Why has the 4 million HIV + failed to elict the required response?

[Guest guest]

WHY HAS THE NUMBER 4 MILLION HIV+ FAILED TO ELICIT THE REQUIRED

RESPONSE IN INDIA?

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 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 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, 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 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 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

http://t8web.lanl.gov/people/rajan/AIDS-india/