Mukesh Lal working on the loom. Picture by: Lilian- I was working out on the field in my village where I lived and worked with agriculture with my family, and my arm started to swell. I went to see a doctor, he did not say anything about what was wrong, but he suspected leprosy. Then I started to have problems and lose touch in my right hand. Then I came here to get a proper investigation and found out that I had leprosy, that is how the story started about how 26 year old Mukesh Lal ended up at Brahmapuri leprosy colony.
Dondhup Dolma that works for IM-SOIR taking pictures of all the elderly people that getting old age support and Mukesh with his youngest daughter.Mukesh have stayed in the colony now for ten years, is married and have two daughters one of whom attend school in Rishikesh about four kilometers away. The second one is only two years and stays at home. It is only Mukesh right hand that is affected of the leprosy. His wife do not have leprosy but has a skin disease, leukodermi. She have been living with Mukesh in the colony for six years. Mukesh came to the colony by his own choice, after seven years of schooling in his home village, Theri. He knew the colony because his grandfather, that now have passed away, lived here before but had already returned to the village in Tehri when Mukesh got here. The benefits of living in the leprosy colony is that he is getting medicine regularly, and there is a safety and security in that he knows if he would be worse and they will take care of him and for him to hospital. Of course he adds, that it also a good opportunity to get a occupation and a shelter.- I am feeling much better now and also got back some sensibility in my hand, he claims.A typical day Mukesh get up at 6 am and help his oldest daughter with her homework before school. There are three school children who attend a school in Rishikesh from Bramapuri leprosy colony, none of them have the disease. The parents share the responsibility to get the children to school. The school is a governmental school which is about 30 minutes away on motorcycle. The school fees is 10 INR a month that is paid by the families. After the children have been sent to school Mukesh starts to work. He is working with a little bit of everything in the colony, dying the wool and cotton, working with the loom, wash the cotton and wool and packing the finished products and more. After looking at Mukesh in his work you can also notice that he is a helper in that sense that if anyone of the others have any trouble he is there to help them out.
Mukesh Lal helping a older working colleague that got some trouble with the loom.
Mukesh finish his work about 7 pm working, he says, or latest by 7.30 pm . He works everyday except Sunday. His spare time he cleans the house and perform other households chores, find and collect firewood and of course taking care of his two daughters. He have a postive attitude and infectious laugh.
Food distribution that occurs once a month in the colony.Mukesh earns around 700 INR a month and his wife earns around 650 INR a month. But then they also get the housing, water and electricity from the colony. Also the food is provided by the colony and is rationed once a month. Mukesh have learned the occupation during his years at the colony and did not know the occupation before he moved to the colony. When I asked if there is any improvements he would like to see in the colony connected to the work or his private life he smiles.
- We all have dreams but they will not be fulfilled, he says.
I insist that I want to know them anyway.
- I wish that my children had a school closer to our home because it is difficult to travel there during the monsoon period when the roads gets very bad, he answers after a little thoughtfulness.
Another part that he see as significant is that they need toilets in the colony.- The lack of accessible toilets are a major problem, we go out in the jungle, so it would be good if we could get that!
When Brahmapuri was built is was situated quite far away from the city and other human settlements but now it is coming closer and closer to the colony. Right now a major road and a bridge over Ganga is being built, and it already exist a big road above the colony. This means that the places to go to do their toilet chores is decreased. He also states a wish to have a resource person who takes care of the elderly. As it is now and the younger and those who are capable assist the ones that need help, such as shopping and collect firewood, but it is not always they have the time needed which has been increased when there becoming more and more elderly people in the colony who needs more help.When I ask about who the consumers mostly is then he is nt completelly sure but says that he knows that they export al alot.- I think it is mostly to Germany, France and Italy, he says smiling but with a sense of doubt in his voice.
Text and photos by Lilian
-I was always thinking of my life, what will happen to me?!, says Rajendar Singh also called Raju that works at Bramapuri leprosy rehabilitation center.
Rajendar Singh in the weaving hall on Bramapuri rehbilitation center (Photo by Lilian).
He is 45 years old and when he was 17 he found out that he had leprosy that he probably had for a couple of years before got to know that he was affected. Raju grew up in Benjwari and it was there when he played with other children he noticed that he got wounds that did not heal properly. Other leprosy patients at the hospital were he was treated told him and advised him to go to the rehabilitation center in Bramapuri. He thought that it was a good idea because he wanted to learn a profession and work. He needed a job that was not so physically that he could be able to work with even though he had leprosy.- I was thinking to stay here and work for about two-three years but stayed because I could combine work with my rehabilitation, he says.
Pierre,a french man that been working in the administration for KKM for over 40 years, taught him English after the working hours. On that time we had no electricity and no TV or things like that so there was no other option than to study, he explains.
