Kamilah Kashanie (KK): Whenever people talk about something that makes them stick out or feel marginalized… sometimes you’ll hear the offensive phrase… ”I felt like a leper”….
Over the next two episodes…we’ll hear from a few people actually living with this stigma… and how it’s affected families through generations…
Lionel Kaawaloa (LK): They don’t want to talk about leprosy. That’s a dangerous word. Yeah… Forbidden to talk about it.
It’s the StoryCorps Podcast from NPR. I’m Kamilah Kashanie.
KK: Leprosy is probably the most stigmatized disease in human history …. But the honest truth is that most people don’t know anything about it.
What is it exactly? Does it even still exist? Wasn’t it eliminated…like, centuries ago?
Well, Leprosy is also known as Hansen’s disease… and it’s caused by a bacteria discovered in the 1800s…
It’s been around forever … In biblical texts it’s usually talked about as divine punishment or being impure…
But even though it’s curable now… and most people are immune to it anyway… there’s still this shadow over it…
I’m gonna let StoryCorps producer Jo Corona tell you the rest of this story.
Jo Corona: Earlier this year… I searched the StoryCorps archive for recordings about leprosy… but I didn’t find many… and definitely none from people who have suffered from the disease…
…and so I kept on digging… trying to find people who might want to share their stories with us…
That’s how I learned about Kalaupapa… on the Hawaiian island of Molokai….
It’s the site of America’s first and largest leprosy colony…
Around 8 thousand people have been sent there… ripped away from their loved ones… and forced to live a life of mandatory isolation… and this lasted till 1969.
Almost all of them were native Hawaiian…
This was so common that it was given the name… ”The Disease That Tears Families Apart.”
We’re still in a global pandemic… so I wondered what it had been like for the people sent to Kalaupapa all those years ago…
Turns out… nine of the original 8 thousand who were sent there… are still alive.
They are all in their 80s and 90s— and they still call the settlement home…
Access to Kalaupapa is even more restricted due to Covid…. and almost no one from the outside is allowed in…
FIELD TAPE JC: [plane engine slowly revving up] Okay. The engines are turning on. [plane gets ready for takeoff.]
…But after a few of the residents agreed to share their story with me… they let me in…
JC: And we’re off.
I flew in on a hot day in June… and there were two people already waiting for me as I got off the plane…
ADL: Okay [car door closes] Well, I’m Alicia Damien and that’s Barbara Jean.
BJW: I’m Barbara Jean.
JC: I figured, well, I knew Sister Alicia from the photos.
JC: Nice to meet you.
BJW: Yeah. We’ll see your face eventually. [Laughs]
JC: Of course, I was wearing a mask.
And I couldn’t stop thinking about the irony… that they were sent there to keep the outside world safe, and now all these years later, it’s the opposite.
They have to keep themselves safe from the outside.
My guides are two Catholic nuns… They minister religious services to the remaining former patients and residents of Kalaupapa…
They met me at the edge of a short airstrip by the sea…
I put on my visitor’s badge… and we drove away from the airport…
ADL: The peninsula is surrounded by the ocean on three parts and then the high mountains on the fourth yeah. So there was like no way that people could leave here once they were brought here.
JC: Eventually though, they could.
But after the mandatory isolation was lifted in 1969… some people decided to stay …
Now people in Kalaupapa… they live life like the rest of us…
For example, sister Barbara Jean showed me some of their local news…
BJW: Well, right now we are sitting in front of our settlement bulletin board. So 2022, Covid: And we have no confirmed cases as yet. The next item is the seal pups that were born and that would be seven so far.
JC: A little while later, I was walking around and I bumped into someone.
JC: Hi. [inaudible] I just saw Lionel. [inaudible]
JC: 77-year old Lionel Kaawaloa first came to Kalaupapa when he was hired to do some road work in the 1980s… so he’s not a former patient…
But he later learned one of his family members was…
He remembered that time in his StoryCorps interview…
Lionel Kaawaloa (LK): My cousin Boogie was four years older than I am. His first name is Clarence.
He was really playful [Laughs].
And there didn’t seem like there was something wrong with him.
So I think I was about seven or eight years old. And the Department of Health came to the house and they brought us out one at a time, and they inspected us. Started from the oldest to the youngest. They were looking for the bruises. That thing eats you from the inside out.
The next day when we went to school, Boogie was missing.
It just, like, you wake up one morning, go to school, and you look around and says, somebody is missing. But we don’t ask questions when we’re kids.
You know, I didn’t know when I was a small kid that that was happening. I think my older sister knew but my mother told her not to say nothing. So I didn’t know where Boogie was.
JC: Thirty years went by… and by the mid 1980’s, Lionel was a grown man.
He was hired to do some repair work at the top of the cliff that overlooks Kalaupapa…
LK: One of the boys says, ‘I think you have a cousin down there.’ I said, ‘Well, I can’t do nothing. I can’t go down.’ But I called my mom. She said, ‘Yep, you got a cousin down there. We didn’t tell you because you were young.’
When I found out, I was feeling sad about what they got to go through? And I feel like I should have been there, too, you know? Because we all came from the same town. We all went to school. We all eat each other’s lunch. Why didn’t we get it, too?
JC: Lionel couldn’t just go down into Kalaupapa and see with his own eyes… Even for locals, access to Kalaupapa was restricted.
