Translation – Our Inheritance

Translation by Patrick Moseley

[Flores Simbrón]: No, no, I know that’s normal, you know? Of course I saw that there were young people, adults, you know, that were blind. But I didn’t know how many…

[Daniel Alarcón, host]: This is Flores Simbrón and he lives in Parán, a small town in the Peruvian Andes. When he moved here, 20 years ago, he thought it would be a good place to live and he didn’t pay any mind to what some people were saying: that a lot of blind men lived in that town.

[Flores]: Because blindness is very common here. Then there’s no water. I mean Parán, it says in the Bible that Paran was a desert. Nothing grows, nothing. Just rocks.

[Daniel]: Welcome to Radio Ambulante, from NPR. I’m Daniel Alarcón. Today, the story of an isolated village and a blindness that no one could explain.

Our producers are Marco and Annie Avilés. Here’s Marco.

[Marco Avilés, producer]: Since it was founded, toward the beginning of the last century, Parán has been an isolated village. It’s only 4 hours away from Lima, between tall mountains, and most of the residents are peach farmers.  Aside from the harvest, which mostly goes to the coast, the village doesn’t have much contact with the outside world.

Around the 60s, people started to notice a problem. A lot of men, after turning 50, went blind. The illness affected them from childhood. Mothers noticed their children running into things or falling. And it got worse as they got older. And no one knew why exactly.

[Jessica Palomares]: But in my son’s case, yes, I realized when he started not walking so well. He would want to walk and he would trip and run into things.

[Marco]: This is Jessica Palomares. And her son is now 10 years old. He’s thin and has straight black hair and a few rabbit like teeth. His name is Lucho and he was only 3 when he started stumbling at night.

[Jessica]: And I was saying “Why son? What’s wrong, can’t you see?”. And he didn’t want to tell me: “No mom, no. You ran into me,” that’s what he would say… Then I realized that he would put his hand on the pot or grab the candle…

[Marco]: It happened all the time. Every night, Lucho would trip, fall and run into things. They were little accidents, but they were frequent. Jessica’s husband wasn’t from Parán and the situation was very concerning for him.

[Jessica]: I told him: “No, if we are going to be together we need to be patient with him because my mom already told me, your son is going to turn out like…like your uncle,” she told me that.  

[Marco]: Jessica had three brothers who were going blind. Her husband thought it was a problem with their diet but she knew it wasn’t. Jessica could tell her husband didn’t support her. She felt alone, hurt, and irritated.

[Jessica]: So I made a decision. I said: “What kind of future am I going to have with this man? He doesn’t understand my son” …of course, he didn’t hit me, but he was, he was a, how can I put it, he wasn’t…he wasn’t a good father, you understand? That’s why I left him…He didn’t understand me, you know?

[Marco]: Jessica remarried at the age of 23. Now she’s 30 and she makes her living selling food at a little stand by the new highway. She laughs a lot and she likes joking around with people.

We spoke with Jessica at her mother’s house. She invited us to sit in what, she says, is the most comfortable part of the house: the bedroom belonging to her brothers who are going blind.

There was a mattress, some straw hats decorated with plastic carnations, and a picture of a little girl in a metal frame. We sat down. Jessica tried to explain what life is like with a child who will go blind in a few years, with her son Lucho.

[Jessica]: They can’t see at night… When the sun sets, that’s when the boys who don’t see start to worry… they come from far away, where they are, that’s when they come running home.

[Marco]: Because for children like Lucho, the darkness is thicker. After sun sets, other children’s eyes adjust to artificial light.

But for Lucho and children like him, the things they see during the day become invisible when night falls. Even when they’re lit by street lights, it’s all the same, their eyes don’t see. And everywhere they play during the day suddenly becomes dangerous.

Parán is a collection of elevated houses in the middle of the peaks and gorges of the Andes mountain range. The streets run between steep and rocky slopes. It is hard to walk there for people who can see. Imagine what it’s like when you can’t.

Not really knowing what’s going on—and with no solution— parents like Jessica teach their children to come home before it gets dark. It’s no wonder. You hear stories about blind people who have died from falling off the cliffs.

[Jessica]: When I come home, I worry. “Where could my son be?” It’s because they’re kids, you know? They’re having fun with their friends, they get caught up playing and then they can’t make it home, so I worry.

I have to come quickly to see if he’s made it home, if he doesn’t come home I have to go out and look for him…

[Marco]: That’s how things were. Some young people started going blind, and the village adapted. And no one knew why. Until 2012, when everything changed.  

