Delhi’s Leprosy-Affected Have Nowhere to Go. Who’ll Take Onus?

As India grapples with a brutal second wave of COVID-19, governments are continuing to advise double-masking and physical distancing, to curb the spread of the deadly virus. But implications does the concept of physical distancing have for an-already neglected community?In the interiors of northeast Delhi, the members of the Adarsh Kusht Seva Samiti (Adarsh Leprosy Service Committee) — a self-organised committee of around 100 people afflicted with leprosy — live in the Tahirpur leprosy complex.On 8 March 2021, around 50 members of the Adarsh Samiti staged a sit-in outside the office of the Social Justice Minister of Delhi, Shri Rajendra Pal Gautam. Their demands are simple: a permanent house in a colony meant to be their own, but which has now left them on the streets begging for alms.“We have been running from one office to the other over the last 3 years. No one listens to us, be it AAP, Congress or BJP. Everyone comes to ask for votes, but after they win, they never come back,” says Amarjeet Kushwaha, the chief of the Adarsh Samiti. “There is no work, no earnings, especially during the pandemic. It is getting very difficult to survive.”History of Delhi’s Tahirpur Leprosy ComplexOut of the nearly 800 leprosy colonies in India, the Tahirpur leprosy complex is considered to be one of Asia's largest such colonies. Further spread into 29 self-managed colonies, Tahirpur complex is home to thousands of people affected with leprosy, who left their villages and families to seek a life of dignity, free from social stigma. The complex was developed by the Delhi administration between 1950 and 1960, when around 200 families affected with leprosy were moved here from the Yamuna Bazaar slum areas, and were given a sum of Rs 50 each to construct their own huts as per a government lay out.However, the area expanded through a large number of leprosy-affected beggars who were arrested under the infamous Bombay Prevention of Begging Act, 1959 — the anti-beggary law extended to Delhi in the year 1960. Under this law, anyone found ‘begging’ could be arrested without a warrant by the police, and, through a trial by a metropolitan magistrate, be sent to one of the 11 ‘beggar homes’ in Delhi for a period ranging between one year and three years.In case of beggars found to have leprosy or tuberculosis, the place to be sent to was the ‘Home for Leprosy and TB Affected Beggars’ (HLTB), established in 1962 in Tahirpur.Parliament Passes Law Removing Leprosy as Ground for DivorceHow Most Members of Adarsh Samiti Found Their Way to Tahirpur Leprosy HomeMost members of the Adarsh Samiti found their way to Tahirpur by using the beggary law to their advantage. “HLTB was very popular,” says Mohammad Aslam, 63, the chief of the Ekta Vihar leprosy colony, who has been in Tahirpur for almost 40 years. “When I first came to Delhi from Bihar, I found a couple of ‘leprosy bhais’ (brothers) who told me to go beg in front of the Hanuman Mandir at Delhi’s Connaught Place. A police van would apparently come and pick me up and I would be sent to HLTB in Tahirpur where I’d get food. So I went and got arrested after a week.”Like Mohammad Aslam, most members of Adarsh Samiti lived on the footpaths outside either Gurdwara Bangla Sahib, Hanuman Mandir or Sacred Heart Cathedral in Connaught Place. They begged and waited for the police vans to take them to HLTB. Once there, the government provided them with everything ranging from food to medicines, clothes to daily essentials.Delhi’s Beggary Law & Impact on Leprosy-Affected PeopleAfter their detention period got over, they used to go beg again at the same places, so that they could be arrested again and sent back to the home. They also received a financial assistance of Rs 1800 per month under the Delhi government’s RCL (Rehabilitation Centre for Leprosy Affected Persons) scheme, 1993. This has now been increased to Rs 3000.However, in August 2018, the Delhi High Court struck down several provisions of the beggary law in Delhi as unconstitutional. The main provisions of the Bombay Act were declared as against the mandate of Article 21 of the Constitution which guarantees citizens right to live with dignity and with the necessities of life required for it.60% of world's leprosy patients in India: Japanese philanthropist‘Leprosy Patients are Dying on Footpaths’Ironically, it was this very judgment that deprived most leprosy-affected people in Delhi of a life of dignity. As the judges noted that all prosecutions under the law were liable to be struck down, the HLTB officials started phasing out the inmates. While earlier, the inmates could find their way back to HLTB, the striking down of the law has left them with no place to go.Some use the financial assistance of Rs 3000 to live on rent in the old kaccha houses which were constructed by ‘leprosy bhais’ who have now left the area. The rent is usually around Rs 5000. The rest they manage through begging — which has also taken a hit during the pandemic. The ones who can’t manage the money are forced to sleep on the streets.