Model and activist, Thando Hopa, sees a world filled with vibrant hues, even though the medical establishment would mark her as "melanin deficient." She lives her life balancing and embracing all of her intersectional identities as a Black African woman with albinism. This story is a part of The Melanin Edit, a platform in which Allure will explore every facet of a melanin-rich life — from the most innovative treatments for hyperpigmentation to the social and emotional realities — all while spreading Black pride.
When I was born a doctor suggested with professional authority that the fair-skinned little girl my mother had just given birth to would probably never see color. My mother was a young Black filmmaker in pre-liberation South Africa with personal experience of being a minority in a disabling socio-political context. She politely received the news from the doctor, diclofenac sod 75 and, with defiance, turned privately to my father and said, "This doctor doesn't have albinism; I'll wait for my own child to tell me what she can and cannot see."
As I grew older, it turned out that I did see color. I couldn't make out details from a far distance, but when I moved close enough I could see variants of color blending into the portrait of my world. I saw fragments of melanin, from my light-skinned parents to my dark-skinned grandmother. I could see the pathways of age drawn on my grandmother's mahogany-toned hands when she pulled me close to her. I would tug on the blue checkered blanket that she wrapped around her shoulders and gently hang my ear on the humming of her voice. She anchored me to her imagination by singing lullabies and telling me stories of the Basotho nation until the colors instantly dimmed when she switched off the lights. Most significantly, when I looked at myself in the mirror, I saw a person of color staring back. My greenish-blue dancing eyes, the blonde Afro hair that my mother combed with her fingers, blonde brows and lashes, thick pink lips, and the white complexion of my skin.
Around the age of five, I began consciously and unconsciously learning about the politics of my body through my cultural landscape. I discovered, first through experiences and then through language, that I am classified as female, I am Black, I have albinism — and all these identities are loaded with meaning, perceptions, and expectations that would have a substantial consequence on my life. Of all the identities that housed themselves within my body, there seemed to be disproportionate harassment over the complexion of my skin. As I grew older, I constantly experienced covert, overt, and borderline obsessive interrogation of my human and biological value, my normality, my general intellectual competence, my racial positioning, and social desirability — all linked to my having albinism.
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 color that our bodies present fails to reach some kind of human standard.
In the medicalized sense, I take issue with the perception that albinism is an existence that one suffers from or that the color that our bodies present fails to reach some kind of human standard.
Albinism is generally framed in the negative, trapped in some form of institutionalized negation or deficit. We're often narrated as having a deficiency of, or an absence of color 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 color 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.
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 mold an indescribable amount of tension. My media experiences require the management of various kinds of racial discrimination — my albinism based on color in addition 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 blonde Afro 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.
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