The Push to Eliminate Leprosy in India [2012/03/25]
The Push to Eliminate Leprosy in India
This article was published in the March 2012 issue of the Tama Zenshōen Sanitorium’s newsletter.
Tama Zenshōen Sanitorium is a 20-minute walk from Akitsu Station on the Seibu Ikebukuro Line in Tokyo. The facility is situated next to the National Hansen’s Disease Museum, and its spacious gardens are famous for their cherry blossoms
September 2011, I visited Chhattisgarh State in the eastern part of India and Andhra Pradesh State in the south. The purpose of my visit was twofold: to visit colonies for current and former leprosy patients and their families, and to call on state leaders to improve the lives and living conditions of these people.
At the end of 2005, India achieved the World Health Organization standard for the elimination of leprosy as a public health issue (less than one case per 10,000 persons), and as of March 2011 the rate had fallen further to 0.69 cases per 10,000 persons. Nevertheless, India is a large country with over 1.2 billion people, and each year approximately 126,000 new cases are still being diagnosed. At present, there are 850 colonies where people affected by the disease and their families reside. Prejudice against leprosy sufferers is extremely deep-rooted, and these individuals and their families face severe discrimination on a daily basis. I have visited India over 40 times, but continued lobbying of the relevant Indian authorities and officials is needed to improve the situation.
The morning after my arrival in India, I flew to Raipur in Chhattisgarh and from there drove four hours to Bilaspur. Chhattisgarh is one of the less developed Indian states. Most of its roads are unpaved and filled with potholes. Here and there, herds of cattle can be found walking in the middle of the road and even napping. The cows pay no mind to automobiles, even when they pass right alongside them. The full-body “massage” I got from this car ride and the scenes of cattle gave me the unmistakable feeling I was in India.
The area around Bramba Vihar Colony was waterlogged due to the heavy rains before my visit, and sanitary conditions were said to be poor. The colony was established in 1979 and is now home to 45 persons from 23 households. With support from the Leprosy Mission, a British organization that has been active in the state for over 110 years, residents have formed four self-help groups and set up joint bank accounts into which they regularly deposit their savings. While living conditions in the colony are far from good, it was clear that residents are well organized under their leader Chitra Singh. Introducing Mr. Singh to the president of the State Leprosy Rehabilitation Committee of Chhattisgarh, Mr. Ghasiram Bhoi, I encouraged the two to work together closely, stressing to them: “By combining your strengths, you can achieve more and your situation is certain to improve. I also pledged to them that I would do my best to help improve their living conditions. Mr. Singh reported that he had called on the government to improve drainage infrastructure to prevent flooding at the colony but had received no response. I encouraged him to work together with colonies dotted throughout the state to ensure that residents’ voices are heard.
Meeting former patients at Bramba Vihar Colony
Next I moved on to the city of Bilaspur to attend a meeting of 30 district officers for leprosy, which Chhattisgarh’s state leprosy officer, Dr. D. Bhatpahare, arranged to coincide with my visit. I heard from Dr. Bhatpahare that the number of registered leprosy patients had decreased sharply from 11 persons per 10,000 people in 2001 to 1.46 in 2006, and since then has risen slightly to remain at the current rate of around 2.0. In India, only two states, Chhattisgarh and Bihar, have over 1.0 cases per 10,000 people. Chhattisgarh has the highest rate of infection, with over 10 new cases a year per 100,000 persons in 10 of the state’s 18 districts. Various issues to resolve remain, such as reaching remote areas, reversing the decreased priority given to the leprosy program, and dealing with the lack of personnel. However, Dr. Bhatpahare was clearly committed to strengthening leprosy elimination strategies, focusing particularly on reconstructive surgery for deformities and support for former patients’ full participation in society. With an introduction from Dr. Bhatpahare, I also visited the home of Mr. Harilal Kumhar, a former patient who underwent reconstructive surgery on his hand and now makes a living as a potter. Although his small home is crowded with rows of his pottery, I was deeply impressed by his confident demeanor and happiness with his wife and three beautiful children. At the conference I told other delegates, “After seeing how Mr. Kumhar has been empowered, I have reaffirmed my belief that supporting rehabilitation of survivors is our key responsibility.”
With Mr. Kumhar and his family
After the conference, Mr. Bhoi and I met with the State Health Minister, Mr. Shri Amar Agrawal, on a day that happened to be his birthday. In terms of population, each Indian state is large enough to be considered a country. Further, as India is administered on a federal system, each state has ministers with great authority. The minister and with his daughter, a physician, promised to work with Mr. Bhoi, affirming their desire “to make Chhattisgarh a model for leprosy programs.”
