The Sahyog saga

Published : Oct 11, 2002 00:00 IST

On Sahyog, which has cared for and cured leprosy-afflicted persons in Gujarat.

ON a hot summer noon about six years ago, I was driving through an almost deserted district road on my way to the tehsil headquarters at Modassa, a part of my routine as the District Development Officer of Sabarkantha district of Gujarat. There, parked by the roadside, I noticed an Ambassador car with its bonnet open and the driver bent over it. An elderly man, a woman and a young girl were standing alongside in the middle of this wilderness. Prithvisingh, my driver, turned back and informed me that this was Sureshbhai Soni of Sahyog.

Although one had heard a great deal about this man, an institution in himself, who championed the cause of leprosy-afflicted persons across the State, I had never met him till then.

Introducing myself, I offered to take the family along. The half-hour journey was an eye-opener as one heard about the work at Sahyog, the treatment it provided, the fight against social stigma and rehabilitation issues of leprosy.

Soon I became a regular visitor at Sahyog, meeting the residents, talking to them, sharing their cheer in spite of some very bitter and sad stories.

Leprosy has found mention in the Sushruta Samhita (600 B.C.), the Bible and ancient Chinese literature. For centuries, the world over, `lepers' have been isolated as untouchables and even burnt alive in some cases. Today, leprosy is curable by means of a World Health Organisation (WHO)-recommended multi-drug therapy. However, post-treatment rehabilitation and acceptance in society poses a major challenge. Take the case of Ramesh Mandal, who has an M.A. in History and worked as a lecturer in Bihar living a complete happy family life. It did not strike him even remotely that chalk pieces falling off while writing on the blackboard and a strange numbness in his fingers making `tearing a roti' a difficult task, forebode leprosy. The symptoms were ignored for quite long before the disease was eventually detected, even after which proper treatment was not given. Medical problems, the stigma, mental torture, ostracisation from society and the indifference of his own family members made him move from place to place until he landed at Sahyog.

Sureshbhai Soni quit his job as a mathematics lecturer to start Sahyog with 20 leprosy-afflicted persons on September 14, 1988. It was established with the objectives of undertaking survey, treatment and rehabilitation of leprosy-afflicted persons. Sureshbhai's dedication and sincerity speak volumes. The ashram now has 814 residents, a large number of them staying in their houses, earning their own livelihood and cooking their own food. The community panchayat meets regularly and facilitates decision-making and smooth administration.

With awareness building towards leprosy and post-cure rehabilitation as one of the main focus items, workshops on leprosy were frequently organised to sensitise officers from the district to village levels. In a lighter vein, two district heads were once overheard saying that even their dreams were peppered with leprosy-related themes!

Intensive technical training was provided for the medical officers and their staff on diagnosis and treatment of leprosy. Consequently, the number of cases identified in the district started going up, ringing alarm bells in certain sections. We persisted. It is imperative that the identification of leprosy cases be done thoroughly rather than their being swept under the carpet. Steadily, prevalence in the district came down, going below the State average.

In order to free the victims of their deformities and disabilities, mega-camps for reconstructive surgery were started in the State-sponsored Kushtarog Kayakalp Karyakram. As many as 4,711 reconstructive surgeries have been carried out in Gujarat since 1996. This has made a big dent on the disability and deformity load of leprosy.

Even after being cured, insensate hands and feet made the inmates prone to injuries and lesions. In view of this, stone paving was carried out on the kuccha walkways under the infrastructure grant of the District Rural Development Agency (DRDA). It was encouraging that our team of officers from diverse backgrounds worked with a high level of sensitivity. Concerted efforts for self-employment through training and earning assets have been put in at Sahyog. Activities such as making coir mats, candles, chalks, ropes and articles of FRP (fibre reinforced plastics) are going on, ensuring livelihood for the inmates.

RECENTLY on a visit to the district, I decided to meet Sureshbai and his parivar at the ashram. After taking a round and interacting with the inmates, I met a visibly healthier and happier Ramesh. Picking up the threads from where we had left, I started talking to him in Sureshbhai's spartan office. Ramesh had got remarried and was blessed with a baby in 1998. Tarun now goes to the Balmandir. With a beaming smile, Ramesh went on to say that his 82-year-old mother is now staying with them at the house provided at the ashram. He was putting together street plays, `Anpadh' `Bal Gangadhar Tilak' and `Bal Adalat' using child artists residing in the ashram. Such plays are extremely well received by the residents of the area, thereby increasing their social acceptability. His troupe of child artists has grown in popularity and they are now embarking on a series of programmes for reforms in the education sector. "Wouldn't it be heartening if some organisations came forward to employ skilled, educated and motivated human beings cured of leprosy, I wondered. Ramesh said: "Even someone strong and confident like me almost completely withered in bearing the cross of the social stigma and ostracisation.'' If we can sensitise people at large and treat those suffering from leprosy, they can be woven back into the mainstream. As Mahatma Gandhi said, "Leprosy work is not merely medical relief, it is transforming frustration of life into the joy of dedication, personal ambition into selfless service.''

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