Raju sitting on the loom (Photo by Lilian).
Raju works as a workshop manager for Bramapuri rehabilitation center and meets the general director twice a month. That is needed, partly because the dyeing part takes place for several of K.K.M´s places here. Raju lives in the rehabilitation center and looks after that the water and electricity works in the colony, repairs things that is broken and also do the administrative work in the colony. He has been working in the colony since 1984 and started to work as a weaver in the weaving hall but advanced to to other chores. Himself he sees that the opportunity to get other responsibilities in the society was increased because ha have nine years of schooling which is quite much compare to many of the others in the colony.
The colony consist of about 60 people, He says that the colony's have many uneducated people that have lived there for a long time so there is mostly elderly people there. I think it is important to point out that the people ni the colony can often be uneducated in the sense of having not fulfilled their school education and do not have any university degree, but still they are very skilled in their work and know their occupation which is one important form of knowledge.Rajus wife, that also have leprosy, works with stitching. Her dad that also had disease works in the rehabilitation center but a bit less now a days due to high age. The family also have two daughters, the oldest is living and studying at a boarding school in Dheradun and the youngest one attend to school in Rishikesh which is the closest town to the center. Raju tells me that hey have one month maternity leave and 15 days paternity leave but it can be prolonged if necessary. The mum can also work from her home for some time after delivery. Raju thinks that leprosy will be extinct in a near future and that the colony therefore maybe will not be needed in the future. The Indian government has given the leprosy rehabilitation center a license of the land for a period of 30 years that now has expired so the future is a little bit unclear.
Lilian makes the interview with Raju (Photo by Dondhup Dolma).
Raju has in his roll as administrative worker participated in a work-shop about fair trade that SOIR-IM arranged.
-Fair trade is about getting profit for the producer in many areas and also for the buyer to know that everything is good, he says when he gets the question what fair trade means.
-The work-shop was good because we got the opportunity to meet other organizations and groups and to develop contacts and know how they work. It is also good to see a face for the other organizations that work with this, he says.
The ones that visit the rehabilitation center buys the products when they see they capacity of the workers even though the often reached a high age and have physically disabilities Raju is explaining.- If people compare to other products on the market and do not see the people behind the products then it is much harder for us, he explains.
Text by Lilian Sahlin
K.K.M hand weaving society is one of the organizations SOIR-IM have had a long cooperation with. SOIR-IM provides a certain amount for the old people at K.K.M and also provides a scholarship for the children living in the society.
Five of the elderly people at Bramapuri leprosy colony that get old-age support from IM-SOIR. From the top: Mrs Gunda Devi, Mr Hira Singh, Mrs Gaina Devi and Mrs Pyunli Devi.The main aim of the society is to give people affected by leprosy a way of rehabilitation through productive work. Hand-weaving is seen as the most physically suitable work for the leprosy affected in their particular set-up. K.K.M produce weaved carpets, table cloths, baby carriers, bed sheets and more of wool and cotton. Also bags and papper products is produced. The dye their cotton and wool by themselves with azo free dyes. These products is sold in IM-SOIR own fair trade stores in Sweden.1962 started the german lady Agnes Kunze hand spinning in small scale to help the leprosy affected in the first leprosy colony, Kripaon Ki Mata so they could earn some money to manage. A work hall with spinning wheels, looms and other necessary equipment was installed. The word was spread that leprosy affected could get both work and shelter in a place in Dheradun. The request from leprosy affected that got treatment in hospitals and got rejected from their families and former home villages to come and live and work at the colony was increasing for K.K.M. 1971 two other colony's started to work in the same manner as the first colony, one in Dheradun and one In Brahmapuri. A federation society of workers under the name K.K.M (Kuru Kshetr Mandal) Hand weaving society was registered.K.K.M has about 20 board management members that meets once or twice a year, Under K.K.M there is four groups and each one of them elect a group leader and workshop manager which meets the general management for the society minimum twice a month to plan the production and solve problems.Leprosy colonies have not existed in Sweden since 1947, i.e. not during my life time. For me as a young swede it can seem a little bit odd to put people affected by a disease in a colony, that a colony would increase the alienation that the disease brings. The people does does not even have the disease after being treated. But with the stigma that leprosy brings it still have it´s place here. It can be difficult for people with leprosy to get a job, education and get married in India. Leprosy is decreasing in India but the official number is still about 0.88 cases per 10.000 (2006, WHO). The colonies provides a package with housing, food and job which enable the people to get a job and an occupational skill so they can support themselves.
The gate for Bramapuri leprosy center, the weaving hall, the wool gets washed and dyed and dyed cotton hanging to get dry.Bramapuri leprosy Rehabilitation center is one of the four groups in K.K.M society that I have been visited this weekend, I will give you two life storys from there!
Photos and text by Lilian
