The price of stigma – Edward’s story

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Edward Alwin holds a photograph of himself, taken the year he came to live at Hendala

Hendala Leprosy Hospital, situated just outside Colombo in Sri Lanka, opened in 1708 as what was, in reality, a prison for anyone diagnosed with the disease. Leprosy-affected people were isolated from their families and the rest of society, and forced to live in seclusion.

Though centuries have passed, the isolation and stigma faced by the inhabitants of Hendala is still a reality.

Edward Alwin is 84 years old, and came to Hendala when he was just 14. He was studying at school when a doctor noticed the tell-tale patch on his face. The doctor told Edward’s father, a customs official living in Colombo, that his son could not be kept at home. He was considered a danger to the family and society.

As a result, Edward was taken to Hendala, in 1943, and abandoned.

At the time Edward arrived, the hospital had 900 residents, its own police station with 10 police officers, two churches and a mosque as well as Hindu and Buddhist temples. Edward struggled to get used to his new life there.

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Hendala Leprosy Hospital

“It was a sad time. The place was overcrowded and because of the war, food was scarce. Sometimes we only had bread and a banana to eat. I missed my family, but I was not allowed to leave. There were guards at the check-point gates,” he said.

He found work as a watch repairer in one of the workshops at Hendala but as his hands became clawed, he found it impossible to do carry out his job. There was no way of curing leprosy, although residents were given traditional remedies that were, of course, ineffective.

“In 1955, when I was 26, the first real treatment arrived. Dapsone tablets were given to us daily and we were told that we could be cured,” said Edward.

It was later that year that the hospital gates were opened and he was allowed to leave. Sadly, when Edward returned to his family they did not welcome him. They saw his clawed hands and knew that people would notice Edward’s visible signs of the leprosy he once had.

“I didn’t want to bring stigma on my family and my disability meant that getting a job was impossible, so I returned to Hendala and the people who had become my friends over the previous 12 years,” said Edward.

“Here I am, an old man of 84 years, with clawed hands, an amputated leg, no toes and poor eyesight.  I’m now cured of leprosy thanks to MDT treatment, but that didn’t bring back my family or the life that was taken from me,” he added.

In more recent years Edward has occasionally left Hendala to walk around outside. However he rarely felt welcomed by the community, because, as he says, “people are still scared of leprosy”.

“Leprosy is curable, but it has taken my family, my home and my life.  Please help break the stigma so others do not face the exclusion.”

Edward’s story is a heartbreaking example of how even when leprosy has been cured, those who have been affected by the disease are treated as outcasts – often by their closest relatives.

That’s why efforts to combat stigma, advocate for rights, and raise awareness of disability issues are such an important part of The Leprosy Mission’s work. Several of TLMEW’s projects specifically address ending stigma and we envisage a world where one day, no-one will be made to feel that leprosy has stolen their life and brought about rejection from their loved ones.

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