Social stigma, ignorance still plague HIV-positive people

[Guest guest]

Social stigma, ignorance still plague HIV-positive people

NGOs believe talking about the disease will generate greater

awareness; groups focus on financial help, too

Taru Bahl

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.

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 & #8202;to & #8202;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

control.

A large & #8202;number among & #8202;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

lakh.

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. "

http://www.livemint.com/2009/01/06210856/Social-stigma-ignorance-

still.html

[Guest guest]

Re: Social stigma, ignorance still plague HIV-positive people

/message/9801

Dear FORUM,

The real heroes in the article are the family who insist on not

charging Hussain a single penny despite knowing his status or the

local school teacher who urged him to seek better information and

thus take charge of his condition. Normal, everyday people who

dowhatever they can to make that small degree of difference when it

matters most.

However, having said that, I would urge to please, please stop cut-

paste self-promotion. Especially with such pessimistic views on

Stigma & Ignorance related to HIV & AIDS.

I'm sorry but it does not help those who are making genuine,

courageous efforts to mitigate the situation. Quotes like that coming

from someone in a position of influence would probably shatter those

who are personaly dealing with such situations.

Imagine if the same people who have been featured in the article were to read

this. On one hand, the article by Taru Bahl quite succinctly tells positive

personal stories like Draupadi and Hussain and on the other, goes on to call a

condition a disease.

This, sadly, is the case with many reports and journals in the field as well.

I wish there are more positive stories than the fatalistic, hopeless

and rhetorical ones we most often see in the media.

For me, AIDS INEIA E-Forum is a fantastic platforms to learn so much from

others. Hope this continues without such one-off postings to highlight a quote.

We must all admit that all of us on this platform are well aware of the health

& stigma situation and need to take concrete steps to mitigate the same with a

positive attitude.

Sameer Thakur

Consultant

New Delhi

91 99996 00772

e-mail: <mail2sameerthakur@...>