Reading gender through lived experiences of albinism in South Africa : a feminist analysis

Abstract

Albinism caused by a deficiency of melanin in the body is a non-contagious genetic condition. Because of the paleness of the skin and eyes, persons with albinism experience sensitivity to the sun’s ultraviolet radiation and visual impairment. Recently, albinism has received more global attention by human rights advocates and researchers and nationally in South Africa by democratic inclusive policies because of the social and physical stigmatisation that people with albinism suffer. Studies of mothers with albinism and/or who have a child with albinism have also been a recent focus. While this work importantly documents the gender inequality they experience as a social determinant of health and useful implications for social and health policy, we take a different approach. Expanding this research, we draw on qualitative interviews conducted in South Africa with women and mothers impacted by albinism and healthcare and social work professionals to understand how albinism can inform social readings of gender. Applying a feminist theoretical framing to our analysis of participant experiences of albinism, we critically discuss gender as it relates to parenting, other intersecting social structures such as patriarchy and belief systems, and how inequality brought about by gender and albinism can be collectively challenged.