Transcripts For CSPAN3 Leprosy Treatment Stigma 20240711

Hosted the program and provided the video. Interviewing ms. Fessler is Laura Zeigler Community Reporter and producer with kcur radio in kansas city. Director of marketing at the Kansas City Public Library. My job, take care of housekeeping items before i hand it over to the two women smarter and more capable than i am. Any questions put them in the comments q a or chat box. If you hope to purchase the book, i hope you will, available through most major retailers and the Kansas City Public Library refer you are to bookshop. Org. Find any book and support authors across the country. With that out of the way, lets get started. Youll probably recognize voices of both of ourest go esest gues tonight. Host, Laura Zeigler, with npr washington, d. C. And covering the midwest and currently producer and commune engagement reporter at kansas citys npr and kcur. Laura, thank you for joining us tonight. Youre welcome, and good to be here. And jumping in now, i guess. [ laughter ] im delighted to be here, and introduce to you pam fessler, awardwinning journalist at npr, and shes covered poverty and election issues, voters issues for many years. Now in the tradition of npr journalists who you recognize as excellent storytellers, podcasts and online, she has proven the ability to translate that ability to tell stories on the radio, to the platform of the printed word and, of course in a book. Her new book is called carvilles cure leprosy, stigma and the fight for justice. Good to have you here. Thanks, laura. Appreciate it. Not mentioned when i first started at npr 27 years ago i was midwest editor and one of the people i edited was Laura Zeigler. Best editor i ever had. Best reporter. Anyway, again, just so much fun to have you here and such a fascinating book. Leprosy is a topic with dont hear much about, dont know much about, but i think its probably safe to say that for many of us, it lurks in or consciousness and fortunately connotation because of everyday use. World, i bet its not encountered often in a medical context. I dont know but i think its probably rare. I know you talk about not very many cases. So feels the whole topic is kind of scary, exotic and unknown. I want to start the discussion there. You found to your surprise one of the most recent references to the word leper was in an npr interview. And good notes. Is that where it was . I read it cover to cover. You can disappointed making the point we dont really use the word lepers anymore, and for good reason. It really kinds to me gets to the heart of what, a lot of what the story is about. The myths, stigma, discrimination and injustice. Right . And exactly. No. Initially i was going to call the book stigma. I believe thats what its really about. That the word leper or lepro leprosy has so many connotations. You point out we use to today to talk about things to be despised. Somebody treated like a leper. And theres so much that is weighing on these words that what, in fact, the people who have this disease, had the disease or still have the disease. Their many, many cases actually around the world, they suffer almost more from the stigma and the word and what it means than they do from the disease itself. And its actually, you know, the main focus of the book in a lot of ways. Fighting gets stigma. Because yes. Very early on in the book, i say, its actually one of the least contagious diseases in the world. Uhhuh. And 95 of the human race cant even get it. And the 5 who can get it can only get it with longterm sustained contact. Not because somebody sneezed on you or Something Like covid19. Its just very hard to get, but its because of this stigma. You know . The centuriesold yeah, thats fascinating. I want to back up for just a second. Theres a personal story behind this story. You have a personal connection, a family secret that came as a big surprise to one of your relatives late your grandfather shared his secret late in his life to well, it was actually my husbands father, and so your husbands father. And his grandfather . It was his reporter who covers, you know, poverty and voting issues, and as laura points out, it was because of this family experience, and the way it got started was in 1998, my fatherinlaw just called us up one night out of the blue and he said, i have something i need to tell you. I have something that i have been keeping inside and he came home and his father was gone. And he never saw or spoke to his father again, and he wasnt even quite sure what had happened to him. He knew he knew that he had died a few years later, but he wasnt even sure where he had been taken. And he did know that his father had leprosy, and it turned out that it was the Public Health service who had come and taken him away and brought him to what we now know is carville which was a leprosarium that was run by the u. S. Government for almost a hundred years in southern louisiana. And so, my fatherinlaw was told by his mother this is back in the 1930s dont ever tell anybody that your father had leprosy, because the stigma, what we were talking about, was so great that it would destroy the family. And so, he didnt. He didnt tell anybody for more than 60 years, and here he was, as an older man, he was 78 at the time, he just he just realized that secrets were something that people shouldnt have and that he needed to unburden himself. And of course, we were like, oh my goodness, this is, like, amazing, and so we started doing research and discovered that, in fact, he had been taken to carville, louisiana, and we so you and matt both started doing research together. Actually, my sisterinlaw did a lot of the research too. So, we took my fatherinlaw down to visit because it was actually still operating and there were