misses kennedy and knights and internal flame at the head of her husband bought grave. john fitzgerald kennedy reaches the end of his earthly journey, love will lead him to the green hills of arlington cemetery. follow us on social media at c-span history for more this day in history clips and -- >> author and national public radio correspondence and on her book about leprosy, stigma, and the fight for justice. interviewing her is laura, a community reporter and producer

with kcur radio in kansas city. the director of programming and marketing at the kansas city public library. we need to cape -- take care of a few housekeeping items. tonight you have questions you can put those in the comments or the chat box on our youtube page and we will get to as many as we can. if you would like to purchase the book, it's available through most major retailers. we like to point people towards hop./org, you can find any book you are looking for and support independent booksellers across the country. you will probably recognize the voices of both of our guests. with has been a producer npr in washington, d.c. and a national npr reporter covering the midwest.

she is the producer and community engagement reporter at kansas city public radio, kcur. >> good to be here. i'm jump again i guess. [laughter] to be here and introduce you to pam who is an award-winning journalist that poverty andcovered election issues for many years. in the tradition of npr she --ists she has proven the ability to translate that ability to tell stories on the radio to the platform of the printed word and -- "leprosy, stigma, and the fight for justice or cow i'm delighted

to have the opportunity to talk to you. it's been such a long time. pam: thank you. what laure did not mention is that when i first started at mpr 27 years ago i was the midwest editor and one of the people i edited was laura. laura: the best editor i ever had. pam: so much fun to have you here is laura: leprosy is a topic we don't hear much about or talk much about. for many as this works in our consciousness, unfortunately with perfect -- pejorative complications -- connotations with the history of the word. think it is not encountered often in a medical context, but it's probably rare. you talk about not many cases.

kind of scary and exotic and unknown. i want to start the discussion there. you found, to your surprise that one of the most recent references to the word leper was in an npr interview and you are disappointed. >> you did the endnotes, didn't you? >> you are disappointed in that. you make the point that we don't really use the word leper anymore, and for good reason. the heart of ao lot of what the story is about. , the discrimination, and the injustice. >> initially i was going to call the book "stigma" because that's what it's about. word leper or the word leprosy had so many connotations. we used it today -- we use it today to thought about things that are despised.

there is so much that is , that inon these words fact the people who had this disease or still have this disease, there are many cases around the world they suffer almost more from the sigma of the word and what it means than they do from the disease itself. main focus of the book in a lot of ways. fighting against the stigma. , it'sarly on in the book one of the least contagious diseases in the world. 95% of the human race cannot even get it. the 5% that can get it can only get it with long-term sustained contact. not because someone sneezed on you like with covid-19.

it's hard to get because of this sigma. you have this centuries-old stigma about this institution. >> fascinating. i want to back up. there is 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, your grandfather shared his secret late in his life. father.s my husband's i will tell the story. that's ok, you might wonder why i wrote a book about leprosy, for a reporter that covers poverty and voting issues. as laura points out it was because of this family experience. in way it got started was,

1998 my father in law called us up one night out of the blue and said "i have something i need to tell you, i have something i've been keeping inside for more than 60 years." when he was a teenaged 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 was not even quite sure what it happened to him. he died a few years later, but he was not sure where he had been taken. he did know that his father had leprosy. 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, a leper cerium run by the u.s. government -- a leprosarium that was run by the

u.s. government for almost 100 years in southern louisiana. so my father in law was told by his mother, this is back in the 1930s, "don't ever tell anybody that your father had leprosy." because the stigma, but we were -- what we were talking about, was so great that it could destroy the family. so he didn't. he didn't tell anybody for more than 60 years. and here he was as an older man. he just realized that secrets are something that people should not have and that he needed to unburden himself. of course, we were like, oh my goodness. this is amazing. so we started doing research and discovered that, in fact, he had been taken to carville, louisiana. >> so you both started doing research. >> actually, my 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. and i realized when i started doing some research, that it was, you know, matt's family was only one of hundreds, if not thousands, that were torn 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 at press before coronavirus hit. am i right? >> yes, definitely. >> yeah. since we are living through this pandemic with a disease that we

also, as a public, obviously 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. the 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 ok, 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. and even discrimination. sadly, this connection with asians, which was something that was also at play. >> definitely, a lot of these same echoes of what's happened

with the way the united states responded to this disease of leprosy. which really began more in the late 1800s. a lot of it was because of concern about the impact of germs. people were really ignorant at the time about exactly how dangerous leprosy was or 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 exactly how it should be treated and how people should respond to it. there was that same kind of disagreement about leprosy at the time.

