In 2010 the United Nations General Assembly adopted the Resolution on Elimination of Discrimination Against Persons Affected by Leprosy and Their Family Members. Two years later, the Nippon Foundation and the Center for Human Rights Education and Training, Japan, established the International Working Group to formulate a plan of action in line with the principles and guidelines adopted with the resolution and facilitate their implementation in specific countries. In August 2013 José Ramirez Jr., a US citizen affected by the disease and vocal advocate, visited Japan with his wife, Magdalena, to attend an International Working Group session. During their visit, we spoke with the couple about their battle against discrimination.
Recounting Carville for People around the World
The first medical treatment for leprosy, a disease known and feared since biblical times, was developed at Carville, a leprosarium in Louisiana State in the United States. The medication, called Promin, was tested on patients in 1941, and the dramatic results it produced opened a new era of hope for people around the world. Despite this remarkable breakthrough, which came to be known as the “miracle of Carville,” the residents of Carville, like their counterparts around the world, continued to be the target of discrimination. The new treatment had the power to eliminate the disease but not the prejudice associated with it.
José Ramirez Jr. was sent to Carville in 1968, at the age of 20, after his diagnosis with leprosy. At the institution he encountered a variety of discriminatory practices and, unable to remain silent, raised his voice against them. Even after leaving Carville, Ramirez chose not to hide his past but to travel around the world and recount his experiences at the world’s most famous leprosarium in the goal of promoting a correct understanding of the disease and rooting out discrimination.
Leprosy is also referred to as the “separating sickness” because many people diagnosed with the disease are forced to leave their home to live in a distant facility and are disowned by their family members. Ramirez was fortunate because his bonds with his family and with Magdalena, his fiancé at the time, remained strong despite his diagnosis and move to Carville. He married Magdalena when he was pronounced cured. His strong family ties were a source of courage and inspiration in his struggle.
Standing Up to Discrimination
Carville opened in 1894 in the state of Louisiana. The number of residents peaked at 450 in 1940, and the expansive grounds included a church and other facilities. At the time, it was believed that a leprosarium was a place from which one entered but never left, but this changed with the discovery of an effective treatment using Promin in 1941. Carville closed in 1999, and at present it houses a museum and serves as a residence to former patients, including one Japanese woman.
Ramirez remained at Carville for seven years, starting in 1968. During that time, he fought to eliminate discriminatory practices in the church, cafeteria, and other facilities, while also pushing the state university to admit him and others affected by leprosy. He continued his advocacy work even after his discharge from Carville. Today his efforts extend to raising consciousness about the use of the word “leper,” a term that embodies discriminatory attitudes. He, together with the Nippon Foundation, helped bring about a change in a scene which portrayed leprosy in a discriminatory light in the 2012 animated movie The Pirates! Band of Misfits; and he also made a public objection to Pope Francis’ use of the term leprosy when describing careerism among priests in July 2013.
INTERVIEWER After leaving Carville, you chose to confront discrimination and prejudice, rather than concealing your disease. Why did you decide to do that?
JOSÉ RAMIREZ JR. It wasn't easy, believe me, because at the hospital they didn't want to talk about it; they didn't want people to know and were not able to speak up themselves. The bureaucracy, the stigma, and the rules didn't allow them to do that. So I thought, “Why not be their voice?”
So I started to do advocacy work, and the very first time that I spoke in a large way was when I went to Carville for the centennial. They celebrated the 100th anniversary of the hospital in 1994, and I was invited to be one of the speakers. And I wrote out my speech that was supposed to be only for about five minutes long, but I ended up speaking for a half an hour, crying and crying while I spoke, because I was talking about some of the experiences I had. And that's when I decided that I would speak up more.
MAGDALENA RAMIREZ So I think that the fact that he actually lived the life in Carville made him more energetic to go and talk to others about this. To educate others about the disease, not to be embarrassed, to say leprosy—or Hansen's Disease—at a time when a lot of people did not know about the disease. The minute the disease was mentioned people used to say things like, “That's a disease of the Bible; we thought that didn't exist anymore.” It started small, within our own community, and now he's been writing about the issue in several newspapers in Houston in order to convey to the world why people still are afraid of leprosy. He asks the question: What's this stigma that's associated with the disease?
