What Goes On At A ‘Leprosy Colony’?
In Tamil Nadu’s Bharatapuram colony they live as one family, caring for each other's needs
About 50 kilometres from Chennai lies Bharatapuram, a quiet, peaceful colony where everyone seems to live in harmony with each other. What's unique about this locality though is that it is composed of families who came here more than 50 years ago from various districts of Tamil Nadu, because they had nowhere else to go.
They are from different religious backgrounds, castes, cultural practices, dialects and appearances, but there's one thing that has brought them together, leprosy. Almost all the families here have someone afflicted with leprosy in their family.
Back in the day, as leprosy was considered contagious and as there was a huge stigma attached to the disease, these families had to leave their homes and isolate themselves from the rest of society. But here, in Bharatapuram they live as one family, caring for each other's needs and supporting each other.
Like Bharatapuram, there are six other leprosy colonies nearby, within the Chengalpettu district and 45 colonies in Tamil Nadu. The reason for the cluster of colonies in Chengalpettu, however, is because of the prestigious Central Leprosy Training and Research Institute (CLTRI) situated here.
The CLTRI was established in 1955 after taking over the ownership from Lady Wellington Leprosy Sanatorium, a mission of the Church of Scotland. The CLTRI has been instrumental in discovering treatments to completely arrest the spread of leprosy. Patients with leprosy from all over the country come here to be treated.
Currently, there are close to 1000 leprosy colonies in India, over 3 million people have been permanently disfigured because of the disease. India still has the largest number of leprosy affected patients in the world, whereas Western countries have almost eliminated the disease.
Although it is known that leprosy is caused by the mycobacterium leprae, medical experts are still baffled by how exactly it is spread. Tamil Nadu, Andhra, Odisha are known to be endemic areas, but one cannot pinpoint whether it is because of the weather, nutrition or hygienic conditions.
It is ‘a poor man's disease’, so there's not a lot of funds for research in this area. Also, since it cannot be cultured, there is no possibility for a preventive vaccine unlike that for smallpox. So it cannot be eradicated.
However, thanks to new medical advancements, leprosy has become completely curable, especially if treated in the initial stages. There exists therapy to arrest the process and treat the disease in the early stages.
According to Nahulan, 54, "I was a painter in Kerala and had a team of people working under me. Suddenly, a few years ago, I started developing patches, and felt very weak. I lost almost 20 kgs. I couldn't do anything. I went to the hospital, they did a biopsy and found out I have leprosy.
“Three months ago, I came from Kerala for treatment. I have what's called reaction leprosy. The joints hurt so much that you'd wish you'd die. I am currently being treated at CLTRI. All my treatment and medicines are provided free of cost. Now I am staying here and being supported by this lovely community. I don't even know if they have enough for their needs, but they try to meet all my needs.”
In Bharatapuram, all the houses are concrete structures with toilets attached. Almost all families are able to afford private education. The attitudes towards leprosy affected people are slowly changing, thanks to the efforts of several organisations and NGOs. The Gnanodaya School in Chengalpettu is one such residential school which currently houses about 50 children from leprosy backgrounds.
Padma Venkataraman, the chairperson of the school and President of the Women's India Foundation said, "The vision with which the school was started was to give every citizen of India equal opportunity, even if they come from a marginalised section of society. The children at our school are from leprosy affected families across Tamil Nadu, but they are healthy children. If we find that they have symptoms, we immediately take them to the hospital and make them non-infectious.
“Currently, we have 117 children. When it was started, we said 80 per cent were from leprosy colonies and the rest from the village, because we wanted to promote integration right from the beginning. If children and parents see that from the beginning, it would be easier to integrate as they grow up. Now, more and more village children are coming. It is a residential school only for the children from leprosy colony, we have about 50 students. The day scholars are from the village.”
Padma said that initially there was a lot of opposition against the school. "The villagers told us these children shouldn't be allowed to enter their village, we cannot buy land for them here, etc. But now more and more village children are seeking admission in our school. That itself is an achievement.
“This is a less contagious disease compared to any other disease. But people are terrified about it because of the deformities. The hands, toes and extremities are all damaged, there are ulcers. It's all so visible. Even once you're cured, the symptoms remain. Once it affects the peripheral nervous system, the damage cannot be reversed unless you go in for plastic surgery.
“We have the largest number of leprosy affected people in the world. So we cannot afford to have plastic surgery for everyone. But people are not aware that this is not contagious, they just think that one shouldn't go near them.”
Padma believes that it's easier to make children understand. When she visits schools, she always asks the children what their experiences are and whether they have seen people with leprosy. Some children say that their parents instructed them not to go near people with leprosy or deal with them. "There's a lot of misconception that you will contract the disease if you go near them or that they are all bad people and make you join them in begging," said Padma.
However, she added, "We have come a long way. The second and third generation has really come up in life. The stigma is still there, but not to such a big extent."
Peery Matriculation School is another residential school for children from ‘leprosy backgrounds’ and is situated in Uthiramerur, about 90 kms from Chennai. Daniel, the area in-charge of the NGO that runs the school said, "We have about 260 students from the leprosy background. It is a fully residential school with excellent infrastructure and the students are provided with everything they need.
“Most children from leprosy backgrounds are discriminated against simply based on where they're coming from. For instance, when they say they're coming from a particular village that is already know for its leprosy community, they are automatically discriminated against. Nobody wants to be associated with them.
“Many schools don't want to give them admissions. That's one of the main reasons why this school was started. We also have children from the neighbourhood because children from leprosy affected families shouldn't feel isolated. Now they are all growing up together and there is no discrimination.”
