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Children with albinism in African regions: their rights to ‘being’ and ‘doing’
BACKGROUND: Albinism 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...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2018
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767025/ https://www.ncbi.nlm.nih.gov/pubmed/29329540 http://dx.doi.org/10.1186/s12914-018-0144-8 |
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author | Franklin, Anita Lund, Patricia Bradbury-Jones, Caroline Taylor, Julie |
author_facet | Franklin, Anita Lund, Patricia Bradbury-Jones, Caroline Taylor, Julie |
author_sort | Franklin, Anita |
collection | PubMed |
description | BACKGROUND: Albinism 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. DISCUSSION: There 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. CONCLUSION: 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. 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. |
format | Online Article Text |
id | pubmed-5767025 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-57670252018-01-17 Children with albinism in African regions: their rights to ‘being’ and ‘doing’ Franklin, Anita Lund, Patricia Bradbury-Jones, Caroline Taylor, Julie BMC Int Health Hum Rights Debate BACKGROUND: Albinism 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. DISCUSSION: There 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. CONCLUSION: 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. 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. BioMed Central 2018-01-12 /pmc/articles/PMC5767025/ /pubmed/29329540 http://dx.doi.org/10.1186/s12914-018-0144-8 Text en © The Author(s) 2018 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
spellingShingle | Debate Franklin, Anita Lund, Patricia Bradbury-Jones, Caroline Taylor, Julie Children with albinism in African regions: their rights to ‘being’ and ‘doing’ |
title | Children with albinism in African regions: their rights to ‘being’ and ‘doing’ |
title_full | Children with albinism in African regions: their rights to ‘being’ and ‘doing’ |
title_fullStr | Children with albinism in African regions: their rights to ‘being’ and ‘doing’ |
title_full_unstemmed | Children with albinism in African regions: their rights to ‘being’ and ‘doing’ |
title_short | Children with albinism in African regions: their rights to ‘being’ and ‘doing’ |
title_sort | children with albinism in african regions: their rights to ‘being’ and ‘doing’ |
topic | Debate |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767025/ https://www.ncbi.nlm.nih.gov/pubmed/29329540 http://dx.doi.org/10.1186/s12914-018-0144-8 |
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