still some patients there, and we went and visited, and i was just blown away by the institution. Its such an incredible place and the stories are incredible. And i realized when i started doing some research that it wasnt, you know, matts family was only one of hundreds, if not thousands, that were torn apart because of this disease. Yeah, well, i want to talk about yeah. Yeah. I mean, theres so much to so many of these stories, and like you say, it is about the stigma and the discrimination. I just because were living in this moment, i assume the book was already at press before coronavirus hit, am i right . Definitely. Yeah . Whoops. Since we are living through this pandemic, with a disease that we also, as a public, really i mean, obviously, were hearing more and more about it and there are there are a lot of differences, of course, but im wondering if there were echos of your reporting in the conversations that you have had around covid, just the idea of quarantine, for example, and confusion among the public and misinformation, and maybe even discrimination because sadly there is association with because sort of losing you a little bit, laura, sorry. Thats okay. Youre frozen for me. Did you hear my question . The last part, i didnt. Well, im just wondering if you if you hear echos 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. Right, right. I definitely, definitely a lot of the same echos of what happened with the way the United States responded to this disease of leprosy, which really, again, more in the late 1800s, and a lot of it was because of concern about, you know, the impact of germs and people were really ignorant at the time about exactly how dangerous leprosy was or wasnt, and i think theres some similarity to today in that we dont know exactly how covid19 is spread. You know, we have a lot of differences of opinion exactly how it should be treated and how people should respond to it. And there was there was that same kind of, you know, disagreement about leprosy at the time, and it made me realize, you know, 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, you know, they want to, that sort of fits their own prejudices. And because people have this fear of leprosy as being, you know, this terrible disease, they had all these images from the bible that it was a sign of something, they really, you know, looked down upon people who had this disease, and the solution that they saw was, lets isolate these people. Lets get them away from us as much as possible. You know, almost like they just wanted the problem to go away. Right. So less worthy of being treated humanely. And to use the disease as a weapon against others. Right, right. And i know you spent a lot of time down at carville, which you very richly described give us a sense about what a state institution in the late 1800s because louisiana, new orleans, in fact, did have quite a few people who were diagnosed with leprosy and there was a lot of public pressure on the state to do something about it and to create this institution. And initially, the state wanted to build a facility in new orleans where most of the patients were, where there was good medical care and other medical facilities, but they couldnt 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 these people anywhere near us. Not in my backyard. Right, right. So, they didnt know what to do. So eventually, they found this abandoned plantation about 70 miles from new orleans, and the state decided that they could lease it and make this into the new louisiana leper home, but even then, they were really nervous about what 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, and they even told the neighbors that it was going to be an ostrich farm. Thats right. They brought these patients, then, and let me just show you what it looked like. This is the kinds of accommodations that they were 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, the patients, those patients arrived in 1894 after coming up the river. This is what it looked like. I didnt realize. So this is what they came to. I thought it had been i knew that it was remodeled and renovated. Its actually beautiful today if you went there today. Its a gorgeous plantation. So, it was in such bad shape that the they actually housed the patients in the back, in the former slave quarters, because they were actually better shape than, obviously, this plantation was. It was a sugar plantation, right . Old sugar plantation that had been abandoned, basically, after the civil war. And so, eventually, it did start getting built up. You know, the state put money in it. They started fixing it, and they eventually when they first went there, they couldnt get anybody to come there to care for the patients. Because nobody wanted to be associated with them. Its in the middle of nowhere. You asked me the describe the place. Its it was 350acre plantation. It is on the mississippi river, and of course, today, it looks a lot different, but still, there are big, beautiful live oak trees that were there, and its, you know, just 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 mosquitoinfested at the time when these patients came. It was not a good place for people who were sick to be cared for. Yeah, yeah. And as i say, they couldnt get anybody to come work there and they finally recruited the daughters of charity sisters, because they were basically the only ones who would do the job, and even they were kind of reluctant to come there. They actually did come and started working there as nurses in 1896, and then it gradually started getting, you know, built up and they put some money and they started building some dorms. They fixed up the plantation, and then at the same time, around the turn of the century, there started being pressure