Hema Sarathy
Peter, Anita, John, Sunitha, Rohit and 20 others families, individuals, Children…. I was surprised to see how far the Freedom Foundation's AIDS Centre referred to as FF III has come since I last visited it in July 1997. What began as a response to a need when two people admitted for de-addiction tested positive, is now a full-fledged programme. Two months after FF III was started, its first woman patient, 8 months pregnant came for help. At this stage FF III was still groping in the dark.... learning on the job.... doing what they felt was right for their patients. Their team comprised a group of supporters and well - wishers who either gave them donations in kind or cash or raised support for them. I still remember what Karl Sequeira, who runs FF III along with Ashok Rao said. "There is a Higher Power. I know deep within that He won't give up on us. We have started the Centre with belief and hope. Pray with me that things work out well for FF III."
Today, when I stepped into the Centre, I could see that the Higher Power had not abandoned either FF III or its patients.
Freedom Foundation III the HIV/AIDS Centre looked pretty much the same from the outside -- clean, bright, with birds painted on the walls...inside the dormitory with its classroom. What was different then? The attitude....the atmosphere.... is different. Strains of a melodious carol drifting 'Showers of blessing we need' greet me as I walk in to meet Karl Sequeira and Ashok Rau. The choir from Little Sisters of the Poor, Mother Teresa's Charity, gather every Sunday to, conduct mass at FF III. A grateful Karl says, "Many organisations and individuals have come forward without hesitation to reach out in whatever way they can to our patients. I would like to stress that FF III is a secular organisation."
While talking about the issue of AIDS in developing countries like India, Ashok Rau,
Executive Trustee, Freedom Foundation, narrates his experience at the World AIDS
Conference at Geneva. The theme of the conference, 'Bridging the Gap' reiterated the
disparity in the manner in which developing and developed countries look at the issue of AIDS. The developed countries talk in terms of 'managing the virus' and the
advances they have made in research focuses on clinical management of the
disease, while the developing countries are clear about 'giving care and support' in a
social context. Further, a person who tests positive in developed countries has access
to social welfare and health care systems. Theirs is a battle for emotional support and
acceptance by society. While in the developing countries, it is a battle for
survival as well as acceptance by society.
A person affected by AIDS, after an initial stay at Freedom Foundation, leaves only to return within a short while due to critical illness. The reasons: ...no money...no
Job….no access to medicines...ill-equipped Government hospitals. Lack of cleanliness, nutritious food and medicine reduces the immunity, making them susceptible to various infections. The ideal situation is to integrate the AIDS patients into their community but one does not win a fight for rights as a single individual. Its important that society is conducive to accepting an AIDS patient before she/he can claim and exercise her/his rights as a human being.
Our conversation turned to the rehabilitation of persons with AIDS -- their acceptance in society. Immediately, Ashok and Karl piped in, "There is an internal process and an external factor that needs to be sensitised." The HIV infected person is given extensive counselling at the Centre. But mere acceptance that one has AIDS is not enough. The person must be able to support her/himself. Most of the people at FF III are housewives and families with few or no vocational skills, who have been abandoned. The family's resources have been spent on treating the male in the house. Take the case of Farzana, a commercial sex worker with no vocational skills. She is healthy and will be for another 7-10 years, at least, before the disease takes over. She has taken to rolling agarbathis. But she only earns a paltry sum of Rs. 300/- or so a month. She has to spend Rs. 100/- towards her travel to the agarbathi factory. The job will also expose her to lung infections and with low immunity she is likely to succumb sooner to the disease.
Most of the men, at FF III. are addicts and have contracted the disease through drug
abuse. John is a case in point. An alcoholic, it was found that the cause of his
repeated illness was HIV. He was referred to Samraksha, an organisaation dedicated
to rehabilitation of persons with HIV. However, every time he 'slipped' and gave
in to drinking, he also slipped on treatment for AIDS and regressed in health.
Consequently, Samraksha referred him to Freedom Foundation, which also offers a
programme for de-addiction and rehabilitation for alcoholics. 'Tending only to
HIV is self-defeating in John's case," says Chris, one of the staff members at FF III.
"Even if he gets a job after counselling and gaining strength to fight the disease, his
addiction is again going to lead him to a no win situation". With a combined
de-addiction programme and counselling geared towards acceptance of the disease,
he has a chance of living peacefully for a few years at least.
As far as external sensitisation goes -Ashok feels that, "the media has been very
supportive - both of the issue as well as our organisation. Especially newspapers like
the Times of India have been proactive in keeping in touch to find out about
developments in the field. Senior editors and reporters have fought for space in their
papers for covering the AIDS issue and to highlight the media's role vis-a-vis concern for this fast spreading and fatal disease, which might well take the form of an
epidemic." Commenting on how this has helped FF III and the AIDS issue as a whole
Ashok cites the example of a gentleman, an employee of the Karnataka State Road
Transport Corporation (KSRTC), who visited FF after reading about it in the papers.
He was so moved after meeting some of the patients that not only did he donate money, but went back to mobilise and collect money from 202 people from the KSRTC and donated a sum of Rs. 4.220/- to FF on Independence Day! Somewhere at the back of his mind he understood the plight of HIV positive patients and their needs. "In a nutshell, visibility for the organisation and the issue has initialised the process of acceptance in people's minds", says Ashok.
It's not just the media. Shops like Foodworld and Shoppers Slop have come forward to facilitate social mobilisation. Foodworld has a counter where the public can donate
some food to FF III. Generous contributions, mostly from housewives and foreigners has helped FF III immensely. The first ten days of the month bring in maximum contributions. Families have also shown involvement after starting in a small
way at Foodworld. One lady donated 20 kgs. of rice. This was just the beginning
of her relationship with FF III. She helped mobilise many other housewives to
contribute. A doctor who came to FF III to collect material for a thesis has brought a
team of 20 doctors who have volunteered their services. All these could not have
been possible without the media and organisations like Foodworld getting
involved.
"All this gives us hope," say Ashok and Karl. In 5-10 years time, the common man who rejected HIV infected people, has come forward to support the issue. "We see this going a long way, in time - this will contribute towards the normalisation of HIV
positive patients," says a confident Karl. The other challenge seems to be the
growing number of children who come to FF III with their families. Most of the parents are HIV positive. It does not seem conducive to bring up children in the shadow of death. Urvashi Sirohi, the newly appointed teacher and counsellor for the children says, "They pointed out the graves to me when we went for a walk. I thought this strange - rarely have I seen small children talking about the dead as normal conversation."
Karl Sequeira's vision for Freedom Foundation is an orphanage in the neighbourhood which will cater to children with HIV. Children born to HIV infected parents, but who themselves are HIV negative, could be placed in other orphanages. He also hopes to set up a laboratory with facilities for detecting HIV and a hospice where the HIV infected can die with dignity. "Of course", he adds, " we also need to strengthen our vocational programme for gainfully employing the patients, and develop an income generating unit."
I left FF III full of admiration for the kind of work they are involved in…
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