“Leprosy patients are dying on the footpath. Human lives have no value. We only matter when politicians have to take our votes. If we die on the street, an MCD van comes to pick up the body and leaves. No politician remembers us…,” says Vishwanath,* 52, who stays in a rented room on the outskirts on Tahirpur.Yes Leprosy Still Exists: Let’s Pledge to End Discrimination NOWOfficial Ignorance of Leprosy & Its Long-Standing Impact on Those AffectedMembers of the Adarsh Samiti show documents they’ve carried since 2010, when they were inmates in HLTB. In 2008, the Delhi government undertook a survey of Tahirpur, promising the inmates a house in the complex. They received identity cards (‘peela card’) from the government and medical certificates from Guru Teg Bahadur Hospital, on which depends their RCL financial assistance.However, despite having these documents, none of them have been allotted a house. Moreover, many members are deprived of even the meagre RCL money.Members point to the often ignorant stand taken by district officials in RCL, Tahirpur, which comes under the Social Welfare department. “Sometimes officials tell me, ‘your leprosy is cured; why do you need money and a house from us?’ I tell them that it’s only the disease that is over, not leprosy. I’ll be walking on the street and people will still call me ‘kodhi.’ It never gets over. The disease is gone, but I’ll always be a ‘kodhi. Nobody will give me work or a house,” says Deependra,* 50, who was kicked out of HLTB in 2018, when he complained about irregularities in ration distribution.How Outsiders ‘Took Away’ Rights of Leprosy-Affected PeopleIn multiple orders, the Delhi High court has highlighted corruption on part of the officials and local strongmen in the area. In an order on 17 January 2017, the Delhi High Court endorsed the findings of Seemapuri’s SDM, that ‘able-bodied outsiders’ in the colony are ‘sheltered by the panchayats, their pradhans, local politicians and, reportedly, by some others who are professional litigants.’Justice Manmohan noted that it is due to the ‘encroachment and illegal construction’ carried out by ‘outsiders’ that leprosy-affected people in Tahirpur ‘have been forced to squat and beg on pavements outside public places and places of worship.’ This order lifted the earlier stay on the demolition of ‘unauthorised’ houses in Tahirpur. In April 2017, however, a different bench of the High Court extended the stay order, maintaining status quo.This ‘outsider’ discourse is highly prominent in everyday conversations in Tahirpur. “The Delhi High court has, time and again, ruled in our favour. Judges have said that today, Tahirpur doesn’t have a place for its own people. A lot of healthy outsiders have come and settled here and there is no place left to go,” says Vishwanath.*Misplaced Administrative PrioritiesHowever, while the Samiti formally argues for evictions, some members reveal a different stance in personal conversations. There is anger, but also a sense of understanding that no one should be evicted overnight because of court orders.“Even when they are ‘healthy’, we do not want to uproot anyone from their homes. We have nothing personal with them… In fact, there are already around 100 houses lying vacant for years in the complex but the Delhi government does not allot them to us,” argues Kushwaha, pointing to a dilapidated apartment complex in Kasturba Gram, one of the colonies established in 1976 by the PwD. “Apart from that, there are at least 25 sealed houses across different colonies in Tahirpur. Why not give that to us?”The problem, then, is not entirely lack of resources, but administrative priorities. “Everything else is meant to distract us.”* Some names changed on request(Manas Raturi is a PhD scholar in Sociology, School Of Liberal Studies, Ambedkar University Delhi. His doctoral work focuses on migration and kinship patterns amongst leprosy-affected people in Delhi. He tweets @manasraturi. This is an opinion piece and the views expressed are the author’s own. The Quint neither endorses nor is responsible for them.)

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Delhi’s Leprosy-Affected Have Nowhere to Go. Who’ll Take Onus?

Many leprosy-affected persons in Delhi have criticised the govt & local admin for alleged apathy and corruption.

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