Premawathe Ukuna and Maha Puthiasay are one of several couples at the Hendala Leprosy Hospital, Sri Lanka. Ross Velton visited to find out what life is like as part of a forgotten generation.
In this 15-minute documentary, Ross Velton discovers how a forgotten generation of people with leprosy have found sanctuary in a 300-year-old Sri Lankan hospital.
Abandoned by their families and stigmatised by society, they became artists and musicians, they fell in love with one another, and they tried to build the community they couldn't find in the outside world. Now, their stories are inspiring others to carry on the fight to end the stigma of leprosy. (Transcript below video player.)
This film was supported by the Pulitzer Center on Crisis Reporting and the Wellcome Trust.
Lodewijk Wagenaar: You are a non-person who is not beloved by God. This must be a different thing from the illnesses we know.
Man: [translation] This disease is a curse from God. I’ll take them to hospital carefully, without going near them. I won’t eat with them.
Abdul Hassaan: Heavy sun, no?
I got a rash, these fingers got paralysed. The vision also went down very low. Then only this leg was spoiled. They found this is leprosy. I came home. My sisters are there. For this disease they are very frightened. They want to give the meals and all. They won’t come close to me. From the far they will give. They don’t see properly me.
Then only after I came here, it was about nine to ten years. Five miles even I can walk. I have four children, two daughters and two boys. At home nobody come here. Till my death I will be here.
Lakmal Rathnayake: Today’s Vesak festival day. Vesak is Lord Buddha’s birth and death and his enchantment. It is a very important day to Buddhists and other people in Sri Lanka. Tonight we are going to do a musical instrumental programme with our leprosy patients. When we informed them we are going to organise this kind of festival they started to practise, actually.
Edward Alwis: [translation] I learned music myself, by playing alone. I came to the hospital on the fourth of April 1943. When this photo was taken I was 16 years old. When I came here I was 14. It was emotionally painful. My mother and father were crying. Everyone was crying because I had to come here. In those days there were no ambulances so they locked me on a bullock cart and brought me to this place. If we ran away, the police would catch us and bring us back. I’m the oldest resident patient in this place now.
A prince from the Dutch government got leprosy. The patients have seen him on a white horse at midnight. His soul is protecting us.
Lodewijk Wagenaar: Around 1693 I guess, the Dutch government of Ceylon, as Sri Lanka then was called, decided to set up the first asylum for lepers. Leprosy was a well-known thing and people were very much afraid of this wrath of God. The only thing they could do was to seclude those sick persons from society. They found a place near the Kelani river that’s called Hendala nowadays. Then from early 18th century they were sent to this hospital.
Nilanthi Fernando: This is the cart which we used to carry the dead bodies to the cemetery. Leprosy is an infectious disease caused by bacteria. It transmits through our nasal passage and it goes to the skin and nerves. First you start with the numbness and then you don’t feel any pain in your hands or feet. So then you are prone to get injuries, and it leads to infection and you have to have that amputation to heal the wound. Then you get muscle weakness, and with that muscle weakness you get that claw hand, claw fingers. It is not easy to catch. About 90 per cent of the community have immunity.
Arvind Mathur: If I remember correctly I think it is still 116 countries which report leprosy. The numbers are not too large. Globally also we’re talking about 235,000-odd numbers that are there for leprosy, but they’re not too little either. In Sri Lanka, leprosy was eliminated as a public health problem in 1995 but it does not mean that there are no new cases.
Nilanthi Fernando: Around 2,000 cases are reported annually. 1982, we used multidrug treatment that is mainly antibiotics we are using to treat the patient. But if they develop a deformity, so then we can’t cure that deformity, but the leprosy can cure.
Arvind Mathur: Any leper who has got deformity is what we want to avoid, because the deformities are the result of non-treatment or delayed treatment.
Abdul Hassaan: Now no disease, anything. I was in a jolly job, no. I worked in movies. I’m talking with, what do you call, the public. They come for the shows. Women, girls, bosses, from MGM, 20th Century Fox, Warner Brothers. I know all the bosses there. They will come and help me, but I never informed to the company or anything. I very privately am here.
