ville's cure: leprosy, treatment and fight for justice." it looks at the history of america's hospitals for leprosy in louisiana which began operation in 1894 and closed in 1999. the kansas city library hosted the video. joining us is steven wolf from kansas city. >> i'm the director of programming and marketing at the kansas city public library and my job is to take care of a couple housekeeping items before i hand things off to two women who are far smarter and far more entertaining than i am. if at any point you have questions for the author, you can put them in our chat box and we will get to as many as we can. if you would like to purchase the book, and we hope you will, it's available through most retailers but we at the kansas city library like to point people to book shop.org.

you can find any book you're looking for and support independent book sellers across the country. with that out of the way, let's get started. you'll probably recognize the voices of both of our guests tonight but our host is laura ziegler, a national npr reporter covering the midwest. currently she's producer and community engagement reporter as kansas city affiliate kcur. laura, thank you very much for joining us tonight. >> you're welcome. good to be here. >> and i'm jumping in now, i guess. i'm delighted to be here and introduced you to pam fessler, who is an award-winning journalist at npr. she's covered poverty and election issues, voter issues for many years. now in the tradition of npr journalists who you recognize as

excellent storytellers, podcasts and online, she's proven the ability to translate that ability to tell stories on the radio, to the platform of the printed word and, of course, a book. her new book "car ville's fear, leprosy, stigma and fight for justice." i'm delighted to have the opportunity to talk with you, pam. >> thank you very much, laura. i really appreciate it. one thing laura did not mention when i first started at npr 27 years ago, i was the midwest editor and one of the people i edited was laura ziegler. i'm so pleased. >> best editor i ever had. >> the best reporter. anyway, again, it's so much fun to have you here. and it's such a fascinating book. leprosy is a topic we don't really hear very much about. we don't know very much about. i think it's probably safe to say for many of us, it kind of

lurks in our consciousness, unfortunately, a pejorative connotation just because of the history of the everyday use of the word. i bet it's 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. so i want to kind of start the discussion there. you found to your surprise one of the most recent references to the word leper was in an npr interview you were disappointed. >> you read the end notes, didn't you? >> is that where that was? i read it cover to cover. you were disappointed to that, because you make the point we don't really use the word lepers anymore. and for good reason. it really kind of gets to me to the heart of what a lot of what story is about, the myths, discrimination and justice.

>> right. and exactly initially i was going to call the book "stigma" because i believe that's what it's really about. the word leper or the word leprosy just has so many connotations, and as you point out, we use it today to talk about things that are to be despised. why somebody is treated like a leper and there's so much that is weighing on these words that, in fact, the people who had this disease or still have the disease, there are many, 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 it's actually the main focus of the book in a lot of ways. >> yes. >> fighting against the stigma, because very early on in the book, it's actually one of the

least contagious diseases in the world. and 95% of the human race can't even get it. and the 5% who can get it can only 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 had this institution. >> yeah, that's fascinating. i want to back up for just a second. there's 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 husband's father, and so -- >> your husband's 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 father-in-law 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 wasn't even quite sure what had happened to him. he knew -- he knew that he had died a few years later, but he wasn't 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 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, what we were talking about, was so great that it would destroy the family. and so, he didn't. he didn't 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 shouldn't 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 sister-in-law did a lot of the research too. so, we took my father-in-law 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 stru institution. it's such an incredible place and the stories are incredible. and i realized when i started doing some research that it wasn't, you know, matt's 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, there's so much to so many of these stories, and like you say, it is about the stigma and the discrimination. i just -- because we're 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, we're hearing more and more about it and there are -- there are a lot of differences, of course, but i'm 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. >> that's okay. you're frozen for me. did you hear my question? >> the last part, i didn't. >> well, i'm 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 wasn't, and i think there's some similarity to today in that we don't know exactly how covid-19 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, let's isolate these people. let's 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 couldn't -- 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 these people anywhere near us. >> not in my backyard. >> right, right. so, they didn't 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. >> that's 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 didn't realize. so this is what they came to. i thought it had been -- i knew that it was remodeled and