on the u. S. Federal government to do something about leprosy patients because there were a few very highprofile cases of patients with, you know, somebody was diagnosed with leprosy and everybody freaked out and nobody knew what to do with them, and you know, people were worried about germs and they were worried about what the impact might be on the population. Theres also a lot of antiimmigrant sentiment at the time and there was this belief that a lot of asian immigrants were bringing leprosy and other, you know, diseases into the country, and so that was part of it as well. So there was a big demand, pressure on the federal government, to have a national leprosarium. Eventually, what they did was they purchased the louisiana leper home, because they couldnt find any place else to build a national leprosarium, and it became the u. S. Federal government facility. That was in 1921. So, two things. Going back to the sisters of charity, is that the sister daughters of charity. Daughters of charity. They turned out to be real angels, didnt they, i mean, in the end, they were some of the most sympathetic caregivers and lovely, caring, loving people to these patients. Yeah. I mean, it was kind of amazing. I mean, there was, you know, there was hot and cold. There were some patients, especially when the federal government took over and started bringing patients from all around the country there, you were required, if they diagnosed you with leprosy you had to go there. They brought you there against your will. Many of them, yeah. And many people were confined there for decades. Yeah, for decades. Yeah, i want to get to this, so this idea that, again, because you talk about so many different personal stories, i think, but in general, i want you to kind of step back and just talk a little bit about the about this population and what the impact on this population was of going there. I mean, some of the injustices that they suffered, you know, being separated from their families and children yanked from them and the lack of the vote. Just talk in general a little bit about about the injustice of the whole thing. Right. So, when somebody was brought there, i mean, in a sense, they were treated more like inmates than patients. So, if you were brought there, against your will now, some people did go there voluntarily because they really had nowhere else to go and they thought they would get care, but if they were brought there against their will, there was a big fence around, you were not barbed wire fence. A barbed wire topped fence. You were not allowed to leave. People not only lost their freedom but, you know, they were disowned by their families. They lost their livelihoods if they had businesses or jobs. As you mentioned, they actually lost the right to vote. Because in the state of louisiana, if you were a resident of an institution like this, you were not allowed to vote. Thats incredible. They were really seen as inmates. And then the other thing was many of them, these patients, were encouraged to take aliases when they went there because of the shame that it might bring upon their families if anybody found out. So when you came and when you were first admitted, sister whatever her name, would say, you really should what kind of alias would you like . And you know, that was just a sort of another sign of the dehumanization of these patients. And then, you know, they were treated like you were somebody to be feared, and a lot of the patients were no, you know, known by their case numbers than they were by their real names. But the interesting thing, when the federal government took over and as i 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 to not only it was sort of simultaneously a prison and a haven because inside, the patients, you know, treated each other with lots of respect and they knew that it was not that contagious. They could tell because nobody who ever worked there ever contracted the disease. So, it was a real haven from the outside world where they were not treated very well. And so, the patients built this Incredible Community for themselves. They started having sports teams and bands and plays because, of course, it was louisiana, they had mardi gras parades. That was the big thing every year. And they started a patient newspaper, which yeah, yeah, i want to talk about that. Do you have you have a picture, dont you, of one of the clubs or sort of one of the social gatherings at a bar . They had, like, a bar kind of cafe thing, didnt they . Yes, there were lots let me find this. Yeah. A lot of social activity. Go ahead. Right. It was, you know, because the federal government actually one of the things they did realize and recognize quite soon was that this was these peoples world. The patients world. You needed to have a community because it wasnt just a hospital. Right. It was a it was their world. And so they did have a lot of, you know, as i say, the theater, and they had these facilities, and they also had, you know, like a little, like, bar and they had dances. Dances. And so this is let me just share this picture with you. So this is a picture. Now, this was later on. This was we think it was probably the late 1940s. Okay. You can tell from the dress. And you can see, i mean, this is like an incredible group. This is summer in louisiana. And look at that bar. You see black patients, you see white patients, you see asianamericans, you see hispanic patients. It was incredibly eclectic world. Diverse. Diverse world that you didnt see anywhere else at the time. Right. Especially 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 with incredibly diverse backgrounds. Yeah. And these, you know, carville, the patients were a real crosssection of america. There were rich people, there were poor people, there