it made me realize, when i was writing the book, just how much misinformation and lack of information about diseases sort of allows people to respond to it in a way that they want to, that sort of fits their own prejudices. because people had this fear of leprosy as being this terrible disease, they had all these images from the bible that it was a sign of satan. -- the solution was to isolate people. let's get them away from us as much as possible. almost like they just wanted the problem to go away. so, in a sense, it was using disease to demonize people. to demonize people as others or less worthy of being treated humanely. >> and to use the disease as a weapon against others. >> right. >> i know that you spent a lot of time down in carville. you very richly described its physical space.

and lovely detail, how peaceful and beautiful you thought it was. take us there and give us a sense of what it looks like, what it feels like, what it smells like, and a little bit about how it came to be. >> ok, let me just first start by saying it began as a state institution. it was the louisiana leper home, which is what they call it. i put that in quotes because i try not to use the word leper if i 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 with leprosy and there was a lot of public pressure on the state to do something about it and to create this institution. initially, the state wanted to build a facility in new orleans where most of the patients were. there was good medical care and

other medical facilities, but when they wanted to build a home, as soon as they picked out a site, all of the neighbors were up in arms and said no. we 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 leper 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 an ostrich farm. [laughter]

they brought these patients in. let me just show you what it looked like. this is the kinds of accommodations that -- let me just go back to this, the kind of accommodations that they were willing to give people with leprosy. so this is a picture when they arrived. those patients arrived in 1894 after coming up the river. this is what it looked like. i did not realize. so this is what they came to. i knew it had been remounted and -- remodeled and renovated. i did not realize this is what it looked like when they actually -- it's actually beautiful now today if you went there today. it's a gorgeous plantation. it was in such bad shape that they actually house the patients in the back, in the former slave quarters, because they were actually in better shape than this plantation was. >> it was a sugar plantation,

right? >> an old sugar plantation that had been basically abandoned after the civil war. so eventually it did start getting built up. the state put money in it. they started fixing it. they eventually, when they first went there, they could not get anybody to come there o 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 it 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. >> >> as i say, they could not get anybody to come work there, and they finally recruited the daughters of charity. and they were the only ones who would do the job. even they were kind of reluctant to come there. they actually did come, and started working there as nurses in 1896. then it gradually started getting built up and fixed up, they started building some dorms, they fixed up the plantation and then at the same time around the turn of the century, they were being in -- being pressure on the u.s. federal government to do something about leprosy patients. ecause there were few high

profile cases of patients, and somebody was diagnosed with leprosy, and everybody freaked out. nobody knew what to do with them. and people were worried about germs, and they were worried about what the impact might be on the population. and there was a lot of anti immigrant sentiment at the time. and there was a belief that a lot of asian immigrants were bringing leprosy and other diseases into the country. that was part of it as well. so there was a big demand and pressure on the federal government to have a national leprosarium. and that became the u.s. federal government facility in what was in 1921. >> so two things, going back to the sisters of charity and the daughters of charity, they turned out to be real angels, didn't they?

i mean, in the end, there were some of the most sympathetic characters and lovely, caring, loving people to these patients. >> it was kind of amazing, and it was hot and cold, and then there was some patients, especially when the federal government took over, and they started bringing patients from all around the country there. nd you are required, if they diagnosed with leprosy -- >> you had to go there. >> and many of them were there for decades. >> i want to get to this idea again, because you talk about so many different personal stories i think, but in general, i want you to step back and talk a little bit about this population and what the impact on this population was of going there. i mean, some of the injustices that they suffered. being separated from their families, and children yanked from them, and just talking -- just talk in general about the

injustice of all of the whole thing. >> so when somebody was brought there, in a sense they were treated more like inmates, then patients. so if you were brought there, against your will and some people did go there voluntarily, because they had nowhere else to go. they thought they would get care. but if they were brought their against their will, there was a big fence around. >> it was barbed wire. >> yes, barb wired 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 usinesses or jobs. and as you mentioned, they lost the right to vote. because in the state of louisiana, if you are resident and in an institution like