republic renovat renovated. >> it's actually beautiful today if you went there today. it's 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 couldn't get anybody to come there to care for the patients. >> because nobody wanted to be associated with them. >> it's in the middle of nowhere. you asked me the describe the place. it's -- it was 350-acre 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 it's, 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 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, yeah. >> and as i say, they couldn't 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 high-profile 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. there's also a lot of anti- anti-immigrant 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 couldn't 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, didn't 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. >> that's 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, don't 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, didn't 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 people's world. the patient's world. you needed to have a community because it wasn't 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 asian-americans, you see hispanic patients. it was incredibly eclectic world. >> diverse. >> diverse world that you didn't 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 cross-section of america. there were rich people, there were poor people, there were people who were highly educated, you know, ph.d.s. 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. that's 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 you're talking about of carville, how it became this refuge for people that had this -- suffered this discrimination and stigma. >> anyway -- >> i can't remember exactly. >> well, she came -- she came as a teenager, right? she was a very -- from a -- >> yeah. >> yeah, specifically in new

orleans debutante, a young -- 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 before he told her. he 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. 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, you'll be back. >> everybody was like, it's 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. eventually, she met a young man, harry martin, who was also a patient there and very similar -- and the problem was, at carville, you were not allowed to get married. >> they separated -- they separated men and women, right? >> the men and women lived separately, and you know, they didn't know what to do, and finally, harry decided that he wasn't getting any better at carville, and he wanted to escape. >> a lot of people did. >> people did. there was something called the hole in the fence.

there was one area over in a corner, kind of far away from the front gate that the patient 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? they kind of knew about it, it was just sort of, like, okay, we won't talk about it. >> although at some point, if people escaped and were caught, they were -- and brought back, they were actually put in a jail that was inside. >> right. >> but anyway, so, harry decides that he wanted to leave and escape because he feels like he's not getting any better and he convinces betty to go with him. actually, her parents convince her to go. there were several years there, 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 use their real names, they try to have a life for themselves there. they, in fact, do get married, but they find it's very hard for them to live on the outside. they're always fearful that somebody is going to discover that they were at this leprosarium and had leprosy. and eventually, harry starts getting ill, and so he says, i think i need to go back. and betty says, well, i'm going with you. i'm 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 to serve their sentence. >> i knew he was. that's right. >> he went first. i think the girl jail wasn't quite as -- i think it was just a room with -- >> horrific, though, just underscores what a

penitentiary-like experience. >> not allowed to live together then. they were once again separated. but there was a lot of -- there was a lot of people who fell in love at carville because this was their world, and there were -- there were people there who understood them, too, and -- >> right, right. it was everything. yeah, i think -- i think it was betty who said, if i'm not mistaken, sometimes it's just easier to leave the past behind. it's a really sweet story, she was really in love with him and they supported each other and they were like a community. >> very much so. >> i just want to remind -- go ahead. >> no, i'm just going to say, and they were part of this community. what they started doing and that was the second part of the story, the patients ultimately decided to start a dance. >> yeah, yeah.

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 "carville's cure." "carville's cure: leprosy, stigma, and the fight for justice." it's just an incredible story of this leprosarium that was in louisiana, carville, and 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 don't 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 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. >> that's amazing. puts a face on this incredible story. >> yeah, no, it's amazing. and i was so lucky because the patients -- some of the patients wrote memoirs. >> yeah. >> that was just so much wonderful, wonderful information about what it was like at carville. and to go through this experience. and then, as i mentioned, there was also this newspaper that the patients started. >> i want to ask you -- let me ask you about -- who started the newspaper. 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 we'll 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 discriminated against around the 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. >> he's 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 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 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 these people. they had this disease that was not that contagious, when people who had infectious 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 was trying to get people to call it

hanson's disease instead of leprosy, named after the doctor who had found the germ, the bacteria. >> and actually, this newspaper started to get outside of carville, and it was partly because the american -- carville as a cause because -- and they were the first to start subscribes to the paper and before you know it, 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, 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, you know, inside

carville but around the country. >> yeah, yeah. >> and it was because of stanley stein and betty martin was also one of the original writers. >> advocates for themselves. and to me, that's 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. it's -- >> yeah, because they could have gotten very lethargic and depressed and inactive, and they really became advocates. let me share this question at one of the audience members asked. as a nurse ahead of time, i knew nothing about the 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? >> i'm sorry, were there parts that were -- >> i think were there points or parts highly at risk for infection? parts of the skin, maybe? >> right. it's interesting, because people think of leprosy as a skin disease but it's 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 it's affecting -- gets people into, you know, one of the