The following day, September 23, we first drove for around one hour to visit Ashadeep Colony in Durg District, where the Sasakawa India Leprosy Foundation (SILF) is conducting a microfinance program. At the time of my visit, too, women were weaving rugs on looms bought with loans secured under the program. The rugs are woven from used saris, with five saris required to produce one rug. The women have even begun receiving orders from the government for rugs to be used in schools. Through these efforts, the women can earn around 4,500 rupees a month (approximately \9,000). One smiling participant told me, “I’ve even begun to save some money.” Other microfinance users have different occupations, such as making brooms or cleaning the streets, but all participants have honed money-making skills and are working to support themselves and their families. After school, the children also cheerfully helped with their parents’ work. Children from this colony have become doctors and engineers, and men from the colony have also gained enough social standing to marry women from outside the colony. Through their hard work, colony residents have dispelled stigmas related to leprosy and gained the respect of the general public. I have visited India over 40 times and seen over 100 colonies, but I feel this is the most successful colony. Mr. Vishwanath, the colony residents’ leader for the past few decades, was jailed 19 times for his activist struggle to improve life in the colony. Seeing Ashadeep’s success, reaffirmed my commitment to raising India’s other colonies to this level.
That same afternoon, NGOs involved in leprosy programs met for a workshop organized by the Leprosy Mission and the State Leprosy Rehabilitation Committee. The Leprosy Mission runs two hospitals and three vocational training institutes. It conducts reconstructive surgery and counseling, organizes self-help groups, and provides vocational training in fields such as computer use, weaving, and mechanics. Speaking at the workshop, Mr Bhoi said, “Along with continuing our advocacy efforts toward the government, we must also start our own income-generating enterprises.” Referring to the Ashadeep Colony I had visited that morning, I said the following: “The colony residents have the will and the capacity to work but they just lack opportunities. If they are given the chance, they will achieve great results. In this very state, they have shown that hard work can transform a stigma into respect.”
September 24 was the last day of my stay in Chhattisgarh. In the morning we took around a one-hour car trip to Santvinoda Leprosy Colony. This colony is located in a holy area where Chhattisgarh’s largest river, the Mahanadi, converges with two other large rivers. Many colony residents are engaged in begging, and the colony is unsanitary. In stark contrast to the colony of hard workers I had visited the previous day, the residents at Santvinoda Colony looked downcast and there appeared to be no organization or leadership. Eliminating begging from India’s leprosy colonies has been a goal for the second half of my life, but after visiting Santvinoda I felt the need to increase my efforts exponentially.
It was a busy day. I also visited the Jivodaya Dormitory for 400 schoolchildren affected by leprosy (from elementary school to high school), held a press conference on our activities in Chhattisgarh, met with other local officials, and was interviewed by a local newspaper. Although Chhattisgarh has the highest rate of infected persons in India, during this visit I was able to hold vigorous discussions with key persons, and I look forward to seeing continuing improvements in the living standards and in the lives of persons affected by leprosy in the state.
On September 25, I traveled by plane to Andhra Pradesh in the south of India. Upon arrival I immediately met with the press and set out on a three-hour car journey to Nizamabad. One region of Andhra Pradesh, Telengana, is campaigning for an independent state, and at the time of my visit, the movement’s organizers had called a general transport strike and demonstrations were going on in urban areas there. Given this situation, Nippon Foundation staff had considered calling off my visit to Nizamabad. However, the locally elected member of Parliament, Mr. Madhu Goud Yaskhi, guaranteed my safety, and I was able to carry out my visit accompanied by a military escort.
At Niazamabad’s Devanagar Colony, I received a big welcome from a diverse crowd made up of almost 200 residents, many reporters, and security personnel. After shaking hands with Mr. Yaskhi, I shook hands and individually greeted the people at the colony. Mr. Yaskhi did the same, while also expressing love and concern for them. The colony is home to 850 persons from 180 households. Most of the residents are engaged in agriculture or are self-employed, but around 10 percent are beggars. The youth run various types of retail shops with the support of their parents and have also set up various businesses with the help of microcredit from the Sasakawa India Leprosy Foundation. These businesses include hair salons, photo shops, laundries, small retail shops, and buffalo husbandry operations. After my talk, Mr. Yaskhi also spoke to the group. In his comments he said the following: “I will work for an increase in pensions, improved roads and infrastructure, and employment opportunities for youth. Also, I have visited Japan twice as part of my exchange programs with the Sasakawa Peace Foundation and developed a deep concern for leprosy programs in the course of my exchanges with Mr. Sasakawa. I will set up an association of parliamentarians to fight for the elimination of leprosy related discrimination.”
