A friendship with Narasimha

Slideshow: Time spent with Narasimha

While I first met many of those profiled on Lives in Focus for the first time last year, Srinivas has been visiting them since 2001. His relationship in many ways extends beyond that of a photographer and subject.

Srinivas watched in 2002 as AIDS took the life of one sister but spared the other. On this past trip, Srinivas was sincerely moved when he saw how well the surviving sister had fared despite losing her entire family.

When I accompanied him in 2005, I was struck by how everyone considered Srinivas an old friend. In this series, Srinivas talks about his friendship with one patient:

I met Narasimha in 2002 when I was visiting Freedom Foundation AIDS Shelter for the third time. At that time he was quite ill from the effects of HIV. There were days when he just lay in bed and other times he was quite active, helping around the clinic, tending to the garden and helping bathe the really sick patients.

During my time there he kept asking me to take a full-length photo of him so that when he died his mother could put that up on the wall.

One thing that struck me about him was how positive he was about life even as he lay in bed not knowing whether he would make it to tomorrow.Since 2004 Narasimha has been on anti-retroviral medication and his health has greatly improved.

As of now, he gets his medication free from the government hospital. The situation will change as he becomes immune to the first line of treatment and has to switch to the more expensive second and hence third line of treatment.

Click on the audio slide show above to hear Srinivas discuss his friendship.

Related Previous Posting: Narasimha, a 30-year-old HIV+ auto-rickshaw driver, wonders about his future (Video Interview).

The life of a social worker in the early years of the AIDS epidemic

Ashok Rau, a co-founder and executive trustee of the Freedom Foundation, a care and support center for HIV positive people, today plays a national role in India’s fight against AIDS. He was nominated by the President of India as a member of the Technical Resource Group on Legal and Ethical Issues of HIV/AIDS and he is a member of the National AIDS committee.

This recognition, however, came after a decade of police harassment and mistrust by neighbors.

Established in 1992, the Foundation was started to provide a treatment program for alcoholics and drug-addicts, but it did not take long to notice a link between addiction and AIDS. In 1995, the Freedom Foundation opened a separate center for HIV positive people—one of the first of its kind in the country.

Ashok Rau

Finding a landlord willing to rent space to accommodate a growing number of patients was a struggle in itself–the only property the Freedom Foundation managed to rent was an abandoned chicken shed outside Bangalore. Rau and co-founder Karl Sequiera, spent months washing away the stench of chicken droppings and working as masons to build livable quarters.

The reality of the epidemic drew patients from all over India, but few doctors and social workers were willing to work at the center out of fear. Rau and Sequiera took on the work themselves, cooking and caring for patients and living among them.

As time passes, it is important to acknowledge the struggles of those involved in the early years of the battle against AIDS in India—much like the National Institutes of Health now honors the work of western researchers by gathering oral histories in which they recollect their roles in discovering the cause of the illness.

Lives in Focus here presents an audio podcast of Rau recalling his life as a social worker caring for HIV positive people at a time when few acknowledged their existence.

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Illustrating how to prevent the spread of HIV

In an earlier post, Lives in Focus featured a prevention program called ASHA (”Hope”), which provides education to young women who are considered at risk because they have little or no education and are likely to be married at a young age.

Slideshow: Illustrating how to prevent the spread of HIV

The program stresses the need for peer counselors to visit people in their own communities rather than bringing them to an office. Another component to this outreach is the use of educational material that requires no literacy skills.

In an age of menu-driven DVD tutorials, simple, culturally recognizable illustrations are effective and inexpensive instructional tools. This series features several scans of the educational material that show how HIV spreads, how to protect oneself, and what adjustments one can make to remain healthy despite being HIV+.

Related Previous Posting: Prevention v. Treatment

A numbers game

In late January, the Chinese government, the World Health Organization and UNAIDS released a report which revised downward the estimate of the number of people living with the HIV virus in the vast country.

The revision states that 650,000 people in China are infected with the HIV virus–75,000 of whom have full-blown AIDS. An earlier study (released in 2003) had reported that about 840,000 people were HIV positive–of whom 84,000 had full-blown AIDS.

The new numbers, according to UNAIDS and WHO, are a result of China’s improved surveillance system. The Chinese Health Ministry expanded the number of sites from which it collects data from 194 in 2003 to 329 in 2005. It has also increased the population groups covered by the system, making the new estimate more accurate, according to the UNAIDS and WHO.

But with 70,000 new infections in China last year, international health organizations warned that the revised numbers leave no room for complacency.

India faces its own surveillance challenges. Political, social and economic issues complicate the process of gathering information to accurately reflect the number of HIV positive people in India.

In this audio podcast, Anand Grover, an attorney and project director for the Lawyers Collective HIV/AIDS Unit in Mumbai, India, addresses the gulf between the Indian government’s statistics and NGOs statistics on the number of people infected with the HIV virus. The Collective’s attorneys represent indigent people in court to help win them access to medicines or to protect their jobs against discrimination. The Collective is also trying to influence Indian legislation to make access to health services a government obligation.