But eventually, he got permission.
LK: I came back again and I met Boogie.
Back then, they didn’t want you to mingle with the patients.
So, yeah, I hate to say this, but we did hug [Laughs]. Yes, we did, just like two brothers.
JC: After that, they stayed close, up until Boogie’s death…
Clarence “Boogie” Kahilihiwa died in 2021… he was almost 80.
After the break… we’re going to speak with another person close to Boogie… his widow.
Stay with us.
FIELD TAPE: [Ocean waves]
JC: After my first day, I walked around and came across a rocky black beach.
JC: First day in Kalaupapa, Molokai. And honestly, it’s been a little bit overwhelming.
I mean, it’s like being in the middle of paradise, but completely isolated.
I’m looking at the cliff right in front of me that kept patients in here; the natural prison that this place was and um…
JC: The policies that separated families went on until the ban was lifted…
But the thing that breaks my heart…is that children born in Kalaupapa… were taken away from their mothers at birth out of fear they would catch leprosy… or “the sick” — as it was called.
… To this day, children under the age of 16 are not allowed into Kalaupapa because of how triggering it could be for a former patient to see a minor…
…which leads me to my next interview…
JC: Yeah, pretty sure it’s this way… Just me walking for my very cute jumper because I wanted to be presentable for Ivy.
JC: 86-year-old Ivy Kahilihiwa was diagnosed with leprosy when she was a teenager… and was sent to Kalaupapa in 1956…
Ivy Kahilihiwa (IK): I had one more year in high school, and I couldn’t make it. I had to go to the doctor because something was wrong with me, my hand and my face. So the doctor told me, ‘I have a secret for you. You have to go but I’m not going to tell you where.’ And he said to my parents that I have to leave them.
So I don’t know how many years go by but I’m still here. This is my home.
JC: Ivy’s biggest hardship was not being able to raise her children…
She had three kids from prior marriages… but as was the policy… they all were taken at birth and placed with other families…
They were able to stay in touch over the years… but it was complicated…
Ivy sat down to talk with her granddaughter, Jessica Sanchez…
Jessica Sanchez (JS): The whole time we thought that oh, you never liked mom, you know, like.
JS: So uh, when we used to come down, I was like, why got to go with grandma Ivy for? She never liked mom, so why I got to go? But at the time, you know, we young, dumb, don’t really know, so I’m just happy that I got to learn.
So how did it make you feel when you heard I got the job in Kalaupapa, that I was coming for work?
IK: My dear girl, I was overwhelmed. I thought to myself that I’m going to have my granddaughter work here. To see her.
JS: Do you think me and you got closer since me being here?
IK: Yeah. I think so. I don’t know. [Laughs]
JS: We are. We are. [Laughs] We are much closer now. Besides being with you, my other favorite thing is just being in Kalaupapa, and getting to know the other patients better.
JS: And, you know, just keeping that memory that nobody else going to get.
IK: Yeah. Yeah.
JS: You know, if you don’t get to meet the patients, you never experience Kalaupapa.
IK: You’re the lucky one. Yeah. [Laughs]
JS: Thank you, Grandma, for coming.
IK: And thank you for being here.
JS: [Laughs] Mm hmm.
IK: I’m happy for you to come down here and you happy to be here with me.
JS: Oh, yeah, I am.
JC: Ivy’s story gave me a tiny glimpse into what forced family separation was like for the parents of children born on Kalaupapa…
But what was it like for the kids?
Doug Carillo grew up on the island of Maui and he remembers when they came to take his father away.
Doug Carillo (DC): I was like 6 years old and somebody came to pick him up. We were all gathered on the porch watching him leave and we were all crying.
That was really the hardest part of my life as a younger child. He did contract leprosy and he was sick. That’s why they took him away.
And we all were very very hurt because he had to divorce my mother. You know, you cannot be married to somebody that’s in Kalaupapa. And when he left, my mom had a hard time trying to raise us. We were always scraping for things to eat, because she wasn’t making no money.
JC: His father spent six years in Kalaupapa… but after being cured he was allowed to leave.
DC: Dad called my mom and asked her if he could come home. And of course, she was flabbergasted because already they were divorced.
But my mom still loved him, so he came back home and he was missing a couple of fingers. And then his index finger and the baby finger were strange looking, you know? Like a claw.
So Dad was home and it seems like in a couple of months everything started to come back to normal.
But you know, he just said, ‘You have a sister. But she’s been adopted. She was given away.’ And that was it. That’s all we knew.
JC: During those six years on the island, Doug’s father had a baby with another patient.
And like we heard with Ivy’s story… that child was taken away.
Linda Mae Lawelawe (LL): I was that girl that you guys didn’t know about… And finding you took 55 years.
JC: Next week , we’ll meet her…
KK: This episode of the StoryCorps podcast was produced by Jo Corona and edited by Jarrod Sport, who is our Senior Producer. Our Lead Producer is Eleanor Vassili. Max Jungreis is our Associate Producer. Our technical director is Jarrett Floyd, who also composed our theme song. Our fact-checker is Erica Anderson. Our story consultant is Jasmyn Morris. Special thanks to Ben DeHaven.
To see what music we used in the episode… go to StoryCorps – dot – org… where you can also check out original artwork created for this season by artist Lyne Lucien.
For the StoryCorps podcast, I’m Kamilah Kashanie. Catch you next week.