symptoms is sort of clawed hands that people have. it also does eventually develop -- people might get lesions on their faces and their skin. so, it's not so much that there's a part of the skin that's more susceptible. it's 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. it's 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 it so much, because in some ways, it could be very repulsive to look at. >> actually, that's a relatively small percentage of those who contract it. >> i would say it's 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 once, if i could just mention, you know, people have this image of victims of leprosy losing their hands and their feels 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 -- >> and not know it. 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, the damage, 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. >> here's 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, through casere are cases year in the united states but there are 200,000 made every year around the world, and there has been just a slight uptick overseas that i understand. i don't think it's a huge

increase, but it is an increase, and the very sad thing is that we now have cases where a patient is -- if you are diagnosed and start taking this medication, which, in fact, goes back to what they discovered at 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 -- they don't admit they have it. they don't -- if they suspect that they might have it, might not go seek any kind of treatment. and in some 34r5places in the w 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 community. and that's the sad thing. so, because of the stigma, you know, it's not been eliminated like it probably could be. >> and then i think india and china and indonesia -- >> yeah. mostly india, brazil, as i say, there are still 200,000 cases in the united states and even those people, you know, one of the things i learned was that those people can now be treated in outpatient clinics so instead of carville, people can get treated at hanson's disease clinics by the federal government.

but a lot of those -- say when they first heard their diagnosis, they considered suicide. today. and it's because they were so worried about how they would be treated by -- >> married people that ended up divorced. >> one side and he would stay on the other. that was on the campus or on the -- >> no, that was actually before they started the federal program in d.c. he was -- that emerged and nobody knew what to do about him, and that's when the federal government --

>> that was the beginning of the discriminatory attitude. >> the federal government was pressured to do something. we need to -- we don't have to have people like john early, you know. >> 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 asks, was leprosy common among children or at least common as among adults and how were they -- the community had everyone, children to elderly. >> right. there were quite a few children at carville. it was believed -- and i'm not -- i'm not 100% sure about it -- certainly children were more susceptible to the disease, and what you have, as i

mentioned, genetically immune to the leprosy and you have that other 5% that is susceptible so what happened is the disease, if one member of the family got it, there was also -- there was a high likelihood that other members of the family get it so you did see these happen to numerous children in the same family. >> they had the same susceptibility. >> but they also had contact over a long period of time. >> wasn't there a family there, like, five -- >> all five of their children grew up over the years. they ended up at carville. but there were also -- there was this young boy named oscar, which i mentioned in the book, who, when he was 7 years old. he had an injury in his foot, he

went to the hospital, and the doctor looked at it and said, you have leprosy, and they brought him to carville. and actually -- >> right, right. >> that man died at carville and he was 91. he lived there until the time -- of course, in the latter years, he was there because he wanted to stay. >> right, right. >> but what happened was surgeons would adopt these children because they were separated from their parents. >> yeah, yeah. >> so they were kind of with them and raised them as their own. the adult figure in their lives. >> family feeling. yeah.

i think there was a couple that adopted this young jose ramirez as a teenager. >> yeah. but -- >> he was one of the activists, breaking the rules. >> right. >> i want to give the audience questions an opportunity. from a well to do family with leprosy felt -- is it poor populations who are at greater risk? >> as i mentioned, there was there were some very wealthy people that contracted the disease. i think a little bit more now we're seeing that it's people who are poor, and i think part of that is that people with a weak immune system might be

weakened. that makes them a little 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. >> this is another question from the audience. i had the opportunity to visit the site. there's 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. there's 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 -- they use it for training and classes. but there also is this museum there, and really, you can learn this extraordinary history. how the patients -- and then there's this other -- 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 priest, at one point anyway -- >> at the beginning. oh, yeah. yeah. >> a more well-known -- another question. a more well-known leprosy isolation site is in hawaii. is it historical as the louisiana site? >> not really. i mean, the only way it's related th related is that there's 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

people, and there was a belief at the time in the medical -- isolate these patients that we, in fact, will be able to eradicate the disease. so, it wasn't all -- it wasn't done for 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 didn't 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. >> if they were going to infect anybody else, they would have done it way before they were brought to carville. so, you know, but people didn't know that at the time. >> no, no. people with tuberculosis and all these other things were walking around and those weren't the two sanitariums but a lot of people with a lot more contagious diseases did not have that stigma attached to them. >> and interestingly, when people were sent away to carville, sometimes they didn't -- their families didn't know what to tell their friends when it happened and they would often say, oh, well, they -- another thing that really cracked me up. they would say, oh, taking a little break. >> like that's better. >> that was definitely better than admitting that somebody had leprosy. >> oh, gosh.

