Leading human rights bodies support latest anti-discrimination call
Global Appeal 2008 to end stigma and discrimination against people affected by leprosy was launched at an event held at the Royal Society of Medicine in London on January 28. An initiative of Goodwill Ambassador Yohei Sasakawa, the appeal was endorsed by The Nippon Foundation and nine other international organizations with a focus on human rights. The text was read out by two young people from Tanzania who have been cured of the disease.
This was the third appeal to raise awareness of the problems facing people affected by leprosy, following similar appeals launched in New Delhi in January 2006 and in Manila one year later. "Diagnosed early and treated promptly, leprosy leaves no trace. Far harder to remove is the age-old stigma," the new appeal states. "Defining a person by his or her disease is unacceptable."
Over 100 invited guests listened as Sasakawa explained that repeated appeals were necessary because "the stigma attached to leprosy is deeprooted" and "is not easily eradicated." He added that people who develop leprosy are sometimes reluctant to seek treatment for fear of social ostracism, with the result that they develop irreversible disability. "This must be prevented," he said.
Sharing the stage with the goodwill ambassador were Barry Clarke, president of the board of International Save the Children Alliance, and Sir Edward Clay, a trustee of Leonard Cheshire Disability. Clarke said his board had no hesitation in supporting the appeal. "Our focus does not prevent us from recognizing calls for action from others who are also working for a better and fairer world," he said.
For his part, Sir Edward noted that some Leonard Cheshire facilities in Asia and Africa had their beginnings as homes for people with leprosy. "Leprosy is one of Cheshire's oldest diseases. Overcoming the stigma and discrimination that people with leprosy suffer is a major objective for us," he said.
|Best-selling novelist Victoria Hislop (right) with fellow author Tony Gould2, at the Global Appeal launch.|
Jose Ramirez, one of the signatories of the Manila appeal, then related his experiences as a person affected by leprosy in the United States. These included being taken by hearse from a hospital in his hometown in Texas to the Carville leprosy sanatorium in Louisiana, where he spent the next 3,476 days . "a short time compared to a lifetime of institutionalization for many others." Social worker, managing editor of The Star1, board member of the American Leprosy Missions and advocate for the human rights of people affected by leprosy, Ramirez said, "Stigma hurts," and he challenged the audience to educate others about "the stigma confronting my brothers and sisters throughout the world."
Reading the appeal were Sahira Hamadi, 11, and Ame Juma Muhamed, 12. At their side was Dr. Sira Mamboya, the physician who treated them in Zanzibar. As a doctor she was delighted they had been cured, she said, but the problem is that "the community does not understand" when people have been cured of leprosy . "it still calls them patients." Dr. Sira is now working with the Tanzania Leprosy Association to change social attitudes toward the disease and bring about an end to discrimination (see page 4).
The gathering also heard from Victoria Hislop, whose novel The Island featuring the former Greek leprosy colony of Spinalonga has sold nearly 1 million copies worldwide. During her research Hislop made a friend in Athens who was treated for leprosy in the 1960s. She quoted from an email she had received from him the night before. "He said to tell everyone you meet tomorrow at the event that although I am physically cured, every day of my life I fight the stigma."
Global Appeal 2008 was supported by the following organizations: Amnesty International, Disabled Peoples' International, HelpAge International, International Commission of Jurists, International Movement ATD Fourth World, International Save the Children Alliance, Leonard Cheshire Disability, Women's World Summit Foundation, World Council of Churches and The Nippon Foundation.