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Perpectives/Hand Surgery in a Leprosy Village in India; a personal view
Hand Surgery in a Leprosy Village in India; a personal view
The word ‘Leprosy’ evokes figures swathed in rags, living in caves or huts, colonies where they go to die, shunned by society – for many, the images recalled from one’s childhood viewing of ‘Ben Hur’. Many are surprised that this medieval disease still exists. In fact the WHO registered half a million new leprosy patients during 2007 and has treated some 14 million sufferers since 1985. Leprosy is endemic to South America, Central Africa, parts of Asia. India has the largest single proportion of these cases, with Brasil and Indonesia recording the next most significant incidence.
A few facts: Leprosy affects nerves; the bacterium, closely related to the same bacterium that causes tuberculosis, colonises nerves, destroying the nerve fibres. The result is a paralysis of the muscles supplied by these major nerves, removing muscle power and sensation, and instability of joints. The hands and feet take the brunt of these effects, but other peripheries such as the face, are also affected, and lead to the characteristic features – the leonine face, collapsed nose, absent eyebrows, drooping eyelids.
Without sensation and with paralysis of muscles, minor trauma takes its toll. In environments where injury is common, bare feet labour on hard ground, ulcers and infection follow, bone structure collapses, toes and fingers, entire feet and hands shrink to short stumps – hence the misleading impression that ‘fingers and other parts are lost’ as if one could find them lying around, mislaid by their owners.
To a Hand Surgeon, the paralysed hands of leprosy present many challenges.
In 1998, I volunteered to take a surgical team to Anandwan, a community of some 2000 suffering with leprosy, in central India. I had never been to India. Those who know it will recognise the assault on all senses one comes to expect. This somehow heightens one’s level of awareness and the first days of our stay, the first of nine successive annual visits, were vivid and remain clear in the mind. I expected, at the least, that the leprosy sufferers would be…well - ‘patients’, reclusive, possibly quarantined, segregated. Not so. In fact we found a well-run village, a vibrant, self-sufficient community, at the same time ordinary and remarkable– people who met one’s look with a steady gaze, felt no need to hide or remain apart. In truth, we were the awkward minority, the visitors – they secure in their surroundings, the companionship of many others, all sharing the same situation.
This particular leprosy community was founded around 1950, the product of one remarkable man’s vision, Murlidhar Devidas Amte, known as Baba Amte. Born in 1914, Baba died in 2008. We met him on each of our visits, always horizontal, in bed, or in a mobile cot, wheeled around his village, needing much physical support and medical care, still living in Anandwan for the last 57 years of his life, from the day he founded the village. His physical infirmity belied his mental strength, the still fierce look in his eyes at once discomfiting and alluring. His story is untypical, but reveals what is possible with energy, vision, selflessness, courage and determination.
He was born into an affluent, privileged family, and qualified as a lawyer. Even in his youth he was by nature a rebel, shocking his peers by consorting with peasants, representing their legal rights, helping dig wells for the Harijans, even, in one period, setting to work cleaning the town’s latrines, to share and understand the burden of the lowest in his society. This, in liberal western societies, would already constitute unusual behaviour – in the rigid-classed and hierarchical India, in the early 1940’s, this was radical, even preposterous and provocative. Clearly he was never in the mould of one who turned away from tackling uncomfortable issues, from asking awkward questions of the establishment.
From the start, his approach has been to identify a problem, conceive a solution and then sweep away all that stood between the two coming together. Without seeking the grand gesture, his instinct led him to make a start on one’s immediate surroundings, gaining steady momentum towards his goal. He was attracted to those afflicted with leprosy, the most feared, excluded and destitute members of his society. He sought to learn to treat these sufferers, enrolling in the Calcutta school of Tropical Medicine.
He began work in the Warora Leprosy clinic, in his home village. New treatments, such as the sulpha based drugs were being developed and, for the first time, leprosy patients had available some form of medical treatment. There it might have rested – an eccentric, maverick, ex-lawyer, dismissed by his peers as ‘off the rails’, a zealot, working the rest of his days as another silent worker with leprosy sufferers.
But he soon realised that medical treatment provided only small relief to such patients. Leprosy is not fatal, its victims living a normal life span. The physician Ernest Muir has written ‘Leprosy is dreaded most of all diseases, not because it kills, but because it leaves alive’. Baba Amte realised that, if these people were truly to be helped, one would have to address all aspects of their lives, restore to them their dignity, the ability to earn a living, marry and raise families. He was to follow the Gandhian principle of making the victims of leprosy ‘as much a part of society as the tallest among us’.
Baba negotiated the granting of 50 acres of arid land. With a wife and two young sons, six leprosy patients, one cow for sustenance, they dug for water, cleared brush and rock, ploughed soil, soon coming to depend on it for their livelihood. Increasing numbers of leprosy sufferers came to this community, bringing skills such as carpentry, building, weaving, farming…skills which, in the outside world, they were prevented by their disease from pursuing, but nevertheless retained.
