Citation

Taylor J, Bradbury-Jones C, Lund P. Child Abuse Rev. 2019; 28(1): 13-26.

Copyright

(Copyright © 2019, John Wiley and Sons)

DOI

10.1002/car.2549

PMID

unavailable

Abstract

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. This conceptual review summarises the scarce research on this topic within an integrated framework of otherness (highlighting the ways in which these children differ from others in their group and how this is perceived by themselves and others), watchfulness (the consequences and impact of this very visible difference on families and communities) and agency (what such children themselves and other people can do to respond to these abuses of human rights). The paucity of information on the lives of children with albinism in Africa limits the development of appropriate interventions to support, empower and, most importantly, protect them at this time of danger in the region. This review proposes a conceptual model to act as a platform for research on which to build and enhance our understanding of the lives of children with albinism in sub-Saharan Africa. 'This conceptual review summarises the scarce research on this topic within an integrated framework of otherness…, watchfulness… and agency' Key Practitioner Messages Mutilation and killing of people with albinism, particularly children, have increased over recent years. Very little is known about the physical and psychosocial issues facing children with albinism in the context of threats of assault and attack. Children with albinism are seen as 'other', with the violent context making them and their families watchful and vigilant. This threatens their agency and safety.

Language: en

Keywords

child abuse; conceptual review; oculo-cutaneous albinism; sub-Saharan Africa; witchcraft-related violence and abuse