Tjitske de Groot (Vrije Universiteit Brussel, Belgium)

Breaking the myth of albinism: Developing and evaluating stigma reduction strategies

I am a doctoral student at theVrije Universiteit Brussel in Belgium, undertaking a research project ‘How to break the myth of albinism?’, which focuses on the development and assessment of albinism-related stigma reduction interventions in Tanzania.

The primary objectives of the project are to evaluate and improve interventions that aim to reduce stigmatization/discrimination of people with albinism so that organisations and government can implement these findings in their work.

I have encountered many different explanations for albinism during my work in Tanzania. Witchcraft beliefs surrounding albinism are multiple, and mostly come down to the belief that people with albinism are not human beings. They are thought to be ghosts, their body parts are believed to provide good fortune.

What causes these explanations is misunderstanding about a condition that is so obvious: having a white skin in a community where everyone, including your parents, have a darker skin colour. As one of my informants told me, “Ok, initially I knew that I am white, I am different from that people because I am white, I am born white, but I think it took some years to realise that this whiteness is because of albinism”.

My research has focused in part on explanations of albinism and the cultural contexts surrounding the stigmatization of people with albinism in Tanzania. However, the main focus of my research is on developing tools to measure these attitudes, and on developing and evaluating stigma reduction strategies.

Among other topics, I researched how people with albinism feel to present about their conditions in presentations aimed to inform the community about albinism and change their attitudes. According to the presenters with albinism their presentations are so effective because they show people a real example of a person with albinism who is able to give these presentations. The presentation gives them a platform to explain that they have the same abilities as everyone else: they can be successful in education, can have jobs, can get married and have a family.