WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

INTERVIEW: End Discrimination Now

Professor Yozo Yokota discusses the issue of leprosy and human rights.

Japan's Yozo Yokota served as a member of the UN Sub-Commission on the Promotion and Protection of Human Rights from 2000 until its final session in June 2007. In 2003 he was asked to prepare a preliminary report on discrimination against persons affected by leprosy and their families. Subsequently he was appointed special rapporteur and commissioned to produce a comprehensive study on the topic. The report is now in its final stages, but in the meantime the sub-commission has been voted out of existence. With the fate of his report now hanging in the balance, we asked Professor Yokota for his views on leprosy as a human rights issue.

How much did you know about leprosy before you undertook this assignment
When I was very small my mother, who was a devout Christian, took me to Tama-Zenshoen [a leprosy sanatorium in a suburb of Tokyo]. I think she felt it was her duty to visit people in hospital and offer them encouragement. Through my mother's introduction I got to know about leprosy and the importance of treating people with the disease as human beings. But only much later did I become familiar with the extent of discrimination, as a result of the Kumamoto court case in Japan.*

When the sub-commission asked you to prepare a preliminary report on discrimination against people affected by leprosy, it was the first time it had considered the issue. How did this come about
In 2003, Mr. Sasakawa made a presentation over lunch in Geneva to members of the subcommission. Members were curious to know what the problem was, and were very surprised to learn of its scale and gravity. They were ready to take up the issue as soon as possible.

How big an issue is leprosy-based discrimination
First, it is a big issue in terms of the number of people affected, certainly in the order of millions; Mr. Sasakawa says tens of millions. The number is so great that we cannot put it aside. Second, the issue of discrimination against people affected by leprosy has elements in common with other discrimination issues, such as discrimination against people suffering from poverty, caste-based discrimination, and discrimination against minorities.
At the same time, discrimination against leprosy-affected people has certain distinctive features . the misunderstanding of the nature of the disease or the psychological, emotional responses toward it that are often described as stigma, and which result in discrimination. Interestingly, even people who are strongly motivated to do something about human rights abuses, and who feel that we should strive to eliminate discrimination, exhibit discriminatory attitudes toward people affected by leprosy mainly due to lack of knowledge about the disease.

Even people motivated to act against human rights abuses discriminate.

What explains this, do you think
Many people still think that leprosy is a disease easily transmitted through touching; that if you are affected, the treatment is not perfect and that deformities will follow. This image of leprosy has been around for centuries, and it persists today, even among well-educated people. So they discriminate, if only for the simple reason that they are afraid, or they want to protect their children. Unfortunately, this kind of misconception persists, and is different from other kinds of discrimination that I know of.

How does discrimination manifest itself
The most obvious instance which I personally saw was that in some cases hotels were not willing to allow leprosy-affected people to stay. Usually they had signed up to attend a conference on discrimination, and hotels were afraid that other patrons would be unhappy. This happened when we were organizing seminars in India and Brazil.

Have you found different attitudes toward leprosy on your travels
In some countries, once a family member is affected by leprosy, the family abandons that person. But in other countries, families come together and take care of them. Maybe in some societies the name of the family is more important, so they try to get rid of whoever has been affected before rumors start. In other societies, family unity still exists but is based on love and affection, not honor or reputation.

What stories stay with you in particular
One gentleman about my age told me that he had been born into a reasonably wealthy family living in a big house. But when he was young he came down with leprosy and was forcibly taken to hospital and kept there for decades. He had always dreamed of returning home, so when the law was changed and he was free to leave, he went back. When he knocked on the door, a window in the door opened and a man's face appeared. He suspected the man was his father. “I am your son,” he said. The window slid shut. He banged on the door, but there was no response. As he was telling me this, the man started to cry and couldn't continue. What suffering he had endured: his dream was to be reunited with his family, yet they rejected him completely.

In the course of your interviews, did you find that people affected by leprosy had specific demands
Many do not have big demands or requests. Mostly they want the United Nations to be aware of the problem, to be aware that they exist, and not to forget them. People affected by leprosy have been abandoned by family, friends and the community. They congregate with other affected persons, but as a group they feel isolated from the rest of society. So when somebody from the UN or an NGO comes to talk to them, they are very happy. My feeling is that they want to be treated as fellow human beings, with dignity.

What is the status of your study
I am putting the final touches to it. In my report I include principles and guidelines to end discrimination against leprosy-affected people. The major principles are that leprosy is not easily transmittable, it is a curable disease, many people have been cured in the past two decades, and in most countries it is no longer a public health problem. Nonetheless, discrimination continues to exist and this is a serious human rights violation that should be stopped immediately. In the guidelines, we give specific recommendations to governments, media organizations, schools and hospitals about what to do and what not to do. That's the main part of the report. I also recommend that the Human Rights Council continues to study the human rights implications of leprosy and also that UN bodies and agencies endeavor to address the issue of discrimination along the lines of the principles and guidelines included in this report, through education and public awareness campaigns.

Do you see some pressing concerns
In countries where patients were once forcibly hospitalized, the laws have since changed and sanatorium residents are free to leave. But that doesn't mean they are able to do so, nor should they be made to without their consent. Finding a place to live, and a way to make a living, are not easy for them. In a number of countries, governments are looking to sell or redevelop the land that sanatoriums stand on as urbanization encroaches and sanatorium populations dwindle.

What should humankind learn from the way people affected by leprosy have been treated
Discrimination, and in particular discrimination against a particular category of person, is the worst kind of human rights violation. Such categorizations are a creation of the human mind. They have nothing to do with the objective character of a person. Disease is a condition of being human. It could happen to anyone. Simply because some people have suffered from leprosy, they are put in a certain category and treated miserably. This is totally against the concept of human rights that should be enjoyed by all human beings, whatever their situation and wherever they are.

PROFILE: Yozo Yokota
Yozo Yokota is a Professor of Law in the Faculty of Law at Chuo University, Tokyo, and Special Adviser to the Rector of United Nations University. He gained his Doctorate in Law from the University of Tokyo in 1969. Until recently he served as a member of the UN Sub- Commission on the Promotion and Protection of Human Rights.

* In 2001, the Kumamoto District Court in western Japan ruled in favor of the plaintiffs in a lawsuit filed by residents of leprosy sanatoriums. The court found that the government had infringed on their human rights as provided under the Japanese Constitution through the policy of isolation it imposed under Japan's Leprosy Prevention Law. The law, introduced in 1907 and reinforced in 1953, was not repealed until 1996.