about what was going on with them. About half were explicitly advised to keep their diagnosis secret, which made them feel even more isolated. “That was a very hard blow,” says a 24-year-old participant. “That caused me to become very distant and very insecure.”
For many interviewees, conforming to the norm became a survival strategy. In order not to stand out, they conformed as much as possible to the image of a ‘normal’ man or woman. Sometimes this led to a carefully constructed double life. An interviewee: “Dressing more feminine than necessary, but always putting make-up on my head […] All I did to hide my body and hide the secret. That went as far as sitting in a certain way so that I don’t come across as masculine.”
Keep secret
Marleen Hendrickx, who also participated in the investigation, was informed “in phases”. Around the age of ten she was told that she had to take pills because her body was not producing enough hormones. Only later did she learn what it really was. “I have androgen insensitivity syndrome. I have both an X and Y chromosome, but my body is not responding to the male hormone. As a result, I did not develop as a man, but neither did I have a uterus or ovaries.” At five, she says, underdeveloped testicles were removed from her abdomen. “That happened because there would be a risk of cancer.”
She was also advised to keep what was going on a secret. “That was complicated, because I had to go to the hospital regularly during school hours. And then you hit puberty and all your girlfriends get their period – at one point I had to come up with a fictional moment for that. You’re going to lie and bend over backwards. It made me increasingly see myself as a monster: there was something in me that no one was allowed to see.”
It was a vicious circle, she says, the feeling of being weird getting stronger and stronger. “Because I didn’t talk to anyone about it, there was never the perspective: oh, it’s not too bad.”
Like many other intersex people, Hendrickx felt she had little say in her medical trajectory and how she was treated. “If an intern asked if I could take off my top to measure my chest size, I did. Also later, when it came to a vagina, the question was not if we would do that, but when. I’ve never been asked, do you want a vagina? I’m still angry about that. The idea was: we made you a girl, so a penis should fit in there too.”
According to researcher Marianne Cense, the lack of control has a major impact on the sexual development of intersex people. “Self-determination, that you are allowed to determine your own wishes and limits, is very important in this.” The fact that doctors do not always take this into account is because the medical world is not separate from society, says Cense. “The prevailing norms – men are like this, women are like that – also apply there. Doctors do their jobs with the best of intentions. The idea is: you do children a service by helping them to fit within that prevailing standard as much as possible. Otherwise they fall by the wayside. But in practice it often turns out differently.”
Cense and her co-researcher Mir Abe Marinus advocate freedom of choice and a ban on unnecessary interventions. “We say to the medical sector: put self-determination first. Don’t just look at the functionality of the body, but have some good conversations first: what is sexuality anyway? Provide better psychological counseling. We advise parents: let your child feel that it is good as it is.” She also hopes that society will become more aware of diversity. “Also in education, for example. It was harrowing to hear how much ignorance there is. That biology teachers said: ‘Oh no, that doesn’t exist, then you were born dead.’”
Marleen Hendrickx was 22 when she told a friend she was intersex. It was, she says, as if a little air could finally escape from a pressure cooker. In recent years she has made the performances XYI in XYWE about being intersex. She also played it in hospitals. She sees that space is slowly being created for reflection. “Making the performances made me a bit activist. I now feel that I may be there. And if that place isn’t there, I’ll create it.”
A version of this article also appeared in the newspaper of February 23, 2023
