Mothering, albinism, and human rights in Africa:  Mapping patterns of resilience at the juncture of gender, colourism, and religion

Funding:  Social Sciences and Humanities Research Council (#435-2019-1120) 2019-2023

Mothers impacted by albinism in Africa face extraordinary circumstances, both as mothers of children with albinism and mothers who themselves have albinism. Albinism is a non-contagious, recessive, genetic condition that causes a decrease or absence of melanin in the skin, hair, and eyes. Not only do persons with albinism face skin cancer and low vision because of this genetic condition; they deal with discrimination and stigma on account of their physical  difference. In certain regions, deeply rooted spiritual and cultural beliefs about evil and misfortune persist, such that persons with albinism are ostracized and excluded. Even more ominous are the witchcraft-related harmful practices of violence and killing of persons with albinism for their body parts to be used in the preparation of “magic” medicines. 

Women and girls impacted by albinism are particularly vulnerable to human rights violations as a result of social constructions of gender that enable multiple and intersecting forms of stigma, discrimination, violence, and inequity. The purpose of this 4-year ethnographic study is to explore through a human rights lens the resilience of mothers affected by albinism, at the intersection of gender, colourism and religion, in Tanzania, South Africa, and Ghana. Specific attention will be directed towards the protection of the human rights of mothers impacted by albinism. The project involves ethnographic research in Tanzania, South Africa, and Ghana with mothers impacted by albinism, and key stakeholders including policy-makers, educators, healthcare providers, social workers, and faith leaders.  In each country, we are partnering with local albinism organizations. The project is funded for 4 years (2019 – 2023).