Ensuring the Rights of the Older Generation of Persons Affected by Leprosy/Hansen’s Disease

Anwei Skinsnes Law, M.P.H.

International Coordinator, IDEA

Home and Family – these are universally regarded as the most important things in the life of an individual.  We can all ask ourselves, where would we be without our home and our family? 

The human spirit is a remarkable thing.  It has enabled millions of people around the world, to survive the tragedy of being separated from their families, simply because they had leprosy.  They survived by creating a new family made up of other individuals who had also been taken away from all they held dear.  They created communities like Kalaupapa in Hawaii and Lo Sheng in Taiwan. 

These places used to be very remote areas.  Now throughout the world, economic development has surrounded these places and seeks to erase them and their memory from  history. 

Our organization, IDEA, has been granted Special Consultative Status with the Economic and Social Council of the United Nations, which includes the U.N. Human Rights Commission.  IDEA’s leadership is primarily made up of people who have had leprosy themselves.  They have been chosen as experts by the United Nations to help guide decisions regarding the most basic rights of every human being, but particularly those individuals who have had leprosy.  In discussions on leprosy and human rights at the United Nations, IDEA has made the rights of the older generation of people affected by leprosy a priority. 

We must also consider an important right of society, especially of future generations.  That is the right to know their full history and this includes the most important history of people who have had leprosy.  This history shows the best, and the worst, of humanity.  It shows how the magnificence of the human spirit can shine through, even when a person loses everything.

IDEA recognizes Lo Sheng as a historical site of world significance.  We believe that the young people of Taiwan and other young people in the world will become better people if they are aware of this history and recognize that this is part of their history. 

People around the world continue to thank the residents of Lo Sheng for showing their remarkable belief in the power of justice to overcome every obstacle.  The people of Lo Sheng are challenging people here in Taiwan, and also throughout the world, to look deep inside ourselves – to look beyond our material needs.  They are reminding us of the importance of home and family by insisting on retaining the right to the home and family that they created for themselves when they were forcibly taken from their own families.  Equally important, they are standing up for future generations by reminding us that it is unacceptable to erase history in the name of “progress.”