At Devanagar Colony
The next day Mr. Yaskhi invited me for breakfast at his home, and made a rousing speech at a seminar held that afternoon on the human rights of people affected by leprosy. The seminar addressed laws discriminating against people affected by leprosy in such areas as marriage, voting, and use of public facilities. Mr. Yaskhi announced: “I will set up a bipartisan committee on the issue and take it to the Supreme Court. We do not need money. The important thing is to have empathy with people affected by leprosy. I will do my best to bring smiles to their faces and to allow them to live with dignity and hope.”
There was also a meeting on the same day of 50 delegates, both men and women, from thirteen leprosy colonies. They reported on the difficult living conditions in their colonies. Andhra Pradesh has a total of 101 colonies, the most of all states in India. The colonies face a variety of issues in such areas as land and housing, roads and sanitation, pensions, and education; and the discussion got somewhat out of control. However, this sort of forum for exchanging views and information is extremely important, and the state is slowly but steadily becoming organized under the leadership of Mr. V. Narsappa. I urged participants to work together, saying: “If all 101 colonies stand together as a united force, you will make your voice heard. Stand together with your leader, Mr. Narsappa.” Mr. Narsappa is also a trustee of the National Forum, an Indian organization that I helped to establish, made up of and intended for people affected by leprosy. In a strong appeal to the assembled colony residents, he stressed, “We must not rely on others, but stand on our own feet.”
My next episode is somewhat off the subject of leprosy elimination. As we moved on after the meeting, our vehicle was caught up in the Telengana independence demonstrations. Completely surrounded by demonstrators, our vehicle was stuck. Army personnel, police, ambulances, and members of the media were all running to cover the demonstration. Following my motto, “You have to be there to understand,” I squeezed through the crowd to the front of the demonstration. My Nippon Foundation staff escort walked behind me to avoid being noticed as he recorded the scene with a video camera. I noticed, in the midst of the crowd, a parliamentary member who had shared breakfast at Mr. Yaskhi’s home that morning. Upon meeting, we shook hands, and he motioned for me to take a seat on the ground beside him. If I were to accept, I’d be caught on TV camera, the only Japanese around, sitting in at the head of the independence demonstration. The government would probably label me a dangerous foreigner and refuse me future entry to the country. Visiting areas impacted by leprosy around the world, I run into situations I could never experience in Japan. Each encounter leads me to a deeper understanding of the local context, and further fuels my philanthropic efforts.
The next day, my last in Andhra Pradesh, I met with the CEO of the Society for the Elimination of Rural Poverty, Budithi Rajsekhar; Andhra Pradesh Minister for Social Welfare, Pithani Satyanarayana; and Andhra Pradesh Human Rights Commission Acting Chairperson, Kakumanu Peda Peri Reddy.
At all of these meetings, I was accompanied by Mr. Narsappa and other people affected by leprosy, and I made sure there were ample opportunities for them to speak directly with the officials. If the colonies make separate demands to the government, it cannot respond to all of them. In contrast, if the statewide representative of colony residents can identify priority issues and make appropriate demands to the relevant authorities, it is easier for the government to respond. During this visit I encouraged both leprosy survivors and government officials to take this approach in their discussions.
Leprosy organizations in Andhra Pradesh boast not only the most progressive programs in the country but a large number of young active colony residents. On my last day in the state, I attended a meeting of 20 young colony residents−my first time to meet so many promising young residents together. Seeing their determination to help their parents, all of whom have or had leprosy, I hit upon the idea of setting up a youth section in the National Forum, as a nationwide organization of colony resident youth. If the educated youth unite and organize, they can make a great contribution to changing society.
On this trip, I saw a wide range of situations, from a colony where begging is the main source of income, to a colony where beaming residents work with pride and energy. Many excellent leaders of the leprosy survivors are fighting tirelessly to organize their communities. Although the situation differs from state to state, each state organization can learn from other states ways to develop strong leadership. By organizing together, the state organizations can pool their strength, improve public awareness of leprosy issues and of the National Forum, and improve the lives of all colony residents. Together with this country’s leprosy survivors, I too will continue to visit India and work toward a world free from leprosy discrimination and a society where people are not forced to beg but can work and live with dignity.