Barriers to access: why are some visually impaired young people with albinism in Malawi not attending school? Overview & guideline

Résumé de l'auteur

Albinism is an inherited condition where very little melanin pigment is produced, resulting in pale skin that is very sensitive to the sun and poor eyesight. In African populations, those affected look visibly different from their dark skinned peers, which can lead to ostracism, bullying and social isolation. This study explored the lives of children and young people with albinism along the lakeside and in the mountainous northern part of Malawi. It revealed how albinism affects the whole family, not only the person affected, and how they can be considered as sub-human and ‘useless’, although attitudes within families were generally positive and supportive. Acceptance by the father was a key factor, in terms of both financial and emotional support. The importance of parental choice in the mode of education of children with albinism was a common theme; some children were happy boarding at Resource Centres attached to mainstream schools which provide specialist care whereas others preferred to remain at home, within their own communities. The security of those with albinism was the predominant concern for families, constantly fearful of attack as they are targeted for their body parts for use in rituals and ‘good luck’ charms. The outcomes of the study have been used to devise a set of guidelines to recommend to government and other agencies, to improve the safety, access to health and education and social acceptance of these families. Advocacy posters have been used to raise public awareness and promote respect for those with albinism.

Commentaire du Centre Ressources

Les documents présentés dans cette notice ont été produits dans le cadre de la recherche « Barriers to access: why are some visually impaired young people with albinism in Malawi not attending school? ».

Un guide est disponible, dans lequel sont présentées les différentes bonnes pratiques pour l’ensemble des acteurs afin de favoriser l’inclusion scolaire des personnes atteintes d’albinisme.

Le rapport de recherche, quant à lui, présente des entretiens avec des enfants atteints d’albinisme et il permet de comprendre comment les chercheurs ont élaboré les recommandations.