Yesterday marked his 10th death anniversary
When the sun is high up in the sky and the day is hot, it is not often that someone would be so foolish as to pour a glass of perfectly good “cool beverage” down the sink. But that was exactly what I did. A few sips of the drink out of courtesy and that was all. The prejudice was too strong. Looking ….. to make sure ……. The would-see me in the act. I welded over to the wash basin and disposed of the drink.
This sorry little stone enacted by the Canal Bank that runs deacons to the Narahenpita Pola, not too far from the offices of the Registrar of Motor Vehicles. Many of the people who walk down the path that leads to No. 354/14, Elvitigala Mawatha, are past middle aged but there are some who are young as well. If they, are looked at more closely, they would be seen to be people who are minus some of their physical parts such as fingers or limbs. But they are not victims of speeding traffic. Most of them are not amputees either. Many of them have physical extremities such as fingers or even noses, that have shrunk.
But the problem SUROL, like many other charitable organizations faces is that neither SUROL nor its devotion has failed to get the much-needed impression
When the nerves at the end of our bodies, the parts of the body that die first lose their sensation and then begin to shrink. That is leprosy. These people were lepers. The place we were at was the Society for Upliftment and Rehabilitation of Leprosy Patients (SUROL). Of course, today, sanitized language is in vogue and the term “leper” is on longer used to describe these unfortunate people. That word has undesirable connotations of referring to social outcast.
In the past, lepers were chased out of society and had to fend for themselves in pitiable conditions. They were neither cared for nor reached. But no longer does our society legally sanction such a harsh attitude towards people infected with the disease of leprosy. Perhaps the reason for carrying the greatest weight is at a very small risk today of having to live permanently with the disease.
Leprosy was once a dreaded disease coming down from ancient times. It is caused by a germ called “Mycobacterium Leprous.” That is the very germ that induced me to get rid of my drink. Although leprosy is an infectious disease, it is not easily caught as most of us have some immunity to it. Poor and undernourished people are most at risk just as they are to any other infectious diseases.
Today, however leprosy can be cured if treated at the early stages. When the disease only shows itself as an insensitive patch on the skin. The cure is permanent and total. On the other hand, if the disease is permitted to continue untreated, and ulcers and deformities set in, then the patient would always need treatment.
SUROL has its origins in 1971, when a foreign Jesuit priest, Rev. Fr. Chiriarty started to help the leprosy patients he come across on an informant basis. A few years later, a Swiss NGO ‘Emmaus’ involved in leprosy work and began to fund this project.
SUROL now works with 480 families all over the island. There were about 30 patients present on the day that I visited the centre. Some of them had come from as far away as Matara and Puttalam to claim their refit. The main centre is at Narahenpita and there are branches in Kandy and Jaffna.
The Jaffna branch is sustained by a single dedicated worker who remains valiantly at his past, despite the great difficulties of life in the north. He attends Clinics, pays out the monthly allowance and ensures that minor repair work is done to the houses of leprosy patients.
Although SUROL is non-sectarian and helps leprosy patients of all communities. Rev. Fr. Glenn Fernando, a Catholic priest was its Secretary and the heart of the organization. His priestly status was difficult to discern as he was clad in ordinary shirt and trousers, but his priestly vocation was immediately obvious.
With Rev. Fr. Glenn Fernando, was Stan Fernando, the Deputy Treasurer of the organization who had invited me to see their work. And whom I have known for most of my life as ‘Uncle Stan’ who once lived our next door. The two of them explained that most of their work involes providing for the economic needs of the patients. They did this by providing the parietal with a monthly allowance in some cases and with self-employment projects where appropriate.
This helps to supplement the governments’ monthly dole of Rs.500 per family or Rs.200 for an unmarried patient which was clearly not sufficient even to out a very modest living in these days of high inflation. But far from helping the voluntary sector to make up for its own inadequacies, the government is doing its best to control the voluntary NGO sector through a variety of heavy- handed means oblivious to the fact that the spirit of voluntarism is not susceptible to control and is only destroyed by controls.
Helping these poor people to become economically self-reliant, is an extremely difficult task requiring much effort that money cannot buy. Some of the leprosy patients really could do nothing. They need constant help. For instance, those who are old and do not have their fingers or limbs need to have someone to look after them. But sometimes, even the hospitals in the areas where the patients come from, do not take them in for treatment due to fear.
At present, perhaps the only home for the aged that is willing to take in leprosy patients is Marc Sri, a home for the destitutes in Kalutara.
SUROL is now putting up its own home to accommodate up to 20 aged leprosy patients next to the Marc Sri home in Kalutara. Unfortunately, due to their own financial shortcomings, SUROL’s foreign donor Emmaus, is cutting its contribution by 25% this year. We have to make up for this by raising funds locally through donations, says Stan Fernando. He adds hopefully that SUROL’s bank account at the Commercial Bank - Borella Branch is 01-201103401.
Those who take the trouble to visit SUROL are willing to contribute more. Fr. Glen Fernando says one such couple gives Rs.2,500 every months. But a problem that SUROL, like many other charitable organizations faces is that neither SUROL nor its devotion has failed to get the much-needed impression. In general, when people knew of a deserving project, they were willing to help. In November last year, SUROL sent out letters to about 150 individuals who were personally known to its staffers. They received over Rs.50,000 in donations. However, the needs are ten times more that amount received.
Utilizing the limited funds at its disposal, SUROL has helped more than 30 patients to set up income generating businesses by providing them with loans for sewing machines, fishing nets, carpentry tools and setting up grocery stores etc among other projects. The amount provided as a loan depends on the nature of the project and could go up to Rs.15,000. The monthly repayment depends on the earning capacity, and not on any fixed rate of interest.
H.A. Peter, a tall and handsome man of 54, was at the SUROL office that day to request a loan of Rs.1,000. He had fallen sick and as a result had to spend a part of the Capital. Peter had contracted leprosy during his prime. Since he did not get treatment, his fingers have shrunk. Peter has been selling lottery tickets.
Usually he manages to sell about 50 lottery tickets a day, which is enough to support himself and his wife. She was also a leprosy patient whom he met at the Hendala Leprosy Hospital.
Peter’s belief is that most people are sympathetic but do not ostracise him. But leprosy patients are always afraid of evoking a negative response from others. One patient has not still told her children that she has been undergoing treatment for leprosy, which has slightly disfigured her hands. Her children are perfectly healthy and she fears knowing a leper is at home would be too much for them to bear.
(This article was previously published on April 4, 1993)