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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

REPORT: Toward an Inclusive Society

Pune workshop seeks roadmap to a discrimination-free future.

Input from Ethiopia: ENAPAL's Leulseged Berhane (left) and Menberu Adane at the Pune workshop.

What is it about the goal of an inclusive society that has proved so elusive? A recent international workshop in Pune, India, sought to plot a way forward to that dreamed-of objective, buoyed by two key developments that target the obstacles in the way. The first was a UN Human Rights Council resolution that endorses principles and guidelines on the elimination of discrimination against people affected by leprosy. The second was a set of WHO guidelines on strengthening the participation of people affected by leprosy in leprosy services. The guidelines will be published later this year.

In the host country India as well, there had been a significant development: the November recommendations of a Parliamentary Petition Committee on integration and empowerment of persons affected by leprosy. The recommendations include amending discriminatory legislation, and were described by workshop chairman Dr. S.D. Gokhale as "a major step in the history of leprosy in India."

The workshop, titled "An Inclusive Society: Leprosy and Human Rights," brought together people affected by leprosy and their supporters from nine countries, including Colombia, Ethiopia, Indonesia and South Korea. The task was to evolve strategies and interventions that would enable the inclusion of people affected by leprosy into mainstream society, as well as to formulate a roadmap for the decade through 2010.

Artur Custodio of MORHAN, Brazil's Movement for the Reintegration of People Affected by Leprosy, spoke for everyone when he said, "We are here with the intention of changing the world for the better," adding, "We are also here because the world is changing."

There was particular interest in one of the potential game-changers, the recently adopted UN principles and guidelines. Following up on remarks by Goodwill Ambassdor Yohei Sasakawa, Dr. P.K. Gopal (President, National Forum, India), said the onus was on people affected by leprosy to demand that the government and civil society implement them. "The ball is in our court," he said. "If we encounter a violation in any area, we can cite the guidelines."

Jaime Molina Garzon

Reaching the Grassroots

Participants repeatedly stressed that new tools such as the principles and guidelines must be made both accessible and usable to those who stand most to benefit from them. "Everything about human rights happens at the national and state level; it doesn't reach the district or block level," said a participant from India's Chhattisgargh state. "How are we going to reach people who don't even know what human rights are?"

The important role that the media plays in spreading awareness and changing attitudes in a variety of countries was highlighted. For example, Ethiopia's ENAPAL has a 15-minute fortnightly radio program titled, "The Voice," which airs nationwide on a government-owned station. In Colombia, meanwhile, CORSOHANSEN's Jaime Molina Garzon writes and edits a bulletin on leprosy that appears once every three months as a newspaper supplement. "It has gone some way toward eliminating people's ignorance of Hansen's disease," he said.

Although Indian government officials had been invited to the workshop, none were represented. However, Ram Naik, former petroleum minister and influential supporter of people affected by leprosy, was present, and underscored his commitment in a rousing speech*. From overseas, both Brazil and Indonesia sent representatives from their national human rights councils.

While the workshop concluded with a number of recommendations for raising awareness, guaranteeing socio-economic security and building independence, what was clear is that the envisioned roadmap will need more specific signposting in order to bring the destination of an inclusive society closer.


It was Ram Naik who submitted the original petition on integration and empowerment of persons affected by leprosy to the Committee on Petitions on December 5, 2007.