Global Appeal 2014 Launch Ceremony ~To End Stigma and Discrimination against People Affected by Leprosy~
I am excited to be here in Indonesia, together with the National Human Rights Institutions from around the world to launch the 9th Global Appeal. As you saw in the video shown earlier, leprosy is one of the world’s most misunderstood and stigmatizing diseases.
It is a sad fact that even today, when leprosy is completely curable, a massive wall of stigma and social discrimination still stands between society and those affected by the disease. In many parts of the world, the wall excludes entire families from their communities; limits their opportunities for education, employment, and marriage; and strips away their desires, their dreams, and their dignity.
In order to draw attention to this tenacious and universal problem, the Global Appeal was started in 2006. Previous appeals have been delivered by Noble Peace Prize Laureates, world leaders, as well as members of the World Medical Association and the International Bar Association. The annual appeals have the same basic objective; that is to restore the dignity and human rights of people affected by leprosy.
Concurrent to this initiative has been the approach to the United Nations. It started in 2003, with my appeal to the UN High Commissioner for Human Rights to take up the problems of leprosy as a violation of human rights. After seven years of effort, with the wholehearted support of various entities, the UN General Assembly in December 2010 unanimously adopted a resolution on the “Elimination of discrimination against persons affected by leprosy and their family members” in accordance with the principles and guidelines to eliminate leprosy-related discrimination.
The resolution recognizes that people affected by leprosy and their family members should be treated as individuals with dignity who are entitled to fundamental human rights and freedoms.
This was the first time for the international community to discuss this long-abandoned problem. It laid out clear guidelines to help states ensure the basic rights that had often been denied to many people affected by leprosy, such as access to education, voting rights, and full inclusion and participation in the community.
Despite this positive development, little has changed for those who are facing the stigma and social discrimination every day. Here in Indonesia, the massive wall between those affected by leprosy and the rest of society remains high. Many have lost their jobs or been cast out from their communities, making it impossible to carry out their basic social and economic activities.
Let’s take the story of PerMaTa, an organization founded by people affected by leprosy to advocate for the rights of those affected by the disease and their family members. In 2007, when PerMaTa was established as an NGO, it was a challenge to exercise even basic rights and freedoms, such as gathering in public facilities.
When the group tried to hold a meeting at a hotel, the management forced them to leave because there were complaints from other guests. I would like to add that similar incidences have occurred in Japan as well, where people affected by leprosy were hindered from accessing hotels and other public facilities. These occurrences are evidence that stigma and social discrimination against people affected by leprosy remain strong in many societies; and that around the world people affected by the disease are facing this tenacious problem.
With the hard work and determination of their members, PerMaTa’s initiatives are slowly changing attitudes and shifting perceptions in their communities, but transforming entire societies will require the efforts of many more people from many more sectors of society.
So, we are gathered here today, to announce the 9th Global Appeal; and this time together with the National Human Rights Institutions from around the world. Answering our call, they are taking a stand to appeal to the world about the serious human rights violations against people affected by leprosy.
As you are all aware, National Human Rights Institutions around the world play a critical role in protecting and promoting human rights. They are the very organizations that can investigate the various human rights abuses that people affected by leprosy and their families are facing and take appropriate measures, such as making recommendations to governments. At the same time, they can be strong partners of national stakeholders, and civil societies in fostering respect towards people affected by leprosy through education and various public campaigns.
It is encouraging to know that in many countries around the world the National Human Rights Institutions are already collaborating with NGOs and governments to engage in these activities. Here in Indonesia, the National Human Rights Commission has been collaborating with PerMaTa in various activities to raise public awareness about leprosy and the stigma and social discrimination it entails.
It is my hope to see many more such initiatives take off around the world. Change takes time and tremendous effort, but I am sure that if determined people get together, we can bring down the heavy wall that separate those affected by leprosy from society and realize a culture of human rights where there is no stigma and no discrimination toward leprosy.