1st International Symposium on Leprosy and Human Rights

Rio de Janeiro, Brazil

A visit to a small village in South Korea, 45 years ago was the first time I met a person affected by Hansen’s disease. It was a time when isolation policies against people affected by Hansen’s disease were being enforced around the world and this village too was situated in a secluded area, completely cut off from the rest of the world. When I met the villagers, they were all very reserved and I sensed their sorrow and alienation.

As you are all aware, from ancient times, Hansen’s disease had been feared as an incurable disease that inflicts people as a curse or a punishment for sins committed in the past life. The disease was a subject of stigma and discrimination because some patients suffered skin discoloration and deformities on the face, hands and feet. Furthermore, since there were cases where more than one family member got infected, it was mistaken to be a hereditary disease, causing an entire family line to become subject to prejudice and discrimination. Once it was identified as an infectious disease, countries all over the world enforced isolation policies to prevent further infection and introduced laws and regulations to restrict employment, marriage, education and other activities against those affected by Hansen’s disease and their families.

These laws and policies were initially legislated as a public health measure. However segregating people affected by Hansen’s disease in such a way, caused the public’s prejudice and discrimination against them to escalate and gradually become a part of the social norm. As a result, firing an employee, divorcing a spouse or refusing to board a passenger on the bus on the grounds of Hansen’s disease became a common practice. And over time, the bricks of discrimination piled up to form a thick wall, shutting people affected by the disease out from society.

“The walls around this leprosarium are only 20cm thick, but they hold out an entire world.” Hearing such words from a person affected by Hansen’s disease was a painful reminder of the alienation that the people affected were subjected to.

For a long time, people affected by Hansen’s disease had suffered under the laws and institutions enforced by government. However, progress in Hansen’s disease research and development of effective treatment forced the validity of past control measures to be questioned. As a result, many countries moved to amend their isolation policies as well as other laws and institutions, which were deemed as discriminating against people with Hansen’s disease. But during my visits around the world, it became clear that not all discriminatory laws had been abolished and discriminatory institutions and customs still existed in many regions, taking away the rights of countless numbers of people affected by Hansen’s disease to live in dignity.

“I am not afraid of the disease itself. The prejudice and discrimination that accompanies it is far more frightening.” These words were spoken by one individual. But I also feel like it is the collective thoughts of the millions of people who over centuries were unable to get their voices heard.

This is why I set out to the Office of the United Nations High Commissioner for Human Rights to transmit the voices of those affected by Hansen’s disease to the world and to reclaim their dignity as human beings. When I explained about the fierce social discrimination that has tormented the affected people for centuries, it was decided that we would approach the international community to request for the elimination of discrimination against people affected by Hansen’s disease. This request received wide support and in December of 2010 the United Nations General Assembly unanimously passed a resolution on the “Elimination of discrimination against persons affected by leprosy and their family members,” along with accompanying principles and guidelines.

I believe that this resolution by the United Nations has made it possible to drill a hole through the thick wall of discrimination that has tormented the people affected by Hansen’s disease for such a long time.

The measures set out in the Principle and Guidelines are very precise and concrete, but I believe the following 3 actions are particularly important in tearing down the wall and recovering the dignity of those affected by Hansen’s disease.

The first action requests states to review whether there are any discriminatory laws or institutions still existing against people affected by Hansen’s disease and their families. If any are found, states are requested to either amend or abolish them immediately.

Even if the discriminatory laws are abolished from the various countries, discriminative customs and practices that have been deeply embedded in society for centuries will not disappear right away. Taking this to account, the second action requests states of various countries to carry out concrete measures to raise the public awareness and to foster respect for the rights and dignity of persons affected by Hansen’s disease and their family members. In order to implement these measures more effectively, the cooperation of media, NGOs and civil society will be very important.

Finally, we must not forget that many of the people affected by Hansen’s disease have lived in isolated villages or institutions. Their standard of living has been low, with very limited opportunity to get an education or find employment. In these circumstances, even if the discrimination against them diminished, it will not be easy for these individuals to become a part of society and live a normal life. This is why states are requested to provide them with the opportunity to get an education and find employment. For those living in poverty, states should provide them with various means so that they may improve their standard of living.

These 3 actions are being requested to the various states around the world. In the following 2 years, I will hold symposiums in the remaining 4 continents to push for implementation of these 3 actions. However, it is not just up to the states to follow through with these actions. I believe that NGOs, media and civil society can and must play an important role in tearing down this thick wall.

Such movement is already happening in many parts of the world. For example, just two days ago, in São Paolo, I announced a message to the world in a form of a Global Appeal with representatives of the World Medical Association. This year marked the 7th appeal since I started this initiative in 2006. The appeal aims to let as many people in the world know about the long and painful history of people affected by Hansen’s disease and to change society’s perception toward the disease. Over the years, global leaders from different sectors of society such as politics, religion, business and education have given us their support and lent us their voices.

Furthermore, many NGOs are implementing activities to support the social participation of people affected by the disease. Here in Brazil, MORHAN is an NGO where people affected by Hansen’s disease are taking central roles to advocate, raise awareness and provide support for those who are affected by the disease.

The helpline service to offer counseling for troubled callers as well as the media campaigns to raise public awareness have been effective in improving the situation for those affected by Hansen’s disease in Brazil.

At The Nippon Foundation, where I serve as chairman, we are also implementing various activities such as scholarships, vocational training, micro-financing and development of networks between people affected by Hansen’s disease. I am hoping that through these various initiatives, persons affected by Hansen’s disease will be able to gain a solid sense that they have regained their dignity as members of society.

“People affected by Hansen’s disease do not need charity, but the opportunity to show we are capable and, in doing so, perhaps change the world.”

As it is clear from these words, people affected by Hansen’s disease are wishing for the chance to test their potential. If their wishes could be answered, I believe that they will be able to start living a life with dignity.

I hope that this symposium will be a good opportunity for representatives of governments, NGOs, media and the civil society to rethink about the problems encircling Hansen’s disease, ask yourselves what you can do and start taking action.

Thank you for your attention.