INTERVIEWER Is it difficult for people affected by leprosy to talk about their experiences?
MAGDALENA When José wrote his book, Squint: My Journey with Leprosy, he was already a professional, a social worker. And I think life just goes on; you go forward. And when he started to sit down and reflect on what had happened at Carville, it was very painful for him.
Now we have some friends affected by leprosy who have also written books, and we were very happy for them, because we said it's important to get the word out. When we found out at times that they did not publish the books they wrote we asked, “Why?” They often said something like, "Because our siblings do not want to be named in this book; it would hurt their feelings.” And we were very surprised, because they are about our age, and are very educated.
JOSÉ There was one article I wrote, and I was really proud of it, but I didn't publish it because several of the people that I named did not want to be mentioned, even under a fictional name. They did not want to do that, even after all these years, because they thought their family members or their neighbors might recognize who they were. And I still have that article. I wrote it ten years ago, and I haven't published it because they are still alive, and I have to respect what they have to say.
INTERVIEWER Were there times when you felt despondent about the future?
JOSÉ Yes, of course. There was a time when I did not understand Magdalena's mother's rejection of me. It took me a while to understand that it was her love that really was making her act in that fashion. So I had lost hope that we would be together, but my hope resurfaced. I also lost hope in God at one point.
Hopelessness can destroy you. That time I felt so hopeless and depressed that I even contemplated killing myself to escape the pain I was feeling. But you know what? The other patients could see something in my eyes. And they refused to let me go into my room. They stayed with me all night with the door open, because they had seen it before. Because there had been suicides on other occasions.
I believe that Hansen's Disease can destroy you physically, emotionally, and spiritually, and you have to be able to find a way to overcome that. Physically, I trusted the doctors to give me the right medications, no matter how long it took, because I was having so many reactions. Emotionally, I had reached rock bottom, but Magdalena was there, and my family was there; my other family at Carville was there, too.
I still felt that I carried the label of a “leper.” I carried that label, and it seemed like I couldn't get rid of it. I felt that people would look at me and judge me by that. So I had to understand that they needed to judge me as a husband, as a father, as a brother—not as someone affected by a disease.
MAGDALENA The thing about the disease is that you carry it with you. I mean, it's who you are. You can't hide it. So the only way to free yourself is to talk about it. He wasn't responsible for his disease. It happened. If you talk about it you can educate people about the fact that it’s not contagious. You educate people that know nothing about it; that's when the fear is lessened. And that was done through our own friends at church, in the neighborhood. Everybody in the neighborhood knows that he has Hansen's Disease, and they're not afraid to ask him questions. They just ask away.
INTERVIEWER Discrimination still exists in society. What kind of activities do you plan to undertake in the future?
JOSÉ What happens with a stigma is there are laws that prevent people from using public transportation, for example, but there's also what I call the “law of silence” or the “silent law.” This is the case where if somebody criticizes you and no one objects, then it becomes OK to continue criticizing you. The law of silence is a practice that allows bullying and stigmatizing individuals. So even though there is no piece of paper that says such behavior is acceptable, you still have people doing bad things in practice, like stigmatizing my brothers and sisters who have had the disease.
And the ones that we think should listen the most are children, because they are the ones who are most easily influenced by stereotypes. When you don't correct those stereotypes, it becomes a form of bullying against those with the disease.
INTERVIEWER What kind of results do you hope for from the proposal you are now formulating in the International Working Group to promote the implementation of the principles and guidelines (P&G) of the United Nations to end leprosy-related discrimination?
JOSÉ Next year we're hoping to take the proposal to the United Nations and have it approved by all member countries. We still need to fight for basic human rights, dignity, and respect, and do away with the stigma attached to leprosy.
Photographs by Hisayoshi Osawa except for the photograph at Kuryu Rakusenen.