Marina Joy Sabanathan: These are the worst-affected, neglected, discarded people in this world. So really I wanted to work with them to help them in whatever way possible. I can remember reading in the Bible that people throw stones at the people who are lepers and they are thrown into a valley called leprosy valley.
I haven’t met you before, I’m Dr Sabanathan. I was here before, I worked about 40 years ago in this hospital. So a female ward is my ward. Also ward 18 and 19. For about three years I worked here, so I thought I’ll come back and see it.
At that time there were about 900 patients or more, they were kept here like walking around, purposeless.
[translation] Okay, I remember you even if you can’t remember me.
They were doing a lot of work in the place. They grew their own vegetables, they were selling their produce to the market and people did buy them. There were carpenters, most of them were very skilled. Even I had the carpenters to make some furniture which we used in our own house.
We are heading towards the male ward, which was ward number 19 at that time. I wonder what it is now.
Man: [translation] Do you know Mr Bright?
Marina Joy Sabanathan: [translation] Who?
Man: [translation] Mr Bright?
Marina Joy Sabanathan: [translation] Oh you’re the one who came when you were a small boy. The troublesome boy.
Man: [translation] [laughs] Yeah, the troublesome boy.
Marina Joy Sabanathan: I thought I had only 16 patients here. It turns out there’s 15 in another ward. Unfortunately I didn’t bring enough gifts for them.
Just now I met a young man who was a little boy at the time when I was here. He said, “Why am I like this? Why are we cursed to be like this?” So he said he could have been like anyone else wandering around. Now they are in their late 70s, 80s, in their age and most of them have lost their relations. Though they are well, they have no place to go to call their own. There’s not much we can do for them except give them physiotherapy and look after their general health.
Nilanthi Fernando: Now the Health Ministry has responsibility to look after those patients.
Caption: Maha is getting ready to visit his girlfriend, Premawathe.
Premawathe Ukuna: [translation] We didn’t get married. We became friends and have been living together ever since.
Maha Puthiasay: [translation] She was married previously and that marriage wasn’t nullified. So she can’t marry a second time.
Premawathe Ukuna: [translation] My husband was a farmer. We lived very happily. Then the doctor took my husband into a room and told him about my leprosy. Then my husband no longer came to eat or visit home. Since then we’re living happily, taking care of each other.
Maha Puthiasay: [translation] Nurse, you know how she looks after me.
Woman: Very rarely, people come and give alms or anything, even if the people there undertake to do something, give something, they are afraid to come and do.
Kiribathgoda Gnanananda Thero: When you look at some diseased person, some unfortunate people. So Buddha said think of those people that you, in previous lives in the past, these kind of experiences. So love them, Buddha said.
Woman: [translation] Please help me. God, why am I suffering?
Kiribathgoda Gnanananda Thero: People should be treated as real humans.
Arvind Mathur: Leprosy patients themselves can become champions and ambassadors to other patients, and encourage them and motivate them to go for treatment and complete the treatment.
Krishnan Kanagarajah: [translation] I was taken to the General Hospital where I was treated for 12 months. At this time my wife left me.
Arvind Mathur: There is a continuous effort to address the stigma and I think it is less than I have seen in other countries.
Joshua Sivanganam: Theatre can heal people. The leprosy affected people, they can say their story. One father said, “My wife and children sent out me from the home because of leprosy.” Then we act this story in front of them. After that, people have got a good and positive idea and knowledge and awareness about the leprosy.
People in play: [translation] We’ll get it treated at the early stages!
[Music and singing]
Lakmal Rathnayake: You can expect to see a lot of people, public people, come to here.
As a pharmacist I don’t need to do this programme. We are doing them to keep them happy.
The nurses and the clerks and the other staff.
[Music and singing]
All the people are doing that to get a smile from the patients. That’s our vision.
[Music and singing]