Arundhati Saha writes about an organisation that is struggling against all odds to help AIDS victims
Practice safe sex to avoid AIDS. This is one of the numerous campaigns one gets to see daily on TV or on hoardings. Acquired immune deficiency syndrome or AIDS as it is popularly known is a dreaded disease and spreading like wild fire. But to come face to face with the disease is a reality which most of us would like to overtook.
The plight of an AIDS victim is heart-rending especially in a society like ours where even a disease like leprosy is still considered a stigma. What happens to these people who are shunned by society and left to die without a morsel of dignity? In Bangalore, there's one organisation which is doing its bit for society by caring for victims of substance abuse and AIDS.
Freedom Foundation, a non-governmental organisation started in 1992 by Ashok K Rau and Karl Sequeira (both are armed with degrees in psychotherapy from the
US, is an intensive 12-step centered rehabilitation service centre for the treatment of patients of chemical dependency and AIDS. Various in-patient and outpatient services are available at a nominal fee.
The AIDS centre runs entirely on charity. It is a pioneering effort in the sense that it takes a holistic approach to these problems. Both Rao and Sequara were working in
the area of substance abuse when they realised that there was no comprehensive facility available for people with this problem.
''Only the medical model was available, which was hopelessly inadequate to deal with multi faceted problems of people addicted to drinking or drugs", says Rao. Having observed the bio-psycho-social model in the West, Rao realised that such a model was necessary in India. It was then that he decided to open such a centre.
In the course of their work, Rao and Sequeira were involved in employee assistance programmes (EAP) for different companies like BMEL offering free, confidential counselling to employees and their families including those workers who are living with HIV.
They found that in most corporate medical schemes, AIDS was totally ignored. The fact that every one out of 10 were open to the risk, is ignored. Thus a separate centre solely for AIDS patients was created.
Rao says (the level of social apathy that is meted out to patents of AIDS is unimaginable. Citing a classic case to Illustrate this, Rao said that there was this employee of a well-known software firm who tested HIV positive. Once the word spread, his wife who worked in a creche was soon told to leave her job and even his two daughters were not spared. They had to leave the school they were studying in and ultimately leave the neighbourhood.
To cope with rejection, fear counselling is necessary, says Rao and the centre provides a place where they try to build back the patient's support system by convincing their families to accept them. More often, the support system is not there at all, hence the centre provides a place where they can live in peace and engage in some meaningful activity. The centre has space to accommodate 30 patients. At present there are quite a few women and children. The day-care component patients
on a daily basis, the short-period stay and lastly people in their last stages (where they are looking for a place to die peacefully, are the three types of facilities available.
The key word is care, patients are made to feel human and not like social pariah. A well-trained team of doctors, therapists, counsellors and volunteers conduct regular sessions most of which are cathartic in nature. They concentrate on five key areas; emotional, physical, spiritual, mental, and inter-personal relationships. Patients are encouraged to express themselves through music and other arts.
The statistics of the disease are staggering. Rao says that according to underestimates nearly 3.5 million are afflicted with the disease seven million by the year 2000. Among them nearly 40 to 45 per cent are women. Thus a potential chunk of
of the workforce have the chance of being affected. But corporates are yet to realise the enormity of the problem.
From the humble beginnings at a residence in Fraser Town, the organisation has come a long way mainly because of the grit and determination of its founders. Rao says that with the increasing number of patients and a shoe-string budget, it is indeed difficult to run the place.
It was funded for one year by Levi Strauss as it is a part of the company policy to divert funds for such issues for a stipulated amount of time. The irony, says Rao, is that it took an MNC to address a local issue. More and more companies like Levis who have a futuristic outlook must contribute, says Rao. However, the local companies are anything but encouraging. When approached for funds, they just shrug
off the matter, says Rao and the organisation needs outside support.
The organisation is a ray of hope for AIDS victims.
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