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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

INDIA REPORT: A National Forum Wish List

Northern Region conference highlights need for jobs, amenities.

Health Minister Mishra (left photo) and Yohei Sasakawa address the Lucknow conference on March 1.

India's National Forum of people affected by leprosy recently held its Northern Region Conference in the historic city of Lucknow. The conference was attended by 300 people, including the Health Minister of host state Uttar Pradesh, Shri Anant Kumar Mishra, and Goodwill Ambassador Yohei Sasakawa.

The National Forum represents 12 million leprosy-affected people throughout India. Dr. P. K. Gopal, head of the National Forum and president of IDEA India also attended the conference, along with Uday Thakar of Hind Kusht Nivaran Sanghatana, and Dr. Rashmi Shukla, a consultant for the WHO in Uttar Pradesh.

The Lucknow conference was organized for the socio-economic empowerment of those affected by leprosy in the 10 states of North India, including Uttar Pradesh. In Uttar Pradesh alone, there are 59 self-settled leprosy colonies, many located on vacant government land.

"The living conditions in these centers are most unsatisfactory," said S.K. Dutta, president of the National Forum Northern Region, and G. Venu Gopal, the Northern Region general secretary, in a report to the conference participants.

"The leprosy affected persons have no sources of income and therefore live on charity donations from the public and rather depend on begging," they added and requested the government of Uttar Pradesh to provide basic civic amenities such as water, electricity, roads and toilets.

Among the other proposals they had for the state government were:

- Allot the colonies the land they are built on.

- Provide residents with housing under the late Shri Kanshi Ram Ji urban poor housing scheme.

- Grant people affected by leprosy and their dependents a monthly allowance of 1000 Rupees per person per month along the lines of the aid offered by the Delhi authorities.

- Treat people affected by leprosy that are incapable of earning a living on account of their mental or physical condition as People Below the Poverty Line (BPL).

- Supply electricity to families affected by leprosy at no cost or at subsidized rates.

- Organize the supply of ointments, bandages, and medicines, and microcellular rubber footwear, twice a year under the Disability Prevention and Medical Rehabilitation scheme.

- Provide free education and technical training for children of people affected by leprosy.

- Provide employment in government departments under the 1995 Persons with Disabilities Act for people affected by leprosy.

Health Minister Mishra responded positively, pledging to immediately discuss the requests with the state's chief minister.

Yohei Sasakawa also promised his continued support to the National Forum goals of integration and empowerment, and spoke of the need to eliminate leprosy completely as well as the social stigma it attracts. He said, "My dream is to see a leprosy-free world. By this I mean a world not only free from leprosy, but free from social discrimination."

But, he emphasized, members of the National Forum must make their voices heard, otherwise society won't change. He said: "You are the main actors in the fight! Be confident of what you can achieve. Grow strong and confront injustice. For your own sakes, and for your children's sakes, reclaim your dignity as human beings."

Sasakawa's final words to the National Forum participants were: "Today let us take another step toward realizing a leprosy-free world. We are embarked on a momentous journey, and one day we shall reach our destination."

Also present at the conference were staff of the Sasakawa-India Leprosy Foundation (SILF), including Executive Director Vineeta Shanker, who announced that SILF had approved its first 10 grants for microfinancing following a meeting of its selection committee on January 23. The grants, are for projects in three states . Madhya Pradesh, Uttarkhand and Tamil Nadu . including dairy farming, candle-making and retailing.

AUTHOR: Dr. David Tharp