this, you are not allowed to vote. they were seen as inmates. and the other thing, was many of them these patients, they were encouraged to take aliases when they went there. because of the shame that it might bring upon their families. so when you came there, when you were first admitted, you know sister whatever, would say you should, you know, what kind of alias would you like, and you know that was just another sign of the dehumanization of those patients. they were treated like you are somebody to be feared. a lot of the patients were nown by their case numbers, by then -- then they were by their real names. but the interesting thing, when the federal government took

over, and said these patients were coming from all around the country, eventually they started, building a community for themselves. an incredible world inside of carville. because it turned out, simultaneously like a prison and a haven. because inside carville, the patients treated each other with lots of respect. and they knew that it was not that contagious. they could tell because nobody whoever worked there, ever contracted the disease. so it was a real haven from the outside world where they were not treated very well. so the patient's built this incredible community for themselves. they started having sports teams, and bands, and plays, and because it was louisiana they had mardi gras parades, that was a big thing every

year, and they had their own newspaper. >> yeah, and i want to talk about that, and you have a pitch -- a picture, 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 cafe -- bar or café, didn't they? >> yes, a lot of social activity and go ahead. >> 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, hey had to have something to hope for and to live for and that they needed to have a community. because this was not just a

hospital. it was their world. so they did have a lot of you know, theater, and they have these facilities. they also had a little bar, and they had dances. and let me share this one picture with you. this is a picture, and this was later on, and we think was probably the late 1940s. >> yes, you can tell from the dress. >> and you can see, this is like an incredible group, and we're talking this is southern louisiana right, and look at that bar. look you see black patients, you see white patients, you see asian americans. you see hispanic patients and it was incredibly their own world. and you 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 it really brought all these people together. but they come from diverse backgrounds, and the carville, you know, the patients were a cross section of america. there are rich people, poor eople, 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 how it became this refuge for people, who suffered discrimination and stigma in the outside world. i think it was betty, who said sometimes easier just to leave the past behind. was that betty parker or was that somebody else? i was struck by that quote. it could've been her, it could've been her. >> she came, and she was a teenager and she was from a neighborhood and, high society neighborhood. >> yes, she was a new orleans debutante, young woman, engaged to be married and she just you know, life just looked like it was wonderful and perfect for her, yet she had some little rash, and i think it was actually on her thigh, and she's gone to a doctor and as unbeknownst to her, he

diagnosed her as leprosy. it is leprosy, and told her parents. and the doctor recommended that she go to carville because she had a number of younger siblings, and they were worried that she might spread it to them. she went to carville, has this -- as this young woman and was terrified. >> they thought it was just going to be like six months at the time. >> right, and her parents said well, you'll be back. >> right, yeah, everybody was saying that, but of course she went there and it turned out to e much longer than six months, and she eventually will first she ended up having to break up with her fiancee will lay broken off their engagement,

and she met harry martin, and they fell in love. the problem was, at carville, you were not allowed to get married. they separated men and women. >> men and women are separated, and they did not know what to do, and finally harry decided that he was not getting any better at carville, and he wanted to escape. >> a lot of people did. >> there was something called the hole in the fence. this fence that was around, and there was one area over in a corner far away from the main gate and the patients had lifted up and people would escape their -- escape there 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. >> although at some points if people stayed and were caught,

they were brought back and put in a jail. so harry decides that he wants to leave and escape because he feels like he is not getting any better and he convinces etty to go with him. actually, her parents convince her to go with him. and she decided, this is after several years there, and decided she is not really doing anything there, so they do escape and they go back to new orleans. they had aliases. betty and harry were there airless is. and they came back and use their real names. they try to have a life for themselves. and they do get married. but they find it very hard to live on the outside.

they are always fearful that somebody is going to discover that they were at this leprosy place and they had leprosy. and eventually, harry starts getting ill, and so he says i think i need to go back. and betty says, well i will go with you. 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. >> i knew he was, but i didn't if she was. >> i think the girl jail, wasn't bad, it was like a room but close. they were not allowed to live together. there was a lot of this, a lot of people who fell in love at carville because this was their world and there were people there who understood them. >> right, right, it was everything. i think it was betty parker who said, sometimes it is easier to leave the past behind.

