Featuring events, interviews, archival films, and visits to college classrooms, museums, and historic places. As a big surprise to one of your grandfatherour shared his story late in his life. It was actually my husbands lthiest father a reporter who covers poverty and voting issues. It was because of this family experience. Was in it got started 1998, my fatherinlaw called us up one night out of the blue and said i have something i need to tell you. I have beenhing keeping inside for more than 60 years. When he was a teenage boy growing up in new york, he went to school one day and he came home and his father was gone and he never saw or spoke to his father again. He was not even quite sure what happened to them. He knew he had died a few years later but he did not know where he was taken and he did note his father had leprosy. It turned out that it was the hadic Health Service that taken him away and brought him. O carville it was a leprosarium that was run by the u. S. Government for almost 100 years in southern louisiana. So my father in law was told by his mother, this is back in the 1930s, dont ever tell anybody that your father had leprosy. Because the stigma, but we were talking about, was so great that it could destroy the family. So he didnt. He didnt tell anybody for more than 60 years. And here he was as an older man. He just realized that secrets or are something that people should not have and that he needed to unburden himself. Of course, we were like, oh my goodness. This is amazing. So we started doing research and discovered that, in fact, he had been taken to carville, louisiana. So you both started doing research. Actually, my sisterinlaw did a lot of the research, as well as my husband. We took my father in law down to visit, because it was actually still operating and there were still some patients there. We went and visited and i was just blown away by the institute. Its such an incredible place. And the stories are incredible. And i realized when i started doing some research, that it was, you know, matts family was only one of hundreds, if not thousands, that were torn a part because of this disease. Yeah, i mean, theres so much to so many of these stories. Like you say, it is about the stigma and the discrimination. Because we are living in this moment, i assume the book was already at press before coronavirus hit. Am i right . Yes, definitely. Yeah. Since we are living through this pandemic with a disease that we also, as a public, obviously were hearing more and more about it, and there are a lot of differences, of course. Im wondering if there were echoes of your reporting in the conversations that you had around covid. The quarantine example and misinformation, even discrimination, because sadly there is association with [inaudible] im sort of losing you a little bit, laura. Im sorry. Youre losing me . Thats ok, youre frozen for me. Did you hear my question . The last part i didnt. The last part i didnt. Im just wondering if you hear echoes of your own reporting in the conversation today around covid. With the topic of quarantining and confusion and misinformation. And even discrimination. Sadly, this connection with asians, which was something that was also at play. Definitely, a lot of these same echoes of whats happened with the way the United States responded to this disease of leprosy. Which really began more in the late 1800s. A lot of it was because of concern about the impact of germs. People were really ignorant at the time about exactly how dangerous leprosy was or wasnt. I think there is some similarity to today in that we dont know exactly how covid19 is spread. We have a lot of differences of opinion exactly how it should be treated and how people should respond to it. There was that same kind of disagreement about leprosy at the time. It made me realize, when i was writing the book, just how much misinformation and lack of information about diseases sort of allows people to respond to it in a way that they want to, that sort of fits their own prejudices. Because people had this fear of leprosy as being this terrible disease, they had all these images from the bible that it was a sign of satan. Yeah. They really looked down upon they really looked down upon people who had the disease. And the solution that they sought was lets isolate these people. Lets get them away from us as much as possible. Almost like they just wanted the problem to go away. So, in a sense, it was using disease to demonize people. To demonize people as others or less worthy of being treated humanely. And to use the disease as a weapon against others. Right. I know that you spent a lot of time down in carville. You very richly described its physical space. And lovely detail, how peaceful and beautiful you thought it was. Take us there and give us a sense of what it looks like, what it feels like, what it smells like, and a little bit about how it came to be. Ok let me just first start by , saying it began as a state institution. It was the louisiana leper home, which is what they call it. I put that in quotes because i try not to use the word leper if i dont have to. It started as a state institution in the late 1800s because louisiana, new orleans, they had quite a few people diagnosed with leprosy and there was a lot of public pressure on the state to do something about it and to create this institution. Initially, the state wanted to build a facility in new orleans where most of the patients were. There was good medical care and other medical facilities, but when they wanted to build a home, as soon as they picked out a site, all of the neighbors were up in arms and said no. We dont want any of those people anywhere near us. Not in my backyard. Right. They did not know what to do. So eventually they found this abandoned plantation about 70 miles from new orleans. The state decided that they could lease it and make this into the new louisiana leper home. Even then, they were really nervous about whats the neighbors in that area would think. So they snuck the patients from new orleans on a barge in the middle of the night up to this plantation. They even told the neighbors it was going to be in ostrich farm. [laughter] they brought these patients in. Let me just show you what it looked like. This is the kinds of accommodations that let me just go back to this, the kind of accommodations that they were willing to give people with leprosy. So this is a picture when they arrived. Those patients arrived in 1894 after coming up the river. This is what it