New Book Chronicles Hopes, Struggles, and Insights of HIV-Positive Children in Mozambique
“Talking about AIDS makes me remember my parents’ death; I don’t like it…The only thing I know is that I have been taking pills, and I don’t know what they are good for…When I play football, I don’t run as fast as the others. The pills sometimes make me weak. I know I will heal; I’ll grow up and get married. I want to have two children – a girl and a boy – so that I can give them my mom’s and dad’s names.”
This excerpt of a testimonial from an HIV-positive child living in an orphanage in
Mozambique is just one of several inspiring stories featured in a remarkable new book,
“I Want to Be Somebody.” It’s written by the highly regarded Mozambican novelist, Paulina Chiziane, as part of a project that was facilitated by the Foundation, and funded by the U.S. Centers for Disease Control and Prevention through the President’s Emergency Plan for AIDS Relief (PEPFAR).
The Foundation has worked in Mozambique since 2004, providing services to prevent mother-to-child transmission of HIV, and care and treatment for children, mothers, and families living with the virus.
The book is the result of Chiziane’s travels all over Mozambique with Foundation staff, interviewing children from 5 to 17 years of age who are living with HIV. The children discuss their vision of a life with HIV/AIDS, the hardships of their early years, and their hopes for the future.
The stories themselves range from humorous to hopeful to despairing, but all of them contain profoundly wise insights about how to cope with HIV. It’s our hope that these first-person insights will inform future strategies on how to provide effective psychosocial support to children living with HIV.
The book will also a powerful resource for counseling mothers and children living with HIV. The Foundation is developing versions that contain tips and guidelines for counselors and facilitators of support groups, so that they can be used as tools for promoting open dialogue among communities affected by HIV.
A child's drawing of a health center appears in the book.
(Photo: EGPAF)
But perhaps the most powerful lesson in its pages will be for parents and caregivers about the importance of promoting HIV disclosure. Some caregivers in these stories attempt to protect the children by telling them that the reason they have to take pills is because they have asthma. And yet, many of the stories demonstrate that the children usually know better and feel misled by their elders. One of the most poignant stories, “Why Doesn’t Grandma Tell me the Truth,” addresses this issue directly.
The child reflects: “When they said I had asthma, I believed them. But one time I was admitted to hospital with diarrhea and pimples all over my body. I have never had breathing problems, and I think my grandma is lying to me…I don’t have any asthma. I don’t see why it’s difficult to tell me the truth about my life. My head is spinning round and round, and I believe I have the right to know what is going on with me…”
Ultimately, the children in these stories want their voices to be heard as part of the global fight against the HIV pandemic, and Chiziane is the perfect chronicler. Mozambique’s first woman novelist, she considers herself a storyteller more than a writer, and many of her works focus on social issues in Mozambique, such as the practice of polygamy.
For Chiziane, writing this book was a tremendous learning experience. “I never thought I would learn so much from these children. I laughed and cried with them, and learned so much from them. I am really thankful that [the Foundation] asked me to participate in this project,” she said.
Chiziane was particularly impressed by the strength displayed by these children, and their ability to see the bright side in the most despairing of situations.
.JPG.aspx?width=275&height=206)
(Photo: EGPAF)
One story that affected her the most was that of a young, HIV-positive girl living with her mother. The girl is teased relentlessly by her classmates for having HIV, but she retorts: “My health is none of your business. You might have AIDS too…why don’t you get tested before hassling me?”
The young girl, who lost her uncle, aunt, father, and brother to AIDS, continues: “Here in the village, AIDS isn’t news. There are children who live completely on their own in concrete houses. At least I have a mother who does everything to feed me. The pills I take are strong, and they make me hungry. I follow the treatment so that I can get better and help my Mom. One day, I’ll be a teacher.”
It is this kind of spirit that “I Want to Be Somebody” captures so effectively, and that makes this book such an important addition to literature and to the fight against HIV/AIDS.
Denise Alves is a Communications & Advocacy Officer for the Foundation in Maputo, Mozambique, and Sushant Mukherjee is a Regional Financial Officer for the Foundation based in Kigali, Rwanda.