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“When a person is diagnosed with the illness of leprosy, oftentimes that person’s history is taken away because of banishment, whether it’s through laws or through practices of different countries.  There’s also the history that is taken away when our families feel that we’re no longer worthy of being a part of their family.  If you look at all of this collectively, the stigma throughout the world becomes a very powerful force. 

“When a person is diagnosed, there is a lot of pride, there is a lot of history, there is a lot of oneself that is taken away, but gradually we are regaining that, and I’m hoping that you will go ahead and focus, not so much on what we have lost, but on what we have gained and continue to gain.”

  -- Jose Ramirez, Jr., Coordinator, IDEA USA

The Oral History Project has undertaken a number of different activities in order to help ensure that the perspectives of individuals who have had leprosy are included in the history of leprosy throughout the world.  Individuals who have personally faced the challenges of leprosy have been an active part of this process, from helping to plan the project and develop the guidelines, to conducting interviews, to transcribing and translating interviews.  One unique aspect of the project has been to have individuals from the younger generation of people affected by leprosy interview members of the older generation. In addition, historians and other persons who have experience in conducting oral histories and university students have also been an integral part of this project.

I walked alone entering that soil marked by so many hidden lives. Almost reaching the end, I was met by the Sisters of Saint Vincent de Paul – the Vincentians. I was cold. I was embraced by human warmth with tea and a hot bath. The next day, I went to meet the people who had lived there for a long time. First to the residents’ ward. When they saw me they asked if I was a journalist and quickly said that they didn’t want any photos taken or to give any interviews.

“I am not a journalist” I replied. I am Zilda Borges, a member of IDEA – an organization of people affected by Hansen’s Disease. I came here just to give each one of you a hug and bring news of and greetings from a lot of people all over the world who have had Hansen´s Disease. A timid smile on a few faces, a wider smile on others and some even risked a hug. Very little was said during the first meeting, marked by embraces. I visited them at various times during the day, to help them at meal times and bring them around in the wheelchairs to visit each other.

It was necessary to build up a new way of relating to them. They were tired of being interviewed, said that they didn’t like reading the articles or seeing their photographs. They didn’t want any more of it. I spent eight days circulating between their lives and histories that were revealed a little more with each passing day. The majority of the residents have difficulty in coordinating their thoughts and spend most of the day in bed. Of the thirty residents I was able to talk with eight who were lucid and in good health during that time.

I saw a lot of sadness in their eyes, although they repeated several times that they were being treated very well and were in need of nothing. They told me about the olden times in the hospital: It was a different environment, we were one big family, there were games, trips, parties, cinema. We looked after the gardens, everything was nicer.

While they were describing the good old days, I thought of youth and that the leprosarium was indeed a big home. People participated in a way in the organization through domestic and agricultural work. Today, the setting is one of a hospital. Years are passed as a patient in an intern regime. Somewhat depersonalized.

Six people live in the family pavilion. They are couples or single people. They have their own houses, they receive groceries from the hospital. They follow their own routine, they wash, iron and cook. This environment is cheerful, warm. They receive their visitors, have their own phone, some have their own cars. They cultivate their own gardens, plants, fruit trees and flowers. They come and go as they please. But, Ana says: Yes, I can go where I want. I go to town to do my shopping. People know that I live here. No problem. When I need to give my address, which is the hospital address, I watch to see the reaction. I don’t notice any. When I go to get my hair cut in a different expensive salon I often think, will they serve me? As there are only a few residents in the family area, they form strong affectionate ties and when one of them dies, they feel the pain deeply. They know that they will have to stay in the pavilion as long as they are relatively healthy and can look after themselves. Their future will be within the hospital walls.

In a general way everyone asks themselves; what will happen to us when Madalena, the social worker, no longer works here in the hospital? They fear that the hospital administration will put them in an old peoples’ home, outside that environment. The future is uncertain and insecure.

They talk among themselves and literally say: We gave our lives to this hospital, they can bury us here. When they say giving their lives, they are talking about work. They see themselves as workers - cheap labour - that helped to build the hospital. They know that the hospital is changing. It is turning into a high technology private hospital and rehabilitation center. Now they are no longer part of things, a group of residents to be tolerated, until they die. The administration tried to fix them up in a home - they didn’t go because they knew that they had the right to stay in the hospital until the end of their days.