Global Appeal 2011 Launch Ceremony ~To End Stigma and Discrimination against People Affected by Leprosy~

Beijing, China

“To many of us, worse than the disease itself is the prejudice that comes along with it.” These are words you will hear from people affected by leprosy in every country. This is their heartfelt lament.

Because of the way leprosy causes deformity, because the route of transmission is unknown, and because there was no cure, the disease was greatly feared. In many parts of the world it was regarded as God’s punishment, or as a hereditary illness.

On the basis of such mistaken notions, people with leprosy were forcibly driven from society. They were banished to islands such as Culion in the Philippines, Robben Island in South Africa or Molokai in Hawaii. They were sent to isolated villages such as those found in Sichuan and Yunnan provinces here in China. The world is dotted with such places, testament to how people affected by leprosy were the subject of discrimination.

In the 1980s, there was an important breakthrough in the treatment of leprosy with the introduction of multidrug therapy, or MDT. Thanks to MDT, there is now an effective cure. In the three decades since it was introduced, MDT has cured some 16 million people. There has been a dramatic fall in the annual number of new cases. Indeed, some people think that the disease is a thing of the past.

But leprosy is not a bygone issue. The disease is still with us, and so is the stigma. The discrimination against someone once stigmatized by leprosy is deep-rooted and does not easily go away. Because of this discrimination, there are still people who cannot return to their hometowns or rejoin their families; instead, they live in out-of-the way sanatoriums or self-settled colonies.
Because of this discrimination, they are prevented from doing the things that other people take for granted: going to school, forming friendships, finding work, marrying, and starting a family.

The discrimination reaches across generations. It affects the education, employment and marriage prospects of children whose parents have had leprosy. Social stigma is depriving whole families of their most basic human rights.

In every country I have been to, I have met people who chose to conceal the fact they had leprosy. They were afraid of what they would lose if colleagues and friends found out.

In India I know of a smart, dedicated public servant who was careful to hide the after-effects of the illness from her colleagues. One day, she told her best friend at work that she had been a leprosy patient. Word quickly spread through the office, and she found herself ostracized by all of her colleagues.

It pains me when I meet people who suffer the stigma of leprosy. I try and imagine their despair and suffering, although only someone who has been in that position can truly understand. Why, I ask myself, does such social stigma persist?

Perhaps it is because we have failed to recognize that the suffering of others is a matter for us too. Oblivious to their hurt, we have overlooked this issue.

In times past, China, as did Japan, chose to forcibly isolate people affected by leprosy. China relocated them to remote “recovery villages.” About 10 years ago, groups of Japanese and Chinese students began visiting some of these villages. They live in these villages, talk and eat with the residents, make repairs, install toilets, and do what they can to improve living conditions. For people living nearby, it comes as a shock to see the students walking hand-in-hand with people affected by leprosy. In time, they grow used to the idea, and begin to accept their neighbors from the recovery villages. In the recovery villages, residents grow in confidence. As for the students, the bond they develop with the villagers enriches their lives. The results are heartwarming on both sides. Little by little, this chain of transformation is spreading throughout society slowly, I believe.
I have been engaged in the fight against leprosy for the past 40 years, and I realize there are some positive changes taking place at the grassroots level regarding the issue of discrimination. These are the result of people-to-people contacts. I am encouraged by these developments and am delighted that this issue is now getting more attention. Yet significant obstacles remain to be overcome. Where leprosy is concerned, the issue of discrimination is very complex.

That is why a multifaceted approach is required – an approach that involves the cooperation of people in all sectors. The issue must be tackled in different ways.

In addition to activities in the field, I believe it is also important to approach the United Nations, and carry out initiatives such as this Global Appeal.
In December 2010, the UN General Assembly adopted a resolution endorsing principles and guidelines to end stigma and discrimination against persons affected by leprosy. The principles and guidelines state that no one should be discriminated against on the grounds of having or having had leprosy, and call on governments to abolish discriminatory legislation. This is a groundbreaking development. I thank all who have worked to make this historic achievement possible. The draft resolution, as well as its accompanying principles and guidelines, were co-sponsored by eighty-four countries, and unanimously adopted at the General Assembly. From now on, I hope to see every government abide by them and make differences in the lives of people affected by leprosy.

Concerning today’s Global Appeal, Global Appeal 2011 is the sixth such appeal to date. Past appeals have included those endorsed by business leaders, religious leaders and organizations concerned about human rights. They have drawn attention to the continued existence of deep-seated discrimination and the need to clear up misunderstandings about the disease.

I applaud members of the academic community here today who have endorsed the message of Global Appeal 2011. Through education, correct understanding and knowledge can be spread. Through education people become aware of others’ suffering. It can instill in us a sense that their pain is a matter for us too. Every effort must be made to resolve this issue, and from every standpoint. I appeal to you all for your continued involvement and support.

Discrimination is as old as human history. It remains deep-rooted in society. With your help, I believe we can make further progress. Let us work to build a society in which people affected by leprosy and their families can live in dignity as human beings. Thank you.