by Rajan Gupta, July 2003

At least since the beginning of 2000, most educated people in India have, at one time or other, heard that there are 4 million HIV+ people in India. (On 26 July 2003, NACO announced new estimates for infected people at the end of 2002 and the upper limit taken as the best estimate is 4.5 million!) Indians are very intelligent, caring and perceptive people, and yet this information seems to have elicited very little tangible response from the bureaucrats, or the industrialists, or the medical community, or the government or for that matter the general public. There has been a proliferation of NGOs supposedly working towards containment and finally the elimination of this scourge. Their scorecard is very mixed - while there are many good NGOs doing excellent and inspired work under dire conditions, there are many that are using HIV/AIDS to make money and promote their own agendas. Irrespective of what these NGOs do or do not do, the sheer proliferation of NGOs and the attention they have drawn should have given the public pause to think and ask questions. Yet, in spite of all these "happenings", the public is still in denial and the stigma and discrimination against HIV remains very high. The question is why?

One major reason for the lack of adequate response, I would like to propose, is documentation. The pandemic lacks names and faces that people can recognize and empathize with. Why is it that the pandemic remains undocumented when all major newspapers, TV stations and other media repeatedly carry stories of the numbers infected and of the lives of people who are either infected or are helping the afflicted? What I would like to propose as a major reason for the lack of recognition of the problem and the failure of intellectuals to get involved is that these stories are faceless, and the numbers, even at the level of few million, are irrelevant to most people. India is not alone in this reaction, nor its people the first to exhibit such silence.

The holocaust during World War II did not raise an alarm. Most people worldwide did not find out about the extent and degree of the systematic genocide until after the war. But why do many of us, born years later, know in chilling detail what happened sixty years ago, and understand why such a situation should never be allowed to happen again. It is because the Jewish holocaust is very well documented. Auschwitz, Birkinau, Treblinka and the many other concentrations camps have preserved the memories of those killed, and an equally large number of museums in the Western world tell stories of those that were lost or survived. These stories are not in second or third voice, but are incredibly powerful personal ones. The dairy of Anne Frank chronicles the strength, bravery, and loss of a 14 year old girl and speaks for every 14 year old that was lost. As a result, these stories have been woven into the fabric of Western society. Unfortunately, in spite of the worldwide awareness and media penetration, we have not been able to prevent subsequent "holocausts." The killing fields of Cambodia; the war in the Congo between 1998-2003 which many now call the African world war; the HIV/AIDS deaths in Sub-Saharan Africa; the civil wars in Sierra Leone, Liberia, and Guinea; genocide in Bosnia and Kosovo; the famine and war in Ethiopia; the genocide in Rwanda have each claimed millions of lives and yet the scale of loss is known only in academic circles or in the corridors and publications of a few international organizations. The documentation of these tragedies continues to be faceless and, as a result, unknown. The elite continue to wear diamonds and eat chocolate without asking -- for how long have diamonds been used to fuel conflict in Africa that caused the deaths and maiming of millions of vulnerable people, or how extreme is the exploitation of children laboring to produce cocoa so that we can have chocolate. In short, the poor and the exploited do not know how to tell stories nor can they document their struggle. And in the absence of documentation, even the learned remain silent and passive.

In the United States HIV/AIDS acquired a face not because of the statistics CDC published but because of the quilts that each community was forced to make and the collages that seemed to appear overnight and grow daily in the corridors and on the walls of show business, salons, and bars. These exhibits identified brothers, sisters, mothers, fathers, sons, daughters, lovers and friends. The documentation that touched people's hearts was done by the sufferers and their loved ones who also stood up and were willing to be identified, irrespective of whether they too were infected, or ashamed of their HIV+ sibling, or still trying to reconcile to why HIV had affected their lives. Names like Rock Hudson, Arthur Ashe, and Magic Johnson gave these stories even more flesh and blood. The question is can this documentation happen in India?

The problem is not an easy one to confront. How do people stand up and tell their stories in a land where stigma, denial, and retribution are extreme? What is the solution when the poor cannot tell their own story, and the intermediaries have to consider issues of confidentiality, legality, morality, accuracy and fidelity? The social conditions that prevent people from coming forward and telling their story are what make HIV spread in the first place. Nevertheless, I see some signs of hope. For example, as sex workers unite and ask for their rights they document their lives to be as full of concerns and humanness as those of other people; but can they start to make quilts documenting their fallen ones? As migrant workers come home to die, can communities remember them by name and face? Will the educated and well-to-do bravely withstand the pressures of society and admit and name their lost ones? Will more organizations start hospices and medical centers to care for the infected and help the public overcome their irrational fears? The speech of Prime Minister A. B. Vajpayee and the declaration at India's first National Convention of the Parliamentary Forum on HIV/AIDS, on 26-27 July 2003, are clearly steps in the right direction. But the road is very long and very hard.

I do not have any miracle solutions or suggestions on how to contain the further spread of HIV, but I firmly believe that unless and until we can document it in detail we will continue to lose. If, collectively, we do not find ways to create the conditions that will make this scourge real by giving names and faces to the lives it has taken or destroyed, the epidemic will continue to grow. Being able to document will signify that we have overcome stigma and denial. So, friends we have a yardstick by which to measure progress, and a clear goal for our advocacy. The numbers from NACO, no matter how accurate or large, will not be sufficient to galvanize society in time.

Rajan Gupta