were people who were highly educated, you know, phds. There were people who were illiterate. There were young people. There were a lot of children. There were older people. And there were a lot of young people who, in fact, fell in love. Yeah. Thats a story i want to get to. I think this story of the one story of betty parker and henry martin is one that sort of, i think, ties a lot of these themes together, right, kind of the paradoxes that youre talking about of carville, how it became this refuge for people who had suffered this discrimination and stigma from the outside world. It wasnt betty who said its better to leave the past behind . I was struck by that quote. It could have been her. I dont remember exactly. Well sheerks came , she came, right . She was from a neighborhood, high society. Yeah, basically a new orleans debutante, beautiful young woman. She was engaged to be married. I mean, she just you know, life was wonderful and perfect for her, and she had some little red little red rash and i think it was actually on her thigh and she had gone to a doctor, and unbeknownst to her, he diagnosed it as leprosy and told her parents first. He didnt tell her. He told her parents. 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. So she went to carville as this young woman and was terrified about it. They thought it was just going to be like six months at the time, right . I mean, her parents said, oh, youll be back. Right, right. Everybody was like, okay, its not going to be that bad. But she, of course, went there, and it turned out to be much, much longer than six months, and she eventually well, first, she ended up having to break up with her fiancee, basically broke off their engagement. Right. Eventually, she met a young man, harry martin, who was also a patient there and very similar circumstances, and they fell in love. And the problem was, at carville, you were not allowed to get married. They separate men and women, right . Men and women lived separately. And, you know, they didnt know what to do. Finally, harry decided that he wasnt getting any better at carville, and he wanted to escape. A lot of people did. People did. Yeah, yeah. There was something called the hole in the fence. This fence that was around, there was one area over in the corner, kind of far away from the front gate that the patients had lifted up and people would escape there, sometimes just for the night, to go to a local bar and have a good time. Kind of like people knew about it, sort of, right . Yes. They kind of knew about it. It was sort of like, okay, we wont talk about it. Although at some point if people escaped and were caught and brought back, they were actually put in a jail that was inside carville. Right. But anyway, so, harry decides that he wanted to leave and escape because he feels like hes not getting any better and he convinces betty to go with him. Actually, her parents convince her to go. Right. They decide that this is after several years there. Shes not doing well there. She should leave. So they do escape. And they get to new orleans, and they have had aliases betty and harry are their aliases. They go back to using their real names. They try to have a life for themselves there. They, in fact, do get married, but they find its very hard for them to live on the outside. Theyre always fearful that somebody is going to discover that they were at this leprosarium and had leprosy. Right. And, eventually, harry starts getting very ill. And so he says i think i need to go back. And betty says, well, im going with you. Im not going to leave you alone. And they go back to carville, and in fact, when they returned, they are both put in the carville jail to serve their sentence. I knew he was. He was first. I think the girl jail wasnt quite as i think it was just a room with horrific, though. Just underscores what a penitentiarylike experience. And they were not allowed to live together then. They were, in fact, once again separated. But there was a lot of this. There was a lot of people who fell in love at carville because this was their world, and there were people who understood them, too, what they were going through. Right, right. It was everything. Yeah, i think i think it was betty parker who said, if im not mistaken, sometimes its just easier to leave the past behind. Its a really sweet story, she was really in love with him and they supported each other and they were well liked in the community, right . Very much so. I just want to remind go ahead. Go ahead. No, im just going to say, and they were part of this community. We can talk about this. What they started doing and that was the second part of the story, the patients ultimately decided to start fighting back. Yeah, yeah. 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 to pam fessler, an npr correspondent who has just written an amazing book called carvilles cure. Can you see it . Is it backwards on the screen . No, no. Carvilles cure leprosy, stigma, and the fight for okay. Justice. Its just an incredible story of this leprosarium that was in louisiana called carville. Were talking about some of the personal stories, people that some that you got to know through archives and newspaper articles and interviews with relatives, right . I mean, and there were a few people, we can talk about this in a second, i dont want to lose the point that you had referenced, but there were a few people that were survivors that you actually met, right . People who had come out . Yeah. Oh, yeah. So, you know, around the 1960s, 70s, we can talk about this later, but eventually a cure for the disease was found at carville, and patients did start getting better, and people were eventually allowed to leave, although many decided they wanted to stay there, because it