Tjitske De Groot - Vrije Universiteit Brussel, Belgium
International conference on albinism: Different shades of white
6 til 8 September 2018 an international conference took place at the Johannes Gutenberg University in Mainz, Germany, titled ‘Different shades of white: interdisciplinary perspectives on the albinotic body’. The conference focused on the variety of ways in which people perceive people with albinism from a multitude of backgrounds and fields of study.
People joining the conference presented papers on albinism from historical, social, aesthetic and political perspectives.People from all over the world came to join the conference including people from activist groups in Africa, who offered an insight in the situation for people with albinism in their home country.
The conference included two keynote lectures. The first was given by Ikponwosa Ero, the United Nations Independent Expert on the enjoyment of human rights by persons with albinism. Drawing on an intersectional approach, she emphasized how persons with albinism face discrimination on grounds of disability, as well as colour. In the second keynote lecture, Dr Charlotte Baker from Lancaster University reflected on the changing cultural representations of persons with albinism and the influence these representations exert.
Next to the conference room a photo exhibition was presented, with pictures from photographers who have used the aesthetic potential of albinism. The organisers accompanied the exhibition with the following question: Do these types of pictures ‘help’ people with albinism through renegotiating and elevating their position in society, or do these visual portrayals strengthen the reproduction of people with albinism as being special and different, resulting in more stereotypes about people with albinism?
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In my research on interventions to reduce the discrimination related to people with albinism in Tanzania I observe different types of interventions. This way I can learn more about the components of interventions that make the intervention effective. I was invited by Under The Same Sun, an organisation that promotes the wellbeing of people with albinism in Tanzania through education and advocacy, to come along on their “Haki Yetu (Our rights)” tour. On this tour they visit primary schools and communities to raise awareness of albinism. On their tour they perform a theatre play, I would say an ‘interactive theatre play’ as it is not just a play, it requires the audience to intervene in the situation that is being acted on stage.
The play consists of four parts in which several situations are acted out. The play starts with a mother and her daughter, the daughter is on her way to school and is waiting to be picked up by her schoolmate who has albinism. However, if her father hears that she will be walking and talking together with a schoolmate with albinism he is not happy. He complains to his daughter: “You are not allowed to do this! This will bring bad fortune!”. The daughter and mother are trying to convince him that a person with albinism is a human being like them. They ask the audience for help. Students or community members will step in and often they explain very passionately to the father why a person with albinism is like them.
In the last scene of the theatre play two ‘bad guys’ are conspiring to attack someone with albinism. The audience of the play is reacting fiercely and is trying to stop the people in the play from doing this. I was very surprised to see the responses of the audience to the play, people were very passionately trying to change the way that the actors in the theatre play are thinking about people with albinism. The responses of the audience really came from the audience themselves: they were not being taught how to think about people with albinism by the play, but they were teaching themselves through the play. I was afraid children might not dare to step in a play by adults, but in the last scene the children even sometimes physically stopped the ‘bad guys’ from continuing with their plans.
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