Personal testimony - Eliazar Rose

Country: INDIA Name: Eliazar Tumati Rose Date of birth: 1st July 1960 Home: Muniguda, Rayagada District, Orissa State Organisation: New Hope Rural Leprosy Trust and HOINA Leprosy Research Trust, PO Box No. 1, Muniguda, Rayagada District, Orissa, India 765020. EMail: newhopeindia@live.com I was born to leprosy patient parents and lived in a leprosy colony with them up to the age of 7 when I left to live in an orphanage run by missionaries. My own mother had to beg for a living and my father tended animals and otherwise helped on farms run by land owning farmers. The experience of my mother in her early years was to have a profound effect on the approach I would adopt later in life in trying to help those afflicted by leprosy. She was brought up in a rich family and was well cared for until her parents discovered she had contracted leprosy. At that time, and in many communities to this day, there was a devastating stigma attached to leprosy that could affect not only the victim, but the whole family. For example, the brother of a girl who had leprosy might find it impossible to find a bride. The family would be ostracised by relations and friends. Her parents took her from their home in Nagari in the Chittur district of Andhra Pradesh to a hospital in Bapatla, 600 miles away, where she was abandoned. She left the hospital cured of the disease but her deformed hands meant that she could not obtain a job and had to beg for survival. In the process she found others in the same situation who had come together in a leprosy colony nearby. There she met my father and this is where I was born and lived until I was sent to the orphanage. Here I was able to complete High School 10th grade. Life was hard. The missionaries did not have enough funds to be able to provide the children with enough food, clothes and shoes. From there I went to a technical training school for 2 years and qualified as a mechanical fitter. I successfully applied for a job in the Indian Railways but something happened which was to be a turning point in my life. As a result I did not in fact take up the post offered. In 1978 I was motivated by a Christian missionary to work for people in several leprosy colonies in Andhra Padesh and Orissa. Just like my mother, anyone with leprosy had to live far away from the rest of society and was forced to beg for a living. Because I was working with leprosy sufferers, many shopkeepers would not serve food to me and my team and we usually obtained foodstuffs at certain stores and prepared and ate our meals in the colonies. We frequently cared for and tended people with bad ulcers caused by long-distance walking or heavy work with the hands. The experience of my mother began to shape my ideas for how we should be helping leprosy sufferers. This approach, I felt, must do more than treat disease, because it was the attitudes of society towards leprosy patients that caused more hardships for them than the disease itself. My mother's experience hurt me deeply and drove me to the belief that we had to focus much more of our work on changing peoples' attitudes. We wanted those afflicted with leprosy to be accepted into the communities where they lived in the same way that those with more common diseases were accepted. In 1980 I was trained as a leprosy smear technician in one of the leprosy training centres and helped with the care of 2,500 patients in several leprosy colonies. In 1984, myself and a few friends, many of whom were cured leprosy patients or, like myself, children of leprosy patients, established a Leprosy Research Trust in the Rayagada District of the state of Orissa to work in the surrounding tribal villages. Our approach was to treat a range of diseases like cholera, malaria, TB and hepatitis as well as leprosy. If we discovered the first signs of leprosy in someone living in a village and this was not known to other people, then we would treat this in secret. Often the pretext of investigating the first signs of other diseases gave us the opportunity to identify and treat those with leprosy. Rarely did we find people with leprosy at an advanced stage because they would have been turned out of the village and usually drifted into leprosy colonies where they lived in appalling conditions. Of course we also continued to work in these colonies. Gradually we were able to extend our work to 3,353 villages with the support of LEPRA UK. Most of our work was focused on the identification and treatment of leprosy, but we realised that if we wanted to help all the tribal people in this deprived area we would have to develop a more holistic approach which addressed all the factors which kept the tribals in a state of poverty. In 1985 we established the New Hope Rural Leprosy Trust to develop this approach under the headings of health, economical development, agriculture, environment and education. Our work was further expanded to surgical operations for leprosy and polio deformities and eye cataract operations, when, with funds from Lepra UK we established a hospital in our compound at Muniguda. A farm was established a few miles from the site for post operative care and training for leprosy patients in techniques that will enable them to prevent further damage to their feet and hands and to increase their income generating opportunities. Our work has also extended to the care of aged people in general and 'street' children. Our operational area expanded in 1999 following a severe cyclone and tidal wave that hit Orissa's coastline and made thousands of people homeless. It was difficult to find anyone in the area flooded who had not lost members of their family. My wife, Ruth has continuously supported the work of both organisations and takes a leading role in all activities, especially during my periods of absence when I am visiting friends and supporters and seeking ongoing support for our work. We have evolved as the situation has changed in the areas where we work; for example we lead the way in our District towards eradicating Polio and the country recorded in 2011 'no new wild cases'. Leprosy was 99% eradicated in the District when the change of policy moved treatment from NGO's to Government Primary Health Care Centres and now we see a resurgence of the disease. This change indicates that local community involvement through NGOs is more effective than 'centrally implemented' programmes. Care is a foundation of our Trust and so we stepped in early to offer treatment to HIV+ orphan children and widows. Two things have remained strong in our work - (i) the care of the poorest, especially women and those with leprosy or those disabled and (ii) we have always held the belief that although there is a place for charity, real development is about self sustainability - not give a fish but teach to fish. I see that the future is in our individual hands and our collective community attitude and using the democracy we have to bring about a more environmentally sustainable future. "Never doubt that a small group of dedicated people can change a small part of the world." New Hope India and New Hope in the UK and Future In Our Hands have supported poor women, in most cases 95% illiterate, to form self-managed groups with much improved savings and incomes. New Hope has greatly improved the literacy of these women and provided them with the ability to vote and thus engage in the process of national democracy. Vocational training is a key component of our education programme. Consuming less of the Earth's resources is essential in order to attain a reasonable level of equality across the world. It is incumbent on the affluent to live more simply. It is a complex issue and Mike Thomas gives us all a balanced but challenging thought in his book 'Countdown' . New Hope has and does survive financially by the generosity of donors. But we also survive better and with less because we recycle, buy as much locally as possible, resist maximum paper use and plant trees to rebalance our use. We believe in solar and wind power, we have installed waste and sewage bio-gas systems in 2012. Whatever we do we need to think holistically and grasp that we are part of the macro world and every act of conservation and every resistance to consumerism is likely to have both short and long term positive outcomes. Personal data: Married to Ruth with 2 children Ranjeet and Asha Awards: LINGURIA International Technology Development Prize by the Italian Government in 1991; Made a Paul Harris Fellow by Rotary International through their Australian branch in 2000; PRABHAKARJI MEMORIAL AWARD in 2000 by the Gandhi Memorial Leprosy Foundation, Wardha (where Mahatma Gandhi cared for leprosy affected persons). Publication: The Ring of Capital L