2nd November 1997

A nest to fly to when in crisis

By Feizal Samath

When Nest workers walk into a Sri Lankan hospital ward and find an AIDS patient unattended to, after soiling his or her bed, they are angry, frustrated and sad. The patient is immediately cared for, with the clothes and bed linen removed and replaced by a clean set.

"A certain amount of frustration creeps in when nurses or doctors stop caring for these people," says Sally Hulugalle, a Nest director. The group's executive director Harini Amarasuriya concurs: "Our volunteers care deeply for these people and ensure that they receive the attention given to other patients." Nest is a charity group that cares for Sri Lanka's forgotten and ostracised people - victims of the Acquired Immune Deficiency Syndrome (AIDS) and those testing positive for the Human Immunodeficiency Virus (HIV).

In Hulugalle's own words, Nest is "a place you can fly to in a crisis." The work of the groupof dedicated volunteers stretches across all barriers and boundaries. It is also one of the few or probably the only non-governmental agency that looks after the families of AIDS victims even after the patient dies. "Our work does not end after someone dies. We are concerned about the victim's family and help them to face the future,"says Amarasuriya.

"There is nothing but glowing tributes and praise for the group," says Hemamal Jayawardene, the UN programme officer in Sri Lanka in charge of HIV/AIDS programmes: "I had not seen the men and women behind it until last year when I was invited to make a presentation on HIV and Human Rights at one of their seminars.

"Here I met a group of young, committed ones, dedicated to the work they were doing. I failed to see what they were getting in return. In fact I still do not. For them, a neglected child, a violated woman, a man living with the HIV virus were all the same. They were all part of the human family. They care not just through words, but physically."

Mr.Jayawardene is now part of the group and a Nest board director. It was the same dedication that impressed Dr Diyanath Samarasinghe, one of the country's most eminent psychiatrists and patron of Nest.

In Nest's 1996-97 annual report, he wrote: "I discovered last year that I came away from Nest feeling more affection and respect for individuals I met there than perhaps I would have felt if I had met them elsewhere. Does something in the culture of Nest bring out the attractive and admirable in people? If something does, I hope I discover next year what it is."

Sri Lanka has fewer AIDS victims than the rest of Asia. The epidemic's impact on economic development is minimal and tourist inflows, a key foreign exchange earner and a could-be risk area, are unlikely to contribute significantly to the transmission of the disease among locals, experts say.

So far 60 out of 75 AIDS patients have died since the first case was reported in1987 in Sri Lanka. There are 200 people who are confirmed HIV carriers while estimates on HIV carriers range from 6,000 to 8,000.

Among the many groups at risk are Sri Lanka's approximately 12,000 commercial sex workers or prostitutes, migrant workers, prisoners and female workers at the country's free trade zones where casual sexual relationships are high.

According to projections contained in a United Nations Development Programme-commissioned report, Sri Lanka could by the year 2005 have as many as 80,000 cumulative cases of HIV infection with an HIV prevalence rate of 0.54 per cent among the population aged 15 to 64. With a lot of funds available from overseas donors, private and government, there are 140-odd NGOs working in HIV and AIDS-related fields, but many with dubious reputations.

Just a few are seriously dedicated to their task. Mallika Ganasinghe, lawyer and assistant secretary of the Community Front for Prevention of AIDS (CFPA) stresses the need for a strict monitoring process by donors to ensure that funds are properly spent.

"There are some groups, mostly small, who hold a few workshops, print a few advocacy posters and then their work is complete. They get a lot of money for this," she said, adding that by this NGOs were sometimes viewed with suspicion.

The CFPA has been active in the advocacy field - creating an awareness about HIV and AIDS through the media, regular seminars and five counselling groups in the southern beach resorts of Bentota, Hikkaduwa, Galle, Tangalle and Matara - mainly targeting commercial sex workers.

"We select beach boys and female sex workers with leadership qualities and train them to be counsellors. These peer-educators in turn talk to other commercial sex workers making them aware of AIDS, other sexually transmitted diseases and the need to use condoms," she said.

Mrs. Ganasinghe said that commercial sex workers should be treated with a little more respect by society because they "are also doing a job like us. Only our job is accepted by society and theirs is not." She said that the CFPA doesn't urge sex workers to give up their "work"."Instead - particularly in the case of streetwalkers who are shabbily dressed and as a result poorly paid by their clients - we tell the women to dress better and be clean, so that they get a better fee and need fewer clients to make the same amount of money."

"The fewer clients _ the less chance of contracting any disease," she said.

Nest stirs change in people's lives. Sometimes trouble. When Nest workers saw 25 children in a government remand home sleeping on the cement floor in a small locked room with no toilet facilities, they protested. At a women's mental hospital, Nest workers found women tied to a wall with rope for several hours. They were untied.

Jeanne Maracek, vice-patron of Nest and professor of psychology at Swarthmore College, Pennsylvania in the United States said, in a recent note, Nest workers stand out in contrast to customary practices of many NGOs and government agencies. Nest cultivates an image that is low key.

Workers do not wear uniforms or badges, nor do Nest centres have signboards. The vehicles are mopeds (small scooters), not Pajeros and they do not have fancy logos on them. Workers often go on foot because the path is too rugged even for a moped. All this is to avoid setting Nest apart from the community, setting workers apart from local residents, and most important, singling out those seeking help from Nest. Maracek said workers immersed themselves in all the messy, piecemeal emergencies and exigencies of life. "The community work is not about grand schemes or sweeping visions of community upliftment. It is continual, quotidian slogging," she said.

Nest's work began 11 years ago, it says, with the forgotten women of the Mulleriyawa mental hospital.

If a group were ever deprived of autonomy, dignity and happiness, it was those women. They were over-drugged, subjected to doses of electroconvulsive therapy, unheard of in modern psychiatric practice, badly clothed (if they had clothes at all), ill-fed, housed in slum conditions, and subjected to a variety of abuses by their caretakers.

Nest found them a home - a bright clean, airy house with flowers in the garden, a friendly dog and even some chickens and rabbits Maracek said, adding "the women who came to live there were encouraged towards self-sufficiency and autonomy, to live a life as free of external regulation and restraint as they could possibly manage." The group is unable to give any numbers or statistics with regard to their work, also for a reason.

Executive director Amarasuriya says "we don't want to put a number on a person. We want to care for them as normal human beings." She said their biggest challenge was to try and convince an AIDS patient to live a normal life. "Through counselling and care we try to enthuse them to get on with their lives."

She still remembers the day Nest workers persuaded hospital authorities to allow an AIDS patient, who was dying, to return home, which is not the normal practice.

The patient, a Moslem, had pleaded to be taken home. "The patient had tears of gratitude in his eyes when taken home. He died half an hour later," she said.

Since under Moslem customs the dead must be buried within 24 hours, Nest immediately stepped in to speed up the generally long process of getting a death certificate and other formalities and even paid for funeral expenses. Workers also helped to bury the victim since some relatives were reluctant to touch the body. Mrs. Hulugalle says she is sometimes worried about the workers because they don't wear any protective gear, preferring instead to take only standard safety precautions when handling AIDS patients. "Such is their dedication," she says.

Continue to Plus page 13 * Hands that create beauty * They are not just numbers!

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