the fight for justice. it looks at the history of the residential hospitals for americans with leprosy in carville louisiana, which began operation in 1894 and closed in 1999. the kansas city public library hosted the program and provided to video. interviewing miss fessler is -- >> on the director of programming and marketing at the public library. my job tonight is to take care of a quick items beforehand things off to two women who are far smarter and far more entertaining than i am. if at any point tonight you have questions, you can put those in the comments or chat box on our youtube page and we will get to as many of those as we can. if you would like to purchase the book, and i hope that you will, it's available through most major retailers. i'd like to point people toward bookshop .org. you can find about just any

book you are looking for and support independent booksellers across the country. with that out of the way, let's get started. you probably recognize the voices of both of our guest tonight. our host is laura singular. she has been a producer with npr in washington d.c. international npr reported covering the midwest. currently, she is producer and community engagement report a kansas city's npr. thank you for joining us tonight. you are welcome. good to be here. >> i'm jumping in and i guess. i'm delighted to be here and introduce you to pam fessler, who's a award winning journalist at npr. she has covered poverty and election issues, voter issues, for many years. now, in the tradition of npr journalists who you recognize as excellent storytellers,

podcast and online. she has proven the ability to translate that ability to tell stories on the radio. the platform of the printed word. of course her new book is called carville's cure. i have the opportunity to talk to you. >> thanks so much. the one thing laura did not mention is when i first started at npr 27 years ago, i was the midwest editor. one of the people i edited was laura ziegler. i'm just so pleased. >> best editor i ever had. >> best reporter. [laughs] i >> anyway, again, it's just so much fun to have you here. it's such a fascinating book. leprosy is a topic that we don't really hear very much about. we don't hear very much about it. but i think it's safe to say that for many of works in our

consciousness, unfortunately with a pejorative connotation, just because of a history of every day use of the word. i bet it is not encountered very often in a medical context. i don't know, but i think it's probably rare. i know you talk about not very many cases. so it feels the whole topic kind of scary and exotic and unknown. i want to kind of start the discussion there. you found, to your surprise, that one of the most we front we -- said references to the word leopard was in and pr interview. and you are disappointed. >> you are disappointed to that because you make the point that we don't really use the word leopards anymore, and for good reason. it really kind of gets to the heart of what the story is about. the myths, stigma, discrimination and injustice. right?

>> right. exactly, initially i was going to even call the book stigma because i believe that is when it is really about. the word leper, or the word leprosy, just has so many connotations. as you point out, we use it today to talk about things that are to be despised. someone who's treated like a leper. there is so much that is weighing on these words. in fact, the people who had this disease, or still had the disease, there are many cases around the world. they suffer almost more from the stigma and the word and what it means then they do from the disease itself. it's actually the main focus of the book and a lot of ways. it's about fighting against the stigma because very early on in the book, it's actually one of

the least contagious diseases in the world. 95% of the human race can't even get it. the 5% who can get it, can only get it with long term sustained contact, not because somebody sneezed on you or something like covid-19. it's just very hard to get, but it's because of this stigma. the centuries old stigma that is existed. >> it's fascinating. i want to back up in just a second. there is a personal story behind this story. you have a personal connection of -- a family secret that came as a big surprise to one of your relatives. you're shared his secret late in his life. >> it was actually my husband's father. >> your husband's father, and his grandfather. >> it was his father. so i will tell the story.

>> sorry. yeah. >> it's okay, because you might wonder why did i write a book about leprosy. a reporter who covers poverty and voting issues. as laura points out, it was because of this family experience. the way it got started was, in 1998, my father in law just called a stop 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 for more than 60 years. he said 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. he never saw or spoke to his father again. he wasn't even quite sure what had happened to him. he knew that he had died a few years later, but he wasn't even sure where he had been taken. he did know that his father had

