One of the issues to emerge during the workshop is the separation of children from parents who had leprosy. These children were not sick, but they were separated from their parents and from society and their lives were severely damaged. How can we attach the preservation of leprosy history to the struggle for human rights? How can we make this linkage now?
I was born in a hospital-colony. Many people now talk about the historic preservation of this hospital. But to preserve history, we first need to know who separated me from my parents. Did they have the right to do that? Did they have the right to put us in the colony? For me, the most fundamental thing is the history of the people inside the colonies. The history of leprosy is not the history of a disease. It's the history of human beings and of human rights.
The museum we plan for Rio de Janeiro will be one built out of the struggle of the social movement and at the initiative of the social movement. It will be very much a project linked with the community and undertaken by listening to the community-to the people who have, or have had, leprosy. As such, it is also a political project aimed at public policy and at the preservation of this story.
|Victorino Mapa Manalo|
We need to make the history of leprosy understandable to the wider public. Ultimately, it is really about the ongoing occurrence of prejudice. The history of leprosy is very much the history of prejudice-and prejudice has killed more people than disease has. Prejudice occurs everywhere and takes many different forms. The fight against it must be understood all over the world and an understanding of the history of leprosy has a lot to contribute to this. In the end, prejudice is always the biggest problem we need to face.
We all agree that we want to preserve the past for two fundamental reasons. One, as a source of our identity-who we are, how we have evolved over time and what we have become. And two, as a matter of justice, because we recognize that wrong-doing was done and inequities created that favored certain groups or sectors in society. By remembering the past we can redress these grievances. We cannot change the past, but we can change the consciousness of people in the present, especially the young, on how they understand the past.
We want to arrive at a common understanding on how we can preserve the history of leprosy, representing the different views of people affected by the disease, the families of those affected, the medical professions, governments and society in general. We would like to arrive at a shared view in order to form a loose international network of leprosy museums and archives whose individual histories complement each other and make a unique contribution to the history of leprosy.