was their world. Home. It was home. It was family. But so i was, in fact, able to interview people who had lived there, had been patients, and also, when i first started working on the book, this was in 19 i mean, no, in 2016, there was still about a dozen patients from carville that were in federal care. They were in a nursing home in louisiana. And they really did not have anywhere else to go at the time. And so i had the very good of being able to talk to some of them before they died, actually. I think all but one has since died. Thats amazing. Puts a face on this incredible story. Yeah, no, its amazing. And i was so lucky because the patients some of the patients like betty martin wrote memoirs. Yeah. That was just so much wonderful, wonderful information about what it was like to live at carville and to go through this experience. And then, as i mentioned, there was also this newspaper that the patients started. I wanted to ask you. Let me ask you about stanley stine. He started the newspaper, too, didnt he . I just want to remind people, too, that in your chat there at the bottom of the zoom, feed us questions and i will make sure that we get pam to answer some of the questions. A couple people have already done so and well get to them in a second, but you mentioned this newspaper and sort of advocacy for the cause of this population that was so viciously zrimt discriminated against in the outside world. And it became, really, a social Justice Movement in a way, right . Very much so. Civil rights. Very much so. Tell us about Stanley Stein. Hes a young man who arrived in 1931. He was had been a pharmacist in texas. But he was really a brilliant person, loved to write, and when he first got there and he saw the patients seemed very listless and hopeless, and he was really pretty determined to do something about it. And he did not want to become what he said one of the living dead, which is how he kind of saw some of the patients there. And so he he asked if he could start this patient newspaper. And initially it was just, you know, a mimeograph, four sheets. They talked about things like the menu, what movies were going to be shown. But before too long, the patients started writing articles that were a little bit were a lot edgier. They started questioning the federal government and why was their policy to confine people with this disease . Why were they confined when they had a disease that was not that contagious, when people who had much more contagious diseases were allowed to walk around the streets . And they really started making quite a cause of trying to win respect and the freedom for the patients, and Stanley Stein was extraordinary. I mean, he started writing letters to companies that used the term leper in their advertisements, saying, you know, you should not we are not something to be despised. He was the one who he was trying to get people to call it hansons disease instead of leprosy, named after the doctor who had found the germ, the bacteria. The bacteria. And eventually this newspaper started getting circulation outside of carville. And its partly because the American Legion adopted carville as a cause, because there were quite a few set rans there. And they got their members to start subscribing to the paper. And before you know it i mean, there were thousands and thousands of people who were reading this newspaper. And it started becoming quite across the country, right . Yeah, and the world, actually. And the patients, you know, started saying we should not be treated like inmates. We need to why dont we have the right to vote . And it started having an impact not only, you know, inside carville but around the country. Yeah, yeah. And it was because of stanley ste. N and some of the betty martin was also another person who work ed on the paper. They became quite outspoken advocates for themselves. And to me, thats like the most incredible part of the story, just how these patients sort of turned this terrible situation into this Incredible Campaign and the resilience of the people who were put in this situation. Yeah, yeah. Because they could have gotten very lethargic, depressed and inactive. They really became activists, a lot of them. Let me share this question that one of the audience members asked. As a nurse thinking about this presentation ahead of time, i knew nothing about leprosy. Since the skin is the number one barrier against infection, were there points at risk for infection, and if not, why not . And if yes, how did so many survive and populate . Im sorry, were there parts that were i think were there points or parts highly at risk for infection . Parts of the body, i think, parts of the skin. Right, right. Its interesting, because people think of leprosy as a skin disease but its actually more of a disease of the nervous system because the germ attacks the nerves, and usually what people start feeling initially are is numbness in their hands and their fingers, and starts affecting muscles, which maybe get people into, you know, one of the symptoms is sort of clawed hands that people have. Uhhuh, yeah. It also does eventually develop people might get lesions on their faces and their skin. So, its not so much that theres a part of the skin thats more susceptible. Its more, you know, it attacks the whole body. But there are different there are different strains of leprosy, and it also affects people very differently. Right. Somebody like betty martin, she never really developed much more than these little rashes on her skin. Yeah, i mean, some people, you would never even know they have it, right . A lot of people. Its the serious, serious cases that people think of where people you know, they have all these lesions on their face, maybe even sometimes that they the cartilage in their