Beyond Visibility: Navigating the Educational Journeys for Students with Albinism in Kwazulu-Natal, South Africa

Albinism is an inherited condition affecting individuals across all ethnicities globally, but it is especially prevalent in sub-Saharan Africa. Those with oculocutaneous albinism have minimal or no pigment in their hair, skin, and eyes, which results in visual impairments and increased sensitivity to sunlight. Despite medical advancements in understanding albinism, individuals often face significant challenges, including discrimination and stigma in educational environments. This paper reports of the findings of my PhD study which explored the experiences of students with albinism in primary and secondary schools in KwaZulu-Natal, South Africa. Utilising a qualitative, interpretive, phenomenological approach, the study employed semi-structured interviews and focus group discussions to capture the educational journeys of students and explore how they navigate their personal and social worlds within mainstream and special schools, as well as the broader societal implications of their condition. The findings reveal a paradoxical existence for these students, characterised by being highly visible due to their physical appearance but often rendered socially invisible. Students reported varied educational experiences, with many encountering bullying, name-calling, and emotional abuse from both peers and educators. The existence of myths and stereotypes regarding albinism was also prevalent. In mainstream schools, students tended to exclude themselves from other students to avoid discrimination and stereotypes surrounding their condition. Moreover, teachers in mainstream schools often lack the training to support these students effectively. Most students felt safer in special schools, as these environments were perceived as more accommodating. Mainstream school environments were frequently ill-equipped to accommodate their visual impairments, exacerbating feelings of isolation and academic challenges. The study highlights the need for greater awareness and targeted interventions within educational systems to create inclusive environments for students with albinism. The findings were integrated to inform the development of a multi-sectoral framework to address the challenges that students with albinism face.