When they first heard of the National Register of Citizens (NRC), they thought it was yet another aasoni or government scheme that would have no bearing on their lives, as had been the case with all other aasonis ever since they remember.
Living on a patch of land close to the Tiru Hills Reserve Forest along the embattled Assam-Nagaland border, the 15-odd families of Rajabari Christian Gaon, a former leprosy colony 40 kms off Jorhat town, were reluctant to apply to the NRC. Until the day someone from the Panchayat told them about the possible consequences — statelessness and possibly, jail.
Shredding the initial reluctance, the villagers applied for enrolment in the NRC. And, fortunately, everyone in the village found their names included in the final draft NRC published on July 30, 2018.
While successful inclusion in the NRC makes them legal citizens of the state, the residents of the village have always been in the margins of society.
“Perhaps jail is a better place to be than where we are now. We have no road, no electricity, no hospital, no school, no pure drinking water. Aren’t we just like non-citizens stripped off basic rights, anyway?” asks Tulya Gogoi, a 54-year-old farmer from the village.
A Village Of One’s Own
The village of Rajabari Christian Gaon, popularly known as Bemari Basti or the “Village of the Diseased”, was established in 1955 by Mary Kirby Berry, a medical missionary who was at that time heading the Christian Leprosy Clinic—now Jorhat Christian Medical Centre—run by the American Baptist Foreign Mission Society (ABFMS) in Jorhat, a town in Upper Assam.
“Mary not only treated the patients, but also deeply cared about their social and emotional wellbeing. She did something the Mission discouraged: she initiated marriage between suitable leprosy patients who were either cured or had only a milder form of the disease,” says Allen Brooks, of the Assam Christian Forum.
In 1955, Mary helped pair twenty couples from multiple communities such as Assamese, Ahom, Ao Naga, Adivasi, Nepali and Bengali at Christian Leprosy Clinic, Upper Assam’s only clinic that dealt exclusively with the disease.
Later, the ABFMS acquired 240 bigha of land from the Amguri Grant along the Assam-Nagaland border foothills to establish the village of Rajabari Christian Gaon, a colony exclusively for leprosy patients.
“My grandfather and grandmother were among those twenty couples who Mary helped settle in this village. My father was born here, I was born here, and so were my two children,” says Gogoi.
Like all other leprosy settlements that sprung up across the region as a result of the leprosy patient segregation policy under the Lepers Act 1898, Rajabari Christian Gaon is also located away from “mainstream” society, on a densely forested part of the Tiru Hills Reserve Forest. Even today the nearest village, separated by a tiny river called Rongkham, is about 5 kms away. The nearest grocery shop and high school are located six km away in Haluating. “Women in the village often deliver babies without any sort of medical assistance. One has to walk for several kilometres to get vehicles to travel to the nearest hospital in Amguri,” says Bhagyawati Bharali, a 40-year-old resident of the village, “A lower primary school and a church are the only signs of progress in the village.” The school is run by a single teacher.
A Highly Contagious Disease
The policy of segregating the leprosy patients had both medical and Biblical sanctions.
As leprosy was thought to be highly contagious in those days, the biocontainment model of disease control in epidemiology argued for segregation of the leprosy patients. “At that time leprosy was considered to be a highly contagious epidemic disease. Therefore, to contain a leprosy outbreak, diseased bodies needed to be identified, singled out, and put under surveillance,” says Sudipta Dipak Barua, an anatomy specialist at Gauhati Medical College Hospital.
Brooks says, “The Old Testament does talk of segregating lepers from the healthy population. But as Saint Francis of Assisi had shown, loving the lepers and taking care of them was a sign of sanctity. Medical missionaries like Mary, who devoted her life for leprosy work, drew inspiration from the Bible.”
According to British historian Malcom Barber, the demonisation of leprosy patients and their consequent social exclusion stemmed from an alleged conspiracy of ‘lepers’ to kill the healthy by poisoning the fountains and wells in early fourteenth-century Toulouse in France.
With the arrival of a multidrug therapy, supplied by the World Health Organization (WHO) for free in endemic countries like India since 1995, leprosy or Hansen’s disease—the result of an infection with Mycobacterium leprae—is no longer the incurable dreaded disease it once used to be. However, the social stigma and exclusion attached to it, still lingers.
Bharali recollects how during her high school days she was shunned by her classmates. “No one would sit beside me after they came to know that my parents had leprosy. Many cut ties because their parents told them to keep distance from me.”
“Today there’s not a single leprosy patient in our village. Yet some people in the neighbouring villages hesitate to recruit us as labourers. They think they might get the disease if they come into contact with us,” says Gobinda Bharali, 48, who works as a daily wage labourer.
And pushed to the margins, for several decades, the residents of Rajabari Christian Gaon, when it came to marriage, had to practice a sort of village endogamy. Or had to find a match in other leprosy colonies. “Nearly all of the first generation descendants married within the village. Because no one wanted a spouse from among the descendants of leprosy patients,” says Gogoi, who himself married a descendant of leprosy patients from Borbheta leprosy colony in Jorhat.
“Our identity is still defined by leprosy though the disease is long gone. People still address our village as Bemari basti although the last patient with visible physical disfigurement caused by leprosy here died at least fifteen years ago,” Bharali says.
A Marooned People
“What hinders the integration and assimilation of the former leprosy settlement into the mainstream society is the government’s apathy and negligence”, says Dr Balin Khargharia, founder of Health Education Rehabilitation Society (HERS), a Jorhat-based non-profit organisation working for the upliftment of leprosy patients.
“The village exists like an island, isolated from the outside world. If it is to be integrated to the mainstream society, it’s got to be connected with the neighbouring villages with better roads in first place. Only then can we expect social interaction and integration,” he says.
During monsoon the village turns into Koliapani,” says Gogoi referring to the Kalapani jail in the Andaman islands where prisoners were banished to during the colonial era. “It becomes impossible to cross the Rangkham river at that time of the year as there’s no bridge on it. And we live like a marooned people,” he says.
“How do you expect that some government aasoni will reach here?” he asks.
While the Rajabari villagers’ trials and tribulations continues, the disease was declared eliminated as “a public health problem” in India in 2005—which implies that there were fewer than one case per 10,000 people in the country.
But elimination of leprosy as a public health concern hardly meant the end of the disease: the Central Leprosy Division of the Indian health ministry reported as many as 135,485 new leprosy cases in 2016, and according to WHO India accounted for 60 per cent of the global total of new leprosy cases in the past two-and-a-half years.
In early 2011, when three new cases of leprosy were detected in a tea estate in Mariani, some 25 km from Rajabari Christian Gaon, Gogoi was alarmed. “More than the disease itself it’s the stigma that is hard to fight. We still live like outcasts because of our past entanglement with the disease,” he says, “This needs to change.”
The writer is a freelance journalist in Assam.