Abstract
BackgroundAlbinism is an inherited condition with a relatively high prevalence in populations throughout sub-Saharan Africa. People with oculocutaneous albinism have little or no pigment in their hair, skin and eyes; thus they are visually impaired and extremely sensitive to the damaging effect of the sun on their skin. Aside from the health implications of oculocutaneous albinism, there are also significant sociocultural risks. The impacts of albinism are particularly serious in areas that associate albinism with legend and folklore, leading to stigmatisation and discrimination. In regions of Africa those with albinism may be assaulted and sometimes killed for their body parts for use in witchcraft-related rites or to make ‘lucky’ charms. There is a dearth of research on the psychosocial aspects of albinism and particularly on how albinism impacts on the everyday lives of people with albinism.DiscussionThere is a growing recognition and acceptance in Africa that people with albinism should be considered disabled. Thomas’s social-relational model of disability proposes it is essential to understand both the socio-structural barriers and restrictions that exclude disabled people (barriers to doing); and the social processes and practices which can negatively affect their psycho-emotional wellbeing (barriers to being). In this article, we combine a social model of disability with discussion on human rights to address the lacuna surrounding the psychosocial and daily experiences of people with albinism.ConclusionThrough using this combined framework we conclude that the rights of people with albinism in some regions of Africa are not being enacted. Our debate highlights the need to develop a holistic concept of rights for children and young people with albinism which sees human rights as indivisible. We illuminate some of the specific ways in which the lives of children with albinism could be improved by addressing ‘barriers to being’ and ‘barriers to doing’, at the heart of which requires a shift in attitude and action to address discrimination.
Highlights
Albinism is an inherited condition with a relatively high prevalence in populations throughout subSaharan Africa
Through using this combined framework we conclude that the rights of people with albinism in some regions of Africa are not being enacted
Our debate highlights the need to develop a holistic concept of rights for children and young people with albinism which sees human rights as indivisible
Summary
Human rights and disability Disability refers to negative interactions between people with impairments and the internal and external environment [11]: Disability is the umbrella term for impairments, activity limitations and participation restrictions, referring to the negative aspects of the interaction between an individual (with a health condition) and that individual’s contextual factors (environmental and personal factors). Some families report sending their children away to boarding schools, camps or relations in safer areas [24] Such media attention has raised awareness of the need to address the challenges facing PWA, including stigma and the lack of access to education and health services [24]. Access to appropriate educational support, including teachers with the knowledge of how to assist children with albinism has been recognized as important in enhancing the self-esteem of these children, promoting their personal development and growth and creating a sense of belonging [1]
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