International Albinism Awareness Day 2019 – Interview
13 June 2019
13 June is commemorated annually as International Albinism Awareness Day (IAAD) with the aim of raising awareness concerning the particular challenges faced by people with albinism (PWA) across the globe. As is often the case when it comes to vulnerable and marginalised groups, their causes are championed by people who are knowledgeable on their issues and may or may not be their allies. More often than not, members of the disenfranchised are not the forefront of movements that speak particularly to their access to human rights. Unfortunately, this is also true for PWA. I had a conversation with woman with albinism to discuss, and learn, about PWA and the state of their human rights experience, to gain a nuanced understanding from someone for whom albinism is a lived experience.
Nodumo Ncomanzi is a Communications Officer for the United Nations Mandate on Albinism, outside of that, she runs her own creative consulting firm. From my limited interaction with her on social media, she is more than just her professional occupation and is a fierce advocate for herself - a woman with albinism - and other people who like her, have had to endure the discrimination, stigma and exclusion that attaches to the colour of her skin.
When asked what she wants people to know/understand about PWA, Ncomanzi’s response is simple, “PWA are everyday people. We don’t just exist under people’s gaze of amazement, amusement, suspicion, superstition.” PWA exist outside of all prejudice, outside of beauty pageants which, whilst laced with good intentions, have little impact in effecting actual social change, or even IAAD. Allocating one day a year is good, but in the grander scheme of things, a blip on the radar. She believes that normalising PWA is the missing key, particularly on the African Continent. South Africa is no stranger to violence against PWA, where they are hunted and killed or dismembered for good luck, or sexually abused to heal HIV/AIDS. The list goes on. This violence is a direct result of cultural interpretation of the genetic and hereditary condition.
PWA are erroneously identified as “people living with albinism”. Ncomanzi says this misnomer should be replaced with “people with albinism” because the term “living with” is typically associated a health problem and usually one that one accrued/developed after birth. “Something that they have to live with as opposed to something that they are.” For example, PWA can develop health issues such as skin cancer as a result of their albinism and in that case, “live with” skin cancer as a result the environment they are in being aggressive to them.