leprosy. it turned out that was the public health service who had come and taken him away and brought him to what we now know as carville. it was i 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, don't 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 didn't. he didn't tell anybody from more than 60 years. and here he was as an older man. he just realized that secrets or something that people shunned hemp that we 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 sister-in-law 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. it's such an incredible place. and the stories are incredible. i realized when i started doing some research, that it wet, you know, matt's family was only one of hundreds, if not thousands, but were torn about -- a part because of this disease. >> yeah. i mean, there's 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 impressed 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 we're hearing more and more about it and there are a lot of differences of course. i'm wondering if there were echoes of your reporting in the conversations that you had around covid. he quarantine example and misinformation, even discrimination, because sadly there is association with [inaudible] >> i'm sort of losing you a little bit, laura. i'm sorry. >> you're losing me? that's okay, you're frozen for me. did you hear my question? >> the last part i didn't. >> i'm 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. human discrimination. sadly, this connection with asians, which was something that was also at play. >> definitely, a lot of these echoes of what's happened with the way the united states responded to this disease of leprosy. it 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 wasn't. i think there is some similarity to today in that we don't know exactly how covid-19 is spread. we have a lot of differences of opinion of exactly 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. they really looked down upon people who had the disease. and the solution that they sought was let's isolate these people. let's get them away from us as much as possible. almost as if they wanted the problem to just 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. >> bright. >> i know that you spent a lot of time down in carville. you very richly described its physical space. 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. >> 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 don't have to. it started as a state institution in the late 1800s because louisiana, new orleans,

they had quite a few people diagnosed 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 sight, all of the neighbors were up in arms and said no. we don't 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 leopard home.

even then, they were really nervous about what's 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. they brought these patients then. 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 renovated. i did not realize this is what it looked like when they

actually arrived. >> it's actually beautiful now today if you went there today. it's a gorgeous plantation. it wasn't such bad shape that the actually oust 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? >> in 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. >> it's 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 looks a lot different, but still there are

big beautiful live oak trees that were there. it's 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. tell me 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 did come, and started working there that's nurses in 1896. then it gradually started getting built up and fixed up they started building some dorms, and fixed up the plantation and then at the same

time around the turn of the century, they were being in there was pressure on the u.s. federal government to do something about leprosy patients. because they 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, we're 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

leprosy area. and that became the u.s. federal government facility in that was in 1921. >> so two things going back to the sisters of charity and the dollars of charity they turned out to be real angels didn't they i mean in the end there were some of the most sympathetic characters and lovely caring and loving people to these patients. >> it was kind of amazing, and it was hot and cold and then there was some patients, especially with the federal government when they took, over and they started bringing patients from all around the country there. and you are required, if they diagnosed with leprosy, you know you have to go. there >> yes they brought you their gangster. we'll >> many of them yes. >> 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. use some of the injustices that they suffered. being separated from their families, and children yanked from them, and just talking 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. if you are 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, and. >> it was barbed wire. >> yes barb wired top's.

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 your 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 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, the eventually they started, building a community for themselves. an incredible world inside of carville. because it turned out, it turned out 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, and they started having sports teams, and bands, and plays, and in because it was louisiana they had mardi gras parades, that was a big thing every year, and they had their own newspaper. >> yes yes and i want to talk about that, and you have a pitch or don't 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 café think didn't they? where they were. together >> i will bring it right to you. >> yes a lot of social activity and go ahead. >> yes right, it was you know because the federal government didn't 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 look 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. >> yes and let me share this one pitcher with you, i'm so 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 we're talking this is southern louisiana right, and look at

that barr. 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 don't 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 they 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 that's a story i want to get to. and i think the story's, of the one story of betty and martin, i think it's one that ties these themes together. sort of the paradox is that you are talking about of carville and help 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 at betty who said that was at somebody else? i was struck by that quote. >> it could've been her, it could've been her. >> well she came, and she was a teenager and she was from a neighborhood and, high society neighborhood, and. >> yes she was a new orleans

debutante, putin young woman, engaged to be married and she just you know life just look like it was wonderful and perfect for her, yet she had some little rash, and i think it was actually on her thigh, and she's gone to a doctor and as unbeknownst to her, he diagnosed her as leprosy it is leprosy, and told her parents heat until her it older 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 young woman and was terrified. >> they thought it was just going to be like six months at the time. right and her parents said will you'll be back. >> right right yeah everybody was saying that, but she of course went there and it turned out to be much much longer than

