For Jharia’s leprosy patients, every breath taken is a recipe for disaster

For Jharia’s leprosy patients, every breath taken is a recipe for disaster

For Jharia’s leprosy patients, every breath taken is a recipe for disaster

With coal dust lying suspended in the air 24x7, these socially marginalised people become easy victims of tuberculosis and other breathing disorders

Dhanbad, Jharkhand: Her sunken eyes, frail body and wrinkled face irrefutably etch the toll that leprosy has taken on her health. However, Sulochana Devi (50) is more worried about her two children.

“Five years ago, my husband died of tuberculosis. But I am compelled to remain here amid loads of air-suspended coal dust,” frets Sulochana, who lives at Durgapur Kusth Colony in Jharia, in India’s coal capital Dhanbad.

The colony residents live a near-ostracised life due to the social stigma associated with leprosy, an infection caused by Mycobacterium leprae that severely weakens one’s immune system. This, together with unhygienic living conditions and 24x7 exposure to air pollution from open-cast mines in the vicinity, has led to the increased prevalence of tuberculosis in the colony.

“I want to shift to some other colony in Dhanbad town, away from this pollution. But I am not sure if we will be accepted as my parents once had leprosy,” says Sukhdeo Mahto (29), who works in a showroom dealing with earthmovers in Dhanbad.

He is very worried about the health of his family, especially his seven-year-old daughter, ever since a girl in the neighbourhood contracted tuberculosis almost two years ago. Though Kavita Kumari (16) recovered fully, the incident left her mother Manju Devi (49) anxious about the health of her two other younger children and husband.

Teenager Kavita, a resident of Durgapur Kusth Colony, has recovered from TB but her two younger siblings remain vulnerable (Photo - Praduman Choubey)

“We do not have the option to shift to another place due to my husband’s limited income,” says Manju. On the other hand, Sulochana does not even have a fixed source of income. “There is no earning member in the family now. I somehow manage to meet basic expenses by begging alms,” says the woman in a worn-out sweater.

Another leprosy patient, Geeta Devi (50) was deserted by her husband more than a decade ago. “I have been suffering from severe lung pain for the last three to four months. I know it is due to some breathing disorder. But I do not have the money to diagnose and treat it.”

Mahto claims that the majority of the residents feel a burning sensation during the night, which he believes is the result of reckless mining by private contractors working on behalf of Bharat Coking Coal Limited. He confirms that skin diseases are also very common in the colony.

According to a study, authored by Bhawna Dubey, Asim Kumar Pal and Gurdeep Singh, suspended particulate matter, i.e. coal dust of up to 100 microns size, and respirable particulate matter, i.e. coal dust of up to 10 microns, are the major sources of air pollution from mining.

The study was conducted in affiliation with the Department of Environmental Sciences and Engineering of the Indian Institute of Technology (formerly Indian School of Mines), Dhanbad.


Life in isolation

There are seven leper colonies in Jharia, where more than 200 families reside. Among them, Durgarpur Kusth Colony is located closest to opencast mines. Far away from the main human settlements, 12 leprosy patients first settled here in the 1950s by building mud houses. Later, organisations such as the Lions Club and Damien Social Welfare Centre funded the construction of 44 houses here.

All seven leper colonies now fall under the Dhanbad Municipal Corporation limits, but the residents are not happy with this inclusion made in 2004 as they have to shell out more money for water and electricity in an urban area. 

Jharia’s community health centre functions at Chasnala and Tata Steel runs a hospital for leprosy patients at Jamadoba. The Damian centre operates a similar facility at Govindpur. However, patients in leper colonies mostly do not have the money to travel to these facilities. Some are physically handicapped, and cannot reach them on their own. 

(Above) Sulochana Devi does not have a fixed source of income after she lost her husband to TB five years ago. She supports her two children by begging alms; (Below) Geeta Devi who was deserted by her husband more than a decade ago has been suffering from severe lung pain for the last three to four months but doesn't have the means to diagnose and treat it (Photos - Praduman Choubey)

"Notwithstanding our frequent illnesses, healthcare workers seldom visit us. Even those engaged in immunisation drives are hesitant to enter our colony," claims Bhado Devi (45) of Durgapur colony.

A physiotherapist and founder of the NGO Green Life, which is actively involved in philanthropic activities in leper colonies of Jharia, Manoj Singh confirms that rising awareness about the disease has not helped matters much.

As per Dhanbad's District Leprosy Eradication Department, the district presently has 300 leprosy patients. However, no official data about lepers with tuberculosis is available.

Prevention better than cure

The Air Quality Index in Jharia is poor. As per a Greenpeace report, the PM 10 level in Jharia was 295 micrograms per cubic meter in 2017, and in Dhanbad 238 micrograms. Both figured in the list of India’s worst polluted towns/cities for several years, including in 2017 and 2018. As a consequence, Dhanbad Municipal Corporation area was included in the National Clean Air Programme of the Union Government launched in 2019. 

As per the programme, the air quality of 102 worst polluted cities/towns/areas was to be improved by 30% by 2024, which was recently revised to 40% by 2026. This includes a host of measures such as intensive plantation, installation of Continuous Ambient Air Quality Monitoring Stations (CAAQMS), sprinkling of water on muddy coal transport roads of collieries and green walling of residential areas.  

The municipal body claims to have initiated several measures, including holding plantation drives in Dhanbad town, using road sweeper machines and vehicle-mounted water sprinklers, and installing CAAQMS in half a dozen places.

Residents of Durgapur Kusth Colony in Jharia live a near-ostracised life due to the social stigma associated with leprosy and have no means or access to healthcare (Photo - Praduman Choubey)

Singh thinks mitigation of air pollution through government intervention is the best solution as Jharia’s leprosy patients do not have the money for treatment. Singh carries out sapling plantation drives in the district using innovative measures such as gifting a tree sapling to the newlyweds, during anniversaries or on birthdays.

Baniahir-based social activist and rickshaw pullers’ association president Prem Bachchan Das echoes similar sentiments. “Over 80 families reside in Baniahir Kusth Colony. Many suffer from breathing issues. It is important that the government concentrate on measures to free Jharia from air pollution and not just limit its responsibility to making facilities for treatment,” he says.

Noting that leprosy patients have lesser immunity compared with normal people, Jharia-based general physician Dr Nasir Haque says they have greater chances of contracting illnesses due to air pollution. “Chronic obstructive pulmonary disease, bronchial asthma and tuberculosis are caused by continuous exposure to air pollution. It is important to avoid exposure of leprosy patients to pollutants, including coal dust.”

Akhlaque Ahmad, a speech therapist and founder of NGO Youth Concept, which creates awareness on environmental issues, says COVID-19 period was of great concern for leprosy patients. “We had to repeatedly underscore the need to take preventive measures during our awareness drives in these colonies.”

Anup Sao, a former councillor of ward number 37 under which Durgapur Kusth Colony falls, says the 37 families in the colony were educated about various breathing exercises and the need to use masks and maintain cleanliness during the pandemic. The colony residents also organised a yoga session on this year’s International Yoga Day (June 21) as a symbolic protest against the government's inaction in adopting pollution mitigation measures.

Cover photo by Praduman Choubey clicked at the Durgapur Kusth Colony in Jharia

Edited by Rekha Pulinnoli


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