it is a very sweet story, the two of them. she was very much in love with him and they supported each other and they were like in the community. > very much so, yes. 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. >> 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 pam fessler, she's a correspondent who had just written an amazing book, called carville's cure. 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, you know as a around to the 1960s and we talk about this later but, we eventually had a cure for the disease it was found at carville, and patients started getting better, and people were eventually allowed to leave, but many decided they wanted to say there because it was their world. it was home. it became their family. i was in fact able to interview people who had lived there.

they were patient there. and also we have when i started writing the book, this isn't, his 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 they 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. >> that puts an amazing human face on this story. >> and i was so lucky because some of the patient's like betty martin wrote memoirs and talked about their lives. that was so much wonderful information about what it was

like to live at carville. and to go through this experience, and as i mentioned there was this newspaper that patient started. >> let me ask you about natalie stein. i want to ask you in your chat, at the bottom of the zoom, fetus -- feed us some questions and i will make sure that we get pam to answer some of the questions. some of the people of already have done them. -- tell us about stanley stein. >> she is a young man, he arrived in 1931, he's a pharmacist in texas. he's a brilliant person, love to -- loves to write and when he first got there he saw the patients and they were listless

and hopeless, and he was really retty determined to do something about it. she did not want to become what he said one of the living dead, which is how he saw some of the patients there, so he asked if he could start this patient newspaper and initially it was four sheets and they talked about things like the sunday menu, what movies were going to be shown, but before too long, the patient started writing articles that were a lot edgier, and they started questioning the federal government and why was there policy to confine 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 freedom for the patients. and stanley stein was extraordinary. he started writing letters to companies that use the term leper in their advertisements, saying we are not something to be despised. he was the one trying to get people to call it henson's disease, instead of leprosy. named for the doctor who had found the bacteria. >> the germ. >> and eventually, this newspaper started to getting circulation outside carville, partly because of the american legion, they adopted carnival as -- carville 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. >> across the country. >> right, and the world actually. so the patients started saying, we should not be treated like inmates. why don't we have the right to vote? and it started having an impact, not only inside carville but around the country. >> yeah. >> because of stanley stein, eda betty martin was another person who worked on the paper. they became quite outspoken advocates for themselves, and

to me that is the most incredible part of the story. how these patients turned this terrible situation into this incredible campaign. >> yeah. >> the resilience of people who are put in a situation. >> yeah, because they could have gotten very lethargic and depressed and inactive. let me share this question one of the audience members as spirit 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, where their parts highly at risk of infection and if not why not? >> i am sorry, parts? >> i guess parts of the body. >> it is interesting because people think of leprosy as a skin disease but it is actually more of a disease of the ervous system, because the germ attacks the nerves. usually what people start

feeling initially is numbness n their hands and feet, and it starts affecting muscles, which may be get people into one of the symptoms is clawed hands that people get. eople 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 -- it attacks the whole body.

but there are different strains of v -- of leprosy it also affects people very differently. somebody like betty martin, she never really developed much ore that these little rashes on her skin. quite 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 appearance, which of course is one of the reasons why people here to unseat so much because, they could be repulsive. >> it is actually a small percentage of those who basically get this. >> when i showed you the picture of that bar.

you would never know really. 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 oes happen, i talked about this numbness that people have in extremities, they can get damaged. they can injure themselves. right, step on a nail. >> or a burn on their hands. and what happens over time, with the damages, their fingers, toes, and sometimes it leads to amputation, but it is really the numbness causing most of the symptoms that they have.

>> here is another question. i believe leprosy cases are taking up today. is there a reason, and what is treatment like today? is there still a degree of isolation associated 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. it had been going down. there is a slight uptick overseas i understand. i do not think it is a huge increase, but it is an increase. 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 within 48, 72 hours, and may be within a year, there is 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 do not want to admit they have it. >> 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. in india there are places where people are colonized away from the community. that is the sad thing. it is so totally curable, but because of the stigma, it has not been eliminated like you probably could be.

>> i think india and china and indonesia, places like that. >> mostly india, brazil, and indonesia are the three main ones. and as i say there are still about 200 new cases a year in the united states and even those people -- one of the things i learned is those people cannot be treated. there are outpatient there are outpatient clinics. people can get treated. but a lot of those people, a lot of those patients in the united states today say when they first heard their diagnosis, they considered suicide. today. that is because they were so worried about how they would be treated by their community and by their families.