six months, and she eventually will first she ended up having to break up with her fiancée will lay broken off their engagement, the. >> and then eventually she met a young man, who was also patient there, and very similar you know sort of circumstances, and they fell in love. and, the problem was it carville if you film of, you are not allowed to get married. >> they stayed separated them right they separated men and women. >> yes they live separately, and you know they didn't know what to do, and finally harry decided that, could he was not getting any better carville and he wanted to escape rick. >> a lot of people did. >> yes 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 sometimes just for the night, to go to a local bar and have a good time. >> it's not like people knew about this right sort of. so it was sort of like ok just go we will talk about it. >> although some points, if people stayed and were caught, they were brought back and they were put in a jail, that was in carville. look >> right right. >> so harry decided that he wants to leave, and escape because he feels like he's not getting any better and he convinces, betty to go with him. and actually her parents convinced her to go with him. and she decided this is after several years there, and decided she's not really doing anything there so they do escape, and they go back to new

orleans. they had had aliases, betty and harry were there aliases, and they came back and use their real names, they try to have a life for their names there for themselves they're sorry, and they do get married. but they find very hard for them, 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. i'm 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. well >> i knew he was, but i didn't if she was. >> i think the girl jail, wasn't bad knows bad it was like a room but closed. >> horrific it just underscores whatever penitentiary like

experience was. >> and they were not in fact allowed to live together, and they came back they were once again separated. but there was a lot of this. there were a lot of people who fell in love at carville because this was their world. and there were people there who understood them and they understood that. >> right right, it was everything it was everything. and i think it was betty parker who said, if i'm not mistaken it's just easier to leave the past behind. it's a sweet story, you know the two of them and she was really in love with him, and they supported each other, and they were well liked in the community right. >> oh very much so yes very much so. >> i want to remind sorry go 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. against the injustices. >> yeah yeah i'm 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 with as pam fessler she's a correspondent who had just written an amazing book, called carville's here. can you see it what is it backwards? >> yeah i can see it. >> so leprosy stigma and the fight for justice. it's an incredible story about this song leprosarium that was in louisiana called carville. and we're 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 don't want to lose the point that you referenced, but there were a few people that were survivors that you actually met right? >> yes yes so, 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 to start 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 was home. >> yeah and this became their family, so good i was in fact able to interview people who had lived there. there were patients there. and also we have when i started writing the book, this isn't this isn't sorry 2016, there were still about a dozen patients, from carville that were under federal care, and they were in a nursing home. and there were mostly older, and maybe they didn't 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. >> well that's makes you know puts an amazing human face on the story. >> yes and i was so lucky because, the patient some of the patients, like betty martin, wrote memoirs. and talked about their life. and that was 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 this newspaper, that the patients started. >> and i want to ask you let me ask you about as this i think the person who started the newspaper, i want to remind people to that in your chat, at the bottom of the zoom, fetus some questions and i will make sure that we get pam to answer some of the questions. some of the people of already done them. and as but just stanley's time stanley stein right, you

mentioned him and this information that where they were so viciously discriminated against them, and it became a social justice movement in a way this newspaper. >> yes very much so. >> so tell us about stanley stein. >> he's a young man, he arrived in 1931, he's a pharmacist in texas he was, and he's a brilliant person, love to write and when he first got there he saw the patients and they were listless and hopeless, and he was really pretty determined to do something about it. 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 asked if he could start this patient newspaper, and initially it was just maybe for sheets and they talked about things like menu and, what

movies were going to be shown the. but before too long, the patients started writing articles that were a lot edgier and they started questioning the federal government, and why was their policy to confine piece you can find people with this disease. why were they being confined. when they had a disease that was not that contagious, when people that much more contagious diseases were allowed to walk around the streets. they really started, making quite a cause of trying to win respect, and the freedom for the patients. and stanley stein, he was extraordinary he started writing letters to companies that use the term leper in the advertisements, saying you should not you know this is something to be despised, and he was the one and he was trying to get people to call it

henson's disease, instead of leprosy. named for the doctor who had found the bacteria of the germ. and eventually, this newspaper as started to getting circulation outside carville, partly because of the american legion, they adopted carnival as a cause, because quite a few veterans there. and they got their members, to start subscribing to it, and before you knew it there was thousands and thousands of people, who are reading this newspaper. it started becoming quite. something >> across the country yes. >> right right, and the world actually. so the patients started saying, we should not be treated like inmates, we need to you know why don't we have the right to vote, and it started having an impact. get not only inside of carville, but around the country back.

