Lived Experiences of Persons With Albinism in Lilongwe District, Malawi

Abstract

Albinism is a genetic condition that is inherited from both parents due to a lack of or the complete absence of melanin in the bodies of persons with albinism (PWA). In Malawi, like any other country, persons with albinism are normally characterized by differences in skin and hair color, in addition to the wobbling of the eyes. This often leads to negative treatment from their family, the community and society. The lack of melanin and its accompanying effects limit their functionality because when exposed to the sun and strong light, some become short-sighted and are more prone to skin cancer and related lesions. This study examines the lived experiences of persons with albinism in Lilongwe District, Malawi, in order to identify the challenges that they face as well as their coping mechanisms. This is to ascertain recommendations in order to improve their living status. The study adopted a qualitative design and selected thirty participants from both rural and urban areas. The participants included persons with albinism and key informants from the Association of People with Albinism in Malawi (APAM), Kanengo in the Protection of Rights of People with Albinism (KAPRA) and Musical Crossroads – Malawi (MCM) from Lilongwe District. The data was collected through face to face in-depth interviews as well as focus group discussions. The data was subsequently analyzed using Van Manen’s (1990) six steps of phenomenological analysis. The findings revealed that PWA encounter financial challenges because of frequent poor academic attainment which limits their employability. Because of the economic hardship, their health is compromised as they do not have the money needed to access proper medical care for their eyes and skin. These medical services are only available in the major hospitals in the cities. Considering this, the study recommends the provision of economic empowerment in the form of vocational training, donations and soft loans to aid these individuals when they are seeking to establish businesses that will allow them to work in the shade. This will help to boost their productivity and self-reliance.