Leprosy campaigner visits Leper Chapel in Cambridge to discuss disease stigma

Ganesh Muthusamy tells of ongoing discrimination in India

Perhaps the oldest building in Cambridge, the Leper Chapel on Newmarket Road was built to treat people with a disease that has been long forgotten in Britain.

But in India there are still 130,000 people diagnosed with leprosy every year. It’s treatable – a cure was discovered in 1982 – but there is a long-running social stigma and discriminatory laws still in place throughout the country.

Ganesh Muthusamy, former leprosy patient and ‘leprosy champion’ in India, contracted the disease when he was 15.

He works now to end discrimination and fear surrounding the disease, and last Wednesday (July 25) spoke at the Leper Chapel of his experience and work.

“I found that something was different with my leg,” he said. “I asked my father who took me to the hospital but the doctors couldn’t diagnose what it was.”

Skin patches are among the first signs that someone has leprosy and severe symptoms, such as blindness, develop. Sensory deprivation also occurs, which can cause unknown physical damage.

For a long time Ganesh had a thorn in his shoe that was damaging his foot and caused an ulcer. He may have walked for miles, but couldn’t feel the damage being done.

Ganesh said that the lack of leprosy awareness extends to doctors in India, and this is another challenge: getting diagnosed quickly to make treatment faster and prevent the disease developing.

After doctors failed to diagnose the disease it was his father’s friends who suggested they go to the leprosy hospital, where he got treatment for a year.

After two days of treatment a patient is no longer contagious.

Despite being highly educated, Ganesh has struggled to find a job because of the social stigma of having had leprosy. He said many people think that he may spread the disease.

Gareth Shrubsole, senior programme manager for the Leprosy Mission England and Wales, works on projects in India and Nigeria.

He said: “There are still 119 laws in India which discriminate against people who have had leprosy.

“Although you can take drugs and be completely cured and non-infectious, the laws still only define it as someone infected previously. They were passed by the British 110 years ago, and at that time they didn’t know any different. But we do know different now, and India is not subject to British rule any more, so why have they got these archaic, unfair, cruel and unnecessary laws still on their books?”

“Currently you can still divorce someone without settlement on the basis of leprosy. You can eject someone from a bus or a train, and they are not allowed to get driving licenses. Not all these laws are enforced, but they are there and no-one has repealed them.”

He said there are things to which people with leprosy are entitled, like social care and benefits, but often people don’t know that they’re entitled. His project brings groups together to mobilise and learn about their rights.

The mission offers toolkits and raises funds to help field workers and local authorities.

“The stigma, the prejudice, thinking it’s a curse because of sin, comes from people not knowing any different. Actually it’s a microbacterium that’s spread the same way as tuberculosis.

“The more people know about it the more we can break down these traditional prejudices and the more likely it is that somebody who has a skin patch will go to the doctor, rather than covering it up and hiding it,” said Gareth.

The last known case of leprosy in the UK was diagnosed in 1798. Back then there was no cure and patients were simply isolated – sent to places such as the Leper Chapel.

For centuries, Cambridge was an important trade post due to its connection to the sea via the River Cam, so it’s little wonder that the area was afflicted by leprosy in centuries past.

Professor Helen Weinstein, of Clare Hall, Cambridge, is seeking more clarity about this time in the city’s history.

She said: “It’s a long history but although there are lots of holes what we do know is that there was enough of a problem with people suffering from leprosy in the 1000s and 1100s that 50 acres was given.”

A hospital and a farm was set up so that people could beg on the street and be looked after away from the town.

“At the time the chapel was founded the closest main building in the city would have been at Magdelene Bridge,” Helen said.

It was a very wealthy area – Helen said it is possible King John, who agreed to the Magna Carta in 1215, would have come and he certainly would have known about the chapel.

“He gave a special decree to allow the leper hospital to raise funds through Stourbridge Fair,” she continued. “It’s for philanthropy and to show compassion and have a fundraiser.”

For more information, visit leprosymission.org.uk.

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