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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Generating Awareness in India

The Goodwill Ambassador launches the 13th Global Appeal from New Delhi, and makes a field trip to Jharkhand.

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A young boy at work, harvesting scrap metal

INDIA (January 28 – February 4)

At the end of January I flew to Delhi for the launch of the 13th Global Appeal for the elimination of stigma and discrimination against persons affected by leprosy. This year, the appeal was endorsed by Disabled Peoples’ International (DPI), a cross-disability organization that is reaching out to the leprosy community.

The occasion presented the chance for a small delegation including persons affected by leprosy to call on President of India Ram Nath Kovind. I am grateful to Mr. Tarun Das, the chairman of Sasakawa-India Leprosy Foundation (S-ILF), for making this possible. During the meeting, which was also attended by Mr. Dinesh Trivedi, the chairman of the Forum of Parliamentarians for a Leprosy-Free India, the president noted that India has made great strides to reduce the burden of the disease, but still has a long way to go. “Advocacy is critical,” he said. “Let us join hands and work for a leprosy-free India.”

I also took part in the National Conference on Leprosy and Disability, organized by DPI, which followed the Global Appeal. I was able to see for myself the actions being taken to form bonds between the leprosy community and the mainstream disability movement to advance the cause of an inclusive society.

From Delhi I travelled to Jharkhand State to meet with top state officials and other stakeholders to support efforts by the Association of People Affected by Leprosy (APAL) to improve the living situation of residents of leprosy colonies in the state and to learn more about the activities being taken by the central and state governments.

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DPI's Javed Abidi (3rd from left) addresses the launch ceremony

On arrival in the state capital, Ranchi, I met in succession with Health Minister Ramchandra Chandravanshi, Chief Minister Raghubar Das and Social Welfare Minister Louis Marandi. Accompanying me were national and state representatives from APAL as well as Dr. Anil Kumar, who is in charge of India’s National Leprosy Eradication Programme.

APAL had drawn up a series of requests to the state government, which they presented to the ministers in the form of a petition. They backed this up with the results of a survey they had conducted of leprosy colonies in the state, giving the name, age and sex of every resident.*

Signed by APAL’s state representative, Md Jainuddin, and its vice president, G. Venugopal, the petition called for the creation of an inter-departmental coordination committee “to solve issues related to us on a single table.”

At each of the three meetings, the response from the state government was positive, with the health minister agreeing to attend a stakeholders’ meeting later the same day in a show of support.

During my stay in Jharkhand I also visited several self-settled colonies in the state to see for myself the conditions in which persons affected are living and hear their hopes and concerns.

The first colony I visited was in the town of Ramgarh. It consisted of 56 households and had a population of 350, including 40 leprosy-affected persons. They are concerned about the future because they have no title to the land and worry what will happen to them if the area is redeveloped in connection with a project involving the nearby railway.

While few of the residents beg for a living, some I saw working should have been at school. One of the images that stays with me is of two young boys at work harvesting metal components from scrap, sitting in clouds of dust thrown up by their hammers.

From this colony I went to visit a school where students have received awareness training in leprosy as part of the Sparsh campaign (see sidebar), which I followed by a visit to a village. Next I called at a health center where I met with members of a self-care group and a dozen Accredited Social Health Activists (ASHA), who are so important to new-case detection efforts at the grassroots.

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Md. Jainuddin addresses residents of Nirmala colony
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A women’s group at the Nirmal Gram complex

Next came a brief visit to Nirmala colony, a riverside colony that I called at on my last visit to Jharkhand in 2013. It had been subjected to flooding in the past but a wall has since been built to prevent a recurrence. In any event, the 230 residents are to be relocated to another colony where they will be provided with better housing as part of the steps Jharkhand is taking to improve the living conditions of persons affected in the state.

The colony they are moving to was my next destination: Indira Nagar. It was already dark by the time I arrived, but Mr. Jainuddin and I were able to report on our meetings with state leaders and convey the news that efforts were under way to see that colony residents can access their benefits and entitlements.

On my last full day in Jharkhand I traveled to Bokaro (known as “Steel City”) to visit the three colonies that make up the Nirmal Gram leprosy colony complex. It was a tremendous occasion, with a marching band greeting me at the entrance and speeches and dancing once I was inside.

I was impressed at the number of women’s self-help groups that had been formed, with their representatives telling me that they wanted to generate funds for their children’s education and make a better life for their families. I was similarly struck by the enthusiasm of the youth group leaders that I met, who described the skills training they had undergone or hoped to receive, and their dreams and ambitions.

After the presentations and performances, I was taken on a tour of the colony complex. The three colonies have received support from S-ILF and are well-maintained. I was able to see a number of livelihood enterprises that had been started with the assistance of S-ILF, including a piggery and a poultry business.

As I walked around the complex, I recalled something the youth leaders had said earlier, which was that they would like to see the word “leprosy” removed from the name of every colony. I very much welcome this attitude coming from a new generation. It is the right direction to be moving in to further reduce stigma and promote social integration.

FOOTNOTE

* The survey listed 56 colonies with a total population of 7,229 of whom 2,067 are persons affected by leprosy.