nose starts contracting and, you know, it can have a terrible, terrible appearance, which of course is one of the reasons that people feared the disease so much. In some ways, it could be very repulsive to look at. Actually, thats a relatively small percentage of those who contract it. I would say its the smaller yes. Look at that picture that i showed before of all the men at that bar. I mean you would never know. You would never know. Yeah. And one of the things, if i can just mention sure. You know, people have this image of victims of leprosy losing their hands and their feet falling off, which is one of those myths about the disease. That does not happen. What does happen, though, is i talked about this numbness that people have in their extremities. They can get damaged. They can injure themselves right and not know it, like step on a nail. Step on a nail or burn their hand, so what happens is over time or cut their hand and over time, it damages their fingers or sometimes it leads to amputations because people have been so damaged, but it is the numbness that is really causing most of the symptoms that you see. Heres another question. I believe leprosy cases are ticking up today. Is there a reason, and what is treatment today . Is there does there remain a degree of isolation associated with the disease . So there are about 200 new cases every year in the United States diagnosed, but there are 200,000 new cases every year around the world. And it had been going down. Theres just a slight uptick overseas that i understand. I dont think its a huge increase, but it is an increase, and the very sad thing is that we now have medication that can cure the disease very quickly. If you are diagnosed and start taking this medication which, in fact, goes back to what they discovered in carville, you are no longer contagious could be within 48, 72 hours. And maybe within a year, actually no presence of the germ in your body. And this medication is available, but what happens is, back to the stigma, because of the stigma people dont want to admit they have it. They dont admit they have it. If they suspect they might have it, they might not go seek any kind of treatment. And in some places in the world today, they are still discriminated against. They are still in india, there are still places where people are, you know, are colonized away from away from the community. And thats the sad thing. Its so totally curable, but because of the stigma, you know, its not been eliminated like it probably could be. And i think india and china and indonesia, i think, are places where theyre seeing yeah. Mostly india, brazil. Are the three main ones. As i say, there are still about 200 new cases a year in the United States. And even those people you know, one of the things i learned is that those people can now be treated. Theres outpatient clinics. So instead of carville, people can get treated at hansons disease clinic. Outpatient clinics by the federal government. But a lot of those people, they did a survey and a lot of those patients in the United States today say when they first heard their diagnosis, they considered suicide. Today. Still. Because they were so worried about how they would be treated by their community, by their families. Yeah. And the stories you tell in the book of these families, people and families. Married people that ended up in a house where they had a brick wall and mom and the children are on one side and he had to stay on the other. That was on the campus or on the no, that was early. That was before they started the federal facility. Oh, okay. He was one of the cases that emerged and nobody knew what to do about him. Oh, okay. And thats when the federal government, you know so that was the beginning of the discriminatory attitude policy, right . Thats when the federal government was pressured to we need to do something. We need to have a leprosarium so we dont need people like john early. I was struck by the story of these two children, 9 and 11 years old, frank and haley. Parents took them to carville. It was heartbreaking. Actually, one of our audience questions, was leprosy common among children, or at least as common as among adults . And how were they treated . You say it, like the community had everyone from children to elderly. Right. There were quite a few children at carville. It was believed and im not 100 sure about this, but it was certainly believed then that children were more susceptible to the disease. And what you have, as i mentioned, 95 of the human race is genetically immune to le lepr osy, but you have that other 5 that is susceptible. So what happened is you had the disease, if one member of a family got it, there was also there was a high likelihood that other members of the family could get it. So you did see these cases where numerous children in the same family. Right. Not only did they have the same susceptible but they had close contact over a period of time. Wasnt there a family where like five kids came . The landry family. All five of their children, when they grew up over the years, they ended up at carville. But there was also as you say, there were this was this young boy named oscar dempster, who i mention inned book, who went there when he was 7 years old. He had an injury in his foot. Democrat looked at it and said, you have leprosy and they brat braut him right to carville. And actually his sister was a patient there. Right, right. That man died at carville and he was 91. He lived there from the time he was 7 till the time he was 91. Of course, in the latter years, he was there because he wanted to stay. Right, right. But what happened was some of the older patients would adopt these children because they had been take n away from their parents. Yeah, yeah. So they were kind