Where are all these people?

Despite the fact that substantial numbers emerge with each definition, intersex people are hardly visible in society. Scientists who do research into intersex variations have great difficulty in getting in touch with intersex people. Usually no more than a few dozen people participate in such research and they often have different diagnoses, making the research results difficult to interpret.

The reason why so few people can be found has to do with the taboo that still rests on the subject. In their youth they were often told not to talk about it to anyone, so most people make themselves ‘invisible’ once they become adults. That taboo is still there. For example, a mother of an intersex child sighed during a meeting of fellow peers: ‘if only my child had ADHD or Asperger’s, I would be able to talk about it with other mothers in the schoolyard’.

We are not only invisible to doctors and researchers. We are also often untraceable to other intersex people – the patient & fellow peer organizations have far fewer members than the number of diagnoses would suggest. People who do become members of a fellow peer organization usually do not come out with their story, despite the fact that quite a few European societies are reasonably tolerant towards intersex.