Children with albinism in African regions: their rights to 'being' and 'doing'.
Children with albinism in African regions: their rights to 'being' and 'doing'.
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DOI：
10.1186/s12914-018-0144-8
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发表时间：
2018-01-12
影响因子：
3
通讯作者：
Taylor J
中科院分区：
文献类型：
--
作者：
Franklin A;Lund P;Bradbury-Jones C;Taylor J
白化病是一种遗传性疾病，在整个撒哈拉以南非洲的人群中发病率相对较高。患有眼皮肤白化病的人的头发、皮肤和眼睛中很少或没有色素；因此，他们的视力受损，对太阳对皮肤的破坏性影响极其敏感。除了皮肤白化病对健康的影响外，还存在重大的社会文化风险。在将白化病与传说和民间传说联系在一起的地区，白化病的影响尤其严重，导致污名化和歧视。在非洲的一些地区，白化病患者可能会受到攻击，有时还会被杀害，因为他们的身体部位被用于与巫术有关的仪式或制造“幸运”护身符。目前缺乏关于白化病的社会心理方面的研究，特别是关于白化病如何影响白化病患者日常生活的研究。在非洲，人们越来越认识到并接受白化病患者应被视为残疾人。托马斯的残疾社会关系模型提出，必须理解排除残疾人的社会结构障碍和限制（行为障碍）；以及会对他们的心理和情感健康产生负面影响的社会过程和实践（存在障碍）。在本文中，我们将残疾的社会模式与人权讨论相结合，以解决白化病患者的社会心理和日常经历方面的空白。通过使用这一综合框架，我们得出结论，在非洲一些地区，白化病患者的权利没有得到落实。我们的辩论突出表明，有必要为患有白化病的儿童和青年制定一个将人权视为不可分割的整体权利概念。我们阐明了通过解决“生存障碍”和“行动障碍”来改善白化病儿童生活的一些具体方式，其核心是需要转变态度和行动，以解决歧视问题。
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. 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. 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.
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影响因子：
4
作者：
Lund, PM
通讯作者：
Lund, PM
影响因子：
1.7
作者：
Phatoli R;Bila N;Ross E
通讯作者：
Ross E
影响因子：
1
作者：
Burke, Jean;Kaijage, Theresa J.;John-Langba, Johannes
通讯作者：
John-Langba, Johannes
DOI：
10.1007/978-3-319-42488-0_17
发表时间：
2016-01-01
期刊：
DISABILITY IN THE GLOBAL SOUTH: THE CRITICAL HANDBOOK
影响因子：
--
作者：
Berghs, Maria;Kabbara, Nawaf
通讯作者：
Kabbara, Nawaf
影响因子：
1
作者：
Brown, Kate
通讯作者：
Brown, Kate