of with them and raised them as their own. So they would at least have some adult figure in their lives. Family feeling. Yeah. Jose ramirez came as a young child. Wasnt there a couple that adopt this had Young Jose Ramirez . I think he might have been he was a teenager . Yeah, but he was one of the activists. He was a fiery spirit, too, wasnt he . Breaking the rules . Right, right. I want to give these yeah. I want to give the audience questions an opportunity to be responded to. I take it that betty parker came from a welltodo family. Was leprosy felt across those two economic classes, is it today, or is it poorer populations who are at greater risk . It was at the time. As i mentioned, there were very welltodo people who contracted the disease. I think now were seeing a little bit more that its people who are poorer, and i think part of that is that peoples immune system might be weakened because of the way that theyre living, and that makes them a little bit more susceptible to the disease. It does seem that in areas where people are poorer. That it is a little bit more common today. As i say back then it was much wider. Everybody, right. In 2017, this is another question from the audience, i had the opportunity to visit the site. Theres a good museum, which you talk about. Tells the story of the separations and disease biology. Armadillos are one of the few animals that get it and at one point actually we thought it was transmitted through armadillos, right . We do believe that some people do contract it through maybe armadillo meat, especially down in brazil. Theres a strain of leprosy that is but the armadillo is the only animal other than humans where leprosy can be contracted. Wow. And you know, people want to go see the institution, quite frankly, looks a lot like it did decades ago. I mean, it is a big, beautiful facility, and it is now a Louisiana National guard site, which they use it for training and classes. But there also is this museum and you can go there and really learn this extraordinary history. You can see all the back copies of the newspaper, the star. Just how the patients lived. And then theres a cemetery in the back of the grounds that you can also see, and the patients are buried. A lot of them with their case number. Wow. Wow. I was struck by the fact that priests, at one point anyway, wouldnt come to give patients last rites . That was at the beginning. That was like right but that changed . Yeah, yeah, that did. A more wellknown another question. A more wellknown leprosy isolation site is on malakai, hawaii. And it is a National Historical park. Is it related to the louisiana site . Not really. I mean, the only way its related is that theres actually the creation of the site, which was in the mid 1800s, which served as a model for carville, this whole concept of maybe if we isolate these patients. And there was a belief at the time in the medical community that if we isolate these patients that we, in fact, will be able to eradicate the disease. So it wasnt done for all terrible reasons. There was a belief that, in fact, this might be a way to get rid of leprosy. And when the doctors in louisiana were considering what to do, one of the things they did, you know, look at the experience at malachi and of course we now know that this policy of isolating people actually turned out to be completely counterproductive because what it did was it scared people away from seeking treatment because they didnt want to have to be isolated and taken away from their families, and the disease has a very long incubation period. It can be up to 20 years. My goodness, wow. From the time they feel the first symptoms. If they were going to infect anybody else, they would have done it, way before they were brought to carville. But people didnt know that at the time. No. No. People with tuberculosis and all these other things were Walking Around i mean, those that werent sent to sanitariums, but people with a lot more contagious diseases didnt have that stigma attached to them. And interestingly, when people were sent away to carville, sometimes they didnt their families didnt know what to tell their friends when it happened and they would often say, oh, well, they got tb. They had to go away. The other thing that really cracked me up, they would say, oh, theyre having a mental breakdown. We have to send them away. Like thats better. That was definitely better than admitting that somebody had leprosy. Oh, gosh. Its really so sad, isnt it . I have to say, after reading the book that i looked up a long time im going to show this again. I read the book and i looked a long time at the cover. I dont know if you can see the picture there. But that image that you chose for the cover i just find haunting. These would men sitting by themselves, looking out the window and another man being treated by one of the sisters. Its a faded photograph. Its a sad and lonely feeling that you get by looking at the photograph. And then you look at the title, and it struck me that tell me, i might be completely off base here. But the idea of carvilles cure, that it did, at the same time as being a sort of lonely, sad place, have this restorative, healing quality to it for this community. And it was, actually, a cure for some of these patients that really found could not find love, community, even acceptance within their own family, let alone in society often. Yeah. I mean, for me, the cure and the fight for justice is both the physical disease and the physical cure, but also the social cure. The fight for this social cure and to have the stigma, and to have freedom, and to be able to be accepted as people who are just ill and not people who have done something wrong and should be penalized for it. To me, thats the wonderful part of this