A Fact-finding Report
Having heard from some Activists-friends about untold story of leprosy patients in leprosy Colony located in Balasore , a five-member fact-finding Team of Civil Society Groups had visited Balasore on 6.9.16 to ascertain the fact, understand their conditions and explore the possibility of intervention to address their problems. The Team members who visited leprosy Home and Hospitals located at Bamapada and three leprosy colonies i.e. Madhusudan Leprosy Colony, Fakir Mohan Leprosy colony Nuiajori Leprosy colony of Balasore town were as follows.
1. Sri Pradip Pradhan, State Convener, Right to Food Campaign, Odisha
2. Sri Pratap Sahu, Convener, Basti Surakhya Manch, Odisha
3. Sri Sanjay Sahu, RTI Activist and Member of Odisha Soochana Adhikar Abhijan
4. Sri Partha Sarathi Jena, Social Activist, Balasore
5. Sri Padma Lochan Datta, Senior Citizen, Balasore
During visit, the Team interacted with a number of leprosy patients, local volunteers and Staff of leprosy Hospital, local MLA etc. The following persons responded the query of the team properly and enlightened them about deplorable condition of the patients and inhabitants of the colonies.
1. Ganeshwar Sahoo, retired Ward Attendant who was found well-conversant about the problem of the patients and guided the team.
2. Malati Majhi, patient staying in colony for 25 years
3. Dasarathi Rout, Monitor of the colony
4. Niranjan Mishra
5. Gobindra Ch. Das, MLA, Remuna
1. History of Leprosy Home and Hospital, Barapada
Balasore is the bordering coastal district of Odisha to West Bengal. All the Leprosy Colonies are located in Balasore town which is around 200 kms from Bhubaneswar, capital city of Odisha. In view of large number of poor people suffering from leprosy considered as dreaded disease in the society, Sri Rai Sahib Panchanan Khan, inhabitant of Balaosre donated 11 acres of land for establishment of Leprosy Hospital in 1945. This colony was named after Sir William Hawthrone Lewis, Governor of Odisha who inaugurated it. This Lewis Leper Colony located at Barapada under Remuna Block provided space for leprosy affected people to stay permanently as they require long term treatment for getting cure. In 1978, the State Govt. constructed 40 houses for rehabilitation of leprosy patients and accommodated 60 patients and their families in this colony in 1981. During early part of 80s, the State Govt. also opened 20-bedded hospitals for treatment of patients. The Team also visited Madhusudan Leprosy colony which has been developed in due course of time by the patients who got cure and started living together with their families without going back to their native village. Around 150 leprosy families are staying in this colony in a very wretched condition without proper shelter and source of livelihood. The team also noticed few patients like Malati Majhi, an old woman leprosy patients residing in leprosy home since 30 years.
Similarly, the Team also visited another leprosy colony named Fakir Mohan Leprosy colony where around 40 leprosy families staying unauthorisedly close to railway line under Balasore municipality since last 50 years. Their living condition is very precarious. Though they have approached the Govt. several times to allot land in their name, the district administration has not taken a single step to provide land to them.
The Team also visited Nuniajori Leprosy Basti which is the habitation of 20 leprosy families and 2.5 kms from Balasore town located on roadside of Balasore to Kholadi coming under Haripur Gram Panhayat. All are land less and living in abject poverty.
2. Problems encountered by the patients
A. The Team observed that all the houses allotted to patients for living was found dilapidated and not at all conducive for their stay. The patients are forced to stay, as they could not find any viable alternate place for accommodation. Since 1981, these houses have not been repaired by the Govt. despite several complaints filed before appropriate authorities.
B. The sanitation in the colony is in very bad shape. All the latrines are lying defunct due to lack of repair since last few years. There is no latrine in the colony. The inmates make open defecation along roadside. The Team also came across the sewerage and drain water mixed with poisonous chemicals from Birla factory flowing through leprosy colony affecting the environment of the colony with bad smell and creating health hazard.
C.The hospital condition is horrible. The hospital is devoid of doctor, staff nurse, attendant and dresser. It is managed and looked after by two illiterate sweepers. The beds are found broken. There is no bed-sheet, no accessories and nobody is there to take care of patients. The team came across five old patients lying in bed without any attendant. An AYUSH doctor having no expertise to treat the leprosy patients uses to visit hospital to treat patients once in a week. There is no latrine in the hospital and no drinking water. The people alleged that in 2014-15 Rs. 5 lakh which was sanctioned for repair and reconstruction of the hospital has been misappropriated by the Contractor.