A mining company started exploring the hills surrounding Parán. The company wanted to get in the town’s good graces. They hired an NGO to find out what their neighbors might need. A doctor from that NGO noticed that a lot of children in the village needed glasses. So then they brought an ophthalmologist to Parán. But when the doctors examined the children, they discovered that it was no simple myopia that was keeping them from reading the board at school. No. What the village already thought was normal—blindness in so many of their men— was extraordinary to the doctors.

The doctors took samples and after running DNA tests they understood that it had to do with a genetic disorder called Retinitis Pigmentosa. It’s caused by a mutation on the X-chromosome, so woman carry the illness but men suffer the symptoms. That’s why they’re the only ones that go blind.

Those who suffer Retinitis Pigmentosa are born seeing correctly. But over time, their retinal tissue atrophies. The retinal cells start slowly dying, as if they were pixels going out on a computer screen. If we imagine that the retina is a circle, they cells dies from the edges of the circle moving inward. The visual fields narrows as if it were tunnel. Or how black and white TV show end by becoming a point on the screen.

Night blindness is the first sign. And as it progresses the visual field disappears until the person only sees white. Not black, just white. As if they were trapped in the clouds.

What’s happens in Parán is very strange. One in ten men has the illness.

To put it another way: Parán is the place with the highest rate of this illness in the world.

[Astedia]: It… it has to do with something being passed down, according to what they say.

[Marco]: This is Astedia, Jessica’s mother. She’s Luchito’s grandmother, the boy who’s going blind. And this is how she understands what’s happening to her grandson.

[Astedia]: It’s like…a running vein that hides. This, it’s… Like something that is inherited, that’s why it’s increasing. That’s how they explained it.

[Marco]: That “they” refers to the doctors who at one point came through Parán. And clearly these professionals didn’t manage to properly explain to the village the cause of the blindness. But what Astedia —and the rest of Parán— did understand was that women carry the disease. They’re the ones who transmit the illness to their sons.

[Astedia]: It’s a nice village and all, but what does that matter? That’s our inheritance here…It’s really sad, lamentable really. Pain…because our sons, our descendants, for example, my grandsons are going to keep on being like this, it’s sad too…

[Marco]: Astedia and many women in the village feel that maybe they would be better off not knowing. Better off not having an explanation. Now, she says, they feel guilty.

[Daniel]:

We’ll be back after a break.

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The news that Parán was the “village of the blind” made it to Lima, and concerned people decided to send help in the form of provisions.

[Flores]: Pasta, rice, milk, blankets…

[Daniel]: This is Flores, Astedia’s husband. Macro continues the story.

[Marco]: Even though it sounds unbelievable, it was the provisions that caused a lot of problems in Parán.

Everyone wanted their share. Blind or not. A lot of Parán’s residents needed a blanket. People in the town had gotten so used to their neighbor’s blindness, they didn’t understand why they weren’t distributing the provisions equitably.  

[Flores]: So they started meeting on the same street, all of the women stood in line. Then…  There’s a lady, her daughter works there, she’s a bigger lady who’s wearing a red shirt. She said: “If you’re going to give this stuff out, give it to everyone or no one,” she said. But I told her: “Look, I told you, this comes for the disabled only.” 

[Marco]: Things got tense. There was a pastor in charge of distributing everything. He was wearing glasses. Flores says the woman went up to the pastor and told him to leave or she would take his glasses.

[Flores]: That’s what she said. And so I said to her: “You already have that. What more do you want?” That’s what I said to her… So during all that, she pushed me, from where I am, she pushed me like this…

[Marco]: Flores fell on the woman. And from there everything fell into chaos. The people of Parán refer to that day as the “provisions incident.” And it may not sound like a big altercation, but for this village which is normally peaceful, it was. It became a crucial moment.

Since then no one has gone back to help Parán. The doctors stopped coming and so did the provisions. Nothing came. Dr. Ricardo Fujita, one of the doctors that visited Parán told us that the doctors didn’t go back because they didn’t have the resources. But the people of Parán see it differently.  They feel abandoned.

Most of the neighbors in the village are evangelical. Flores is too. And he believes that if he and his wife show that they truly have faith, God will send a cure.

[Flores]: Of course, but like I’m telling you, you have to have faith. You have to have enough faith and the Lord heals us. You practically have to cry enough, ask the Lord crying to heal us. And that’s why now I’m telling my wife: “We need to pray enough and we need to fast enough.” But right now like, like I’m telling you, I’m going to do everything possible to sit down with someone from Congress to ask for help.

[Marco]: But what is clear is, the way the doctors see it, things didn’t get better, but worse. Journalists wrote reports in newspapers, radio and TV. Word spread to neighboring villages.