institution, is that, as tragic as it was, it brought all these people together who really fought for the rights of leprosy patients around the world. Now, the sad thing, of course, they did ultimately get their right to vote back. They also, you know, did get the freedom to leave, if they wanted to, and get treatment. To me, the sad thing is that when did that happen . When did they get the freedom to leave . When did that change . When did it change so they were allowed to leave . Yeah, it was kind of a gradual thing, so the this medication that started helping to cure the disease was discovered in 1940. But it really took, really, a few decades where before it was perfected a eed and before, know, patients were really showing a lot more improvement. And so gradually, they started allowing patients first to have leaves, but then if they they tested them every month. And if they had 12 consecutives tests, then they were able to leave, which actually happened to betty and harry martin. So it was gradual, where they started getting their freedom. They did get the right to vote back in 1946 after world war ii, because it seemed so bizarre that people who as i say, there were veterans there. There were people who fought for their country, but they could not vote because they had this disease. So they eventually got that back. But the freedom part started, i would say, about 1960 on. There were no more people who were brought to carville against their will and confined there. And then people were eventually, as i say, free to go when they got better. And then at one point, the federal government started wanting to push people out because they didnt really want to have this institution anymore and this expense and thats when patients said, wait a minute. You took us away from our homes and you took us away from our families, and now youre going to force us to leave . Where are we going to go . Exactly. What are we going to do . And they said were not leaving. You know, you take care of us for the rest of our lives and eventually thats what the federal government agreed to do. You started to say, before i so rudely interrupted you that yet this stigma, myth and injustice persists. Right . Yeah. You know, you can still see examples of it today, and it just you know, when we had the controversy about the caravan of immigrants coming from central america, there were some people on tv who were saying, you know, theyre bringing all these terrible diseases. Theyre bringing leprosy to our country. You know, weve got they were actually saying, theyre bringing leprosy into the country. Weve got to stop them. There have been people who have accused, in homeless camps, you know, especially ones in places like los angeles, oh, theyre spreading leprosy. You know, this is terrible. And they still use the disease as a weapon against people that, you know so its pretty extraordinary. And then, you know, we still have cases where if somebodys diagnosed with leprosy, there was one a few years ago you know, all the parents, they didnt want their kids to go there because, you know, what if they become get leprosy, even though we now know its easily cured. Yeah. Yeah. Its staggering. Well, i think weve reached about the end of the hour. I know it went by really fast. It was really fast. The book is carvilles cure leprosy, stigma, and the fight for justice. Pam fessler is the author. Shes a correspondent for npr. Its been wonderful to talk to you. You too, laura. Thank you very much. I really appreciate it. Youre welcome. Weeknights this month, were featuring American History tv programs as a preview of whats available every weekend on cspan3. In the 2000 president ial election, Texas Governor george w. Bush defeated Vice President al gore in one of the most highly contested races in u. S. History. The election wasnt decided until five weeks after, when the u. S. Supreme court stopped a florida recount. This ultimately awarded the states electoral votes and the presidency to bush. We begin from december 13, 2000, followed by george w. Bushs victory remarks later the same evening. Watch, beginning at 8 00 p. M. Eastern and enjoy American History tv every weekend on cspan3. Every saturday, at 8 00 p. M. Eastern, on American History tv, on cspan3, go inside a Different College classroom and hear about topics ranging from the american revolution, civil rights, and u. S. President s to 9 11. Thanks for your patience and for logging in to class. With most College Campuses closed due to the impact of the coronavirus, watch professors teaching to a virtual setting to engage with their students. Gorbachev did most of the work to change the soviet union, but reagan met him halfway. Reagan encouraged him. Reagan supported him. Freedom of the press, which ill get to later, madison called it freedom of the use of the press. It is indeed the freedom to print things and publish things. It is not the freedom for what we now refer to institutionally as the press. Lectures in history on American History tv on cspan3 every saturday at 8 00 p. M. Eastern. Also available as a podcast. Find it where you lifb liststen podcasts. With joe biden as president elect, stay with cspan for live coverage of the election process and transition of power. Cspan, your unfiltered view of politics. On lectures in history, Sally Mcmillan teaching a close about the polio epidemic in the u. S. , starting with a major outbreak in 1916 in brooklyn, new york, that killed more than 6,000 people. Professor mcmillen also examines efforts of franklin roosevelt, a polio victim himself, to help find a cure, in part by starting the march of dimes organization. In addition, she details the efforts that led to the 1955 announcement of a successful vaccine created by dr. Jonas salk. Just wanted to explain in