Desi Making Waves

By Roopika Risam

Sandeep Junnarkar: Bringing Real Lives in Focus

A new law in India requires the Indian government to protect drug patents and prohibits the production of generic versions of drugs with global patents. This law is life-changing for the millions of HIV positive people who are now unable to get the anti-retro viral drugs they need to stay healthy. Award-winning journalist and professor Sandeep Junnarkar spent three months in India documenting the lives of people being directly affected by this law. Through film, video and photographs, Junnarkar and co-producer Srinivas Kuruganti created Lives in Focus: A lens on life in the margins, a multimedia weblog that shows the stories of the real people whose lives can change at the hands of policymakers. Junnarkar, this month’s Desi Making Waves, discusses Lives in Focus, New Media and being South Asian in America.

What made you decide to document the lives of families affected by India's new patent law?
I had been following this issue for four years to see how it was developing and the patent law was finally passed earlier this year. [Passing the law] was something India had to do within ten years so they could join the World Trade

Organization (WTO). We knew it was going to happen some point...The press was reporting the [impact of the new law] as “Some say that some populations will be adversely affected.” The impact it could have on a whole people was being turned into a one-sentence description. We also began seeing more articles about how India could tap into the billion-dollar generic drug industry. It became a business matter and the impact [the law] would have on regular people was ignored, so I tried to change that.

How did you decide to work with Srinivas Kuruganti, your Lives in Focus co-producer?
Srinivas Kuruganti and I met over 10 years ago. We would go to different exhibits and talk about photography. Srinivas and I always talked about doing a project together, so when this [law was passed] it was the perfect thing to do.

Do you think India should repeal the patent law?
That’s not really the goal. Here’s the thing: the WTO has a stipulation that if there is some type of health epidemic they can change what’s required of their countries. I would say there’s an AIDS epidemic in Africa and in India—no one would argue that there isn’t one. I believe that people should be able to hold patents and make money off of patents. But at what point do you say, “Okay, we’re not protecting the patent to Viagra for someone to have fun”? We’re talking about people’s lives—HIV is spreading, it’s having an economic impact on parts of Africa, and it will on India. We have a moral obligation to help these people, so we have to make some exceptions to the law. And that’s what we’re hoping may happen… We’re trying to raise awareness in people’s minds. The next step of the project is to give people the option to send emails to different WTO officials to let them know they’re worried. Because India supplies generic AIDS drugs to Africa, it’s beyond India at this point

Do you have any public health training?
In terms of health training, I’ve taken courses in college…I’ve written articles for news.com about changing laws and their impact on health. The overarching thing is a health policy issue but I felt like I wasn’t trying to write a health policy paper. I wanted to show people—the lives of the people [talked] about in health policy papers. I picked all that up on the job, talking to people about their own lives…It’s more of a beef on people’s lives and not a technical thing.

What is the most difficult thing you experienced while documenting these people's lives?
As a journalist, I wrote a lot about laws and technology—right away you can tell I’m not dealing with real people, just technicians and politicians. The hardest [part of the experience] was when I wound up at AIDS orphanages and saw these children. And they all have the same type of story or they don’t know what their story is. I have two girls—and I saw girls who are the ages of my own kids, four and six. It’s so disturbing. At the end of the day, I’d think, “I can’t imagine what life is like for these kids.” I think of my own daughters and wonder what they would do. That sounds harsh, but it was uplifting to see they were working together as a family—the older children taking care of the younger ones. I’d wonder, “How do children live like this? How can they understand? Do they understand?” The kids really wanted affection—in the orphanages they were well taken care of, but can you imagine five adults taking care of thirty kids and a few adults? They just want to have you play with them. That’s one of the things that we did when we got there. We took out our cameras and let the kids film each other and take pictures—which we developed and gave to the kids. We didn’t start shooting for a couple days. We thought we’d become part of the scenery but we ended up playing cricket and karate with them. And they’d shout “Hello Uncle! Hello Uncle!”

How hard was it to get the people you interviewed to open up to you?
It was hard in one sense...people would worry about what kind of questions we would ask them, whether we’d ask them about legal issues. Then they realized we just wanted to hear about their challenges, how they wound up where they are, and who they lost along the way. People had been holding back because they didn’t know who to talk to. There would have been a stigma in their villages. Given the opportunity, they were venting pent-up anxiety. They wanted to share that they lost a child or feel bad because they can’t remember what their moms looked like—they wanted to talk to us. We avoided questions like “What do you think of the health policy?” We wanted to stick to their lives. With the kids we avoided talking about AIDS itself. We talked about what they play and what they do in the center. We have one video with the woman singing a song of prayer for the children and another with kid that says, “I like karate.” They all look much smaller than they are. They might be eleven but look seven because their growth is stunted. With the boy who likes karate, I asked “Can you show me a move?” For the next fifteen minutes the kid did this full karate routine and talked about what his life is like and what he’s hoping to do. That’s his life. That’s his fun. He waits all week for the karate instructor that comes. We focused on kids’ interests rather than pounding them over the head with issues that will create sadness. It really seemed like they wanted to open up.

How did you decide where to find your subjects?
Srinivas had gone to India a couple years ago and he had gone to this AIDS orphanage and got to know a couple people there. So we went back to the orphanage, Bangalore’s Freedom Foundation. I had gone to India for the Ford Foundation to write about the Mumbai Legal Collective and their work on AIDS in India, so that opened up some doors as well. They know people—truck drivers, or someone with a hospice—so if you make one impression, it opens up doors beyond that as well. The directors of the programs wanted me to come and spend time with them because of my qualifications—but then I really had to underscore that this wasn’t for the New York Times or the Ford Foundation. This was for a website. There wasn’t a great understanding of how this [project] would work over the Internet. When I explained that to them, they were excited.