looked like. I did not realize. So this is what they came to. I knew it had been remounted and remodeled and renovated. I did not realize this is what it looked like when they actually its actually beautiful now today if you went there today. Its a gorgeous plantation. It was in such bad shape that they actually house the patients in the back, in the former slave quarters, because they were actually in better shape than this plantation was. It was a sugar plantation, right . An old sugar plantation that had been basically abandoned after the civil war. So eventually it did start getting built up. The state put money in it. They started fixing it. They eventually, when they first went there, they could not get anybody to come there to care for the patients. Because nobody wanted to be associated. Its in the middle of nowhere. So you asked me to describe the place. It was 350 acres acre plantation. It is on the mississippi river. Of course, today it looks a lot different, but still there are big beautiful live oak trees that were there. Its just a big open flat area. Lots of birds. But it was really remote. I mean it was kind of in the middle of nowhere. And it was very mosquito infested at the time when these patients came. It was not a good place for people who were sick to be cared for. Yeah. As i say, they could not get anybody to come work there, and they finally recruited the daughters of charity. And they were the only ones who would do the job. Even they were kind of reluctant to come there. They actually did come, and started working there as nurses in 1896. Then it gradually started getting built up and fixed up, they started building some dorms, they fixed up the plantation and then at the same time around the turn of the century, they were being in being pressure on the u. S. Federal government to do something about leprosy patients. Because there were few high profile cases of patients, and somebody was diagnosed with leprosy, and everybody freaked out. Nobody knew what to do with them. And people were worried about germs, and they were worried about what the impact might be on the population. And there was a lot of anti immigrant sentiment at the time. And there was a belief that a lot of asian immigrants were bringing leprosy and other diseases into the country. That was part of it as well. So there was a big demand and pressure on the federal government to have a national leprosarium. And that became the u. S. Federal government facility in what was in 1921. So two things, going back to the sisters of charity and the daughters of charity, they turned out to be real angels, didnt they . I mean, in the end, there were some of the most sympathetic characters and lovely, caring loving people to these patients. , it was kind of amazing, and it was hot and cold, and then there was some patients, especially when the federal government took over, and they started bringing patients from all around the country there. And you are required, if they diagnosed with leprosy you had to go there. And many of them were there for decades. I want to get to this idea again, because you talk about so many different personal stories i think, but in general, i want you to step back and talk a little bit about this population and what the impact on this population was of going there. I mean some of the injustices , that they suffered. Being separated from their families, and children yanked from them, and just talking just talk in general about the injustice of all of the whole thing. So when somebody was brought there, in a sense they were treated more like inmates, then patients. You were brought there, against your will and some people did go there voluntarily, because they had nowhere else to go. They thought they would get care. But if they were brought their against their will, there was a big fence around. It was barbed wire. Yes barb wired tops. , we have and people not only lost their freedom, but many of them were disowned by their families. And they lost their livelihoods, if they had businesses or jobs. And as you mentioned, they lost the right to vote. Because in the state of louisiana, if you are resident and in an institution like this, you are not allowed to vote. They were seen as inmates. And the other thing, was many of them these patients, they were encouraged to take aliases when they went there. Because of the shame that it might bring upon their families. So when you came there, when you were first admitted, you know sister whatever, would say you should, you know, what kind of alias would you like, and you know that was just another sign of the dehumanization of those patients. They were treated like you are somebody to be feared. A lot of the patients were known by their case numbers, by then then they were by their real names. But the interesting thing, when the federal government took over, and said these patients were coming from all around the country, eventually they started, building a community for themselves. An incredible world inside of carville. Because it turned out, simultaneously like a prison and a haven. Because inside carville, the patients treated each other with lots of respect. And they knew that it was not that contagious. They could tell because nobody whoever worked there, ever contracted the disease. So it was a real haven from the outside world where they were not treated very well. So the patients built this Incredible Community for themselves. They started having sports teams, and bands, and plays, and because it was louisiana they had mardi gras parades, that was a big thing every year, and they had their own newspaper. Yeah, and i want to talk about that, and you have a pitch , dont you, of one of the clubs or sort of one of the social gatherings at a bar or something. They had like a bar in a cafe bar or cafe, didnt they . Yes a lot of social activity , and go ahead. Because the federal government didnt realize, and recognize quite well or soon, is that this was these peoples worlds. It was their life it was their world. And they in fact realize that, they had to have something to hope for and to live for and that they needed to have a community. Because this was not just a hospital. It was their world. So they did have a lot of you know theater, and they have , these facilities. They also had a little bar, and they had dances. And let me share this one picture with you. This is a picture, and this was later on, and we think was probably the late 1940s. Yes you can tell from the , dress. And you can see, this is like an