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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

INTERVIEW: Emphasizing a 'Social Approach'

Shigeki Sakamoto lays out his ideas on anti-discrimination guidelines.

INTERVIEWEE:Prof. Shigeki Sakamoto

In June 2009, the UN Human Rights Council unanimously adopted a groundbreaking resolution on the elimination of discrimination against persons affected by leprosy. As a follow-up, the Human Rights Council Advisory Committee has been asked to draft a set of principles and guidelines by September 2009 for the Council's consideration. The task of compiling these falls to Shigeki Sakamoto, a professor of international law at Kobe University in Japan, president of the Japanese Association of International Human Rights Law and a member of the Human Rights Council Advisory Committee. The Goodwill Ambassador's Newsletter caught up with him one afternoon in late autumn at the National Sanatorium Tama Zenshoen on the outskirts of Tokyo, which he was visiting to learn more about the issues facing people affected by leprosy.

What is your task?
On January 15, 2009, there is to be a meeting in Geneva on leprosy sponsored by the Office of the UN High Commissioner for Human Rights (OHCHR). The following day, The Nippon Foundation is organizing a separate meeting of leprosy-related NGOs to get their opinions. Based on these, I shall be drawing up principles and guidelines for the elimination of discrimination against people affected by leprosy and their family members. I want to reflect what patients, people recovered from the disease and their families really think in these guidelines.

Have you had dealings with the leprosy issue in the past?
No, this is my first experience. Following the resolution on leprosy initiated by the Japanese government and unanimously adopted by the Human Rights Council, the Human Rights Council Advisory Committee was requested to look into the issue. At the inaugural meeting of the 18-member Advisory Committee in August, I was given the responsibility of researching the issue and putting together the principles and guidelines. Now I'm learning all I can about the subject.

From your perspective, what are the main issues?
There has been a focus up to now on the care of patients and people affected by the disease, but I think the focus should be rather more on their rights. The UN Convention on the Rights of Persons with Disabilities embodies this idea. In the past, the emphasis was on a medical approach to the issue of disability, but the convention recognized the need for a social approach to address the way people with disabilities have been excluded from society. That's the way I think about leprosy also. We have to adopt a social approach.

What are you hoping to achieve?
Patients and affected persons exist around the world. Discrimination toward them has yet to be eliminated. When we think about what is necessary in order to end such discrimination, legislation is one approach. But even if you have a law that bans discrimination, discriminative social customs will remain. So in the principles and guidelines I want to include measures that can be taken to eliminate this kind of discrimination in each country. These would include stressing the importance of human rights education, and addressing mistaken ideas such as that leprosy is incurable, or that it's highly contagious. This is necessary, so that discriminatory attitudes toward people affected by leprosy do not continue into the next generation. These are the kind of guidelines I hope to produce.

Realistically, what can you get out of just two days of meetings in January?
It's true that the hearings are short, but I am already collecting the voices and opinions of people affected by leprosy, so it's not just about those two days in Geneva. I'm gathering as much information as I can in advance, and will do my best to reflect all these viewpoints. Meanwhile, the OHCHR has been collecting information about [anti-discrimination] measures taken in individual countries. I will be drawing on all this information as I compile the guidelines.

You have a lot of work to do in a limited amount of time.
Fortunately, Professor Yozo Yokota [the Special Rapporteur on leprosy discrimination for the Sub-Commission on the Promotion and Protection of Human Rights] produced reports in the past, which I intend to use. So in that sense we are not starting from zero, which is a great help.

For the January 15 meeting, the OHCHR has asked you to include discussion of the broader issue of health and human rights.
Yes, there is also a requirement to address the issue of health and human rights, so I will be adding a new section to the principles and guidelines. There are many infectious diseases apart from leprosy, and some have questioned why leprosy should be singled out. Therefore, I want to draw up the principles and guidelines in a way that will benefit the human rights of people suffering from other diseases as well. I see this as a starting point.