Identifying family and community-based care solutions for children with albinism

Baker, Charlotte and Miti-Drummond, Muluka-Anne and Punaks, Martin (2025) Identifying family and community-based care solutions for children with albinism. International Journal of Children's Rights, 33 (2). pp. 265-290. ISSN 0927-5568

Text (Children_with_Albinism_resubmission)
Children_with_Albinism_resubmission.pdf - Accepted Version
Available under License Creative Commons Attribution.
Download (328kB)

Abstract

In sub-Saharan Africa, discrimination and stigmatisation, lack of access to appropriate health services and inclusive education, the risk of ritual attacks, and the perceived burden of care, mean that some children with albinism are being placed in residential care or boarding schools by the State or by their families, purportedly for their care and protection. The intersection between albinism and care is an under-researched area. Whilst there is a wealth of information available in the respective areas of ‘albinism’ and ‘care’, little has been published on how the two areas link together. Furthermore, the intersection between the two areas inevitably also overlaps with health, education, social protection, justice and disability rights, making it a rich and expansive area for research. Equally, as Franklin (2018) remarks, there has been limited critical attention to the experience and perspectives of children with albinism, and limited understanding of their lives in an African context and a lack of attention given to the particular needs of this group of children means that interventions to better support, empower and protect them remain elusive. Our article responds to the particular situation of children with albinism who are vulnerable to attack / ritual abuse in sub-Saharan Africa. It considers how children should best be cared for in light of the recommendations of the UN Guidelines for the Alternative Care of Children and the UN Convention on the Rights of Persons With Disabilities, while also considering alternative provision.