A Comparative Analysis of the Critical Resilience and Gender Equity of Mothers Impacted by Albinism: Promising Practices From Tanzania and South Africa.

Résumé

BACKGROUND: Women bear the brunt of human rights violations faced by persons with albinism, especially in sub-Saharan Africa. In addition to insufficient access to skin and eye care, increased rates of skin cancer, stigma and discrimination, and threats of mutilation and murder as they are reportedly trafficked for economic gain, they face heightened gender-based violence linked to misbeliefs about albinism. This study explored through a human rights lens the resilience of mothers affected by albinism, at the intersection of gender, colorism, and religion in Tanzania and South Africa.METHODS: The critical ethnography involved participant observation, interviews, and sharing circles with 97 participants, including mothers and key informants such as albinism advocates, health and social workers, community leaders, and policy makers. In Tanzania, we conducted fieldwork in Mwanza and Dar es Salaam; in South Africa, in the provinces of Northern Cape and Gauteng. We present a comparative analysis of the two countries.RESULTS: The study shows that critical resilience comes about through social relationships, collective practices, and identities present in communities (local and national). We identified six promising practices that created conditions to strengthen gender equity: In Tanzania, peer support groups build capacity as human rights defenders; international non-governmental organizations (NGOs) fill gaps and advocate; and faith leaders act as advocates. In South Africa, progressive health system and policy frameworks, genetic counseling and health education equip families, and traditional healers act as advocates.CONCLUSION: The promising practices distilled from the Tanzanian and South African cases should be considered for broader uptake, importantly with local adaptations.