Stories about the blindness were not always told in a good way. In the reports, Parán was a cursed village, punished by God and they even insinuated that the illness is a result of marriages between siblings and cousins.

These rumors have made people in other villages start to look down on Parán.

Some even refuse to buy the peaches the village produces. They’re convinced they’ll go blind if they eat them. Others avoid anything that comes from the village. And the rumors never cease.

This is Jessica:

[Jessica]: Sometimes, in the community, in the district, it’s our turn to hold championships here… a game or an event here, and they come from different villages and they discriminate against our kids. They say “Look at that one, that one can’t see,” that’s how they say it, they discriminate against them mostly…

[Marco]: Even Flores thinks that way, despite the fact that he seems to really love Parán. His sons are losing their sight and he, somehow, has accepted their blindness. But he has started thinking that the place is cursed. He mentioned a recent drought to us that affected the peach orchard and according to him, all of it is connected.

[Flores]: Because there’s a lot of blindness here. Then there’s no water. I mean Parán, it says in the Bible that Paran was a desert. Nothing grows, nothing. Rocks. There was definitely something here before. And that’s why, as they say, that punishment came here. 

[Marco]: During our last day in Parán, Jessica is selling food on the side of the highway. In the village, her son Lucho is playing with his cousin Abiel.

Not long ago they found a nest and took a hatchling from it. Their grandmother Astedia made them put it back in the nest. Now we’re trying to guess what kind of bird it is.

[Lucho y Abiel]: Like an eagle…a falcon…a turkey vulture… a condor, condors eat rotten meat.

[Marco]: All of a sudden, Lucho stands up, starts running and disappears around the corner.

[Abiel]: Lucho’s going singing…

[Marco]: Did he already leave?

[Abiel]: Yeah, Lucho’s going singing…

[Marco]: Call him, call him.

[Marco]: But Lucho is already running home. While we were talking about the bird, the daylight started to fade and Lucho’s vision with it. He did what his mother taught him: run home and try to get there before it gets completely dark, when he can’t see anything anymore.

Now Abiel is running after Lucho. When we reach him, the two boys are in front of Jessica’s house, hiding under a wheelbarrow.

Then they get on top of it and look toward the mountains. As it gets dark, Lucho stops talking. We ask him how far he can see…

[Lucho]: I don’t see anything, all I see is the hill painted black, black…

[Marco]: Do you see that bucket?

[Lucho]: White, I don’t see it, just white…

[Marco]: Do you see me?

[Lucho]: Yes… but I don’t see your expression anymore… I can’t see your face…

[Marco]: No…

Lucho looks toward the mountains with a lost expression as the last rays of light disappeared. He looks lost in the dark. His cousin Abiel, however, gets more agitated and starts talking. He knows that the blindness was what brought us to Parán. And he tries to help us. Even though he doesn’t have any problems with his eyes, he closes his eyes and tells us he can’t see either.

[Daniel]: When we first aired this story in 2014, it was still believed that Retinitis Pigmentosa was an irreversible condition. But now, that could change. The University of Pennsylvania is developing a genetic treatment to help boys like Lucho who still haven’t completely lost their vision. The treatment is in an experimental phase and we still don’t know if it’s going to work, but it’s an important step and it could change the outlook for people with this condition.

Marco Avilés is a Peruvian, cholo and immigrant journalist in the US. His most recent books it “Yo no soy tu cholo” [“‘m Not Your Cholo”], a manifesto against racism on both sides of the border.

Annie Avilés is a journalist and podcast editor.

This story was edited by Camila Segura and me. Mixing and sound design are by Andrés Azpiri.

The rest of the Radio Ambulante team includes Desiree, Patrick Moseley, Laura Pérez, Ana Prieto, Barbara Sawhill, Ryan Sweikert, Luis Trelles, David Trujillo, Elsa Liliana Ulloa, Luis Fernando Vargas and Silvia Viñas. Carolina Guerrero is the CEO.

Radio Ambulante in produced and mixed on the program Hindenburg PRO.

Learn more about Radio Ambulante and this story on our website: radioambulante.org. And after the credits: stick around for a conversation I’m going to have with Jorge Caraballo, our engagement editor.

Radio Ambulante tells the stories of Latin America.

I’m Daniel Alarcón. Thanks for listening.

I’m here with Jorge Caraballo, Radio Ambulante’s engagement editor. So, Jorge, how are you?

[Jorge Caraballo, engagement editor]: Hi, Daniel. How’s it going? I’m here at home, working from my bedroom/office, so that’s why there’s a little background noise. How is everything?

