Stakeholders discuss principles and guidelines at OHCHR consultation in Geneva.
The UN Human Rights Council's unanimous adoption last June of Resolution 8/13 on the elimination of discrimination against persons affected by leprosy and their family members was a historic development. Realistically, however, much has to happen if this goal is to be realized.
As a next step, Professor Shigeki Sakamoto, a member of the Human Rights Council Advisory Committee, is now drafting principles and guidelines on ending discrimination, which are to be presented to the Council by September 2009.
To assist him in this task, the Office of the High Commissioner for Human Rights organized a one day open-ended consultation in Geneva on January 15 that brought together representatives of governments, leprosy-related NGOs, people affected by the disease and experts in other fields, including HIV/AIDS. To supplement this official consultation, The Nippon Foundation hosted a second day of informal discussions on January 16 to allow more time for the participants, especially people affected by leprosy, to make their voices heard.
About 70 people attended the January 15 program, which was split into three sessions: the principle of non-discrimination in international law; health-related discrimination and human rights; and discrimination against persons affected by leprosy and their families. Among the issues raised were what actions can be taken to fight discrimination using existing laws and conventions, and what can be learned from other diseases that attract stigma.
Stefan Tromel (International Disability Alliance) made a strong case for using the new Convention on the Rights of Persons with Disabilities as a tool for achieving the goals of people affected by leprosy. With its broad definition of disability, and its insistence that persons with all disabilities have rights and fundamental freedoms, he suggested it covered all the situations raised at the consultation.
In outlining the steps that have been taken to combat stigma in HIV/AIDS, Susan Timberlake (UNAIDS) stressed the importance of the engagement and participation of those living with the disease. "This has been one of the driving forces that have kept states on their toes," she said." Nothing about us, without us."
Not all participants agreed that the debate on leprosy and human rights should be taking place within the parameters of health-related discrimination. Speaking from the floor, Anwei Law (IDEA) said,"When you look at the history of leprosy, this discrimination goes way beyond health."
This was borne out in the presentations from leprosy-affected persons. They included Valdenora da Cruz Rodriguez (MORHAN) and Leulseged Berhane Asres (ENALAP), who described, respectively, the depth of discrimination people affected by leprosy have endured in Brazil and Ethiopia.
Dr. Wim van Brakel (KIT) suggested a twin-track approach was necessary in combating stigma. There is a lot to be gained from a common approach with people who face discrimination due to other diseases, he said. On the other hand, there are some specific issues with regard to leprosy, related to culture and religion, that require special attention. "We need to give leprosy, and leprosy-affected persons, the focus they are due," he said.
For his part, Professor Sakamoto assured those present that he would keep in mind the distinctiveness of leprosy, and the long history of discrimination, when compiling the guidelines. This is also the position of the Japanese government, which proposed the original HRC resolution.
The next day, Professor Sakamoto received further advice as participants in the informal consultation split into groups and brainstormed on what form the guidelines should take and what they should include. Among the suggestions: although the guidelines relate to leprosy, they should be couched in terms of the universality of rights; they should promote affirmative action; they should call for punitive action against those who discriminate; they should promote opportunities for people affected by leprosy to be included in the decision making; and they should be aimed not just at governments but others, too, especially the media.
Thanking everyone for their input, Professor Sakamoto said: "The principles and guidelines may not satisfy everyone, but your frank comments have made my job easier."
We have been disregarded and undermined for generations, even by those whom we call our own relatives and friends, because of the superficial scar of the disease called leprosy.
- Leulseged Berhane, Chairman, ENALAP
Discrimination in Brazil is largely due to lack of education of the people about leprosy. This ignorance includes patients themselves and medical personnel.
- Valdenora da Cruz Rodriguez (MORHAN)
Those of us working in leprosy should take very seriously the opportunity to make alliances with other marginalized groups and work together to ensure rights are upheld for everybody.
- Douglas Soutar, General Secretary, ILEP
This issue should not be linked to a right to health. It goes beyond that. It is a deep - rooted, deep - seated prejudice in the history of mankind that we need to deal with separately from other diseases.
- Minister Akio Isomata, Permanent Mission of Japan to UN in Geneva