Children with albinism in African regions: their rights to ‘being’ and ‘doing',

Anita Franklin, Patricia Lund, Caroline Bradbury-Jones, Julie Taylor

Research output: Contribution to journalArticle

8 Citations (Scopus)
79 Downloads (Pure)

Abstract

Background: Albinism is an inherited condition with a relatively high prevalence in populations throughout subSaharan 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.
Original languageEnglish
Article number18:2
Number of pages8
JournalBMC International Health and Human Rights
Volume18
Issue number2
DOIs
Publication statusPublished - 12 Jan 2018

Fingerprint

Albinism
Oculocutaneous Albinism
human rights
discrimination
disability
stigmatization
folklore
social process
ritual
everyday life
Witchcraft
Folklore
acceptance
Stereotyping
Skin
Africa South of the Sahara
Solar System
Human Body
Hair

Bibliographical note

This 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.

Keywords

  • Children with albinism
  • Africa
  • Human rights
  • Disability
  • Children’s rights
  • Barriers
  • People with albinism

ASJC Scopus subject areas

  • Social Sciences(all)

Cite this

Children with albinism in African regions: their rights to ‘being’ and ‘doing', / Franklin, Anita; Lund, Patricia; Bradbury-Jones, Caroline ; Taylor , Julie .

In: BMC International Health and Human Rights , Vol. 18, No. 2, 18:2, 12.01.2018.

Research output: Contribution to journalArticle

@article{b58affafaf524ffd858856f1072224b9,
title = "Children with albinism in African regions: their rights to ‘being’ and ‘doing',",
abstract = "Background: Albinism is an inherited condition with a relatively high prevalence in populations throughout subSaharan 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.",
keywords = "Children with albinism, Africa, Human rights, Disability, Children’s rights, Barriers, People with albinism",
author = "Anita Franklin and Patricia Lund and Caroline Bradbury-Jones and Julie Taylor",
note = "This 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.",
year = "2018",
month = "1",
day = "12",
doi = "10.1186/s12914-018-0144-8",
language = "English",
volume = "18",
journal = "BMC International Health and Human Rights",
issn = "1472-698X",
publisher = "BioMed Central",
number = "2",

}

TY - JOUR

T1 - Children with albinism in African regions: their rights to ‘being’ and ‘doing',

AU - Franklin, Anita

AU - Lund, Patricia

AU - Bradbury-Jones, Caroline

AU - Taylor , Julie

N1 - This 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.

PY - 2018/1/12

Y1 - 2018/1/12

N2 - Background: Albinism is an inherited condition with a relatively high prevalence in populations throughout subSaharan 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.

AB - Background: Albinism is an inherited condition with a relatively high prevalence in populations throughout subSaharan 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.

KW - Children with albinism

KW - Africa

KW - Human rights

KW - Disability

KW - Children’s rights

KW - Barriers

KW - People with albinism

U2 - 10.1186/s12914-018-0144-8

DO - 10.1186/s12914-018-0144-8

M3 - Article

VL - 18

JO - BMC International Health and Human Rights

JF - BMC International Health and Human Rights

SN - 1472-698X

IS - 2

M1 - 18:2

ER -