Lifelong Agony Among People with Albinism (PWA): Tales From Lake Zone in Tanzania

Abstract

A qualitative study conducted in the northern regions surrounding Lake Victoria in Tanzania, reveals that, People with Albinism (PWA) have been harshly treated for long. Mothers were required to terminate lives of their abnormally born infants (like albino infants). Besides lifelong challenges due to albinism condition, people searched for their body parts even after "being hidden" in unmarked graves after their deaths. Beliefs fuelling such ill-treatment on PWA are deep rooted and intertwined among peoples' mind under influence of cultural beliefs existing for several decades. Proper approach should be designed for permanent solution of the long existed inhumane practices against People with Albinism. 330According to Witchcraft and Human Rights Information Network (2016), murders of People with Albinism (PWA) is part of a larger global problem where violence is perpetuated due to beliefs in witchcraft, juju, muti or spirit possession. It is almost always that, the most vulnerable groups are children, women, the elderly and disabled who are the most targeted. The Guardians (2019), elaborate that, myths and misperceptions surrounding albinism in Tanzania are too numerous to count. This paper presents tales from informants on beliefs and practices related to people with albinism in the study regions. MethodologyThis study aimed at exploring and understanding more on beliefs and practices related to people with albinism. Due to sensitivity of the study, qualitative methods were used in data collection. Interviews with key informants were conducted. This study was in search of in-depth knowledge and experiences on a sensitive issue. The methods enabled the study to learn a lot from interviewees concerning their views and knowledge on albinism.Key informants interviews aimed at creating comfortable environment for them to talk openly and freely than if they had been in a group due to sensitivity of the issue studied. Selection of key informants for interviews depended on the quality of respondents selected. Collected data were interpreted and organized into themes considering words, meanings, and messages that were communicated. Tales on Practices and Beliefs Related to PWAFrom interviews conducted, below are narrated issues concerning the fate of People with Albinism. Uncelebrated births of Children with AlbinismAccording to Van Beek (2002), birth is both a biological experience and a cultural construct. It is the event through which societies do celebrate the rebirth of their future. However, births of children with albinism were unwelcomed in most African culture (Barnes, 1985). , elaborate that;-Babies born with the inherited condition (albinism), resulting in reduced melanin pigment in their hair, skin and eyes, are vulnerable in multiple ways in Africa: as children, as visually impaired, as socially ostracised, isolated and excluded, and as potential victims of witchcraft-related violence targeted for their body parts for use in 'lucky' charms thought to bring good fortune.Children born with abnormality were see...

Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project

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