Refilwe Modiselle gently tackles misconceptions and myths about albinism with her children's book

The Citizen

17-07-2025

Modiselle published 'Zizi's World: Through Her Vanilla Eyes', a story that encourages children to celebrate their individuality.
It's easy for one's heart to be hardened by traumatic experiences.
For Refilwe Modiselle, who lives with albinism, the ostracisation that comes with her skin condition hasn't dented the person.
'I don't believe in aggression, I think that's how I conducted myself generally. I'm a very outspoken person, a lot of people know that I say what I say and I mean what I say. But I do it with a respect,' Modiselle tells The Citizen.
The media personality recently published a children's book, Zizi's World: Through Her Vanilla Eyes, a story that encourages children to celebrate their individuality and treat others with respect and compassion.
The story is centred on Zizi, a bright, confident girl with albinism.
By definition, albinism is a genetic condition characterised by a lack or reduction of melanin, the pigment that gives colour to skin, hair, and eyes.
In African communities, misconceptions and myths about albinism harshly thrive.
One of the most prevalent African myths about albinism is that individuals with albinism and their body parts have superpowers. This unfounded belief has led to the mutilation of throngs in Africa.
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Refilwe's homage to her parents
In the story, Zizi's support structure is her parents, just as Modiselle's folks have been to her.
Bringing 'Zizi's' parents into the story is Modiselle's way of honouring her parents, who showed her love from the day she was born.
'This was an honour for my parents and the love they instilled in me. Unfortunately, my dad is late, but this book honours the role that he played. It's so key for parents to understand the role that they play in who their kids become.'
'I am because they were who they were.'
'I was born in Soweto, the township. I did go through the questions, obviously, but, as a child, you're not cognisant of those things.'
'The book sort of highlights that. When you're born into a home that doesn't really note the differences of who you are, you don't feel the pinch of the pain. You only recognise those things when you're much older. Because I came from a loving home, I did not see those things', she says.
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Writing 'Zizi's world'
The book was officially released on June 28. Modiselle was approached by Lingua Franca Publishers, a publishing company with a track record in children's literature, among other genres.
'I thought 'yoh, a book',' exclaims the media personality. She was initially taken aback by the offer, but she gradually opened herself up to the idea.
Modiselle was approached in January, and she considered her creative direction in February, beginning to write in March.
'It took me about two or three weeks straight, as in locking myself up and writing the book,' shares Modiselle.
'I could've chosen any angle. For me, the most important thing was like 'oh, I've never seen a child with albinism in a book'.'
'This is important in terms of representation in terms of seeing myself and any other child with albinism or a person with a difference.'
'It was partially my story, but not entirely. Some parts have been twisted,' she says.
Modiselle did most of the writing and handed it to the publisher. It was edited by Kudakwashe Dzache.
'I was given creative freedom to write, and they tweaked where they needed to tweak…and it [editing] was very minimal. When I sent the first draft, they were happy.'
'I've always said that yes I'm writing a children's book but that book is not 'a,e,i,o,u' it's not,' she exclaims.
'It comes down to the level of explaining to a child but allowing an uneducated person to also be able to understand at a basic level, so that they feel it.'
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Challenges remain
Modiselle is frank in her assessment of how being a famous person who lives with albinism is slightly different to that of an ordinary citizen who has the same condition.
'Obviously, you will feel the treatment, but because you became a lot more famous and there was an understanding of who you became or what you presented to people, it doesn't mean that it became easier. It became softer, but not easier.'
The trio of being a woman who is black and lives with albinism is one that firmly places one at the bottom of the barrel in society.
'It became slightly easier because people learn who you are, your essence. They kind of almost forget, but they don't. They don't forget what you come with.'
'Because you're 'Refilwe', you've made people kind of forget this thing, but they don't forget it. It doesn't mean that clients gravitate to me easily; they still have a sense of resistance.'
Zizi's World: Through Her Vanilla Eyes has received a warm reception from those who have already purchased the book, and the actress says a second edition is not off the cards.
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