it's so sad. and i have to say, after reading the book that a long time, i'm going to show this again, i read the book and i looked a long time here at the cover. i don't know if you can see the picture there. but that image that you chose for the cover, i just find haunting. sitting by themselves or looking out the window and another man is being treated by one of the sisters, the photograph, and it's sad and lonely feeling that you get looking at the photograph. and then you look at the title, and it struck me that -- tell me if i'm off base here, but the idea of carville was it did, at the same time, as this sort of lonely sad place have this restorative, healing quality to

it because of this community. >> it was, actually. >> it was a cure for some of these patients that really found -- could not find love, acceptance within their own family, let alone society often. >> yeah, i mean, for me, the cure and the fight for justice is both the physical disease and the physical cure, also the social cure. the right for this social cure and to not have the stigma and to have freedom and to be able 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's the wonderful part of this institution is that, as tragic as it was,

brought all these people together who regular 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 if they wanted to 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's -- for the disease was 1940, but it really took, really, a few decades where -- before it did and before, you know, patients were really showing a lot more improvement, and so gradually, they started allowing patients

first to have leaves, but then if they tested them every month, and if they had 12 tests -- 12 consecutive, then they were able to leave, which actually happened to betty and harry martin. so it was gradual, where they started getting their freedom. back in 1946, after world war ii, because it seemed so far that people who, you know, there were veterans there, so there were people who fought for the country but they could not vote because they had this disease. so they got that back. but the -- i would say about 1960 on, there were no more people who were brought to carville against their will. and then people were eventually, as i say, free to go, and they got better and then at one point, the federal government started wanting to push people

out because they didn't really want to have this institution and that's when patients said, wait a minute, you took us away from our homes and you took us away from our families and now you're going to force us to leave. where are we going to go? what are we going to do? and they said, we're not leaving. you know, you take care of us for the rest of our lives. and actually, that's what the federal government agreed to do. >> and you started to say, before i so rudely interrupted you that yet, this stigma and myth and injustice -- >> 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, they're bringing all these terrible diseases. they're bringing leprosy to our country. you know, we've got -- they were actually saying, they're bringing leprosy into the

country. we've got to stop them. there have been people who have accused, in homeless camps, you know, especially ones in places like los angeles, oh, they're spreading leprosy. you know, this is terrible. and they still use the disease as a weapon against people that, you know -- so it's pretty extraordinary. and then, you know, we still have cases where if somebody's diagnosed with leprosy, there was one a few years ago -- you know, all the parents, they didn't want their kids to go there because, you know, what if they become -- get leprosy, even though we now know it's easily cured. >> yeah. yeah. it's staggering. well, i think we've reached about the end of the hour. i know it went by really fast. it was really fast.

the book is "carville's cure: leprosy, stigma, and the fight for justice. accounts pam fessler is the author. she's a correspondent for npr. it's been wonderful to talk to you. >> you too, laura. thank you very much. i really appreciate it. >> you're welcome. >> weeknights this month, we're featuring american history tv programs as a preview of what's available every weekend on c-span3. in the 2000 presidential election, texas governor george w. bush defeated vice president al gore in one of the most highly-contested races in u.s. history. when the u.s. supreme court stopped a florida recount. this ultimately awarded the state's electoral votes and the presidency to bush. we begin from december 13, 2000, followed by george w. bush's victory remarks. watch, beginning at 8:00 p.m. eastern and enjoy american history tv every weekend on c-span3.

>> every saturday, at 8:00 p.m. eastern, on american history tv, on c-span3, go inside a different college classroom and hear about topics ranging from the american revolution, civil rights, and u.s. presidents to 9/11. >> thanks for patience and for logging in. >> with most colleges -- watch professors teaching to a virtual setting to engage with their students. >> he did most of the work to change the soviet union, but reagan met him halfway. reagan encouraged him. >> we know the press, which we'll get to later, i should just mention, mattingly called it freedom of the use of the press and it is, indeed, freedom to publish things. it is not a freedom for what we now refer to as the press. >> lectures in history on american history tv on c-span3 every saturday at 8:00 p.m. eastern.

>> making the united states in the early to mid 20th century, starting with a major outbreak in 1916 in brooklyn, new york, that killed more than 6,000 people. professor mcmillan also examines efforts by 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 it in advance, this history course looks at responses to disasters in history with an emphasis on research and writing. over the semester, we have examined various disasters from different perspectives. first of all, the psychological and physical problems from jamestown, responses to fires,