Standing Voice is an organisation which works to support people with albinism in Tanzania. This article explores how one of their projects, which communicates the facts about albinism through interactive performances, navigates the cultural complexity surrounding albinism in Tanzania.
Caption: Alex Magaga from Standing Voice explains the project, the cultural context and the project outcomes.
Albinism is surrounded by myth and misconception in Tanzania and, as a result, those with albinism suffer abuse and discrimination. The average monthly income of a person with albinism is $41 a month, compared to a national average of $76. In ten years there have been 76 reported murders of persons with albinism, 72 survivors of attacks, one abduction and 21 grave violations in Tanzania, and yet no specific legislation targeting the protection of persons with albinism exists.
These attacks are largely the result of ignorance about the cause of albinism. Albinism is associated with witchcraft in Tanzania and it is believed that to have a child with albinism is a sign of a wrong doing in that child's ancestral line. It is also believed that taking a body part of someone with albinism to a witchdoctor will generate wealth for you and your family which has led to the mutilations and grave robberies. These beliefs must be confronted sensitively, and replaced with facts about albinism, if those living with the condition are to lead a fair life.
Aside from discrimination and violence, people with albinism are also at risk of health issues with a 23% presentation of skin cancer amongst people with albinism in some locations of Tanzania plus issues with vision and a much lower life expectancy than average.
The aim of this particular project, which is complemented by education, sponsorship and community advocacy projects run by the organisation, is to raise awareness and separate the truth about albinism from the myths and rumours that are prevalent. It does so by combining science and art.
The project consists of two workshops that brought together scientists and artists to generate ideas for interactive performances about the genetic origins of albinism. This included international experts on the science of albinism and artists from Tanzania, Uganda and Kenya. By sharing their learning and expertise they were able to build a mutual understanding about the genetics of albinism and the best cultural ways to engage communities in these countries with it.
The artists refined these interactive performances and performed them without warning in communities where stigma is known to be high. People are drawn in by the music used in the performance and then are engaged with interactive activities about albinism grounded in science. The performances include call-and-response songs and a ‘game of chance’ where juggling black and white balls demonstrates the genetic game of chance behind albinism and that it is the result of each parent having a recessive albinism gene. The latter in particular is an important tool in the cultural context where often it is the wife who is blamed and ostracised when a child with albinism is born.
- Training artists proved effective and artists became powerful engagers of their society
- Clear and simple concepts worked best (e.g. ‘the game of chance’)
- Interaction was key and resulted in positive testimony from audiences and richer follow-on discussions
- Collaborations between artists and scientists require more time for knowledge transfers than you may think
- Making the engagement entertaining and fun led to more people staying, dancing, singing and discussing
The content on this page forms part of the online report for the 2017 International Engagement Workshop "It's Complicated: navigating scientific complexity in public and community engagement". To read more about social and cultural complexity in engagement visit the social and cultural complexity theme from the workshop. To read more about the full workshop and access the rest of the report including video presentations, discussion summaries, and tools, visit the workshop page.
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