New hope rural leprosy trust

NEW HOPE RURAL LEPROSY TRUST

New Hope Rural Leprosy Trust
PO Box 1
Muniguda
Rayagada District
Orissa
INDIA 765020
EMail: newhopehoina@hotmail.com
Director: Eliazar T. Rose

BACKGROUND INFORMATION
Probably the best way of introducing the work of New Hope is to recount some of the early experiences of the founder of the Trust, Eliazar Rose, in the introduction to his book "The Ring of Capital L":

I was in a leprosy colony taking skin biopsies when one day a woman came in and sat on the broken step of the small temple which a local businessman had built. He had in fact encroached on a piece of Government land allocated to the colony.
The land was barren and stony - wasteland except for one corner of approximately one acre. That piece was almost prime rice land as it had a small spring fed irrigation canal at one point. The businessman owned the adjoining land and simply encroached on the piece that would at least have given the patients a few bags of rice. The temple was an appeasement to the colony to get them to back off with their constant appeal to the local government land revenue officer. The temple of course was built with sun baked mud bricks bonded with a mortar with very little cement. The building, not surprisingly, started crumbling with the first monsoon rains.
Jokingly I told her not to sit on the cracked step as the wall behind her might collapse and fall on her. She asked if that happened would she be killed?
I didn't answer.

Her story was simple. She had leprosy for many years, taken treatment and stayed in her home because her husband was the village leader. He believed it was his responsibility to care for her against the social norms of the time.
He died and the village turned her out with the threat that, if she didn't go, they would burn her house down.
She left alone and her married family stayed behind in the village.

In the same colony a year later a woman came in while we were distributing rations. It was mid summer and simply too hot for the old people to go begging. This was long before we started a programme of custodial care by having people sponsor the aged.
At the end of the long queue an argument started. I stopped helping the two paramedics weighing out rice to see what had happened.
The argument was about this woman who had been in the colony for a couple of weeks and was not on our register. The elders of the colony had said that she couldn't get a ration because they feared that one extra would mean a fraction less for them.
Life in a leprosy colony is tough - Life in India for the poor is tough.
She argued that she had a piece of paper like them. Everyone had been issued with a ration medical card. She did have a piece of paper. It was a hand-written notice certifying that her husband had divorced her because she had contracted leprosy.

In the same year I watched from a small first aid post we had constructed in a colony as a bullock cart wandered slowly down the dusty track in the middle of the afternoon. The wind was hot and it had been a long day dressing ulcers. I wasn't really in a good mood.
The cart creaked to a halt and a woman slipped off the back and squatted on the ground. Three men climbed down and came over. They announced they had decided to send her away as she had leprosy. They of course said they were doing a kind deed bringing her to a colony instead of simply sending her away with nothing.
One man was her husband, another was her eldest son and the third was from the lowest caste in the village. It had been his job to help her climb onto the cart.
They nodded when I asked if the 'well conditioned bullocks and cart were theirs. They smiled with pride.
Something cracked inside me. I had the colony men drive the three of them out of the colony without their bullocks and cart.
They went to the local police station and tried to register a case. A lone constable came to the colony, or should I say as near as he dared; to the path leading to the colony. I told him that indeed the colony did have a cart and two good bullocks and that two men had come into the colony and tried to steal them. Did he want to come into the colony and verify it all?
The police inspector saw me in town that night and stopped me. We made a deal that the cart and bullocks should be sold within three days and that I should report that there were certainly no bullocks or cart in the colony.
The proceeds built the outcast woman a small mud-walled hut with a grass roof. Majji lived there in the colony for almost twelve years. She died in 1996.
I don't know how often she smiled, but whenever I visited the colony she would nod and smile as I passed her hut.
It was during this time that I was employed to visit 13 leprosy colonies to see more than 2,500 patients on a monthly basis. Things seemed to happen when I was in the colony. I know these experiences have influenced the policy of our Trust to adopt an 'open door' approach.
One cold winter's morning I cycled from the town where I stayed to five surrounding leprosy colonies.

The turn into one colony was at a junction on the highway. There was a tea shop on the corner where I went each month. The owner asked me where it was that I went when I visited. I told him 'To the leprosy colony down the road'. He did not smile.
After that, whenever I stopped he would take a cup down from the top shelf and wash it out with hot water before pouring my tea. When I had finished he would pour hot water over the cup and place it back on the top of the cupboard.
The fear associated with leprosy is not something that is described in words, but rather by the actions, of others.

One month later I arrived at Jigabur leprosy colony. I was late because the monsoon rains had caused a river to flood. Thirteen houses in a small colony on the bank had been washed away when an embankment upstream had broken.
We got no sympathy from the local government flood relief officer. He considered it a blessing that the houses and people had been washed away in the night as it meant they were no longer 'polluting the river'.

I didn't know what to say when a new patient appeared before me for an ulcer dressing. I asked her name. She began to cry. She had been warned by her family never to mention her name even when they forced her to leave their home and village.
She showed me a two rupee note her husband had given to her. He gave it to her with the advice that the best thing she could do with the money was to buy rat poison for herself.

I am not very fond of speaking at service clubs in India. I have the feeling they are out of touch with the social fabric of our society. A few times I have not been able to come up with excuses quickly enough and have felt obliged to attend.
At one such meeting (it certainly wasn't at a Rotary Club), a member asked if I could please visit his home the next day. I knew by the way he spoke there was 'leprosy in the house'.
His brother's wife was in what I will simply describe as border line leprosy trauma. She was pregnant with her third child. The husband was a lawyer and the brother, incredibly as it seems, was a doctor.
Money was not the problem. Their request was simple - could I find a place in one of 'those places' where 'they' lived and build her a 'nice place'. The end of this story is too sad for me to write about, even after 15 years.

It is my belief that if we can change the attitude of people in India towards this now curable disease, we can make other social changes.
If we can change the attitude to a disease whose name strikes terror just by its utterance, then getting other social changes will be easy. This policy, this belief, is happening in areas where we work.
Nowadays we see fewer and fewer people being turned away from their families, their homes and their villages because of the stigma associated with leprosy.

Some people allege that young people become leprosy paramedics simply because they can't get a job elsewhere, or because it pays reasonably well (at least today it does).
I disagree, because you need to have a heart in the right place, you have to have a depth of compassion and courage, to write LEPROSY PARAMEDICAL on papers, that goes far beyond the negative comments that some people still make.

Although New Hope was established originally to help those suffering from leprosy, its work has expanded to include tribal people in general, street children and victims of 'natural' disasters.
Since its foundation New Hope has carried out health inspections on over one million people in western Orissa. Over 6,000 people have been identified with leprosy and most have received treatment. Over 5,000 have been cured.
About 400 are currently being treated at their Centre in Muniguda.
In addition to the hospital, the only one of its kind in western Orissa, the Centre accommodates:-
· a hostel for children with physical and mental disabilities (mainly polio) -
· calliper and shoe making units
· administrative block, and staff and patient accommodation
· accommodation for visitors, surgeons and students
· a weaving unit
· a shop for the use of patients
· laboratory
· vegetable gardens for patients
· occupational therapy unit
· savings and credit facility

New Hope also has homes for old people, disabled children and for street children.

Leprosy Colonies
In the leprosy colonies it serves, New Hope treats 2,500 patients on a monthly basis and has extended its work to the 76 villages of a remote hilly and forested tribal area named Raghubari.
In all its areas of operation New Hope provides anti-tetanus and polio immunisation, iron and folic acid supplements and safe delivery kits for pregnant women.