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Related Previous Posting: Anand Grover discusses condoms and Morality (Video Interview).

A mother’s love

Slideshow: A mother’s love

Fatima, 35, worries that one day her six-year-old granddaughter will have to look upon her as a mother instead. Fortunately, the child’s own HIV+ mother—Shabana–has remained healthy on an anti-retroviral treatment. As much as Fatima praises God for keeping Shabana alive, she knows that medicines also play a vital role and she is prepared to sacrifice to keep her daughter healthy.

“We will eat whatever we find so we can still buy the medicine,” says Fatima. “God will find a way—we have at least that much faith.”

In this audio podcast, Fatima talks about how her heart pounded when she first learned of Shabana’s illness and how her faith keeps her strong. (Click the photograph above for an audio slide show or here for audio only.)

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Related Previous Posting: Shabana’s hopes (Video Interview)

High-risk behaviors

Slideshow: High-Risk Behavior

For the grant application mentioned in the previous post, we compiled a series of photographs that depict the lives of people who often engage in high-risk behaviors in India [Note: A comment on the use of "high-risk behavior" v. "high-risk groups"]. Compared to our previous images, these are all in black-and-white and shot with film rather than a digital camera. The photos are of prostitutes, dancers, truckers and hijras, or eunuchs, who are commercial sex workers.

Posting delay

We wanted to explain why we haven’t posted anything since Dec. 21, 2005. We are applying for a grant for the next phase of the project and that work is consuming most of our energy. The deadline is Jan. 31.

The next few items we are considering include:

1. Shabana’s mother’s thoughts and feelings about her daughter’s situation;

2. An expert speaking about the infrastructure required to get treatment to those who need it;

3. And the photographer’s reflection on his long friendship with someone surviving because of anti-retroviral drugs.

We apologize for this delay and we will begin posting as soon as the application material is postmarked.

Shabana’s hopes

click image for video interview

Shabana, 20, realized she was HIV+ after her husband’s health began rapidly deteriorating. A Muslim woman, she now serves as a counselor trying to educate those in her community about the dangers of HIV/AIDS and how it spreads. Many Muslims, she says, still believe that the illness will not enter their community. Shabana, who was married off at 13 and with a child at 14, says she is dedicating whatever of her life remains to making sure that her six-year-old daughter and others can avoid her fate.

Related Previous Posting: Facing the Glare (Photography).

Lambadis: A people on the outer edge of life in the margins

Slideshow: A people on the outer edge of life in the margins

The first day of December is recognized globally as World AIDS Day—a day to bring to light the issues, struggles and successes in confronting this disease. Lives in Focus looks at the Lambadi, a people who receive little coverage.

India’s Lambadis, who are said to be closely related to European Gypsies, traditionally live in isolation from the surrounding dominant Indian culture. But the AIDS epidemic is drawing them out from their isolation. Statistics on impact of the HIV/AIDS on the Lambadis population is basically non-existent. Ironically, the Lambadi women were known as healers for their skill in caring for women during labor and the child after birth.

This series of photographs portrays a Lambadi mother-in-law caring of her dead son’s HIV+ wife. They traveled overnight by bus hoping to find a cure for what was slowly extinguishing the young woman’s life.

An artist’s impressions

Slideshow: Seven Lives Worth Living

Over the past few months, Lives in Focus has posted photographs and video of people living with HIV/AIDS in India. Srinivas Kuruganti’s photographs capture scenes with only available light and the videos depict people without any special effects.

The series of images here present an artist’s impressions of people affected by the epidemic. The artist Anna Bhushan writes about the work:

I have been traveling to India every year for the last 10 years to visit my family in Hyderabad but until 2003 when I met Srinivas, I, like so many others both in India and abroad, had no idea of the scale
of the HIV epidemic in India.

On my first visit to Freedom Foundation, I spent the afternoon playing with the children there, it was a deeply moving experience and I was so touched by their trust and need for affection, even from a total stranger.

When I returned to London I made a series of portraits based on Srinivas’s photos and my memories of visits to the clinic, which I later turned into, “Seven Lives Worth Living” which was shown at the Royal College of Art summer show in 2004.

The monologues are translated and edited (but not changed) interviews conducted by Srinivas with patients at the clinic and their words, although deeply personal, bring attention to some general social issues associated with the disease.

For instance, Tajunisa’s tragic description of her attempt to kill herself with her three sons and her
belief that her suffering is “God’s wish”, relates to the findings of a 2001 UNAIDS survey in which “36 percent of people felt it would be better if infected people killed themselves and that infected people deserved their fate…34% said they would not associate with people with AIDS, and one fifth stated that AIDS was a punishment from God.” (from avert.org).

Other voices touch on issues of shame, concealment as well as alienation and maltreatment from family and society.

The words and illustrations in this audio slideshow are from “Seven Lives Worth Living.” For more work by Bhushan, please visit her Website: rawmango.com.