On 1 December 2005, life took a dramatic turn for 25-year-old, HIV-positive Svetlana Izambaeva. Svetlana, who lives in the small Russian city of Cheboksari, was one of only a few Russians to reveal her HIV-status to the world, giving, what many have come to call ‘a face to the HIV-positive community in Russia.’ Living with HIV for three years, Svetlana has become an activist in her region. She has organised the first self-help group for HIV-positive people in Chuvashia, she hosts press conferences for local and national media and works with local officials to improve societal and medical conditions for people living with HIV/AIDS in her area. Svetlana’s optimism and cheerful demeanor have turned her into a role model for the people in her community as well as throughout Russia. In June, Svetlana married her HIV-positive boyfriend and moved to Moscow, where she and her new husband work as a team to advocate for a change in attitudes towards and improved services for HIV-positive people. And so, with that said, we invite you to join us for…
A Few Days in the Life of Svetlana Izambaeva: AIDS in Rural Russia Photo Essay
1. The Day Begins
Svetlana puts on makeup at the kitchen table in the one-bedroom apartment that she shares with her mother and three brothers.
2. The Activist Begins
On the kitchen counter stands the dried-out bouquet that Svetlana received at the press conference where she opened her status to the world on World AIDS Day 2005. ‘My friends all tell me that it is time to throw it away,’ she says, ‘but I just can’t. When I arrived at the press conference and saw the crowd of people who had come to see me, I was terrified: “What have I gotten myself into,” I thought. As I walked up onto the stage and everyone started clapping, I was so scared, and then they handed me the most beautiful bouquet I had ever received in my life, and I calmed down…Most girls think back fondly on the night of their high-school prom, but for me, this was one of the most important moments of my life. These flowers represent the moment when my life changed forever.’
3. Prayer
Svetlana says a prayer at the Vedenskiy Russian Orthodox Cathedral – the oldest church in Cheboksari.
4. Life with Friends
Svetlana and her good friend Yackov Kromarenko, 20 (HIV-negative), go for a walk along the Volga River. Yackov is a psychology student at Cheboksari State University, who has taken up Svetlana’s cause, helping and supporting her in whatever way he can.
5. In Search of Fabric
Svetlana surveys the selection of fabrics at a local fabric store. She designs most of her own clothes, buys the fabric and has her outfits made by a friend.
6. Call
Svetlana’s personal cellular phone has become the ‘unofficial hotline’ for people living with HIV/AIDS in the entire region. People from Cheboksari and neighboring cities call her to talk about what they are going through and the problems that they have come to face in a region, where tolerance is very low.
7. Siblings
Svetlana’s youngest brother, Andrei, 3, has cerebral palsy, and Svetlana cares for him as if he were her own child.
8. Family
Svetlana’s mom Fedosiya Nikolaevna cooks lunch for her family.
9. Rest
Svetlana takes a short break after a long day on a small hill with a view of her town behind her.
10. Making Room
Svetlana and Yackov meet with Venyamin Petrov, head of the Moskovskiy district of Cheboksari, to discuss the possibility of receiving separate quarters (independent of the local AIDS centre) where they could set up a centre for people living with HIV/AIDS. This centre would house GOLOS (‘VOICE’), the self-help group that Svetlana set up. Currently, GOLOS meets on the premises of the AIDS centre, where Svetlana works, but she says that it is difficult to gather people there, as they don’t want to come to the AIDS centre in fear that someone might find out about their HIV-status.
11. Work
Reporter Elena Yegoreva of the local TV station ‘Pyat Plus’ interviews the only infectious disease doctor in the small neighboring city of Kanash. Elena is preparing a special report on HIV/AIDS in the region. Svetlana stands in the background, listening.
12. Pain…
Svetlana has blood drawn at the AIDS centre to check her viral load. Currently, her cd4 count does not require her to take therapy.
13. …and Creativity
While on the phone trying to convince an HIV-positive local to attend that evening’s self-help group, Svetlana gives a haircut to the AIDS centre secretary, Liliya Tetrova, 20. ‘I was just looking for any job,’ said Liliya, ‘and I ended up here. To be honest, I wasn’t too tolerant of this problem before I started working here, but now I really want to do more to help.’
14. Making a Difference
Svetlana leads the self-help group, which meets once a week with 5-10 people from Cheboksari and neighboring cities.
The preceding photo essay was contributed by Liza Shurik, a graduate
of the University of Florida with a dual degree in Photojournalism and Russian Studies. While a student, Liza worked for a number of publications and her work has been recognized in the Hearst Journalism Contest and other competitions. Liza completed this essay while working at the Moscow office of AIDS Foundation East-West (AFEW). The pictures are also available from the AFEW site (without captions). All material reproduced here with the permission of Liza Shurik and AFEW.
According to UN estimates, between .5 and 1.5 million people are living with HIV in Russia today. Tracking the epidemic and preventing its spread, however, has been difficult due to widespread ignorance and stigmas associated with the disease. Here, the story of a young HIV-positive Russian activist living in rural Russia is presented in words and pictures.
This page copyright Liza Shurik and AIDS Foundation East-West (AFEW). We thank Ms. Shurik and AFEW for permission to host this page.
Andrei Nesterov leads SRAS' Research Services, performing remote archive research and consultations for researchers around the globe. Andrei graduated from Ural State University (journalism) and Irkutsk State Linguistic University (English). He also studied public policy and journalism at Duke University on a Muskie Fellowship and taught Russian at West Virginia University. As a journalist, he has reported in both Russian and English language outlets and has years of archival research experience. He has travelled Russia extensively and penned many stories on the “real Russia” which lies beyond the capital and major cities. Andrei also contributes news, feature stories, and language resources to the SRAS Family of Sites.