>> yes. yes >> you know and this is because of stanley stein, and betty was another person who worked on the paper. and they became quite outspoken advocates for themselves, and to me that is like the most incredible part of the story. how these patients, sort of turn this terrible situation and they turned into this incredible campaign. >> yes. >> the resilience of people, who are put in the situation. >> yes yes, because they could've gotten very lethargic and depressed and inactive. so let me share this question, one of the audience members asks, as a nurse, thinking of this presentation ahead of time, i look i knew nothing about leprosy. since the skin is the numberj.kd one barrier and gains infection, or their parts highly at risk,

or infection and if not why not. and if yes, how did so many survive and populate key? >> i'm sorry, i'm not sure,. i >> okay i think over there points are parts at risk for infection, maybe parts of the body? >> okay so it's interesting, because people think of leprosy as a skin disease, but it's actually more of a disease of the nervous system, and because the germ, it attacks the nerves. usually what people start feeling initially are as it is numbness in the hands and the feet. and it starts affecting muscles which maybe get people you know one of the symptoms is like

claude hands that people get that people have and it also does eventually develop you know people might get lesions on their faces and their skin. so it's not so much that it is part of the skin, that is more susceptible it is more unity tax the whole body. but there are different strains as of leprosy. it also affects people very differently. somebody like betty martin, she never really develop much more than these little rashes on her skin. >> some people you would never even know they have it right? >> there's a lot of people, and it is the serious serious cases that people think where it's you know they have all these lesions on their face, and maybe even sometimes that the cartilage in the nose is retracting, and it could have

terrible terrible appearance, which of course is one of the reasons why people here to unseat so much because, they could be repulsive. >> and actually that's a small percentage of those who attract who basically get this. >> when you look of that look at that with all the men at the bar,. top you would never know really. >> no you would never know. and one of the things you mentioned, people have this image of victims of leprosy, losing their hands and their feet and their falling off, which is one of those myths about the disease. it does not happen, but what does happen though is that and i talked about this numbness that people have in extremities, they can get damaged, and they can injure themselves. >> right and not know it right. >> step on a nail, or on their

hands burn their hands, and what happens over time or cut their hands, and what happens now with the damages, their fingers toes, and sometimes it leads to amputations, but it is numbness that really is causing most of the symptoms that they have. >> here's another question, and i believe leprosy cases are ticking up today, is there a reason and what is a treatment like today? is there still you notice they remain a degree of isolation associate with the disease? >> so there are about 200 new cases every year in the united states. but there are 200, 000, new cases every year around the world. and, it had been going down, there is a slight uptick, overseas i understand and i don't think it's a huge

increase, but there is an increase a little bit. 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 goes back to what they discovered in carville, you are no longer contagious as could be you know within 48 or 72 hours. maybe within a year, there's actually no presence of the germ in your body. and this medication is available. what happens, is back to the stigma. because of the stigma, a lot of. >> people don't want to admit they have. it >> yet if they suspect they might have, it they might not seek any kind of treatment, and in some cases there are some places in the world today, they are still discriminated against.

they are still you know in india, there are places where people are colonized and away from the community. that is a sad thing. it's so totally curable, but because of the stigma you know it is not been eliminated. well and honestly it could be. >> and i think india and china and indonesia, places like that. >> mostly india, brazil and indonesia are the main ones. and i say they are still about 200 new cases a year in the united states. and even those people, one of the things i learned that those people can now be treated, they're out patient treat minutes. and you know unlike cargo, as people can get treated by the federal government, it also

unlike carville. along those pace along those patients in united states, say today when they first heard the diagnosis they considered suicide. today. because they were so worried about how they would be treated the by their community, and by the families. >> yes and in the stories you tell, in the book about these people and families and you know married people that ended up in a house where they had a brick wall, and mom and children are one side, and you had to stand the other, you know that was on the campus. we >> know that is actually john -- and that's before they started the federal facility. that was in d.c.. he was one of the cases, that emerged and nobody knew what to do about him. and that is when the federal government the.