incredible group, and were talking this is southern louisiana right, and look at that bar. Look you see black patients, you see white patients, you see asian americans. You see hispanic patients and it was incredibly their own world. And you dont see that anywhere else at the time. Especially in that area of the country. And it was because in many ways these patients were bound together by their shared disease and the view that they were discriminated so much by the outside world, because of their disease that it really brought all these people together. But they come from diverse backgrounds, and the carville , you know the patients were a , Cross Section of america. There are rich people, poor people, people highly educated, phds or people who were illiterate, and there were young people and children, and older people and a lot of young people, who in fact fell in love. So there was a lot. Well thats a story i want to , get to. And i think the storys, of the one story of betty and martin, i think its one that ties these themes together. Sort of the paradox is that you are talking about of carville and how it became this refuge for people, who suffered discrimination and stigma in the outside world. I think it was betty, who said sometimes easier just to leave the past behind. Was that betty parker or was that somebody else . I was struck by that quote. It couldve been her, it couldve been her. She came, and she was a teenager and she was from a neighborhood and, high society neighborhood. Yes she was a new orleans , debutante young woman, engaged , to be married and she just you know, life just looked like it was wonderful and perfect for her, yet she had some little rash, and i think it was actually on her thigh, and shes gone to a doctor and as unbeknownst to her, he diagnosed her as leprosy. It is leprosy, and told her parents. And the doctor recommended that she go to carville because she had a number of younger siblings, and they were worried that she might spread it to them. She went to carville, has this as this young woman and was terrified. They thought it was just going to be like six months at the time. Right and her parents said , well youll be back. , everybody was saying that, but of course she went there and it turned out to be much longer than six months, and she eventually will first she ended up having to break up with her fiancee will lay broken off their engagement, the. They separated men and women. And women are separated, and they did not know what to do that finally harry decided he was not getting any better at carville, and he wanted to escape. A lot of people did. There was something called the hole in the fence. This fence that was around, and there was one area over in a corner far away from the main gate and the patients had lifted up and people would escape their and sometimese just for the night, to go to a local bar and have a good time. Its not like people knew about this right. Although at some points if people stayed and were caught, they were brought back and put in a jail. So harry decides that he wants to leave and escape because he feels like he is not getting any better and he convinces betty to go with him. Parents convince her to go with him. And she decided, this is after several years there, and decided she is not really doing anything there, so they do escape and they go back to new orleans. They had aliases. Betty and harry were there airless is. And they came back and use their real names. For try to have a life themselves. And they do get married. But they find it very hard to live on the outside. They are always fearful that somebody is going to discover that they were at this leprosy place and they had leprosy. And eventually, harry starts getting ill, and so he says i think i need to go back. And betty says, well i will go with you. Im not going to leave you alone, and then go back to carville. In fact when they returned, they are both put in a carville jail, to serve their sentences. I knew he was, but i didnt if she was. I think the girl jail, wasnt like a room but close. They were not allowed to live together. There was a lot of this, a lot of people who fell in love at carville because this was their world and there were people there who understood them. Right, right, it was everything. I think it was betty parker who easier totimes it is leave the past behind. It is a very sweet story, the two of them. She was very much in love with him and they supported each other and they were like in the community. Very much so, yes. Sorry, goind ahead. No i was going to say and in , part of this community, we can talk about this is what they started doing, this kind of the second part of the story, is the patients ultimately decided to start fighting back. Im going to ask you about that in a second, i just want to remind those of you who are tuning in, that we are talking fessler, shes a correspondent who had just written an amazing book, called carvilles cure. Can you see it . What, is it backwards . Yeah i can see it. , so leprosy stigma and the fight for justice. Its an incredible story about this song leprosarium that was in louisiana called carville. And were talking about some of the personal stories. And some you got to know through archives, and newspaper articles and interviews with relatives , right . And there were three people, and we can talk about this in a second, and i dont want to lose the point that you referenced, but there were a few people that were survivors that you actually met right . Yes, you know as a around to the 1960s and we talk about this later but, we eventually had a cure for the disease it was found at carville, and patients started getting better, and people were eventually allowed to leave, but many decided they wanted to say there because it was their world. It was home. It became their family. I was in fact able to interview people who had lived there. They were patient there. And also we have when i started writing the book, this isnt , this isnt, sorry 2016, there were still about a dozen patients, from carville that were under federal care, and they were in a nursing home. And they were mostly older, and maybe they didnt have anywhere else to go at the time, so i had the good fortune of being able to talk to some of them before they died actually. And i think all but one have since passed away. That puts an amazing human face on this story. And i was so lucky because some of the patients like betty martin wrote memoirs and talked about their lives. That was so much wonderful informat