Mar 1, 2011
The Sylff Fellows of Jadavpur University (JU), India, recently paid a visit to leprosy patients at the Leprosy Mission Hospital in Kolkata, India. This is one of the annual social work activities of the JU-Sylff Association. Here is a brief report by Rimple Mehta and other members of the Association who visited the hospital.
“The biggest disease today is not leprosy or tuberculosis, but rather the feeling of being unwanted.” ~ Mother Teresa
India continues to record the highest number of new leprosy cases in the world followed by Brazil and Indonesia. While globally in 2008, 2.5 lakh new cases of leprosy were recorded, India accounted for 1.37 lakh of those cases. According to WHO's latest estimate, around 35% of new leprosy cases in India — 48,000 — are women. India also recorded the highest number of children newly detected with leprosy — 13,610. India, which is home to over 700 leper colonies, was also ahead of all other countries in the number of relapse cases at 325.
Leprosy is a chronic infectious disease which is curable and treatment provided in the early stages averts disability. The majority of cases (mainly clinically diagnosed) are treated with antibiotics. The recommended antibiotics, their dosages, and length of time of administration are based on the form or classification of the disease and whether or not the patient is supervised by a medical professional. The curable disease of Leprosy suffers from the misfortune of being associated with many baseless prejudices leading the victims to be socially ostracized. The fear of being unwanted looms large in every human being and if you are someone affected by a chronic disease this fear turns into an everyday reality. Social stigma, fear of death and alienation are reasons connected to the initial hiding of this disease by patients. Leprosy is not hereditary, but recent findings suggest susceptibility to the disease may have a genetic basis. Many people get exposed to leprosy throughout the world, but the disease is not highly contagious; researchers suggest that over 95% of exposures result in no disease, and further studies suggest that susceptibility may be based, in part, by a person's genetic makeup. Therefore, this cannot be fixed entirely as a poor man's disease but something whose triggers are still at least medically indeterminate. Nonetheless, the question of stigma is very closely related to the issues of poverty.
The Jadavpur University SYLFF Association envisaged with great enthusiasm and sinceritythe Social Action Program under the provision of ‘Social Network Program’ of Tokyo Foundation. Since its inception, the Social Action Program has aimed at bringing about a qualitative change in the lives of the underprivileged and those afflicted by physical and mental problems through innovative ideas, sustained action and definite interactional engagement along with certain token material contributions. The members of the JU-SYLFF Association were deeply moved by the untiring efforts of Mr. Sasakawa to fight the curse of Leprosy and were inspired by his speech at Jadavpur University in 2005 urging all to join him in this noble mission. For the last six years, the Association has been trying to, in their own small way, work for the cause of the leprosy patients. It has tried to engage in quality interaction with the patients, bringing some relief to their otherwise routine life confined within the medical wards and largely writ by social stigma. The fellows of the Association were brought in contact with the ‘Premananda Leprosy Mission’ of Kolkata (in association with The Leprosy Mission in Canada which is a nongovernmentorganization) which has taken up the cudgel to banish such prejudices and render comfort and cure to the hapless patients suffering from this disease. Over the last two decades, The Leprosy Mission has been working to decrease the prevalence of leprosy in Kolkata, India through providing care at Premananda Memorial Leprosy Hospital. This community based hospital cares for leprosy complications, deformity prevention and surgical correction of deformation. It is the only hospital in Kolkata that focuses on the prevention and correction of deformity and rehabilitation of leprosy patients.
The Leprosy Mission took over and built the hospital in the year 1987. Before that it was run as Premananda Leprosy Dispensary by Oxford Mission. It started as 35 bedded hospital, now its 78 bedded. It has specialised departments for leprosy as well as some general treatments. The situation in West Bengal is such that they still see a number of untreated leprosy cases and most of them come with deformities, some among them have a very infective type of the disease. The leprosy mission as part of its initiatives has community development projects adjacent to the hospital in the slums to create awareness (which also includes other people with disabilities) to uplift their lives and get rid of the stigma associated with leprosy.
They also have some community projects in the Sunderbans. They also have different rehabilitation programs for the children who are for example not able to go to school because of their financial situation and a history of leprosy. They are provided aid through the ‘Catch them Young Project’. Micro credit finance is also given to economically weak people for pursuing small scale business. There is also a scheme called ‘Reuniting with Families’ for people who are not being taken care of by their families. Sometimes, families with small houses may have a problem to keep the patients especially with deformities comfortably. If there is land the mission builds them a no cost house with all the provisions for handicapped persons providing them with wheelchairs and all also with small amount of pension so that the family members may take care of them.