What kind of reaction have you received from documenting these lives?
So far we have had lots of emails from people saying, “This is a good site, I figured people’s lives were hard but this is touching.” Based on my experience, this is a depressing topic but I try to use a touch of optimism. We want to keep the optimism alive so [people] believe that we CAN do something—people are struggling through and managing in some way. There have been very positive comments in that way…I’m trying to get more commentary on the site itself.

How are you spreading the word about your website?
It just seems to be running its course. I had plans on doing PR for it, but I haven’t really done that. I’ve been interviewed a couple of times—the interview with the BBC helped a lot to get the project going. Otherwise, it seems to be taking on a life of its own and spreading from one place from another. You can see what domains people are visiting from—the United Nations, the Gates Foundation, different universities. It’s taking on a life of its own, which is fantastic. I have to tell you—I still get blown away by how information travels over the Internet. [Lives in Focus] has wound up connected to the Times of India, to websites in Germany, France, to schools and different sites on AIDS.

How did you get into online journalism?
I graduated from Columbia Graduate School of Journalism in 1994 and I saw a listing for the New York Times saying it was about to take its property onto America Online. So I applied for the job and was working there and—this is a funny story—I asked the editor how many resumes he had received because Columbia didn’t start a New Media program until a year after I graduated. How many people applied? A lot. I asked [the editor], “What did you like about my resume?” He said, “Yours had an email address on it.” And I thought, “I spent $25,000 a year at Columbia and it was just an email address?” So that’s how I got my lucky break. From there, the New York Times went on the Internet and I worked there until it started looking much like it does now. Then I moved onto news.com; I wanted to move on to more writing and reporting—I had been doing more multimedia at the New York Times. I was a reporter for news.com for two years, then became New York bureau chief. Then I was offered a chance to teach online journalism and I loved teaching—so it opened up the door for more projects like Lives in Focus. It’s easier to take months at a time off for projects in the academic world.

What can you do differently with online journalism over print journalism?
Online journalism is becoming harder and harder to distinguish from what a newspaper does because it has just gotten to the point where even if you are a print journalist and write a story, the paper probably has a website and you might want to show more info than can appear in a paper. For example, I interviewed an Internet pioneer—no, not Al Gore—and I was able to put audio on the website and put more information in as a sidebar in addition to the article. The next step in online journalism is to use databases and really to make it an interactive presentation when people can click on different interests—and have the numbers crunch to produce understandable information. We’re starting to do it in a rudimentary way and it’s something that print and television can’t do. Let’s say you get a map of a state’s rivers and get stats about pollution. You could see a map, click on a part, see the pollution, how it occurred, and how it’s being helped. That’s something you can’t do in print. But online allows you to do that. You can digest it at your own speed. The other thing that happened with online journalism is the collaborative nature of journalism—I’m not a health policy expert, so I can let other people do some of the talking—that’s where the collaboration comes in. We’re planning on doing that for the next project. We’ll allow people to tell us who to interview, questions we should ask, making readers more of the assignment editors to get the public involved in what we are doing a little more. The Internet is a great place to show audio, video and photographs for people to tell them stories themselves. I may not have been able to do this with the Lives in Focus project five years ago—the Internet wasn’t that powerful. It just turned out that when India passed the law, the technology was available and it all fell into place.

How do you think South Asians are portrayed in the media?
The way South Asians are portrayed is so different depending on the level of media. According to the New York Times, we are all educated and work for tech companies. So many articles are now about Indian executives from American companies going back to India. India is portrayed as an economic rival, a super-economy rivaling the United States—in the business press and the New York Times. Then, you look at another country: Pakistan. The interest is more based on what’s happening in the War on Terror. Nowadays a story about Pakistan is about how unstable it is and how it’s becoming a haven for terrorists. Then, of course, on television shows here, Indians as taxi drivers and convenience store owners. So in a way it’s really reflecting who we are here in terms of all the different roles we’re playing. You can tell compared to ten or fifteen years ago, people know who we are: A lot of different things! No matter what newspaper or television show it is, it’s a stereotype to a great degree but it’s trying to show who we are. Now on the hospital or doctor programs you see more Indians—in the 1990s, you’d wonder how can there be an ER without Indian doctors?

Have we South Asians come into our own yet in America?
We really have arrived here. After Sanjay Kumar (of the company Computer Associates International) joined the ranks with the WorldCom executives for fraud and mismanagement, I feel like people are now aware that we are at all these levels. Obviously now we’re more sensitive to that! We’ve come into our own—with Subodh Chandra running for attorney general in Ohio, we’re getting politicians, too. As the importance of India as an economic rival grows, it will cause tensions as well as opportunities for our community here.

You have received numerous journalism awards; you've created courses at Indiana University's School of Journalism; you've done this amazing website on the lives of those struggling with HIV/AIDS...What is next on your radar?
The reason we have called it Lives in Focus is because that’s going to be the theme that always repeats. We’re going to focus on people’s lives. But the issue we cover might different. The next issue will be similar but in a different part of world, either southern Africa or Southeast Asia. In the future, we might look at completely different issues—war, civil war like in Sri Lanka, whether it has to do with other tensions between communities in India...we might even do something on methamphetamine addicts in the Midwest, focusing on lives of children, parents—these are just hypothetical. We could do something as diverse as that. We don’t want to be pigeonholed on just doing stuff on AIDS... But to me in the end they are different people whose voices are never heard and we want to bring that into focus.

Roopika Risam is the Managing Editor of ABCDlady.

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