The Goodwill Ambassador returns to the Indian state of Jharkhand to bring himself up to date on the lives of people affected by leprosy there.
|An ASHA in action at Murhu Community Health Center|
In April I traveled to Jharkhand. It was my third visit to this eastern Indian state, following trips there in 2003 and 2006. Together with representatives of people affected by leprosy, I met with state government officials to request that they strengthen anti-leprosy activities and take steps to improve the lives of people affected by the disease.
Jharkhand was formed from part of Bihar state in 2000. It has a population of around 27 million, with many tribes and hard-to-reach areas. When I first visited 10 years earlier, there were some 35,000 registered cases of leprosy, making for an extremely high prevalence rate (PR) of 13 per 10,000 people.
The rallying cry I used at the time seems to have been heeded: "Reach the unreached - detect patients and deliver medicine to those who aren't getting it." Ten years on, despite many ongoing challenges, the PR is now down to 0.7 per 10,000 and the number of registered cases has been reduced to 3,317.
There were plenty of restrictions in place at the time of my visit. On March 28, just a week before my arrival, 10 Maoists rebels had been killed in a deadly clash. In response, Maoists shot dead five policemen on April 4, called a two-day strike for April 6 and 7, and blew up railway tracks. This complicated my plans, but I was determined to accomplish as much as I could. I was joined by Mr. Vagavathali Narsappa, the chairman of National Forum India (NFI) - the organization of people affected by leprosy formed in 2006 - and Mr. Mohammad Jainuddin, NFI's state leader representing Jharkhand's 58 leprosy colonies.
On arrival at Ranchi airport on April 5 after an overnight stay in Delhi, I travelled for an hour by road to Khunti district. My destination was Murhu Community Health Center. There I met eight people affected by leprosy - including a 10-year-old girl and several people with disabilities of the hands and feet - and 10 female health workers, or ASHA (accredited social health activists.) Medical officers and ASHAs train people affected by leprosy on how to prevent further disabilities. Learning self-care is a key to reducing the possible economic or social consequences of leprosy and also to maintaining one's dignity.
After leaving the health center, I travelled into Ranchi. I accompanied Mr. Narsappa and Mr. Jainuddin to meetings with L. Khiangte, the principal secretary of the welfare department, and K. Vidyasagar, the principal secretary of the health department. The mandate of Mr. Khiangte's department covers Scheduled Tribes and Scheduled Castes only, although he said he would consider what could be done for people affected by leprosy. For his part, Mr. Vidyasagar noted that the number of cases of leprosy had come down significantly over the past decade and said he wanted to continue to give leprosy a high priority.
In the evening I attended a gathering of some dozen members of National Forum India's Jharkhand branch. They told me they had started their activities in the state in 2007, focusing on skills training and reducing the number of children who dropped out of school. A capacity-building workshop for youth was conducted in 2012, aiming to motivate young people to get involved in NFI activities. It was encouraging to see Mr Sailendra Prasad, a member of the State Committee, give his activity report in fluent English. He is employed in the administrative section of the local college and is the kind of role model that will motivate other young people to step into the social mainstream and succeed.
On April 6, Mr. Ram Sevak Sharma, Chief Secretary of Jharkhand, took time from his busy schedule to meet us. We discussed the situation of people living in leprosy colonies, where many do not have proper housing, basic infrastructure or land ownership, and must rely on begging. The current disability pension of Rs. 400 is not enough, and Mr. Jainuddin submitted a petition for the amount to be increased to Rs. 1,500. The chief secretary said he would look into the matter.
Based on the experience of Bihar, where the state government has finally announced the welcome news that it is raising the pension for people affected from Rs. 200 to Rs 1,800, I do not expect the pension in Jharkhand to rise overnight; however, it is important for the people to negotiate directly with the officials concerned and to persevere. I am prepared to come from Japan to assist their challenge as often as needed.
|Talking with residents of Indira Nagar colony|
Following a courtesy call on Justice Narayan Roy, the head of the State Human Rights Commission, I visited Indira Nagar colony, which has a population of 550. I was looking forward to seeing the tree I had planted there a decade earlier, but the colony has developed to such an extent that the tree was nowhere to be seen. While housing conditions had much improved, I noted here and there the presence of the wooden carts used by the severely disabled and the elderly when they go begging. Some things, it seemed, had not changed.
A sustainable livelihood generation project was started at this colony with the support of Sasakawa-India Leprosy Foundation (SILF), but this was cancelled due to a number of obstacles. I hope a new group of residents will consider taking up the challenge. When I asked the children if they liked studying, they all replied "Yes!" Among them was a girl who said she was going to study very hard to become a doctor.
|(Top photo) With nursing students Sikha Mahato, left, and Sonali Mahato; (above) view of Nirmala colony in Ranchi|
On April 7 I met Sonali Mahato and Sikha Mahato, recipients of SILF scholarships to study at a four-year nursing college. Now in their first year, they are practicing how to give injections and take blood pressure. "We never imagined we would go on to higher education," they told me, eyes shining. "We are so thankful to God and to everyone. In the future, we want to work for the elderly and the disabled in the colonies."
Following a press conference I visited Nirmala colony in Ranchi. It is home to 150 people and is located next to a dirty river below a trunk road. According to the residents, the huts they occupy used to suffer damage when the river flooded, but now there is a concrete wall to keep back the water, built with support from Sasakawa Memorial Health Foundation. What hasn't changed, however, is the stench from the garbage clogging the waterway, and the clouds of mosquitoes and flies. It is not a healthy environment.
While this visit did not produce immediate and visible results, I believe it was another step in the long process of improving the lives of people affected by leprosy and achieving a world in which they can live in dignity. I intend to be alongside them every step of the way.