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Feature

On the road to a dignified life

“Restoring dignity, thereby promoting empowerment and self-respect, should be the underlying principle while working with individuals affected by leprosy,” says Tina Mendis, Rehabilitation Coordinator, The Leprosy Mission (T.L.M.) India.

A mere mention of leprosy elicits fear, taboo and all kinds of fallacies mainly due to ignorance and partly due to the myths and irrational beliefs like divine wrath associated with the disease. For generations, people have feared leprosy, attaching severe social stigma to individuals who have the disease. This means that when someone finds out they have leprosy, their first reaction is, “Not me! What will I do?” Thousands of leprosy affected are rejected by their families and friends and ostracised by the communities in which they live. The age-old stigma associated with the disease continues to devastate people when they find out they have the disease. Poverty and lack of medical care compound the problems.

Picture of Ramesh being trained at TLM

Leprosy, also called Hansen’s disease, is a chronic infectious bacterial disease that affects the skin mucous membranes and the peripheral nerves. The early signs of leprosy are patches on the skin (that are usually lighter in colour than the surrounding skin; they may be reddish in colour and can have a raised edge) and a lack of sensation in the affected area. Sometimes leprosy is seen as thickening of the skin. The skin can be shiny and dry to touch. Nodules or lumps on the skin could also be caused due to leprosy. Like many other infections, leprosy can be treated with antibiotics. The treatment is termed as Multi Drug Therapy (M.D.T.). The drugs are highly effective. Just the first dose of the medicines kills more than 95 per cent of the bacteria. However, the tablets have to be taken for the prescribed period without a break.

M.D.T. has cured millions of people affected by leprosy. Many people however continue to take medical help at a late stage. This results in nerve damage and deprivation of sensation leading to problems in the face, hands and feet. Loss of sensation makes normal routine very difficult. The body is no longer protected from damage that would normally be avoided as a result of sensory alarms to the brain. Even when wounds are apparently visible, the demands of life for those economically challenged often deny them opportunities to avoid infection or further damage. Infection thus leads to deformity and ulcers. Since this is visible and often gives a grotesque look to the affected person, there is social ostracism from the family and community.

In a multi-religious and multi-lingual country like India, where culture, social status, relationships, sentiments and traditions are held dear, exclusion and deprivation from these networks can have a devastating impact on self-esteem, dignity and spiritual well-being.

Recognising this need, The Leprosy Mission (T.L.M.) India, has, over the last decade and a half, established a range of programmes under Community Based Rehabilitation (C.B.R.). These C.B.R. programmes facilitate a comprehensive and holistic approach to rehabilitation by building on local resources and enabling integration of beneficiaries into the mainstream. The long-term significance of these programmes is based on social change and total community development rather than on mere provision of services.

The programmes comprise of educational scholarships, vocational training, simple loan schemes, small sums of money that enable an individual affected by leprosy to re-establish his or her business and repay over a period of months or years. Larger projects focussing on beneficiaries being organised into Self Help Groups (S.H.G.s) so that they can act collectively to address common issues and problems have gained tremendous popularity. The S.H.Gs are integrated groups comprising of people affected by leprosy, general disabilities and individuals marginalised due to gender, poverty etc.

The Mission has initiated a total of 1400 S.H.Gs across India. Though most of these S.H.Gs exist in rural remote parts of India, some have also been formed in metros like Kolkata and Delhi. The S.H.Gs are given all relevant training in working as a group. Participatory aspects to identifying needs and coming up with solutions are ongoing activities. Group savings, micro credit and micro enterprise development constitute a major activity of the group. All the groups have opened savings accounts with local banks. The mission provides seed money to the groups. Banks in all areas have come forward to give loan assistance with heavy subsidies. In South India a total of 60 groups have been identified as role model groups and are providing training to other groups being initiated by the Government. Members of some S.H.Gs have taken loan in order to begin their own business ventures like rearing of cows, goats, etc. In some S.H.Gs, all the members have started collective business enterprises like farming, supplying midday meals to schools, etc.

Picture of Vijay a bycyle repair shop funded by TLM

These S.H.Gs are giving individuals with disabilities an identity. They are now being identified as contributing members of the community. Take for instance the S.H.G. by the name of Prerna formed in hamlet Kurmi, village Malpur, of Muzaffarpur District of Bihar in July of 2003. All 14 members of this S.H.G. are women, of which, seven are from leprosy backgrounds, four have locomotor disability and three are marginalised due to caste. Before the formation of this S.H.G., the women never participated openly and spent most of their time in cooking, washing, fetching water and other household chores. The women were restricted from going outside or talking to anyone outside the family. Their husbands work as labourers in the field and till date they hardly earn Rs. 20 to 40 a day, which is insufficient to run a family.

Initially the concept of women coming together in a group was a dream. After the first group meeting, many of the women had to face the wrath of their family members for venturing out of the house. Of the initial 17 members, three dropped out. They started their initial group savings with Rs. 10 a month. Slowly their savings grew and so did their confidence. A few women took loans from the group. Some used the loan money to repay old debts, others for decent clothes for their children. After a year of formation, they bought two petromax and started giving it on rent during marriage, festivals and other religious functions. This fetched them an earning of Rs.200 per month.

The women have also initiated the functional education of females in the village by hiring a local retired schoolteacher. They have started a drive to prevent early marriages of girls in their village. This year, they plan to hire 10 acres of land for farming. Their families, which initially shunned and criticised them, are now coming forward to support them in all their endeavours. Likewise, many of the S.H.Gs have moved ahead from saving and micro credit, and are involved in community development activities like building of roads, clean drinking water, education for the girl child, etc.

One must remember that there is no vaccination available for leprosy so even though it is on the decline, new cases will continue to occur. Any intervention for people affected by leprosy should be implemented bearing in mind the broad impact leprosy has on the individual’s physical, psychological, social and economic state. Programmes should ensure participation of the leprosy affected, their families and the community at large. Restoring dignity, thereby promoting empowerment and self-respect, should be the underlying principle while working with individuals affected by leprosy.