>> that was the beginning of the discriminatory attitude. >> and the government thought we need to do something, you know we need to have a place, so we don't have to have people like john hurly around. >> i was struck by the story of these two children, nine and 11 years old, frank and haley, and whose parents had taken them to harvey to carville sorry, and it was heartbreaking. ed and was leprosy common among children? or as common as it was with adults and how are they treated? so as you said the community, had everyone from children to the elderly. >> right there were quite a few children, and it was believed, and i'm not 100 percent sure about this but, it was certainly believed that children were more susceptible to the disease. and what you had, as i mentioned 95% of the human race,

is genetically immune to leprosy. but you have the other 5% that is susceptible. so what happens, is that you have the disease if you know one member of a family got, it there was a high likelihood that other members of the family could get it. so you did see these cases for numerous children in the same family. and it was you know not only had they had the same susceptibility, but they also had all of this contact to overtime. >> wasn't their family where there were like five kids it came. >> yes the laundry family, and all five of their children when they grew up over the years, they ended up at carville. but they were also, as you say you know there was this young boy named oscar dempster, and he went there when he was seven years old. he had an injury on his foot,

he went to the hospital and the doctor looked at it and said oh you have leprosy. and they brought him right to carville. his sister was already a patient there >> right right. >> so that man, he died at carville. he at the age of 91. >> he lived there from the time he was seven, until he was 91. and of course in the latter years, he was there because he wanted to be there, but you know, what happened was that some of the older patients would adopt these children, because they have been taken away from their parents. >> yes yes. >> so they would take them and raise them as their own. so they would at least have some adult in their lives. >> family feeling yes, and josé ramirez came as a young child,

and wasn't there a couple that adopted this shot. >> yes i think he was like 19. but yes. >> he was one of the activists, he was a fiery person. he was breaking the rules. >> yes he was. >> i want to give the audience an opportunity to be respond to their questions, and i got the idea that bet he was came from a well class family, but talk today are we greater issues with somebody for last beat greater risk? >> there were people who got the disease weld to do people, and i think now we are seeing it more people who are, poor and i think part of that as you know peoples immune systems, might be weakened because of

the way that they are living. that makes them a bit more susceptible to the disease. it does seem that in areas where people are poor, that it is a little bit more common. >> today. >> yesterday. >> back then, as i say it was everybody. it was much wider. >> everybody yes. >> so in 2017, here's another question from the audience, i had the opportunity to visit the site, and there is a good museum which you talk about, that tells the stories of a number of the patients and the disease biology, armadillos are one of the few animals that get it. and at one point they thought it was transmitted through our models correct? >> yes some people do get it from eating armadillo meet,

especially in brazil where it's common. but the armadillo, is the only animal other than humans, where leprosy can be contracted. but that woman is right, there is a wonderful wonderful museum down there, and if people want to go and see it, and the institution quite frankly looks a lot like it did decades ago. it is a big beautiful facility. it is now, a louisiana national guard site. can they use it for training, and classes but there is also this museum, and you can go there and really learn this extraordinary history. you can see all the back copies of the newspaper, and how the patients lived, and then there is the cemetery in the back of the grounds. you can also see and the

patients a lot of them that with their case number are buried their. >> wow. as i was struck by the fact that, priests at one point anyway, would not come to give patients last rites? >> that was right at the beginning. >> that changed. >> yet did that to change. >> a more well-known, leprosy isolation site is on multi hawaii. is it okay wait and it is a national historical park. is it related to the louisiana site? >> not really the only way it is related, is that it is actually the creation actually of the colony on multi, which is in the mid 1800s, was in some way served as a model for carville. this whole concept of maybe if

we isolate these patients, and there was a belief at the time by some in the medical community, that if we isolate these patients that we in fact will be able to eradicate the disease. it wasn't done for all the terrible reasons, it was you know there was a belief that in fact this might be a way to get rid of leprosy. and when the doctors came in louisiana when they were considering what to do, one of the things they did was look at the experience in mola kiley and of course we now know that this policy of isolating people, turned out to be completely counterproductive because what it did, is it scared people away from seeking treatment, because they did not want to have to be isolated, and taken away from the cameras and the disease has a very long