>> yeah, and the stories that you tell in the book about people and families, married people that ended up in a house where they had a brick wall and a mom and the children are on one side and he had to stay on the other. that was on the campus. >> that was actually early and that is before they started the federal facility in washington, 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 -- >> that was the beginning of the discriminatory attitude. >> the federal government was pressured to do something. so we do not have to have people like john early in it. >> i was struck by the story of these two children, nine and 11 years old, frank and haley,

whose parents took them to carville. it was heartbreaking. one of our audience questions, is leprosy common among children or at least as common as among adults and how are they treated? like you say, the community had everyone from children to elderly. >> right, there were quite a few children at carville. it was believed, and i am not 100% sure about this, but it was certainly believed then 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 that other 5% that is susceptible. so what happened is you have the disease, if 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 of numerous children in the same family. not only did they have the same susceptibility but they also had all of this close contact over time. >> wasn't there a family where five kids came? >> yes, the landry family, all five of their children, when they grew up over the years, they ended up at carville. but there was also, 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. >> that man died at carville at the age of 91. he lived there from the time he

was a seven to the time he was 91. >> wow. >> in the latter years, he stayed because he wanted to stay there. >> right. >> what happened is some of the older patients would adopt these children because they had been taken away from their parents. >> yeah. >> so they would take them and raise them as their own so they would have at least have some adult figure in their lives. >> family feeling. yeah. jose ramirez came as a young child and wasn't there a couple that adopted -- >> i think he was 19. he was a teenager? ok. he was one of the activists. he was a fiery person. breaking the rules. i want to give audience

questions an opportunity to be responded to. i take it betty parker came from a well-to-do family. it poorer populations you are at greater risk? >> it was at the time. there were some very well-to-do people who contracted the disease. i think now we are seeing a little more that it is people who are poorer, and i think a part of that is people's immune system might be weakened because of the way that they are living and that makes them more susceptible to the disease. it does seem that in areas where people are poorer that it is more common. >> today. >> yeah.

then, it is much wider. >> 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 patient and disease biology. armadillos are one of the few animals that get it. and at one point, they thought it was transmitted through armadillos, right? >> we do believe that some people who get it, maybe from eating armadillo meat, especially in brazil where it's fairly common. but the armadillo is the only animal other than humans where leprosy can be contracted. that woman is right, there is a wonderful museum down there and if people want to go see it, and

the institution quite frankly looks a lot like it did decades ago. it is a big, beautiful facility and it is now a louisiana national guard site. 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, how the patients lived, and then there is the cemetery in the back of the grounds. 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, would not come to give patients last rites? >> that was right at the beginning.

>> that changed. a more well-known leprosy isolation site is in hawaii. it is a national historical park. is it related to the louisiana site? >> not really. the only way it is related is it was actually the creation of the colony on the island, which was in the mid-1800's, 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 will be able to eradicate the disease. it wasn't done for all terrible reasons. there was a belief that 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 was look at the experience at the island, and we now know that this policy of isolating people actually 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 their families and the disease has a very long incubation period. it could be up to 20 years. >> oh my goodness. >> from the time you first feel symptoms. if they were going to infect anybody else, they would have done it way before they were brought to carville. but people did not know that at

the time. >> no, and people with tuberculosis and all these other things were walking around at the time and some of them were sent to sanitariums. 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 to tell their friends. and they would go off and say, well they got tb and they had to go away. another thing that cracked me up, they are having a mental breakdown and you have to send them away. that was definitely better than admitting somebody had leprosy. >> oh gosh, it is so sad, isn't it. 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, i don't know if you can see the picture there,

but that image that 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 is 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 -- tell me, i might be completely off base here, but the idea that carville as a cure that it did at the same time being this lonely, sad place had this restorative , healing quality to it in this community. and it was actually a cure for some of these patients who really found -- could not find love, community, 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 and to not have the stigma and to have freedom and to be accepted as people who are just ill, not people who have done something wrong and should be penalized for it. and to me, that is the wonderful part of this institution, is that, as tragic as it was, it brought all of 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, the freedom to leave if they wanted to and take treatment. >> when did that happen?

