When Qamngana-Mayaba's niece Imi observed her taking medication, and asked "are you sick?", she was met with the challenge of explaining the virus to her in a way that she would understand, while using language that would destigmatise HIV.
Hence, the idea for the recently published children's book, I am Still Zuri, was born.
"I envisioned how many parents go through the same thing – how do I explain this in a manner that does not instil fear?"
'She represents so many children'
The main character, Zuri, is a 7-year-old girl who was born with HIV.
In the book, Zuri narrates her story in a way that is relatable to other children in a "courageous and motivational" way which is sure to inspire.
Zuri as a character represents "so much more" than children with HIV, says Qamngana-Mayaba.
"She represents so many children. Children who are differently-abled. Children with autism. Children in wheelchairs. Children with vitiligo. No matter who they are, or the circumstances of their birth, they are still the same. They deserve to be protected and loved."
'Just like you'
Zuri uses metaphors of soldiers and germs to explain the importance of ARVs, just like other medicine, in fighting the 'germs' that make us sick.
"You have soldiers that continue to work for you so you can continue to play, so that you can go to school and so that you can do all the things that you love," explains Qamngana-Mayaba. "That's how we continue to have a normal conversation that parents can adopt."
Thanks to the use of this colourful language, 4-year-old Imi has come to understand that her aunt takes her pills every day because "Nozi needs to help her soldiers become strong and big so that the bad soldiers don't win – if she doesn't take her pills, the HIV germs are going to get big and overpower the good soldiers".
While Zuri is fun and positive, Qamngana-Mayaba says that Zuri's character is also "honest enough to talk about the challenges," saying: "she's sad when others don't want to play with her because they think she will infect them with HIV by sharing her lunch, by hugging, by playing, and I wanted to put that there because I know that the fear that parents have is usually the fear that is instilled in our children".
Zuri talks about all the things she enjoys doing, ultimately driving the message home that "I am still me, just like you".
"I wanted Imi to see herself in Zuri," says Qamngana-Mayaba, recalling how she choked up when her niece said, "Zuri is so beautiful, I want to play with Zuri".
"You can have any conversation with children," explains Qamngana-Mayaba. "You just need to find a way to adapt the language to a level that they're going to understand depending on the age that they're at."
"We can't get tired of talking about HIV"
After years of activism, Qamngana-Mayaba still emphasises the importance of continuing to destigmatise and educate around the subject of HIV.
"To this day, there are still kids who are born HIV positive from HIV positive mothers. That is unacceptable".
"It can't be too big of a topic for young kids," says Qamngana-Mayaba. "Our ignorance and naivety are leaving us behind while the world continues on".
"As much as I try to shield Imi – there are things that are going to be out of my control," says Qamngana-Mayaba, who is adamant that the next generation of children should not have HIV be used continuously as a weapon to hurt them.
"If we are going to delay and have someone have the power to influence our kids besides us, we are in danger."
"It can never be too early," says Qamngana-Mayaba. "I get the fear, I get the resistance, but over time, we're going to have to be open-minded"
I am Still Zuri is available for purchase on Ethnikids.
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