The Leprosy Mission helps leprosy patients find solutions to physical problems faced because of their disease. By providing out-patient services in dermatology, ophthalmology and surgery, more patients will receive help for their physical ailments. It provides remarkable medical and social service for patients afflicted by acquired and congenital deformities, dermatological difficulties and problems in vision. They have well-equipped wards in Leprosy, Dermatology, Surgery, Ophthalmology and Physiotherapy which accommodate ‘out patients’ and ‘in patients’. These are supplemented by Leprosy clinics, general medical and surgical clinics, eye clinics and foot clinic. In addition to providing treatment, the Leprosy Mission is also focusing on increasing awareness and knowledge of leprosy in the medical community. A team of professionals with a greater depth of knowledge in the field of leprosy will allow for better care for those affected by leprosy. While much has been done, many major challenges still exist. A large number of patients have deformities and disabilities. Many of these patients simply cannot afford investigations and treatment elsewhere for associated illnesses such as severe anemia, tuberculosis and diabetes. Many are uneducated and live in poor conditions in communities that still impose stigma against those with leprosy.
The patients come more or less from all over India but apart from patients in West Bengal it is mostly the migrant populations from Bihar, Orissa, Uttar Pradesh, and Jharkhand etc. Except for very few isolated cases the family members of the patients do come to visit them and take them back home when they are to be released from the hospital. A lot of things have changed over the years. Earlier they had to go from house to house to find out cases but now people are more aware. Yet sometimes the patients themselves do feel hesitant to reveal their disease and come directly to a Leprosy Hospital especially if it’s near their homes or also in their hometowns.
During the Jadavpur University SYLFF Regional Forum 2007, the SYLFF Fellows from different institutions were escorted to the Leprosy Mission on the day of Social Action. Medical briefing about the disease of leprosy by the doctors was followed by a detailed and a very insightful interactive session. The discussion was made extremely vibrant by the exchange of information about the countries from where the Fellows hailed ideas about dealing with the physical and social constraints in life, and even sharing of personal experiences. Thereafter, the Association wanted to help them build an asset. When asked what asset could be the best suited for this need, the patients wanted a television. In February, 2008, the Fellows conducted a function at the Leprosy Mission where they presented a colour television to the patients. It was installed at the male ward of the hospital which was shared by around eight patients.
The sustained efforts by the Fellows have included visits to the Leprosy Mission each year to reach out to the people affected by leprosy and to allay their insecurities about being unwanted. The visit is usually made in the month of December, prior to Christmas in order to evoke a sense of festivities among the patients affected by leprosy. In 2010 we made the visit on the 6th of December. There were about 65 patients who we interacted with. We distributed cakes, biscuits, toffees and some savouries among the patients who expressed their delight and gratefulness towards the gesture.
The counsellor of the hospital took us around to the different wards where the patients were stationed based on the type of ailment they had. There were separate wards for men and women. Their facial expressions revealed the deep sense of loneliness that marks their life as a result of the chronic disease that they have acquired. It seemed as if each face had a different story to tell us. Their struggles and remarkable ability to endure pain has a lesson for each one of us. However, as a society we have a long way to go before these people are integrated as acceptable members of a community. The hospital staff and the doctors seemed to be sensitive to the needs of the patients. After the initial round of interaction with the patients, a Hindi film was screened for the outpatients. Apart from this, we donated some DVDs with a combination of Hindi and Bengali comedy films, to the leprosy mission so that the patients can get some time off from their daily mundane routine. We did this after enquiring at the hospital about the availability of a DVD player. This was a small step towards making a sustainable contribution for the patients.
The Association is continuously thinking of such sustainable plans and hopes to contribute on a bigger scale in its future visits. The patients look forward to our annual visit as it gives them a sense of acceptance in society and a reason to move on. A day from our study/work schedules means a lot to them and works as an energy booster for the patients who spend most of the time in isolation from family and friends. We believe that as social scientists it’s our responsibility to not only report facts but to also envision sustainable solutions for social problems. As social scientists we owe this to the society and we need to channelize our efforts through appropriate social action projects. The Association pledges to work in earnest to nurture the ties with the Leprosy Mission and continue to contribute responsibly in the future to the mission of building Social Networks through the Social Action Program.
The Association would like to thank Dr. Fehlena Roberts at the Premananda Memorial Leprosy Hospital for taking some time off and talking to us with regard to the brief history of the hospital, the various initiatives taken and the present situation of Leprosy in West Bengal.