Launching Ceremony for the ASEAN Secretariat and The Nippon Foundation Project on Leprosy and Human Dignity

Jakarta, Indonesia

Good morning and welcome.

I am delighted to announce the launch of the ASEC-TNF Project on Leprosy and Human Dignity. I do so together with Dr. Surin, the Secretary-General of ASEAN, the ASEAN Secretariat, and Mr. Adi Yosep, the project manager. Mr. Yosep also heads an organization of people affected by leprosy in Indonesia.

Many of you are probably wondering: ‘Why a project about leprosy?’ ‘What has leprosy got to do with us?’ Allow me to explain.

Leprosy is an infectious disease caused by a bacterium. It mainly affects the skin and peripheral nerves. Untreated, it can disfigure the face and limbs and cause permanent disability. References to leprosy are found in ancient texts of India, China and Egypt, dating back to the 6th Century B.C. and earlier. It is a very old disease.

For centuries, leprosy was greatly feared. The disease was incurable and the cause was unknown. It was often regarded as a curse, or God’s punishment. People infected with leprosy were cast out of their homes and villages. They were banished deep into the mountains or to remote islands. They endured unimaginable discrimination. In many countries, it became the policy to order their compulsory segregation.

About 100 years ago, the world’s biggest leprosy colony was established on the island of Culion in the Philippines. Up to 50,000 people were eventually sent there. There were similar leprosy settlements in Singapore and Malaysia under British rule. In Thailand, Vietnam and Myanmar, too, leprosaria were built in remote locations. Here in Indonesia, there are still 69 leprosy settlements today. The people who live there have been forced to leave their homes because of the stigma attached to the disease.

Throughout the world, in fact, there are countless islands that once served as leprosy colonies.

The discrimination touches not only people affected by leprosy, but extends to their children and other family members as well. In Japan, the US and elsewhere, there are many examples of people diagnosed with leprosy who changed their names to protect their families. In doing so, they give up their own identities. The history of leprosy is the history of a disease that came to define people’s lives – even the lives of other family members.

It wasn’t until the 1980s that an effective cure for leprosy was developed. Today, with early diagnosis and prompt treatment with multidrug therapy, patients are cured. No traces of the disease need remain.

The advent of MDT, together with a concerted effort by health authorities, NGOs and the World Health Organization, has had a huge impact. In the past twenty years, as many as 16 million people have been cured around the world. In most countries, including all the counties of ASEAN, leprosy is no longer a public health problem.

But while remarkable progress has been made in fighting the disease, it is proving hard to eliminate the stigma associated with it

Even today, there are still invisible walls in society that separate people with leprosy from the mainstream.

For 40 years, I have been involved with leprosy. I have visited dozens of countries and met with thousands of people affected by the disease. I can tell you that severe stigma still exists in society. Tens of thousands of people still suffer social discrimination that places obstacles in the way of education, employment, marriage and freedom of movement.

In India’s Orissa State, there is a law that disqualifies a person affected by leprosy from taking part in an election or holding office. In September 2008, The Supreme Court upheld this law in the case of a man who had been disqualified from holding a post because he once had had leprosy.

Here in Indonesia, a capacity-building workshop held at a South Sulawesi hotel for people affected by leprosy was forced to move elsewhere when guests complained. All of the delegates had been cured of leprosy. None posed a risk of infection. Yet other hotel guests objected to their presence, and so the hotel asked them to leave. This happened in 2007.

A rather encouraging sequel to this story is that the hotel later listened to protests by people affected by leprosy, and a sensitization workshop was held so that hotel managers could learn correct information about the disease.

To eliminate stigma requires tenacity and strategy. We need to involve international organizations, national governments, NGOs, health authorities, and the media. We need to create a wave of change in society.

The international community is finally starting to take an interest in this issue and do something about it. I began lobbying the UN to take up this problem in 2003. As a result, in June 2008, the UN Human Rights Council unanimously adopted a resolution to end stigma and discrimination against people affected by leprosy and their family members. It was the first time in history that governments debated leprosy as a human rights issue, and agreed to pass such a resolution. It was a history-making event.

The resolution was drafted by the Japanese government, and co-sponsored by 58 countries, including ASEAN members Indonesia, the Philippines and Thailand. As a next step, the Human Rights Council Advisory Committee will present principles and guidelines for ending discrimination to the Human Rights Council by this September.

Now that we have a strong tool with which to fight the stigma, we must put it use.

I believe that three approaches are particularly important.

The first is to appeal to a country’s leaders to end discrimination. We need to ask them to see if there are any discriminatory passages in existing legislation and have them take steps to reform them. In addition, we must ask them to implement awareness campaigns to root out social stigma.

The second approach involves ensuring that correct information about leprosy reaches everyone in society. This can be done at schools, via awareness campaigns and through the mass media.

The third approach involves ensuring that the voices of people affected by leprosy are heard. Around the world, we are now seeing the rise of influential self-help groups of people affected by leprosy actively involved in reclaiming their dignity.

These approaches all feature in the ASEC-TNF Project. It is a new region-wide movement to restore the dignity and realize the social reintegration of people affected by leprosy.

It will focus on appealing to leaders, the media and other sectors of society to promote correct understanding of leprosy through awareness campaigns.

It will also organize capacity-building workshops for people affected by leprosy, to enable them to make their voices heard, become financially independent and participate in the social mainstream.

In order for people affected by leprosy to be reintegrated into society, they need a sound economic base. I know that there are a number of companies represented here today. It is my hope that firms such as yours will provide greater opportunities for employment and social participation of people affected by leprosy.

I often talk about the fight against leprosy in terms of a motorcycle. The front wheel represents the medical fight; the back wheel represents the fight against stigma. Unless we give equal attention to both wheels and ensure that they are balanced, the motorcycle won’t run smoothly and will take longer to reach its destination: a leprosy-free world.

ASEAN is a future-oriented organization. It has already achieved much in terms of regional economic and political stability, security, and cultural exchange. Therefore, I would like to see ASEAN go on to create a society in which every member can dream of a bright future. Where there are no walls in the way of social participation. There are no other examples in history of a regional body taking up a human rights issue, so the ASEC-TNF Project has deep significance.

Political leaders, people affected by leprosy, the media, businesses and other organizations must work together to rid society of this age-old stigma. Then people affected by leprosy and their families can enjoy the rights that are inherently theirs – the same rights as every other human being.

May the day quickly come when ASEAN is completely free of leprosy and the discrimination it causes. I would like to solicit all of your help here today in playing your role in achieving this goal.

Thank you.