Social stigma, ignorance still plague HIV-positive people

NGOs believe talking about the disease will generate greater
awareness; groups focus on financial help, too

New Delhi: Imagine a 13-year-old having to live in a hovel outside a
village where he suffers complete isolation as an outcast, with his
mother leaving him food at a safe distance.

This scene from a medieval nightmare was enacted in modern day India,
as ignorance on HIV/AIDS continues to drive how society deals with
people afflicted with it.

Taru Bahl for,

Sahil Hussain was infected with HIV from a blood transfusion at a
Mumbai hospital after an accident in 1994, when he was 12. On his
return to the village in Bihar’s Darbhanga district, a panic-stricken
community cast him out, misled by local doctors into believing he
carried a deadly infectious disease. His mother treated him "as if
feeding a dangerous animal in a cage", says Hussain, 26. "There are
thousands whose stories are like mine."

Social stigma

Social stigma that trails HIV/AIDS is a familiar story worldwide and
India is no exception. "Stigma attached to what is largely considered
a sexually transmitted disease will take decades to go," says Avnish Jolly, member, country resource team (solution exchange) at United Nations’ India office and an AIDS activist in Chandigarh.

"After all, social evils like untouchability and casteism, in spite
of centuries of reform and development, haven’t vanished from our
villages." Many in the interiors of Punjab prefer the veil of
secrecy, petrified of being ostracized and thrown out of their homes
and villages, he adds.

At least 2.32 million people were living with the disease in India at
the end of 2007, according to the National AIDS Control Organisation,
an agency of the ministry of health and family welfare charged with
implementing the government’s response to HIV/AIDS prevention and

A large number among them, are facing social ostracism, while many are increasingly facing the situation with fortitude and courage.

Hussain, for instance, was lucky because a local school teacher gave
him some money in 1998 and urged him to escape to Delhi, where he
said Hussain would find help, which he did with information he got
from a billboard at the railway station.

He has since been assisted by a non-profit organization to receive
treatment for bone tuberculosis, which he contracted last year, as
his infection progressed. The Indian Spinal Injuries Centre in the
city waived Rs5 lakh for the three surgeries he underwent. He is now
on the second line of tuberculosis treatment that costs Rs12,000 a
month, of which he gets Rs8,000 from ActionAid, a global anti-poverty
agency towards a fellowship.

Ways to cope

There are many more like him in India who face oppression and
ostracism because of their affliction. One way they cope is to seek
out people in the same predicament, form small groups and help each
other out. For example, Draupadi from Latur, Maharashtra, was silent
about the HIV-positive status of her family for years. But when her
husband and daughter died, she realized she would be stripped of
dignity without money.

Initially, her in-laws would not accept that it was her trucker
husband who had knowingly infected her. He had married her on a local
quack’s advice, who had said marrying a vigin would cure him. She
threatened to take up the matter with the village council, which led
to the extended family selling a piece of land and giving her Rs2.5

Draupadi then set up a self-help group with 20 HIV-positive
women. "By sharing her story, she motivated women to get their
migrant husbands tested for HIV," says Zia Bano, president, Social
Action for Transformation and Harmony, a local non-governmental
organization working with vulnerable women, children and youth.

Communities in different parts of India react in different way to the
scourge. "In Punjab, where the sex ratio is the highest, and in
Haryana and Rajasthan, where women do not have a voice in the family,
there is greater stigma and discrimination," says Padmavati, a
Chennai-based consultant at the Rajiv Gandhi Foundation, "but in
progressive states like Andhra Pradesh and Tamil Nadu, which in spite
of high HIV prevalence, report fewer cases of stigma."

Looking ahead
So, what is the way forward? Padmavati says cultural and social
taboos, education, status of women and awareness levels largely
determine attitudes towards a person living with HIV/AIDS. According
to Kapil Kaul, country head (advocacy, resource and communication) at
non-profit HelpAge India, HIV in India continues to be linked to high-
risk groups who do not have social standing. "For discrimination to
end, we have to create sympathy and understanding for high-risk
groups, and that is a huge campaign which must penetrate social
norms…and the campaign to end stigma and discrimination must have a
5-10 year perspective with definite milestones," he says, adding that
the "present approach is devoid of strategy".

Normalization can only happen through familiarization, according to
Nirupama Rao, state youth coordinator for the Andhra Pradesh State
AIDS Control Society. "The more you talk about it, the more stigma
will come down," she says.

Rao also believes supportive communities have to be built through
initiatives such as the one that brought 7,000 HIV-positive people
from 23 districts on one platform in December 2007 in Hyderabad to
share stories. She says having a testing centre every 10km in Chennai
has made HIV more "visible".

Hussain says media attention in the last few years has led to greater
acceptance. "I live as a paying guest in a family that insists on not
charging me a penny. They know I am positive. My neighbours think I
work in the field of HIV, though I don’t think it would make a
difference if they knew my status."

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