“What are the ways in which you can contract HIV? And can it be treated, or is the virus a death sentence? It seems like little is known about this virus that is so feared all over the world,” writes Vishaka George in an epilogue to her book House of Uncommons (2020).
Published by Karadi Tales in partnership with the People’s Archive of Rural India (PARI), it is a fictionalised narrative based on real-life stories of children living with HIV at Snehagram school in Krishnagiri, Tamil Nadu. The author met them as part of her work as a journalist who reports on agrarian distress and labour exploitation for PARI. She got a first-hand glimpse of how they dealt with the stigma, built their confidence, and supported each other.
Her news report titled ‘Krishnagiri’s House of Uncommons’ (2017) became the starting point for this book, which is aimed at readers between the ages of 10 and 15. It also has a strong message for adults who are often reluctant to talk openly about sexuality education. In the process, they keep children from acquiring knowledge that could be a life-saver.
Excerpts from an interview with the author:
House of Uncommons is a fictional adaptation of your article for PARI in 2017. How did you approach the story differently as a journalist and as a fiction writer?
PARI has an extensive list of guidelines for journalists. I have grown accustomed to the fact-checking protocols that have been put in place. Looking up census handbooks for various districts to verify demographic information has become second nature to me. When I began working on the fictional adaptation, I realised that I was not restricted to gathering and presenting data. I could let my imagination wander a little. That was a new experience because my professional training until then had been about strictly being a medium between interviewee and reader. There is no editorialising by reporters at PARI.
As a person whose academic training is in political science, economics and journalism, what about this particular story caught your attention and kept your interest alive?
Nothing about my academic training per se led to my writing this book. I grew up in a household that was filled with the sounds of rock music thanks to my father. That’s how I got interested in Freddie Mercury. His life was as fascinating as his music but his death was tragic and untimely. He died due to complications resulting from AIDS, and lived during a time when the entire gay community was being blamed and persecuted for the spread of the epidemic. My interest in him and the virus made me watch Ron Nsywaner’s film Philadelphia (1993), and I learnt more about the stigma against people living with HIV/AIDS as well as homophobia. Those experiences prepared me to write House of Uncommons.
Could you describe the process of crafting fictional characters based on people you met and interviewed during your visit to Snehagram school in Krishnagiri? What were the most exciting and challenging aspects of adaptation?
I went to the school expecting to see famished and sickly children because I had a stereotypical image of what people with the illness look like. Back in 2017, I had no idea that the words HIV and AIDS should not be used interchangeably. HIV can be controlled. If people get the right medication, diet and exercise, they can lead what is usually seen as a normal functional life. AIDS is what happens when HIV does not get treated at the right time. Conveying these subtleties was challenging; I did not want the book to be too technical.
The most exciting part was learning from the students. They were so lively and spirited that they reminded me of my childhood friends from school. They had an amazing sense of humour. They did organic farming, played sports, trained in vocational skills, and ran a student parliament. Every time I wanted to create a character, one of their faces would pop up in my memory. I would try to recall how they looked and spoke, and what made them stand out during our interactions.
You've mentioned in the book that it was written with the consent of Snehagram. Why was that important to you?
At PARI, and at any well-meaning ethical journalistic organisation, consent is key. In the context of Snehagram, the issue of consent was a bit tricky because the story is about people who live with a disease because of which the world discriminates against them. We got consent from the individuals and the institution. The students whose fictionalised selves appear in the book were happy to have their real names used in the news report. But, by the time, I started working on the book, they had grown older and had begun to look for jobs. They did not want me to use their real names because they were worried that their HIV-positive status might prejudice prospective employers against them.
I was struck by one particular moment in the book. You write, “All this talk about HIV made Krishnan feel uneasy. He wished he never had to talk or hear about it ever again. For a while now, it had become as much a part of his identity as his face was, and he was fed up.” How did you feel about your presence at Snehagram knowing that your questions could trigger painful memories for the students?
My experience at Snehagram can be understood in terms of a recurring pattern. As a privileged urban woman, I am aware of the power dynamics that show up when I am talking to people who are structurally oppressed. I also worry about how much my telling the story will help them. I think my work has made me a better interviewer over time. I have learnt that it is really important to make people comfortable if you want them to trust you. And it is important to respect what they say, be genial and warm, notice their body language, and refrain from quoting bits that they do not want on record.
Education and sports seem to play a positive role in their lives, in addition to antiretroviral therapy and nutrition. What kind of research went into developing these aspects of the book?
I spoke to a lot of medical doctors who have worked with people living with HIV. I also met with many Ph.D. candidates who broke down the academic research for me in a form that I could make sense of. I am not a science student, so I went in with a lot of questions. I learnt about diagnosis, physiological changes, dosage, side effects and many other things. These details did not make it to the book but I needed to dive in and learn. The book is not about the medical framing of the illness; it is about lived experiences.
I also got myself a basic understanding of the sports training they went through. I interviewed the coaches and the students. My most memorable experience was with a skinny boy who had run marathons all over the world. He had been to many more countries that I could dream of going to. Sport was a big source of confidence for students at Snehagram. It kept them agile, and helped them stay fit.
The kind of visibility that the COVID-19 pandemic gets on television, in the publishing industry, and in state-sponsored communication makes me wonder why that has not happened in relation to the AIDS epidemic. What do you think are the reasons behind this?
HIV and AIDS were a big deal in the 1990s but the nature of media was different back then. Today, the scale is huge and we have multiple sources of information such as Twitter, Instagram, Facebook and many other platforms. Also, there was an added layer of shame, prejudice and secrecy because HIV and AIDS were associated with unprotected sex, homosexual people, and sex workers. If the AIDS epidemic had taken place today instead of the 1990s, I think that the reporting and messaging would have been different. There is a more sensitive approach to these issues today, with enough and more of the public equipped to call out lousy and insensitive journalism. That's the beauty of social media.
Since there is no formal sexuality education curriculum in most Indian schools and colleges, this book could fill a major gap. How are you reaching out to your target audience?
PARI journalists go to schools and colleges to talk about the issues they report on. The idea is to bring cold facts to life, and make students aware of the problems in our society. We have yet to figure out how to engage with parents, and get them interested in this book so that they have honest and open conversations with their children.