when did they get to the freedom to leave? when did that change? why did it change so they were allowed to leave? >> it was kind of a gradual thing. so this medication that started helping to cure the disease was discovered in 1940, but it really took a few decades before it was perfected and before patients were really showing a lot more improvements, and so gradually, they started allowing patients first to have leave. but they tested them every month, and if they had 12 consecutive tests, then they were able to leave, which actually happened to harry and betty martin. so it was gradual when they

started getting -- 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 i would say about 1960 on. there were no more people who were brought to carville against their will and confined there. and people were eventually free to go. and then at one point, the federal government wanted to start pushing people out because they did not want to have the institution anymore and the expense. that is when the patient said, wait a minute you took us away , from our homes away from our families, and you are going to force us to leave? where are we going to go? what are we going to do?

we are not leaving. you are going to take care of us for the rest of our lives, and eventually that's what the federal government agreed to do. >> and you started to say that, before i rudely interrupted you, that this stigma and injustice persists. >> yeah, you can still see examples of it today. we had a controversy about caravans of immigrants coming from central america. there were some people on tv saying they are bringing all of these terrible diseases. they are bringing leprosy to our country. there were actually saying they're bringing leprosy into the country. you have to stop them. there have been people who have accused in homeless camps, especially ones in places like los angeles, 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 then we still have cases where if somebody is diagnosed with leprosy, there was one a few years ago in some school in california, everybody freaked out. all the parents did not want their kids to go there because what if they get leprosy, even though we now know it is hardly contagious and easily cured. >> it is staggering. well, i think we have reached about the end of the hour. i knew it 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. >> thank you very much, i appreciate it. [captions copyright national cable satellite corp. 2020] [captioning performed by the national captioning institute, which is responsible for its caption content and accuracy.

visit ncicap.org] -- watchingalking american history tv only on c-span3. each week, american history america brings two films that provide context for today's issues. ♪ >> in 1957, pennsylvania attracted international attention when violence arrived did as billy myers junior and his family moved into a three-bedroom house. family is close to the norm. ,hey have three small children one is one month old. myers served for 2.5 years in the army and was a staff sergeant.

he works as a laboratory technician and is studying as an electrical engineer. his wife is a college graduate. their home is modestly furnished and their car was bought on time. normare close to the except in one respect. william myers junior and his negroes in a white community. the town reacted in a number of ways to the new arrivals. there were several hundred who congregated on the street in front of the house and there were those among them who felt strongly enough to throw a block through the window. but there was another large group who were repelled by this kind of behavior and organized to help the town accept its first negro neighbors. >> we were looking for a place to buy a home.

we liked the homes here, we like the advantages that it offered. to beerstood it was going all white, we were happy to buy a home here. >> how about your children? have you talked to them about the myers? >> we have tried to keep the discussion away from the children. that it is something that we adults should solve without bringing the children into it. we are doing it for the children, but i don't feel that they are old enough to understand the problem. familyou think a negro moving here will affect the community? >> definitely. i think that property values will go down if they are allowed to move in here in numbers. >> can you give a basis for that judgment? >> yes. we used to live in washington, d.c. and we saw a good example of that there. >> repetition of an experience that was distasteful.

is there to be no escape from living near negroes, and what of the dream of middle-class respectability? family can afford what you can afford, how do you -- how do you justify your feeling of superiority? the logic of one's own position becomes apparent and self-justification to tribal myths are invoked. what other objections aside from the effect on property values do you have against the myers? >> the whole thing centers around the word integration. he has not in anything but peaceful since he moved in. he has three children. evidently, he feels that they will be accepted socially. i don't feel that they ever will be. but the whole trouble with this integration business is that in

the end, it probably will end up with mixing socially and you will have -- i think their aim is mixed marriages and becoming equal with the whites. announcer: next on american history tv, william jewell college professor gary armstrong discusses the u.s. senate's rejection of the 1919 treaty of versailles to end world war i which president woodrow wilson spent seven months overseas negotiating. professor armstrong argues the president hoped the treaty would vault the u.s. into a global position but the political , divisions created by a flu pandemic, a red scare, racial unrest, and wilson suffering a stroke contributed to his failure to achieve ratification. the national world war i museum and memorial in kansas city, missouri hosted this event and provided the video. moderator: our guest speaker teaches american foreign policy