OUR MODEL NAN SHARES HER EXPERIENCE OF LIVING WITH ALBINISM
Posted on July 13 2021
I was struck by Nandipha Mthembu's ethereal beauty and was honoured when they agreed to shoot for my latest project. The way Nan expresses themselves on set is quite unique and helps to create a magical aura that is pervasive in their work as a model. Since the shoot I have been wondering... Did I use them because they are a person with albinism? Was I exploiting their unique characteristics to fulfil a creative vision? Or were they owning their differences with such confidence that they were, in turn, captivating me with their strength of character? I had questions to ask and wanted to offer my platform to discuss their thoughts on albinism. They generously agreed to an interview – I hope you find it as interesting and enlightening as I do.
FOP: I THINK THE MAJORITY OF PEOPLE THINK THAT ALBINISM IS JUST A SKIN DISORDER BUT READING ABOUT THE CONDITION, I HAVE REALISED IT IS SO MUCH MORE THAN THAT. COULD YOU TELL US ABOUT HOW IT AFFECTS PEOPLE WITH THE CONDITION?
NM: So to simplify, albinism is a recessive genetic condition that results in a lack of or no melanin presence in the hair, skin and eyes. The lack of pigment is what results in the distinct aesthetic of pale skin and light hair and eyes. Without the protection of melanin, it means we’re very photosensitive to sunlight and bright lights. Since there’s no pigment, we don’t tan and burn very easily and this is why skin cancer and sun damage is common amongst people with albinism, leading to reduced life expectancy.
Melanin is also needed for the healthy development of the eye. Without it, nerves at the back of the eye remain undeveloped resulting in nystagmus (involuntary movement of the eye as the brain attempts to focus) and short sightedness. This is why people with albinism are often partially/severally visually impaired or blind.
FOP: WHAT CHANGES WOULD YOU LIKE TO SEE IN SOCIETY TO MAKE YOUR LIFE EASIER? IS THERE ONE FACT ABOUT ALBINISM YOU WISH EVERYONE KNEW SO YOU WOULDN’T FEEL WEIRD ASKING FOR CERTAIN THINGS?
NM: I want people to know that albinism is more than skin deep or aesthetic. Our photosensitivity and visual impairments mean albinism is a disability that affects our lives daily. I want people to show the same patience and understanding they show to people with other disabilities.
FOP: WOULD YOU SAY THE EXPERIENCE OF A BLACK PERSON WITH ALBINISM DIFFERS FROM THAT OF A WHITE PERSON? IN WHAT WAY?
NM: It’s different in that people think because we have no pigment that we’re white and experience the same privilege. This is NOT the case, I am black and have always been treated as such. These misconceptions are rooted in colourism and belief that race isn’t a social construct built from the same white supremist ideology as colourism.
I do not experience white privilege; people see my hair, my lips, my name and eyes and automatically see me as an other. That’s why it’s so important to acknowledge the intersectionality of race and disability in the case of people of colour with albinism. POC with albinism are often victims of double discrimination, shunned by communities they belong to because of these misconceptions.
FOP: WHAT IS THE BIGGEST PREJUDICE YOU HAVE EXPERIENCED REGARDING YOUR ALBINISM?
NM: Growing up in South Africa I was very aware of the dangers faced by people with albinism on the continent. Some communities in Africa, particularly in Tanzania, still practise Paganism and other types of witchcraft, they believe that people with albinism possess special powers and so hunt them to use their body parts for spells and rituals. They pay a high price for these body parts, creating a very dangerous environment for people with albinism.
Other communities, particularly in West Africa, believe babies with albinism are cursed or they’re a sign that the mother has slept with a white coloniser so the baby must be washed down the river and killed to rid the family of the curse.
Although not to these extremes, discrimination, and prejudice towards people with albinism in the west is pervasive with most media representation of people with albinism being aliens, villains or monsters, think Katy Perry’s E.T. video or the twins from the Matrix. These portrayals perpetuate the dehumanising prejudices and stereotypes that people with albinism are ghosts or alien monsters to be feared.
FOP: DO YOU FEEL THAT THERE IS A COMMON CULTURE THAT UNITES PEOPLE WITH ALBINISM ACROSS DIFFERENT NATONALITIES AROUND THE WORLD? DO YOU HAVE EXAMPLES TO ILLUSTRATE THAT?
NM: Honestly the only thing that links us is our albinism. We are our own people with our own passions, interests and personalities. To a lot of us our albinism isn’t really important or significant to us, it’s a part of us of course but our condition doesn’t define us. We’re more than just “albinos”, which is why we prefer to use the phrase people with albinism and the term “albino” is a little offensive to us. We’re united in our condition and struggle to fight ignorance around it but ultimately we’re all our own people.
FOP: HAS ALBINISM BEEN A BLESSING OR A CURSE FOR YOU?
NM: I used to think that my albinism was a curse in that I always felt like an other and like I would never fit in or be accepted. Now I realise differences should always be celebrated and our differences are the things that make us special as individuals. Now I see albinism doesn’t and won’t hold me back and I should embrace and draw confidence from every part of my identity.
You can view Nan's profile here: https://www.instagram.com/sansmelanin/