[Daniel]: Very good, very good. The idea behind this conversation is for you to tell us a little about… Well first, I guess: What does an engagement editor do? I think not everyone knows.

[Jorge]: Well, the engagement editor is in charge of creating a community around the episode, around the podcast. Or around media outlet in general. So what I really do is take the work we do at Radio Ambulante and make it more attractive for people on social media, on the newsletter and in all of the different spaces we have to find people.

[Daniel]: What has surprised you about Radio Ambulante listeners?

[Jorge]: Well, I started in late-August, just before the season started, and I didn’t know I was going to find a community that was so…so friendly, so involved and so collaborative. As an engagement editor I am working with  the kind of community you dream about. It’s like the goal for anyone who does the kind of work I do…is to count on the community that Radio Ambulante has.

Because every time we ask a question, a ton of responses come in, every time we put out a challenge, people are ready to participate. And what I like and what makes my work fun is that there is a constant conversation.

[Daniel]: Tell us a little about the innovations that you’ve brought to the team since you joined in August.

[Jorge]: What we’re interested in is incentivizing participation from the audience as co-creators in what we do.

Since August we have created or strengthened several channels that were already there. One –which I really like– is the newsletter: the email we send out every week on Tuesday and Friday. On Tuesday we send an email announcing the new episode and on Friday we send a really cool, really nice email with recommendations for the weekend. So, the Radio Ambulante team says: “These are the things that inspire us, these are the things we like, that stand out to us, that influence us. We hope you enjoy them too. Get the most out of your weekend and spend a little time with this.” And the newsletter has been going really well for us.

In the same vein, there’s another innovation or another, well, strategy that we are using and that’s Whatsapp. We have a Whatsapp number. We have a Whatsapp number, it’s a red phone, a red iPhone that Camila Segura kept in a drawer because she had gotten a new one. And this Whatsapp has been incredible, because people subscribe voluntarily, they send us a message and say: “Hi Radio Ambulante, I want you to add me to your contacts list.” And we made a broadcast list which at the moment has more than 160 people. And every Tuesday I send out the episode there and people  —if they have a question about the episode, if they have a question about producing the podcast, if they want to ask for a recommendation— they can do that directly. And we always respond, we absolutely respond to every message.

Our Whatsapp number, for anyone who wants to add us, is +573229502192. I’ll repeat it just in case: +573229502192. So you can just write to us there: “Hey, Radio Ambulante” or send us your favorite emoji and I’ll respond or add you to the contact list and we’ll be in constant contact.

[Daniel]: And you’re not a bot.

[Jorge]: I’m not a bot [laughs]…

Beside what we’ve already mentioned with the newsletter and Whatsapp, we’re all over: we’re on Twitter, we’re on Facebook and we’re on Instagram.

And something I’m excited about right now, for example, is the Radio Ambulante club. El Club de Podcast de Radio Ambulante, which is on Facebook. It’s a private group on Facebook. I’m not a big fan of Facebook as a company, and I don’t think you are either, Daniel…

[Daniel]: I was going to say, your biggest accomplishment at Radio Ambulante has been getting me on Facebook.

[Jorge]: How many friends do you have?

[Daniel]: One. Two [Laughs].

[Jorge]: Daniel has two friends on Facebook, but he’s already done his first Facebook Live which is a big accomplishment.

The truth is I don’t like Facebook as a company, but something interesting that is happening on the platform is the groups. And we made one a month ago, which is called El Club de Podcast de Radio Ambulante. Which right now has 1,010 members and is a closed group where people can talk about the episodes about the stories. So promoting interaction between the users, in a place where they can ask questions, where people can respond to other listeners, where they can laugh, where they can offer criticism…where they can respectfully debate, I think that is the most exciting thing we’ve accomplished. And it is a community that we feel we are a part of. We aren’t the owners of the community, we don’t have any more control…we’re just doing something, putting it out there for people to discuss. So I am inviting all of you to join the Club de Podcast Radio Ambulante too..

[Daniel]: Great. Well, we’re counting on you to help us navigate that, Jorge.

[Jorge]: Yes, well I’m happy. I’m very very thankful. I’m very happy that well, it’s really cool to be doing this job with such a great community, such an active community. And I think that our goal is to help Latin America come together through good stories, to help Latin Americans get to know each other better, and that’s happening and is a privilege. So, as a journalist, I’m happy.

[Daniel]: Great. Thank you Jorge. We’ll keep moving forward.

[Jorge]: Ok, yeah. We’ll keep talking. Follow us on social media, everywhere [laughs]

[Daniel]: Thank you. Bye.

[Jorge]: Bye.