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 World Health Organisation registered 219,075 new leprosy patients during 2011 (excluding small numbers of cases in Europe) 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.
The story that leads to today’s Anandwan is a relatively simple one of steady growth; the village is now entirely self sufficient in all food and water, growing all essentials, and more – the surplus sold to fund the purchase of what cannot be produced. All cloth is woven, and fabricated, from cotton grown by the community. Metalwork, woodwork, rug-making, leatherwork, all forms of constructive materials are not only made there, but in the making, youths from the surrounding areas are trained to a level enabling them to earn a living.
It has expanded to 450 acres of some of the most fertile land in the region, a community of 2000 afflicted by leprosy, led and managed by many supportive workers including three generations of Baba Amte’s own family. One son, Pradesh, a surgeon, has set up his own project, in remote Hemel Khasa, amongst tribal people, providing the sole medical care to some 20,000 individuals.
The vision of this remarkable man has translated into an untold number of lives improved, saved from destitution, stigma, exclusion. It is ironic that, in helping themselves, without outside aid, it is the community of leprosy sufferers which now generates a livelihood for those in surrounding areas who are not afflicted. It was clear to us from the outset, that the people who live in Anandwan no longer elicit fear and prejudice. They have been totally accepted in the surrounding communities. Indeed many from the neighbouring villages commute daily to work, training or education in Anandwan. In his own distinctive style, Baba responded to my comment on this acceptance ‘When we started out we needed no walls, no fences. They all thought the very air was infected. Now, they come on to our land and steal our fruit…’
At each of our annual visits, some fifty patients undergo surgery, mostly for paralysis or deformities of the hands, many others for the restrictive scarring of burns, or children with congenital hand defects.
The facilities are basic, the operating table a home-made, welded construction from the Anandwan workshops, the electricity supply erratic (many times we have been deep in the intricate workings of a hand, forced to finish the surgery by torchlight), the equipment sparse and improvised. Over the years we have augmented the facilities with equipment we have been able to buy ourselves from contributed funds, or begged off the ample stores of decommissioned hardware of the hospitals in Britain where we work.
This contrast of resources is also sobering. Seeking to augment the equipment in Anandwan, I was directed to the NHS hospital where I worked. I found a vast warehouse of decommissioned equipment, some only a few months old, replaced because ‘this year’s model’ had arrived or some budget allocation ‘had’ to be spent. One could have equipped a dozen Anandwans from a single such warehouse. This is not an indictment of our Health Service; it goes deeper than that, revealing the nature of our society, used to discard rather than repair. Anandwan could feast on the crumbs which drop from our table.
From the start it has been our careful aim to limit ourselves to surgery which could be handled by the resources, and which could be cared for adequately after we had flown home. It would not do to perform complex surgery which stretched the facilities and the rehabilitation beyond what it would deliver. Back to the Hippocratic oath, which starts ‘First, do no harm’.
The surgical team has expanded, consisting of surgeon, nurse, anaesthetist, hand therapist. Within hours of our arrival, many from Anandwan are lined up for our outdoor outpatient clinic, many having travelled a considerable distance to seek help.
All are seen, operative plans made, surgery explained through interpreters, an inked thumbprint records consent, the patient given food and shelter waiting his turn. Some, too stiff, or contracted for surgery, are taken up by our therapist, splinted, massaged, made supple, in anticipation of surgery on the next trip.
Fifty operated patients per visit is not an impressive number – a very small drop of water on a very parched tongue – but they are fifty individuals, behind whose shoulders are families, dependants, and whose lives would not otherwise have been helped. It is a start.
I have reflected that this is in keeping with Baba Amte’s original principle of not waiting for the grand gesture, the big project, but to start, simply start, with what one has, and to persevere. Others might follow, adding to the system one has set up, the supply of help becoming more constant.
Is it vanity that takes one to such places, the desire to treat our conscience rather than the patients who are then the incidental beneficiaries? It is important to keep reminding oneself why one travels there. Without wishing to sound sanctimonious, one feels privileged to be able to be of use in this way. In fact it is strangely easy to help in such obvious need – how often does one get such an opportunity? The real heroes may be those, such as individuals in urban life in our own cities, who tend for a dependent relative, a disabled child, without recognition, thanks, fanfare…what I and my team have done carries the seduction of instant gratification.
I have also often reflected on the incongruity, the improbability of such a contact between us and the leprosy sufferers who come for surgery. Here I stand, having travelled 4000 miles to make unlikely contact with a man with leprosy, with whom I cannot communicate except by holding his paralysed hands and meeting his eyes. Some impossible chance has brought us together. I operate on his hand, restoring movement where there was none, strengthening it, improving its vocabulary. He stands up, walks away. We shall not meet again. There is a strange poetry in this serendipity, this bizarre, brief, contact – and this breathcatching leap of faith on his part.
I frequently wonder whether this is the most effective way of going about things, this use of resources to travel there once a year – Is this a huge effort to produce very little? Could the resources be put to better use? This would be another story, conducted on many levels, the issues complex.
Of course it would be best if a resident surgeon were constantly on hand to provide. How fine it would be if there was an abundance of skilled help constantly available, free of cost, to these near-destitute people. There are many skilled leprosy surgeons in such environments. But they are mostly confined to specialist centres or, in other situations, do not provide care that is free.
It would, of course, be far better if leprosy itself were wiped away, unheard of, a memory of past misery. But this would indeed be the grand gesture and if one were to wait for it, one might wait forever.
© Donald Sammut 2006
Since Baba’s death, in 2008, I have concluded my programme in India and now travel to Kathmandu, Nepal to perform the same work. The work in Anandwan continues. A second team of surgeons, led by Vivien Lees, from Manchester, associated with the village as long as I have been, travels there regularly.