55th Session of UN Human Rights Commission: “Sub-Commission on the Promotion and Protection of Human Rights”

Geneva, Switzerland

I would like to thank Mr. Bertrand Ramcharan, Acting High Commissioner and other officers in charge for providing us today an opportunity to present our reports on the subject, “Leprosy and Human Rights,” to the people gathered here for the session of the Sub-Commission on the Promotion and Protection of Human Rights.

On July 2nd, I had an opportunity to meet with Mr. Ramcharan to discuss the issue of discrimination based upon prejudice people affected with leprosy continue to suffer. Mr. Ramcharan immediately agreed that this problem should be addressed from a human rights perspective, and kindly made arrangements for us to have this briefing meeting at this 55th session.

I have worked toward the elimination of leprosy for more than thirty years and have long thought that unless we resolve the issue of discrimination and social stigma, we will not be able to achieve the elimination of the disease from the surface of the globe. Therefore, it is my great pleasure to have this opportunity to make a plea to the world through my presentation at this meeting of the UN Human Rights Commission. I am sure that this will be a great step toward the elimination of discrimination against leprosy-
affected people worldwide.

To many, leprosy is a disease of a former age, and you may wonder why I bring it up as a problem for this contemporary age. It is an ancient disease, but it persists to this day. It consists of two aspects. First, it is a medical problem to be tackled. Second, and more important, is its social aspect; discrimination based on the prejudice that it generates.

Leprosy is a chronic bacterial disease that affects the skin and nerves. In the past, the disease would deform the limbs and disfigure the faces of sufferers. It seemed to strike haphazardly and selectively and once it struck, it ran an unstoppable course but was not fatal. As a result of these and other characteristics, a tremendous stigma became attached to leprosy and it became a symbol for that which was most feared. The people it touched were forced to live lingering lives that were worse than death.

We who are working for the elimination of the disease, together with WHO, have set elimination by the year 2005 as our target. We are putting all of our effort into this final push. Leprosy today can be cured within a year with a highly effective multi-drug therapy, known as MDT. From 1994 to 1999, my foundation has provided free worldwide distribution of MDT. Now Novartis, a pharmaceutical company is providing the drug all over the world through WHO free of charge.

According to WHO, elimination is defined as a prevalence of less than one person in ten thousand. Since 1985, thanks to the introduction of MDT, well over 100 countries have achieved this goal and about ten remain. Of these, India, Brazil, Nepal, Mozambique, Madagascar and Angola have the highest prevalence rates. In my capacity as WHO’s Special Ambassador for the Elimination of Leprosy, I am working with the governments of these remaining countries and with international NGOs to further strengthen their activities to achieve this goal as quickly and effectively as possible. For this goal, it is important to have political leaders and media people to understand the situation and commit themselves to the achievement of elimination. Such messages as “Leprosy is curable,” “Free treatment is available,” and “Discrimination has no Place” must be disseminated widely and effectively.

The goal of eliminating leprosy as a public health problem is clearly in sight. Now however, it is time to seriously consider how we are going to tackle the difficult social issue associated with leprosy; the discrimination that arises from prejudice. Let me give you a picture of how society has reacted to this disease so that you can see the relationship between leprosy and human rights.

History has revealed this relationship very clearly. Since the dawn of recorded history, there have been numerous references to leprosy. Accounts of it can be found in the Old and New Testaments, the ancient documents of China, and Indian classics from the Sixth Century B.C. There are also numerous works of art depicting people who had leprosy. All of these show that, from time immemorial, the individual with leprosy has been treated with all of the fear that dwells deep within the hearts of people; the fear toward that which is different. What is surprising is that we find this strong sense of exclusion around the world, regardless of country, religion, or culture. Everywhere, leprosy has been the most feared of diseases and its victims the ultimate outcasts of society, forced to lead lives that denied their very humanity.

From ancient times, and even by family members, sufferers of leprosy were branded as unclean people, as people who had committed transgressions in previous lives. They were ostracized from society and isolated. The Kalaupapa Sanitorium in the U.S.A., where Father Damien served in the middle of the 19th century, is one example where, out of a sense of crisis about the spread of leprosy, sufferers were sent away to a remote island. Robben Island of South Africa is known as the island where former president Nelson Mandela was exiled, but in fact, the entire island used to be a place to confine people with leprosy. Culion Island, Philippines was a place where nearly 50,000 leprosy patients were forcibly isolated. There are countless islands like that in the Aegean Sea, in Asia, and elsewhere, where sufferers lived, completely stripped of their rights as humans.