incubation period. it could be up to 20 years. >> oh my goodness. >> just from the time we feel the first symptoms, if they were going to infect anybody else they would've done it way before they were brought to carville. so cool but people didn't know that at the time. what >> no no, and people with tuberculosis and all these other things were walking around, and you know some of them were sent to sanatoriums, but a lot of people with a lot more contagious diseases did not have that stigma attached to them. >> interestingly, when people were sent away to carville, sometimes their families did not know what tell them did not want to tell their friends, and they would go off and say, well they got to be they had to go away. another thing that crack me up, is it's like oh you're having a mental break down and you have to send them a way like that's better's. that was definitely better than

admitting somebody had leprosy. >> oh gosh, it is so sad isn't it. >> yes. >> i have to say that after reading the book, you're not going to show this again, i read the book, and i looked a long time at the cover, and i don't know if you can see the picture there, but look that image, the one you chose for the cover, i find haunting. these two men sitting by themselves, looking at the window and another man who is being treated by one of the sisters, and it's a faded photograph and it is a sad and lonely feeling that you get by looking at the photograph. then you look at the title, and it struck me that as and tell me, i could be completely off base here, but the idea that carville's as cure that it did at the same time of being this lonely sad place, had these restorative feeling in quality

to it this community. and it was actually, a care for some of these patients who really found you know they could not find maybe love or community and even acceptance within their own family, let alone in society. >> yes and 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, where they did not have the stigma and to have freedom. to be able to be accepted as people who are just ill, not people who have done something -- something wrong should be penalized for it. and to me, that's the wonderful part of this institution it's that as tragic as it was, it

brought all these people together who really fight for the rights of leprosy patients, around the world. now, the sad thing, of course they did ultimately get the right to vote back, they also did get the freedom to leave, if they want it to and take a treatment. but to me the sad thing -- >> when did that happen? when did they get the freedom to leave? when did that change? when was, it when didn't change they were allowed to leave? >> it was kind of a gradual thing. so so with this medication that started to cure the disease was discovered in 1940, they really took a few decades before i was perfected and before patients were really showing a lot more improvement so gradually they started allowing patients first

to have leaves. but then they tested them every month, and if they had 12 tests in a month, 12 consecutive tests than they were able to leave, which actually happened to these two. so i was gradual when they started getting their freedoms back. they did get the right to vote back in 1946, after world war ii. because it seemed so bizarre that people -- as i say, veterans there, so 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 starts about 1960 on. there were no more people who were brought to carville against air wales, and confined there. and people were eventually, as i say, free to go. and then at one point, the federal government was starting to push people out, because i didn't really want to have

these institutions anymore. wait a minute, you took us away from our homes, i need to this one from our families, and i are gonna forces to leave where are we gonna go. when we get to do? and they said we're not leaving you take care of us for the rest of our lives, and eventually that's when the federal government agreed to deal. >> yeah, and you started to say that, before i really interrupted you, that yes this stigma and injustice persists. >> yes, you can still see examples of it today. when we had a controversy about the catamaran of immigrants coming from central america. there were some people on tv who are saying, you know they're bringing all these terrible diseases, they're bringing leprosy to our country. if they were actually saying they're bringing leprosy into

the country. you have to stop them. there have been people who have accused a homeless camps, especially ones in places like los angeles, oh they are spreading leprosy. and they still use the disease as a weapon against people that for one reason or another people don't like. so it's pretty extraordinary. and you know, we still have cases where if somebody is diagnosed with leprosy, there was one of years ago, in some schools in california. everybody freak out. all the parents think they want their kids to go there because what if they become and get leprosy. even though we now know it's not that contagious, and easily cured. >> it's staggering. well i think we've reached about the end of the hour. i knew we would go by fast. it was really fast.

the book is here is still leprosy stigma, in the fight for justice. pam fessler is the author. she's a correspondent. thank you so much, this has really been wonderful to talk to you. >> you too, laura. thank you very much, i really appreciate it. >> you're welcome.

>> on lectures in history, sally mcmillen teaches a class about the polio epidemic in the united states, in the early to mid 20th century, starting with a major outbreak in 1960, in brooklyn, new york. the -- that killed more than 6000 people. professor mcmillon also talked about president trump in, roosevelt helping to find a cure by starting the march of dimes organization. in addition, she details the effort that planned the 1955 announcement of a successful vaccine created by doctor jonas salk. >> okay i jwa