Stephen McGinty: Touched by truth of leprosy

A Senegalese leprosy sufferer waits for treatment. Picture: Getty

It was early evening in India, and the dusty road from Bangalore airport was draped in a soft ochre light. From the back of a speeding Jeep the view was of buses laden with commuters, rinky-dink rickshaw scooters, colourful movie posters stretched across wooden billboards and statues to Hindu gods. The streets were a cluster of ragged beggars, cow-drawn carts and commuters dressed in shirts and trousers, the women in bright saris. We were heading to Sumana Halli, which means the “Village of Goodwill” but which others would describe, in ignorance, as a “leper colony”.

Shortly after arriving and having dumped my rucksack in my room, (a concrete cell with shuttered windows, a bucket for a bath and a hole for the loo, but with a comfortable single bed draped with mosquito nets) I walked up the hill towards the hut where dinner was to be served and there, in the dim light, I met Krisinappa, the Grand Old Man of Sumana Halli. Earlier in the day I’d been taught the traditional greeting in the Kanada language which involves raising your hands as if in prayer and saying namaste. He was dressed in a worn white cotton shirt, dark loose trousers and a pair of tatty leather sandals. After I raised my hands in greeting, he replied “namaste” and then raised his arms to reveal not hands, but stumps which were worn smooth and slightly pointed. The oldest resident of Sumana Halli, Krisinappa would pick wild roses with his teeth and sell them outside the centre.

Before the Archbishop of Bangalore set up a relief centre here in 1976, the area was a beggars’ colony with locked dormitories for those with leprosy who had broken the Beggary Prohibition Act. After being invited to take over by the Chief Minister of Karnataka State, various religious congregations pooled their resources to turn the 63-acre site into a place of hope rather than one of despair. The first thing to go was the word “leper”, a squat, ugly little term that conjures up the image of an outcast but which aptly described, especially in India, what these people had become.

In India, even today, the contraction of leprosy is adequate grounds for divorce. The afflicted are banned from running for state office, from having a driving licence, even from travelling by train. In India, contact is often close: male friends will walk hand in hand, teenage boys drape an arm over a friend’s shoulder, women hug and kiss – but those with the disease face being made outcasts. Untouchable even to the untouchables. In a culture of hierarchical castes, there are few lower than a person with leprosy.

When I visited Sumana Halli 19 years ago to see my sister, Alison, who with another young Scot, Katrina Dougan, was spending a year working in the centre, it was a humbling and at times distressing experience. Before spending three days at the clinic my experience of leprosy was vague memories of Bible stories and watching Steve McQueen nervously accept a draw from a “leper’s” cigar in the movie, Papillon. In India, I learned to separate the facts from the fiction. The disease was caused by the microbacterium leprae, also known as Hansen’s Disease after the Norwegian physician who discovered it, and people’s limbs do not drop off. The image of rotten noses and clawed hands comes when the disease is left untreated for many years. Patches rise above the skin, the nerves in the face and limbs thicken, sensation is lost in the feet, and ulcers develop. Nerve damage results in clawed fingers and foot-drop. Limbs are lost through amputation as they become rotten with infection. Rats ften gnawed away fingers and toes as the sufferer sleeps, peacefully unaware.

The bacteria spreads through saliva, coughs and sneezes, but is not wildly infectious. If we came into contact with such a person, 95 per cent of us would not be infected. Our body’s natural defences would fight it off, but 5 per cent would be susceptible and would begin to show symptoms such as numb skin patches, weak fingers and oily, reddish skin. The incubation period can be as long as five years. Since the early 1980s leprosy can be successfully treated by three drugs – Dapsone, Rifampicin and Clofazimine. Historically, “cures” included everything from castration to cobra’s venom, bee stings to elephant’s teeth. In many ways it is the disease’s ancient lineage that makes people so fearful of leprosy. The oldest known victim was an Indian, a 30-year old man who died 4,000 years ago and whose skeleton was discovered in 2009 and found to contain DNA traces of the disease.

The problem in places such as India is that a diagnosis of leprosy can frequently mean immediate rejection by family and friends. Not only are you ill, you are rendered unemployed and homeless – little wonder that the afflicted are reluctant to come forward. As Thomas Matthew, the administrator of Sumana Hali, told me: “You cannot understand their feelings. They cannot go and visit their own family, who do not want to know them. They have had to beg. We try to teach them the dignity and self respect of work. When they see people from other cultures and other places they feel they are worthwhile, they are given a second boost of self-esteem.”

At the centre there was accommodation for the old and crippled who had lived with the disease for decades, and room for the newly diagnosed, who were invited to bring their families. The afflicted were urged away from begging and retrained in manufacturing leather goods. Sadanada, was a middle-aged man who arrived at Sumana Halli 15 years previously crippled by the disease, but after drug treatments, reconstructive surgery and physiotherapy, he was now married and ran his own leather goods workshop, employing people from the centre. Yet even now he was not allowed to return to his home village, and while his brothers and sisters visited, his parents refused to see him. As he told me: “I have learned to harden my heart.”

A lot has changed in leprosy treatment in the 19 years since I visited Sumana Halli, with more than 15 million people worldwide being cured of the disease since then. Yet it remains a dreadful scourge if left untreated and those newly diagnosed, especially in countries such as India, can still face a life of hardship and rejection. Tomorrow is World Leprosy Day. It is also Mahatma Gandhi’s birthday, appropriate as he did so much to tackle the caste system and embrace those rejected by society.

This reminiscence was prompted by an e-mail I received from the Leprosy Mission Scotland, a charity which has been working since 1874 to alleviate the suffering of people with the disease worldwide. As their website explains: “Our vision is to transform the lives of people affected by leprosy, taking them from rejection to acceptance and from poverty to economic independence.”

As part of their work they have recently published a children’s book, Bela, written by Mia Hadrill and illustrated by Jessica Kettle. Based on her experiences travelling in India, the book tells the story of a little Indian girl and the problems she faces after being diagnosed with the disease. The organisation also launched a campaign last year to have the word “leper” deleted from the Scots vocabulary as “derogatory, outdated” and on the grounds that it is an “offensive term”. It is, as I said, an ugly word that cuts deep and I can’t think of a comparable word for an ill person that comes so wrapped in isolation, rejection and despair. Yet I’ve always been uncomfortable with the strict policing of language on the grounds that it can be a thin end of the wedge, a slope towards ideological censorship.

India, which is estimated to have 50 per cent of all cases of leprosy, has made progress since my first visit, but it still has a long way to go. A powerful statement would be achieved by repealing those existing laws that criminalise the innocent because of an affliction over which they have no control.