Refilwe Modiselle's children's book set to educate a generation
Zizi's World follows the story of Keyanna, a child with albinism going through a world of discovery and self-acceptance. Far more a fictional character, Keyana embodies Modiselle's own journey, experiences and triumphs:
'I want to tell a story about a girl with albinism. And I want to base that story on elements of my life. Because I think the most authentic story I can tell about a life of a child with albinism is the story of a young child, a child that lived with albinism, which is me.'
Having workshopped the idea with her co-author Melissa, she notes how beautifully they worked together. She shares how the journey was never about egos but more so about collaboration and education.
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READ MORE | Bontle Modiselle on acting, marriage and motherhood
As someone with no previous experience writing a book, she talks us through her inspiration.
Behind Keyanna's eyes
Keyanna is more than a child living with albinism. She happens to be a model, and she happens to stand for something.
'The character is quite strong, the character is quite resilient, which is a beautiful message for anybody to have. But the character as well loves themselves. And loving yourself is something that you find sometimes, especially with children, you know, if you're seen as different, which is an ableism conversation, about disability, about physical disability, that it might be a bit difficult to navigate in different spaces,' she shares.
The story follows Keyanna as a third person. 'She's the character that the parents can speak to the child about,' she notes, 'And I think for adults, it's a third-party character who's the focal point of a story. It's easier to introduce your child to understanding that. And that's what Kaya's book is. It's an educational but multilayered story of hope that helps the world begin to learn but also unlearn the ideologies that they have of what can be their normal, so to speak.'
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Her family's influence in the book
Growing up with albinism, Refilwe's family never made her feel different.
Her sisters were her biggest fans and their bond, as seen in public, is still as strong as ever:
'My sisters had already been modeling and, when I wanted to join the industry, Bontle, specifically, would talk to a lot of these agents, and she would take my pictures to the agents. And they would say, no, there's no job for a person with albinism. And my sister would not take no for an answer. So, the significance of my family was that they fought for a lot of the rights that I have today, long before I was even aware of what my rights needed to be. They were a voice when I couldn't have one.'
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SPF became the norm in their house. It was not about her being the only one using SPF, but everyone began using SPF. 'I think what was beautiful is I was never isolated in the things that I had to use. Everybody had to use it. So, SPF was not just for me. Everybody had to use it. So, there wasn't a separation of like, oh you use this, and then me. No, it was everybody in the house, everybody puts on SPF. And I think that was important, you know. And I think what is important is that my family was very involved in the intricacies of this condition that I have. Because the reality is, they're carriers, they have the gene. Genetically, they're carriers of the albinism gene, which means they can have a child with albinism. And so being carriers meant they got to equip themselves with a lot of knowledge, and they got to equip themselves with a lot of understanding of my life and what my life would entail.'
More than anything, Refilwe hopes kids take one important lesson from the book: 'Hope. The simplest thing. Hope and courage to believe in the beauty of what they are, who they are. The simple thing I want them to take is the real truth that they are beautiful as they are. And at the same time, they are worthy of love and of being loved.'
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