17th International Leprosy Congress
Thank you for this opportunity to address the 17th International Leprosy Congress. It is a pleasure to be among so many friends and partners in the fight against leprosy. We can be proud of the progress we have made together. At the same time, we know we must remain vigilant and work hard to sustain our achievements.
This year marks the 60th anniversary of the Universal Declaration of Human Rights. Therefore, it is fitting that I have been asked to speak on the topic of human rights and leprosy. Before coming to Hyderabad, I was in London for the launch of Global Appeal 2008. I initiated these appeals in 2006 to draw attention to persistent stigma against people affected by leprosy. World leaders, leaders among people affected by leprosy, and now leading human rights organizations have endorsed these appeals. I believe we must involve the non-leprosy community in our efforts to end discrimination.
Leprosy is now a curable disease. But the problems do not always end with the cure. Disability can require lifelong care and attention.
That is one kind of problem. Another is the scourge of stigma. Social stigma holds people back from realizing their potential, and the chance for social and economic advancement.
I am happy to see more and more affected persons take charge of their destinies. Many are with us today. But too often, society still marginalizes people affected by leprosy. It is a denial of their human rights.
So what can we do to eradicate stigma and discrimination in our continuing fight against leprosy? For my part, I started with repeated appeals to the UN High Commissioner for Human Rights. I asked that the matter be taken up as a human rights issue by the UN Human Rights Commission and its Sub-Commission. This led to a decision by the Sub-Commission to recommend measures for ending discrimination against people affected by leprosy and their families.
However, this was only a recommendation. I am now lobbying the UN Human Rights Council in hopes of a resolution. Fortunately, the Japanese government has recognized the importance of this issue, and intends to bring it before the UN Human Rights Council. It is my hope that many governments will be in agreement with the proposals of the Japanese government. Eventually, I would like to see a decision in the United Nations General Assembly that will result in guidelines with some degree of binding authority.
While I believe that efforts at this level will bring us closer to our goal, they won’t be enough. We need to change society’s attitude to leprosy from the grassroots up. We must work harder to counter the ignorance and superstition that still color the way many people regard the disease. Spreading correct information about leprosy using all available media is essential. Furthermore, we must rigorously confront any instance of the disease being sensationalized in books or films or media reports.
It is also necessary to condemn the use of stigmatizing terminology, such as the hateful word “leper” and its equivalents.
Involving people affected by leprosy in the decisions that affect their lives is essential. Affected persons must become the main actors in a social movement to end discrimination. In speaking out against discrimination, no voice resonates more powerfully than the voice of those who have experienced it first-hand. To encourage this process, people affected by leprosy need to be empowered.
This is aim of the new Sasakawa-India Leprosy Foundation. It works with Indian society to empower people affected by leprosy, helping to further their education and find employment. The tools it uses include skills training, micro-financing and scholarships. Given the right opportunity, people affected by leprosy themselves can develop the strength to change laws, as we have seen in Japan and are seeing in India.
I look forward to seeing an assembly member, a bureaucrat, a social leader, an industrialist emerge from among the ranks of people affected by leprosy. When that happens, they will serve as role models that will help the next generation develop even more quickly.
Here in India, today is a day of special significance. On this day, 60 years ago, India lost Mahatma Gandhi. Gandhi dreamed of an India without leprosy, and that dream is closer to being realized than at any time since Gandhi’s death. But we need ongoing political commitment, quality healthcare, and recognition that we are all of us responsible for doing something about discrimination.
There is a scene from The Motorcycle Diaries, the film about the South American revolutionary Che Guevara as a young man. He and a friend spend several weeks at a leprosarium deep in the Amazon jungle. One day, Guevara swims from the side of the Amazon where the doctors stay to the other side of the river where the patients live, cut off from the world. It is a powerful scene.
If mainstream society remains on the opposite bank, we will not solve the problem of prejudice. We must all swim across the river rather than remaining on the far side. And then we should be helping people affected by leprosy develop the skills to cross back with us.