Panelists from Brazil to Morocco share their thoughts at the Geneva symposium.
People who live with leprosy are still suffering from discrimination in my country. We find it difficult to find work, and people won’t go near us or touch us. Additionally, doctors are often scared of working with us. We have created a small association for people affected by leprosy and their families, but unfortunately we are not able to operate properly because we receive no help whatsoever. People are scared of working with our association.
People affected by leprosy do not want to be pitied; we want to be accepted and treated as human beings. There are still many people with leprosy hidden in remote areas of Indonesia. The more awareness there is of leprosy, the higher the chances of finding new cases. The government is doing a lot, but it can’t do everything. We can help.
The government pays more attention to discrimination in economically well-developed areas. But in some very rural leprosy villages, people are still living in very difficult circumstances. The government just provides some food and a little money, but it doesn’t take any actions to eliminate discrimination.
A major contributor to the spreading of leprosy stigma was the government, which brought people from all over the country to live in small towns, especially Agua de Dios and Contratación. People were not only isolated but imprisoned in inhuman conditions, hidden from society, surrounded by barbed wire, similar to a concentration camp.
IDEA Ghana has a grass-roots approach to ensure human rights. We have seen through our experience that the people themselves are the best participants in this process. This has always been the strength of IDEA and the network it develops. In Ghana, human rights have been achieved through an individualized, personalized approach. The government has not been involved.
We have been continually discriminated against because of the word “lepra.” It represents fear, a threat. My mother was a teacher and was left with no students because I, her daughter, had leprosy. Our mission to Pope Francis was to extinguish this word, to stop its use so that we can rescue our dignity and recover our identity that was once stripped from us.*
Children should know from an early age about this disease. They should understand what leprosy is. I feel strongly that if leprosy is taught to children as a subject at school, this will influence their behavior and help to reduce stigma.
“Some good things are happening in India. I suggest that our experience should stand as a model for other countries to learn from. For this, we should have a lot of communication between the people. That should be the future.”
— Dr. P.K. Gopal, IDEA India (Moderator)
“In the next five years, the 60 of us who are still alive who were institutionalized at the National Leprosarium in Carville,
Louisiana, may be too weak to carry on the role of advocates. I believe that the new generation of our children, their cousins, and others of their age will carry on.”
— Jose Ramirez, Jr., IDEA USA (Moderator)