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