AIDS Sutra: Untold Stories from India

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AIDS Sutra: Untold Stories from India

Deepali Gaur Singh

Stories in a new anthology on HIV in India swing from touching to tortured, poignant to pragmatic, as the writers expose the lives of the real people behind the stereotypes of sex workers, the police, homosexuals, transgenders and most of all, positive persons.

AIDSSUTRA: Untold Stories from India,
an anthology of stories relating to HIV from sixteen well-known Indian writers, was launched in the country in early August. Published
in collaboration with Avahan, the India AIDS initiative of the Bill
& Melinda Gates Foundation, the book is an assortment of case studies,
narratives, anecdotes and snapshots from across the country, all linked by their examination of the effects of HIV on their lives and their country. 

HIV enjoys the diabolic distinction
of having gained infamy as a dreaded disease that
everyone knows of but knows very little about – a disease that belongs
to another group, another community, another world. As a result, it’s
also a disease mired more in controversy and misconceptions than any
real, reliable or useful information. And so while some of the book’s narratives might
seem familiar, there are others that are still unheard of.
From the first recorded case of HIV in India, the fears and
paranoia enveloping it at the time, and how much has changed since, the anthology covers the whole journey.  

Economist Amartya Sen’s words "human
ordeals thrive on ignorance" in the foreword sum up one of the critical
issues plaguing HIV in the country — that both the lack of information
and abundance of misinformation are at the heart of the continuing discrimination
faced by positive persons both in terms of access to health care and
social exploitation and victimization which denies them and their families
even basic human rights. In a tongue-in-cheek observation, to drive
home this particular difficulty of misinformation, Sen refers to the
bloated National Intelligence Estimates provided by the CIA of the 20-25
million AIDS cases in India by 2010 stating "how easily an organization
dedicated to intelligence can fail to give much evidence of it." Subsequently,
even the United Nation’s five million estimate of HIV/AIDS cases in
India was halved, last year, to between 2 and 3 million cases in the

The essays, case studies, anecdotes,
narratives, each in the authors’ own genres, swing in turn from being
touching to tortured, tragic to beautiful, poignant to pragmatic, as
the writers expose the layers and lives of the real people behind the
societal stereotypes of sex workers, truck drivers, the police, homosexuals,
transgenders and most of all, positive persons. It brings to life the
day-to-day struggles of people who have been marginalized by virtue
of their profession or their sexual orientation, with the positive status
only heightening their vulnerability further. And even as it gives a
face and identity to these faceless millions and their families, taking
us through their travails and tribulations, it also scratches the surface
to expose the complexities that the HIV status brings with it. 

Sex. Abortion. Parenthood. Power.

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Toku’s struggle – a physician who
cares for AIDS patients – traverses legal corridors as
we hear of his fight for the right to confidentiality of HIV test results
– his own. What makes this story particularly important is that legal
battles surrounding rights of positive persons are bound to be few and
far between simply because often the high risk groups are also the ones
that already inhabit the peripheries of the social system and HIV only
entrenches this isolation. Toku’s experience also exposes the convoluted
interpretation of the right to privacy of an AIDS patient, which leads
to a judgement denying positive persons the right to marry. While the
judgement was dismissed in 2002, it reveals the limited avenues
for redressal.

And then there is William Dalrymple’s
agonizing revelation of Rani’s complete denial of her positive status
as she plans a quiet farm life for herself and her family away from
her profession, with the savings she has managed so far. Salman Rushdie’s
characteristic flair is evident in the equally flamboyant subject of
his narrative — Laxmi the "first drag queen of Mumbai" — as well
as a lucid account of the sub culture of the hijras, which even
today try and blend their traditional roles of harbingers of good fortune
with the modern day perils of their risky lifestyle. And there is "Soon."
the faceless protagonist of Vikram Seth’s narrative. In a candid admission
of his own fears and subsequent cautiousness, Seth uses a poem he wrote
in the 1980s amidst an atmosphere of fear of this "new disease called
AIDS" and the accompanying lack of understanding, prejudices and myths
surrounding the virus. The poem itself and the recollection of the times
is a stunning vignette of the hopelessness, love and grief in an era
dominated by the absence of an effective treatment for the virus.

There is the arbitrary interpretation
of the Bombay Police Act that punishes indecency in public, leaving sex
workers like Ashok and Savitha at the mercy of these law-enforcers and
upholders of public decency, thereby paying the price for their "immorality"
by frequent rape. Such relationships exist within the MSM (men who have sex with
men) community as well – between the kothis
and panthis as the former fulfil the
sexual roles of women – and in this rather unequal relationship is embedded the
heartrending compromise where being paid for sex becomes the parameter for ones’

As the writers travel across the country
to hear individuals’ stories,
universal in their spiral of exploitation and vulnerability, they help
unravel the subtle differences between each of these groups, whether
it is the transsexuals, transvestites and transgenders; the MSM community
who consider themselves different from the gay community; or the
contexts governing the sex workers in different parts
of the country; the IDUs and their vulnerability.  

With just a little over six percent
of the 2.5 million infected persons having access to the antiretroviral
drugs treatment in 2007 it is accessibility from both ends – that the government
reach to all those in need and the accessibility of the positive persons
to these facilities – that becomes imperative. While the lack of services
directly impacts the positive person, the lack of information and misinformation
impacts not just the positive persons, but also their families and the manner
in which they are looked upon and treated within their communities. 

book comes at a time of mixed fortunes for these groups/minorities since the Union
Health Minister
has shown serious intent to amend Section 377 – which in its current form criminalizes
homosexuality in the country, even almost one and a half century after it was first
declared illegal under British rule – without compromising on protection of
child rights and from child abuse. On the other side are the government’s contentious
moves to amend
the Immoral Trafficking (Prevention) Act
which many believe will push the trade
into darker zones and alleys of victimization.

And yet these are narratives of people
who even in the near hopeless situations have worked out compromises
sometimes with their spouses – like the wife who knows about her husband’s
homosexuality and is at peace with it; a son who can stay at home as
long as he dresses like a man indoors even as he leads a double life
the minute he steps out of the secure confines of his home; or with
law-enforcers where these groups learn to negotiate within already claustrophobic

Sales proceeds from the book – Rs.
80 (US$2) from each book purchased – will go towards a fund for AIDS

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