Albinism is still profoundly misunderstood — both socially and medically — and the aim of the month of September is to educate society on the condition. It’s a genetically inherited condition that happens worldwide, regardless of ethnicity or gender. Dr Nomphelo Gantso weighs in.
1/ What causes albinism?
2/ Are there any symptoms?
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3/ How is albinism inherited?
4/ How does albinism affect the skin?
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These three women spoke to about how they celebrate their albinism and the lessons they’ve learnt.
1/ Thando Hopa
Thando is a lawyer, international model, writer and diversity activist. She was one of this year’s Miss South Africa judges, as well as the first African woman with albinism to grace the cover of international mag .
“Albinism should be celebrated, the way any other strand of humanity is celebrated,” says Thando. “The hierarchy that reinforces the worthiness of certain human bodies over others plays into the age-old cycle of unequal power dynamics and we never seem to learn from it as a society, be it race, gender, sexual orientation or in the specific case of albinism, colour. If we celebrate our differences [keeping] common humanity in mind, we may stop creating an ‘other’ and stop being an ‘other’ too,” says Thando.
Albinism taught her what being human taught her: “That, as people, we choose to standardise what the human appearance and experience should be – we call this normal. We have a history of describing what is different as abnormal, yet this process comes off as being in complete denial of the diversity embedded in human bodies and human experiences.”
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2/ Vuyokazi Nombewu
Vuyokazi is inspiring South Africans to reach their full potential and to become agents of change in their communities. Vuyokazi ran this year’s Sanlam Cape Town Marathon, hoping to qualify for 2020 Comrades Ultra Marathon.
As a long-distance runner, Vuyokazi experiences sunburn, which requires good-quality sunscreen. “My vision is very long. I’m always scared to fall, so I benefit from a guide runner when I need to chase good times. I aspire to qualify for Comrades 2020. I’m ready to train hard to achieve my goal,” she says.
Vuyokazi started running in 2014, and ran a marathon in 2015, because she wanted to build her confidence. In 2019, she joined Ocal Global, a movement that supports the needs of differently abled people. “I started thinking about how I contribute to raising awareness about the needs of people who are different and now I run for universal accessibility for all in our races,” says Vuyokazi. It takes courage to stand at the start line of a marathon of any race. “My reason is simple: I run to be seen. I run to discover my character. What’s your reason?” she says.
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3/ Refilwe Modiselle
Refilwe is an activist, TV and radio host, MC, singer, actress and model. Soweto raised, she’s the country’s first professional fashion model with albinism. Refilwe says albinism has taught her strength, resilience, self-love and respect for people in general.
“It’s taught me the ability to take people as they are and embrace the qualities they possess from inside going out,” she says. Albinism has taught her to go beyond what people deem as limitations and to live life to the fullest – the way she wants to.
“Albinism has taught me that beauty isn’t entirely the way society has tried to define it, but creating your own understanding and narrative of giving the best of you to the world. It’s taught me that in my skin, I can still win regardless of the challenges I’ve had to go through in my journey. It’s taught me that being ‘unique’ is a beautiful thing. Run with it. Never fear standing out amongst the crowd.”