D. As there is no dresser, ulcer of the patients is not being dressed with medicine. The patients are asked to go to Primary Health Centre, Remuna for dressing which is 5 kms from their colony. As the leprosy patients are handicapped and unable to walk, nobody goes to PHC for treatment. Either they themselves make dressing or take help of co-patients for the same.
E. A sum of Rs. 50.00 is allotted by State Govt. for food of each patient in the colony. Though there is provision for supply of cooked to the patients, there is no kitchen, no cook to prepare food. Dry food like rice, dal, and vegetables are provided to the patients by a contractor engaged by the District administration. The inmates prepare food with a lot of hardship without any external support and consume it. They alleged that the contractor misappropriated their fund and supplied less quantity of items to the patients. They patients also alleged that Rs.50 per head for food was also not sufficient to meet food requirement per day. Though more than 60 people are staying in leprosy Home, food is allotted for 33 patients only.
F. During visit to Madhusudan Leprosy colony, the team observed that the colony gradually developed nearby leprosy Hospital is the habitation of 150 leprosy families. After a long fight and persuasion, the district administration has allotted homestead land with patta in nearby Gochar land to around 120 families in 2008. Then, around 60 households have been allotted house under Indira Awas Yojana(IAY) since 2009. But astonishingly, not a single house has been completed since last 8 years. On query about reason for non-completion of the building, they said that the fund allotted against IAY is not sufficient for construction of a pucca house. We do not have a single penny to contribute in order to finish it. There is no road connectivity to the area. The cost for construction of house is very high against allocation of fund. Sewerage and chemical water from Birla factory is passing through this area. Though few of them have constructed house, they do not prefer to stay in the house due to bad smell and unhygienic condition.
G. There was Lift Irrigation point in Leprosy Home. The people are cultivating paddy and other crops taking water from L.I.Point. But due to over exploitation of ground water by Birla Company which has factory close to Leprosy Home , the L.I. Point got defunct, the ground water went down which resulted in damaging production without water. The leprosy people have stopped cultivation. Though they have approached the Govt. several times, no step has been taken for functional of Lift Irrigation point.
H. Though there is a Anagwadi Centre functioning in the colony, there is no building house for the centre.
I. Total number of around 60 leprosy families of other two colonies like Fakir Mohan Leprosy colony and Nuniajori Leprosy Basti are landless and living in very sub-human condition. They are found hopeless and helpless because after several approach, the district administration has not been able to provide them land patta.
J.The State Govt. has not yet launched any programme for their proper rehabilitation. So due to food insecurity, they are found begging in the street for survival.
3Recommendation by the Team
After examining the details of problems encountered by leprosy patients in all three colonies for years together, the Team is of the view that the condition of the patients has got deteriorated due to sheer negligence of the State Govt. and careless attitude of the officials. However, the Team came forward with the following recommendations to the State Govt. and district administration to address their problem in order to help them to survive with dignity. As the leprosy patients are highly neglected and outcaste by the society due to their disease, they continue to suffer till their death. So the Team feels that special intervention by the Govt. is required to save them from humiliation, social stigma, hunger and destitution.
A. As it is leprosy Home and Hospital, the State Govt. should take steps immediately to make 20-bedded Hospital functional with appointment of doctor, staff nurse, attendant etc. The Hospital must be well-equipped with latrine, availability of drinking water, medicine and supply of food to the patients etc.
B. all the half-broken and dilapidated houses must be constructed by the Govt. with proper budgetary allocation on war-footing way. So that, the leprosy patients can make decent living.
C.The State Govt. should direct Birla Company to stop release of sewerage and chemical water through leprosy colony which has created unhygienic atmosphere in the area.
D. As many houses allotted under IAY scheme are lying half-constructed, the District administration should allocate fund for completion of these house under various schemes at the earliest.
E. All the leprosy families of three leprosy colonies need to be properly rehabilitated with allocation of land for their survival within time- bound manner. So that begging can be checked.
F. As drinking water stands major problem in all colonies, the state Govt. should ensure drinking water for all the people at the earliest.
G. Lift Irrigation point must be restored and functional. The Agriculture Dept. should be directed to promote cultivation under various schemes in the area. So that, the able-bodies leprosy patients will generate income independently for their livelihood.
H. Allocation of Rs. 50.00 per patient per day is not enough to strengthen their food security. So, the Team recommends that it should be increased to Rs. 100.00 per patients.
I. The State Govt. should launch various schemes in order to provide them employment generation activity. So that, they can earn immediately and live with dignity.
Pradip Pradhan Sanjay Sahu Pratap Sahu Partha Sarathi Jena
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