Speaking about the importance of early intervention, Daniel said, “there were six children with leprosy in our school. They developed white patches on their bodies. But as soon as we found it, we treated them and now they have been cured. Early diagnosis and treatment is very important. It's only once it affects the nerves that one starts developing deformities.”
At Peery, the aim is to provide holistic development of the children and ensure the students complete at least their bachelors degree. Many graduates have now bagged good jobs, with many entering the medical field. But Daniel said that there is still a lot of misconception about how it is spread. "People still think you will contract it just by being around someone who has the disease,” said Daniel.
While the current generation is thriving due to better opportunities and medical advancements, back in the colonies, the older generation continues to suffer the scars of the disease. Aparajithan from Bharatapuram colony is 62. His parents were leprosy patients and he himself was diagnosed with leprosy many years ago, but because he was treated in the early stage, he was completely cured. His wife's parents were also leprosy patients.
He said, "When I was studying in school, those of us from Bharatapuram were looked down upon. They would make us sit separately, and tell us to keep our plates separately. Back then we didn't understand that we were being discriminated against. But looking back now, we understand what it was. Even now, there's a lot of stigma."
Jaganathan (name changed) said he has been finding it very difficult to find his son a suitable wife because of the stigma attached to leprosy. "I'm well-settled and have all the comforts. I own a car, my children have good education and good jobs, but when we say we're from Bharatpuram, nobody wants to give their daughter in marriage. The main problem is that people think it's contagious.
Aparjithan, on the other hand, got all his three sons married to girls from leprosy affected families too. He said, "A lot of families, even within this community, think twice about marrying their children into families with a history of leprosy. I wanted to break the stigma. But not many are like that."
There are also a lot of patients who are not able to get Aadhaar cards because they are unable to provide fingerprints. When they approach the village officer, they just say that the rule is that they need fingerprints and that nothing can be done about it. As a result, some of them cannot access beneficial schemes.
Organisations like Rising Star have been supporting them by giving micro credits to start small businesses and also support their children's education. There is also an art school in the locality, founded by an Austrian named Werner Dornik.
Here, people who have developed deformities due to leprosy have the opportunity to experience the joy that art gives and also make an income out of it. The students at the art school were initially sceptical about whether they would even be able to hold a brush, but they have now excelled at painting and even hold exhibitions across the globe.
At the old age home in Bharatapuram, there are over 20 residents. Although they feel like home and enjoy each other's company, most of them live with the scars of having multiple tests done on them and the scars of being forced to leave their families behind.
B. Ravichandran took his first treatment in the 1960s. He said, "I was very young at that time and worked as a turner. I had developed some symptoms, but I didn't realise I had leprosy. Then I was taken to the hospital and confirmed positive for leprosy. I came to CLTRI for treatment. I was so scared seeing all the patients here. I didn't want to live like them.
“I wanted to run away. But the staff comforted me and said I would be well taken care of. They gave me an injection called Methylene blue. It was a 30 day course. Everything in my body turned blue. My urine also was blue. It was quite scary. But after three months, all my patches were gone and I was healed. I got married. I had children.
“But after many years, one day while working the tools fell out of my hand because I lost sensation in my hands. The leprosy had returned. From there on, things worsened. I developed deformities. I had to run away and hide every time someone came home to visit my children because I didn't want them to be embarrassed. I eventually left home and came to this old age home. I didn't want to be a burden to them."
Speaking about the processes involved in treating leprosy, a researcher working at the Central Leprosy Teaching and Research Institute said, "So far, the Multi Drug Therapy (MDT) has been going on successfully. Almost 99 per cent of our patients are being cured completely through MDT. It is very different from tuberculosis. For instance, in tuberculosis, you get resistance to MDT, but that's not the case in leprosy. So the treatment is very successful. The vaccine is still under trial. However, we have found that the BCG vaccine is quite helpful, although there is no guarantee. We've been seeing that in states where there are more hospitalised births and newborns are given the BCG vaccine, the number of leprosy cases are lesser."
"Although we don't exactly know how it is spread, what we know is that leprosy is air borne. However, lepra bacteria does not multiply like tuberculosis. In TB, the bacterium multiplies within fourteen days. Lepra bacteria is more dormant. It is more likely to spread when a lot of people live together in a closed space for prolonged periods, not just by casual contact."
"There are two types of leprosy. Paucibacillary (PB) and Multibacillary (MB). According to the WHO's definition, PB is when there is either 1 skin lesion or two to five lesions on the skin. Whereas, MB is when there are more than five lesions."
Some, like 90-year-old Raghuaram (name changed), feel the multiple tests done on him for research purposes made his condition worse. He said, "I first came from Coimbatore to Lady Wellington Leprosy Sanatorium when I was diagnosed with leprosy. I was there for five years and went back. I started working. I got married, had three children.
“After that it relapsed. Then I came here to CLTRI and then stayed on in this old age home. They kept changing treatments and medications and I became like this. Who is there to question our human rights?
“For instance, I was first given one course of treatment, that didn't work, so they changed the treatment, then that had some other side effects, so it was changed again. Likewise, there are a lot of patients who were used for research and it affected them badly."
However, Aparajithan said, "It is the sacrifice of the older generation that we are well today. They were all used for research purposes. Their whole life was spent sacrificing themselves for research.”
The only compensation for many like Raghuram is that they know their sacrifices are not in vain. As they draw nearer to the end of their lives, they are happy knowing that the future generations have access to the right treatment and don't have to live like them.