When people contracted leprosy, their families drove them out, and even stripped their names from them to protect the honor of the family. They thus became people who had no social existence. In this way, they were deprived of a voice with which to speak out against society. Even their families abandoned them. They lost all identity but the identification numbers forced on them. It is a shock to realize that until the latter half of the 1940s, sufferers confined in the National Leprosarium in the United States were even denied the right to vote.

When I visited a leprosy colony in Indonesia, I had a chance to meet a former patient. She was eighty-five years old, but had been living there since she was twelve. I asked, “Since your sickness is completely healed, why don’t you go back to your home and family?” She replied, “I cannot because it would only bring trouble and unhappiness to my family. I will be finishing my life here at the colony, quiet and alone.” The same kind of story can be found all over the world. Even after death, former patients are not allowed to go back to their families. Families deny the relationship and even refuse to accept their ashes.

Though sufferers have been allotted a fate in which their very families deny their existence, for the most part their plight has not been included on the list of human rights violations.

The countless tragedies associated with leprosy are a terrible and continuing legacy of man’s inhumanity to man. They are not something that should be buried in the distant past. Even today in the 21st century, we are faced by very real, ongoing challenges. I am specifically thinking of the following two issues:

First, leprosy continues to be a health problem, especially in the developing countries of Asia and Africa. Every year, six hundred thousand new individuals are diagnosed with leprosy. Since there is now an effective cure, it is a global responsibility to help provide treatment in a timely enough manner that deformity and disability do not occur. Then, we will be able to separate ourselves from the long history of discrimination and exclusion.

The second issue is that of just how seriously we all take the question of the dignity and social recognition of former patients. In my own country of Japan, there existed a law justifying the segregation of sufferers until seven years ago. Recently however, those who had been expelled from society sought compensation from the government for the loss of their rights and in May 2001, they won their case. The fact that these individuals won the court case and that the government admitted its mistake made headlines worldwide. In describing how he felt immediately after this victory, one of the plaintiffs said, “Human rights are like air. I feel that today is the first time that I can breathe freely.” This court decision was the first step in returning to former patients the dignity which is every human being’s right.

Back in the dark years of the 1920’s, when leprosy was yet incurable and greatly feared, a Japanese poet named Akashi Kaijin contracted the disease. He nevertheless upheld himself with dignity and pride, and left us the following words: “Unless I illuminate myself like a deep sea fish, nowhere will I find even a glimmer of light.” Now, more than ever, a place is needed for those who have been denied their existence by society, to illuminate themselves and raise their voices.

In response to this, for the first time in history, an international support network has been established, whose leadership is primarily made up of individuals who have personally faced the challenges of leprosy. Known as the International Association for Integration, Dignity and Economic Advancement, or IDEA, this organization provides opportunities for individuals to empower and support each other while promoting a positive image of leprosy that is based on ability, achievement and the wisdom that comes from experience. The organization may yet be small, but its message is immense. Since the message is a vital one, our foundation is providing its whole-hearted support to IDEA. Dr. Gopal, President of IDEA is with us today and so he will be telling you more about their activities after me.

A minute ago, I told the sad story of a former patient in Indonesia. Those who have been exiled because of leprosy often echo her feelings when they say, “We will only be able to go home when we leave the crematory chimney as smoke.”

The history of leprosy is the history of men, women, and families whose lives have been completely determined by this particular disease.

In the 21st century, science and technology are making tremendous strides. The danger that this presents us with is that, in the shadow of this extraordinary progress, human dignity and the rights of individuals may be overlooked. We need to fix our gaze on those who are being left behind and are suffering from unreasonable inhumanity. We need to focus on all moving forward together. Then, we will be able to say that humanity is truly progressing.

The treatment of sufferers of leprosy has been a negative legacy of the human community. We must learn from this mistake and, through education and the media, lead the public down a path of enlightenment to the truth about leprosy and the social issues it has raised. I strongly wish that the Human Rights Commission will take this issue up as a vital human rights issue and bring this to the attention of other relevant human rights agencies and to the wider public. This meeting may have been small, but I look to those of you here to turn it into a historical first step in bringing human rights to those affected by leprosy. For this I ask for your kind understanding and cooperation.