If the child's body cannot be clearly determined as male or female, not only the parents ask many questions. How to raise the intersex child? What does this mean for kindergarten and school? Should you consider surgery? A sociologist has researched the topic.
"Is it a boy or a girl?" New parents know this question well. However, it cannot be answered unequivocally in all cases. The United Nations estimates that up to 1.7 percent of children are born intersex. In her dissertation, the sociologist Anike Krämer dealt with what this means for the affected families.
What is intersex anyway?
Anike Krämer: In biology, there are four physical characteristics that are currently used to determine gender. These are the chromosomes, the hormones, the gonads - i.e. the gonads - and the genitals. If all of these four characteristics do not clearly point in the direction of "male" or "female", one speaks of intersex. Incidentally, intersex has nothing to do with what gender you are sexually attracted to or how you identify.
When do parents usually find out that their child is intersex - directly after birth or much later?
After birth, the child's genitals may not look as expected. Sometimes things are different, as I found out through interviews with affected parents: there the children had a hernia in the first year of life and had to have an operation. It turned out that the supposed girls had testicles in their abdomens.
A second important period is puberty, when it becomes apparent that the child's body is not developing as expected. Then the supposed girl grows beard hair or the supposed boy grows breasts. It can also be the case that you find out about intersex much later or not at all.
If families know our child is intersex, what does that do to the parents?
I've spoken to parents who had their child's intersex diagnosis in the first year of life. Many parents speak of a shock. Because they don't know: What exactly does that mean for our lives? For the life of the child, for the upbringing? This is very unsettling for parents.
What specific questions then arise?
Diagnosis usually takes place in a medical setting. The physicians are therefore the ones who enlighten. However, parents initially have few medical questions once they know their child is healthy - which is the case with many intersex children. The parents have more everyday questions: should we leave the pink wall color in the children's room? Is it okay if my child puts on clothes now? What toys should I buy the child? These questions may sound banal, but there is a larger issue behind them.
Which topic exactly?
This shows how much we adjust our actions to the gender we think the other person is. But: If these rules apply to parents - how do you deal with a girl, how with a boy? - fall away, they don't know what to do. The parents are afraid that other people will be similarly unsettled and worried. What does this mean for kindergarten? For school? For friendships, later relationships? What we have planned or simply assumed for the life of our child - in sociology one speaks of a "timetable of life" - must be redesigned.
So, parents of intersex children face a lot of questions. What can help parents to cope well with this?
It helped the parents I interviewed to look for intersex people or other parents of intersex children. They need role models and want to know how other families with intersex children live. This way they can decide whether they want to do something similar or completely different. That helps the parents. Self-help groups are a good starting point for this. General advice centers have also been dealing more and more with the topic in recent years.
Parents of intersex children have to make some decisions - for example which gender to fill in...
What concerns parents when it comes to the entry in civil status - whether diverse, female, male or no entry - are the consequences that arise from this. Are all check-ups covered by health insurance - for example if the intersex person has a prostate but the entry is "female"? What about other rights or regulations where gender matters? Do I always have to "out" my child, for example at school or with other registrations?
So the parents have to "think" about the consequences of every decision.
Parents currently have to become experts - that's a huge task. There is also very little reliable knowledge about what is important when raising intersex children. How about pronouns? Should the child be given a name that is clearly male or female, or something more neutral? Is that rather bad or good - or even irrelevant? There is simply a lack of scientific knowledge about it. And so there is often a lack of knowledge from the other person, in the day care center or at school.
Until recently, intersex children have often undergone surgery to make their bodies better suited to the "male" or "female" category. Since May 2021, this must no longer happen without the consent of the children. Why are these surgeries so problematic?
The question can be turned around: Why should it be a problem if a body doesn't conform to the norm of "female" or "male"? The problem that affected families experience is social exclusion. But this is a social problem that cannot be solved medically. And: Such interventions violate human rights. If they are carried out without the informed consent of the children and young people, this encroaches on the right to physical integrity. After all, healthy bodies are medically intervened - with serious consequences.
What consequences could that be?
People who have been exposed to these serious interventions in the body can develop physical and mental ailments. For one thing, scar tissue can tear or grow together. It is also not as sensitive as intact tissue, which can be important for satisfying sexuality. On the other hand, these people have experienced transgressions that can destroy fundamental trust in parents, in medicine, but also in society. They are given the feeling that they had to be changed in order to be accepted. For this reason alone it is important that the law is implemented consistently.
Anike Krämer is currently researching as a research assistant at the Center for Gender Studies at the University of Paderborn. For her dissertation on the everyday experiences of parents of intersex children, she received second prize in the social sciences category of the German Study Prize 2021 of the Körber Foundation.
Further information on the subject of intersex is available via the Inter* portal of the Ruhr University Bochum and via the rainbow portal of the Federal Ministry for Family Affairs.
(This article was first published on Sunday, June 05, 2022.)