Our research shows that such is the power of the various beliefs attached to albinism that they limit the life potential of people with this genetic condition and often lead to their marginalisation or social exclusion (Baker, Lund, Nyathi and Taylor, 2010; Lund, Massah and Lynch, 2015). At the most extreme, these beliefs are manipulated for economic gain, leading to the attacks outlined above (Baker 2017).
This ESRC IAA funded project aims to enhance understandings of albinism in Malawi, to challenge prevailing associations of albinism with violence and human rights abuses, and to demystify the beliefs that underpin them. It will do so by foregrounding the voices and stories of people with albinism which are often not heard. It will ask how people with albinism in Malawi see themselves, what is important to them, what their aspirations are, and how they would like to be seen by others.
The project team is formed of Dr Charlotte Baker (Lancaster), Bonface Massah (Association of Persons with Albinism in Malawi - APAM) and Dr Patricia Lund (Coventry University).
The team will spend 10 days working together in Malawi, starting in Lilongwe for formal meetings with APAM and FEDOMA, before travelling on by road to the two communities in which we will work – a fishing community in a lakeside village in Mangochi and a farming community in Thyolo.
We will use the drawing of masks and informal semi-structured interviews to engage with people with albinism during our time in each location. Interviews will be conducted in Chichewa and recorded, transcribed and translated. Extracts will be curated into an interactive online gallery hosted on the Albinism in Africa website and will form the basis of a new resource for use by APAM in their advocacy work. At the conclusion of the project, APAM will feed back to the informants involved so that they are aware of how their contributions have been used.
Key Objectives:
Our key objective is to explore how people with albinism in Malawi see themselves and how they would like to be seen by others.
To do this, we will gather qualitative data via interviews, which will be recorded, transcribed and translated.
We will use the drawing of masks with small groups of people with albinism as a further means of expression and as a talking point.
We will use our time in Malawi to update our knowledge of initiatives in place to advocate for and support people with albinism and to identify gaps.
We will create an interactive online gallery, produce a hard copy resource for use in advocacy by APAM and disseminate key findings via social media.
We will produce a brief report for APAM and co-author an academic article for an international peer reviewed journal.
