Experts’ Meeting on the Resolution of Leprosy Problems
I am addressing you today in my capacity as the Japanese government’s goodwill ambassador for the human rights of persons affected by leprosy. As you know, the Japanese government proposed last June’s resolution at the Human Rights Council, calling for an end to discrimination against people affected by leprosy and their families.
I should like to begin, therefore, by thanking all the countries that supported this resolution. I am also grateful to the Office of the High Commissioner for Human Rights for making today’s session possible.
Leprosy is one of the oldest diseases known to humankind. References to it go back as far as the 6th century BC. Because of its disfiguring effects, and because there was no cure, it was feared as a curse. As God’s punishment. Those who got leprosy were cast out from their homes and villages. They were banished to isolated mountain areas and remote islands. They suffered discrimination that is hard to believe – discrimination that continues today.
With the advent of multidrug therapy in the 1980s, there is now an effective cure for leprosy. Diagnosed early and treated promptly, there is nothing to fear. Leprosy, we now know, is only a mildly communicable disease.
Yet social prejudice, and the discrimination that stems from it, remain deep-rooted.
For example, some countries still have regulations that prevent people with leprosy from holding office. Regulations that bar entry to those with the disease.
To date I have met thousands of people affected by leprosy. Each has his or her own story of suffering.
When I visited a leprosy hospital in Indonesia, I met a 21-year-old man who had been treated there. I said to him, “You are going back to live with you family, I presume.” In response, he suddenly burst into tears and said, “I have neither village nor family that will accept me. I’m all alone.”
In my own country, Japan, a resident of a leprosy sanatorium once remarked, “Only after I die and leave here as smoke from the crematorium chimney will I finally be able to go home.”
There are people alive today who changed their names when they entered a leprosy hospital or sanatorium, so as not to cause problems for their families. Many still use those names.
When a person falls ill, nothing is more important than the support of loved ones. But often when the disease is leprosy, he or she is abandoned, even by family. Why? Because the stigma of leprosy is such that family members fear being tainted by it. They fear being alienated from society. Around the world, there are people who have lost out on education, marriage and employment opportunities because they had a loved one with leprosy.
Thanks to multidrug therapy, 16 million people have been cured of leprosy worldwide. However, if we include family members, perhaps as many as 100 million people continue to face severe discrimination in their daily lives.
We will be hearing examples of this when people affected by leprosy take the podium in the third session.
What can be done to remove the deep-rooted social prejudice that causes this discrimination?
I believe there needs to be a mass movement of people, one that involves international organizations, governments, NGOs, health professionals, the media and people affected by leprosy themselves.
Within this movement, three approaches are particularly important.
One is to appeal to a country’s leaders to end discrimination. We must request that they check whether they have overlooked discriminatory elements in laws or policies, and to reform them where they exist.
Second is to empower people affected by leprosy to speak out themselves, because they speak from the heart. Around the world, this is happening. But it is not clear whether society is fully prepared to listen to their message.
Finally, in order to change public attitudes toward leprosy and people affected by it, we need to reach every corner of society with information about the disease, through education, awareness campaigns, media coverage and social programs.
This is all the more reason why today’s consultation is so important if we are to change policies, institutions and social attitudes. I hope that the guidelines produced include a concrete and clear-cut plan of action, and that governments respect and adhere to them.
My dream is to realize a leprosy-free world. Such a world will not merely have eradicated the disease in a medical sense, but also the prejudice and discrimination that stems from it. Only then can we say that leprosy truly has been vanquished.
In order to eradicate this most deep-seated and ancient prejudice, the cooperation of the human rights experts here today is essential.
With last June’s resolution we have finally reached the starting line to realizing a leprosy-free world. Let us work together closely to strengthen this light of hope. I ask you all to do your best so that we achieve this goal together.