SCIENCE, ART, COMMUNITY

Building Interactive Understanding of Albinism in Tanzania

By Standing Voice

August 2^nd, 2017

Over the last two years, Standing Voice has led a groundbreaking project to transform perceptions of albinism in communities across Tanzania. Executed with the support of the Wellcome Trust, the project has brought together scientists, artists, and advocates from across the UK and Africa to showcase the science of albinism in a socially relatable way.

The project began in earnest in June 2016 in Bagamoyo, a small fishing town on the Tanzanian coast. Our core team included Dr Patricia Lund, a leading geneticist and albinism specialist from Coventry University, UK; instructors and students from the Bagamoyo Creative Arts Institute (TaSUBa), including John Sagatti and Melkiades Banyanka as directors, and Chiku Robert and William Mseti as performers; students from the African Institute for Mathematical Sciences (AIMS) Tanzania, under the instruction of Dr Mark Roberts; Peter Ogik, a Ugandan musician with albinism and the Chairman of the Source of the Nile Union of Persons with Albinism (SNUPA); John Chiti, a Zambian pop star with albinism and the Director of the Albino Foundation of Zambia; and Sixmond Mdeka, a renowned Tanzanian reggae artist and activist with albinism.

Together, this international coalition of partners devised a multidisciplinary strategy of public engagement: the scientists and statisticians in our team provided the expertise to elucidate the science of albinism as a genetically heritable condition. Meanwhile internationally renowned musicians with albinism worked with TaSUBa students and instructors to convert these genetic concepts into songs and performances that would later be deployed in community settings.

Together, this team built a core narrative capturing the fictional experiences of one man with albinism, abandoned at birth by his father and rejected in adulthood by the parents of his girlfriend. Participants visited community locations and played out these scenes of abandonment through spontaneous pop-up performances. Passersby were immersed as contributors to these unfolding dramatic scenes, and their unfiltered reactions—empathy, indifference, rage, shock—were acknowledged and incorporated, sometimes redirecting the narrative. What resulted was by turns encouraging and distressing; some shouted their support for the protagonist, others yelled abuse. Either way, audiences were empowered to develop their own solutions to the dilemmas being depicted: How should the man respond? Should he be rejected or accepted by the family of his girlfriend? The entire range of responses was captured on paper by the TaSUBa students—notably Theophil Reginald—who created powerful drawings depicting events as they played out. TaSUBa's Christian Maganga meanwhile filmed rehearsals and performances on site.

Building on the success of this pilot in Bagamoyo, the team met again in the autumn of 2016 on Ukerewe Island in the heart of Tanzania’s Lake Victoria. The group convened at Standing Voice’s Umoja Training Centre to review (and improve) their work from the summer, before touring their performances across the island in an endeavour to change misconceptions and challenge stigma.

Fast-forward to June 2017, and our team was back on Ukerewe for the latest instalment of this transformational project. This time, we trained local people with albinism and their families—ordinary villagers from across Ukerewe—to be the deliverers of engagement, and to use their own experiences as a foundation for performance development. What ensued was a widening (and deepening) of our source material to encompass real stories and situations inspired by the lives of our contributors. Training villagers to understand the science of albinism, and to engage their own communities in productive exploration of that science, has moreover produced a trail of ambassadors and change-makers inside the Ukerewe community itself: a movement that gains momentum with every mind that is changed.

We have been delighted to share the continuing success of this project with the Wellcome Trust at various international appointments throughout 2017. In March, our Operations Manager Alex Magaga visited Naivasha, Kenya, to attend and present at a three-day International Engagement Workshop delivered by the Trust. In June, our Managing Director Jon Beale and Communications and Fundraising Coordinator Sam Clarke were invited to deliver a showcase of the project at the Wellcome headquarters in London. Jon reflected on the journey of the project from inception to implementation, while Sam came fresh from the field with the latest updates on performance development and delivery in Tanzania. We enjoyed further opportunities to platform the project at the recent London Symposium on Albinism in Africa at the University of Westminster.

The project has already catalysed enduring change in Tanzania: in the wake of their exposure to science, communities have been armed with the knowledge to defeat stigma wherever it occurs. The act of performance has been shown to trigger a profound transformation of norms, with participants and audiences voicing improvements in their understanding of albinism and appreciation for the rights of persons with albinism as a result. (The play’s denouement was positive in virtually all cases, with bystanders widely advocating for the protagonist to be accepted by his girlfriend’s family.) With the support of the Wellcome Trust, we have produced a blueprint of community engagement that can be scaled and replicated across Tanzania and beyond.

Together, we can harness the power of performance to make the persecution of people with albinism no more than a memory.

With sincere thanks to our partners Dr. Patricia Lund of Coventry University (lead partner); Mr. Melkiades Banyanka, music teacher and administration coordinator at TaSUBa and co-lead performance director; Mr. John Sagatti, drama and music instructor at TaSUBa and co-lead performance director; and finally Dr. Mark Roberts, specialist in statistics and mathematical science at AIMS Tanzania (African Institute for Mathematical Sciences).