AA photograph by Elsa Niemoller.6 (1) (1)

NEWS RELEASE

IN LIVING COLOR

Albinism is a socio-political experience with varying medical aspects such as layered eyesight problems and/or skin vulnerability to sun damage. These aspects have the potential to be disabling, but this highly depends on the inclusiveness and reasonable accommodation of one’s social and structural environment. However, in the medicalized sense, I take issue with the perception that albinism is an existence that one suffers from or that the colour that our bodies present fails to reach some kind of human standard.

Albinism is generally framed in the negative, trapped in some form of institutionalised negation or deficit. We’re often narrated as having a deficiency of, or an absence of colour in our skin, hair and eyes. Albinism is also framed in the negative through malady, narrated as having a genetic disease or congenital disorder instead of neutrally framing it as a genetic occurrence or congenital characteristic. This kind of language positions albinism as an ailment to be cured or an inadequacy of being – which has cultural and political implications.

Melanin content influences certain bodily functions such as visual acuity or skin resilience to sun damage, but the pathology diagnosed in albinism is not primarily focused on the vision problems that are likely to occur in many instances of albinism or in the vulnerability to sun damage. The pathological focus of albinism, similarly to vitiligo, seems to be on the appearance of colour specifically.

The root word for albinism is “albino” which literally means “white person”. The term was coined by Europeans, specifically to describe Black Africans with white skin in the 17th century. At that point in time, Europeans seemed to be completely unaware that albinism is a biological event that occurs within their own population, too. The personhood of many African ancestors with my complexion had been subjected to humiliation, bartering, exploitation and violation. They were displayed in public exhibitions and “freak” shows in the name of science, entertainment, and profit. This was a time when skin color played a leading role in securing theories of white superiority. Black albinism was a pervasive threat to the credibility and fragility of these ideologies. Whether instinctively or strategically, explorers, naturalists, scholars, and other “white” men, began scripting the occurrence of white skin on Black bodies as a plague or a corruption of normality. The legacy of this history ensured that white skin will always be considered a defect or abnormality when it is found on “non-white” bodies.

In my early modeling career, there was a running joke about me being a “blue-eyed, blonde-haired” model. That description is true to my appearance, but the wielders of those words were picking at a stereotype that is not about the appreciation of an aesthetic but is an acknowledgment of power constructs. I would laugh while brimming with cynicism knowing that these features have been held up as the archetype of the beauty ideal, but there’s a drastic shift in currency when those exact same features present themselves on a Black African woman with albinism.

While I aim to carve a cultural environment that contributes to inclusion and equity, the necessity to remedy the history of several kinds of harmful representations, prejudices and inequities that bruised my blackness, my African-ness and my albinism respectively, continues to mould an indescribable amount of tension. My media experiences require the management of various kinds of racial discrimination — my albinism based on color in addtion to being a Black African based on race and nation. In trying to address or convey these complexities, the exhausting struggle of language dawns on me. For instance, there isn’t a word to describe the particular kind of intersectional prejudice Black people with albinism face, similar to how misogynoir notes prejudice specifically against Black women. The violence, attacks, persecution, myths, name-calling, racist theories and negative stereotypes that have been promulgated specifically against Black albinism overwhelms one’s sense of optimism. Although this is the reality of being a woman in a highly racialized group, it also gifted me with an expansive intersectional lens that groomed my activism.

When I saw myself on the cover of Vogue Portugal making history with my afro-blonde-hair, thick lips, golden-blonde brows and lashes and my broad nose, adding my mother’s Zulu earrings in one of the pictures — having worked to gain more control over my representation and my story — I took a deep sigh of relief and felt the temporary dying of tension. I realized how much of a struggle it is to allow all the identities within me to build an alliance, for my gender, my nation, my race and my albinism to feel safe, secure, beautiful, complete and at ease inside the body that holds them.

Albinism has taught me the diverse politics of color and how a person can be hypervisible yet have their humanness largely unseen. When I move from magazine covers to policy discussions and global leadership platforms, I try to remember the essence of what my mother gave me on the day of my birth: she granted me independence, sovereignty, and agency over my experience, the authority to see the world for myself. If the good doctor only knew that I do see color, and even though the world can be dim, we find allies, tribes, solidarity and collaborations that help us re-inscribe narratives that fill rainbows back onto the life force of our bodies until we burst with variants of color.

Read full article:

https://www.allure.com/story/thando-hopa-personal-essay-albinism

 

FOR BOOKINGS:

email us: enquiries@thandohopamedia.co.za