“They die within six to 24 months”: Ed Kashi documents a deadly epidemic

Family and friends gather on 7 January 2013 for the funeral of a former sugarcane worker, 36, who died of CKDu after working in the cane fields for 12 years in Chichigalpa, Nicaragua. Photographed using a Canon EOS 5D Mark III with EF 24-105mm f/4L IS USM lens; exposure was 1/250 sec at f/6.3; ISO 400. © Ed Kashi/VII

In January 2013, Ed Kashi was in Nicaragua, photographing the funeral of a 36-year-old sugarcane worker who had died from chronic kidney disease of unknown origin (CKDu), a disease Kashi has made it his mission to bring to the world’s attention. “It was late afternoon, with this balmy wind going through the trees, in this lovely little cemetery in Chichigalpa,” he recalls. “These situations are challenging, because you want to get exactly where you need to be to render the situation in a powerful way but you also want to be respectful.

“I found my position, and then out of the background, I hear the voice of this young girl, in Spanish. She just keeps on saying, ‘Where's my father? Where's my father?’ It sounded like an angelic voice. Finally, I saw her, just being cradled by an aunt or an older sister,” he continues. “It's those moments where you feel what you're doing is so important. I don't want these teenage girls to keep on losing their fathers to a disease that they don't have to die from.”

One in 10 adults has chronic kidney disease – most commonly caused by diabetes, high blood pressure and obesity. But no one knows the exact cause of CKDu, a condition that has killed 40,000 people in the Middle East, Asia, South Asia, and Central America in the last decade. It’s on the rise, mainly among agricultural workers in hot countries. “It's about poor labour conditions,” Kashi explains. “You have people working away in the sun, and often they don't have the three simple things: rest, water and shade.”

CKDu is also under diagnosed, partly because those affected are reluctant or unable to visit a doctor. “What happens, sadly, is that by the time they discover it, they have such severe symptoms that they already have stage four or five kidney disease, which means they need to have dialysis. Generally, they die within six to 24 months.” For families dependent on these men for their livelihood, the death can be financially ruinous, as well as emotionally devastating.

Jorge Martin Bonilla, 29, who died of CKDu, lies in a coffin in Chichigalpa, Nicaragua.
Jorge Martin Bonilla, 29, worked in the sugarcane fields for five years before he contracted CKDu in 2004, and died in Chichigalpa, Nicaragua, on 30 April 2014. He was the youngest of six brothers, three of whom are also sick with CKDu. Photographed using a Canon EOS 5D Mark III, lens not recorded; exposure 1/50 sec at f/5.6; ISO 3200. © Ed Kashi/VII

Kashi first heard about the disease when he was commissioned by a small NGO to cover the epidemic in Chichigalpa, where almost 70% of the town’s men were sick with the disease or had died from it. “Often, as a photojournalist, you're scratching and digging to try to find evidence of the story you're trying to tell,” he says. “Well, in this case, the story was slapping me across the face every single day. It was there that I resolved, ‘This will be my next project.’"

A personal project is so intimate and labour-intensive, you need to be obsessive.

As an under-reported issue and an unfolding investigation to which he could contribute and have an impact on, CKDu had everything Kashi looks for in a personal project. Over the past four decades, Kashi has documented a huge number of newsworthy issues, including the consequences of oil exploration in the Niger Delta and the Kurdish struggle for self-determination, as well as the attitudes of Protestants in Northern Ireland and Jewish settlers in the West Bank. “One never knows where that next personal project will come from. It's such an intimate and labour-intensive endeavour,” he says. “You need this level of commitment that is blind, obsessive and maniacal.”

Viewed from behind, a cane worker slices through burnt stalks of sugarcane in a field in Chichigalpa, Nicaragua, his bare back spattered with the ash and soot that also covers the ground.
Covered in ash and soot from the burning of the field the night before, a cane worker slices through the burnt stalks of sugarcane in Chichigalpa, Nicaragua, on 1 May 2014. Photographed using a Canon EOS 5D Mark III, lens not recorded; the exposure was 1/500 sec at f/8; ISO 100. © Ed Kashi/VII

As a proponent of a methodical approach, he had a multi-faceted visual strategy. He explains the strands: “I would do interviews with people, and then do their portraits. These would be either workers who were sick, or the loved ones who had been left behind by those who had died from the disease.

Born in 1957, Kashi studied photojournalism at Syracuse University in his native New York. He’s been shooting on Canon since 1977, and now uses the EOS C100 Mark II for moving images and the EOS 5D Mark III for stills, with an EF 24-105mm f/3.5-5.6 IS STM lens. But “technique only goes so far,” he stresses. “I have to make my equipment disappear, to master it, so that when I'm with you or I'm with your mom who is dying, I'm not obsessed with the exposure or focus, I'm just being present… I have one camera and one lens, and as long as nothing breaks down or I don't lose it, that's all I need.”

Kashi has been working on CKDu for the past four years, funded by a creative blend of assignments, grants, crowdfunding and archive sales. So far he’s covered Nicaragua, El Salvador, India and Sri Lanka, and the work doesn’t stop there. Next he’ll go to Peru, supported by a National Geographic grant.

Two workers, their heads covered by makeshift turbans, in the village of Uchapalli, India, harvesting black whole grain, while a third worker sits in the background wearing a cap and face covering.
Harvesting black whole grain in the village of Uchapalli, India, on 16 January 2016. Photographed using a Canon EOS 5D Mark III, lens not recorded; exposure 1/32 sec at f/22; ISO 100. © Ed Kashi/VII

“I also wanted to do reportage, of course, which is what I love doing the most. So again, capturing them working, dying, sick, receiving treatment, their daily life, capturing a sense of the place, landscape pictures – really trying to use the visual language of photography in a documentary approach.

The third strand, which in some ways is the most dominant, is filmmaking. Now, more than half of what I do is filmmaking. In each of these cases, what it allows me to do is not only tell the story of this issue in a different way, but to reach a different audience.”

And reaching audiences is what it’s all about for Kashi. Many photographers want their work to make a difference, but not all succeed. The key, says Kashi, is collaboration. “I'm always thinking strategically about the partners who can help me get access to and understand what's going on, but also the partners who can make a change with the materials I create. Because I am not an activist. I might have that spirit, and heart, and desire, but that is not what I do. I am a storyteller.”

A middle-aged woman receives dialysis via a dialysis machine at the Narayana Medical College in Nellore, India. Her right hand, extended from under her blanket, is being held by a man not visible in shot.
A woman receives dialysis at the Narayana Medical College in Nellore, India, on 13 January 2016. Photographed using a Canon EOS 5D Mark III; lens not recorded; exposure 1/80 sec at f/5.0; ISO 2000. © Ed Kashi/VII

I might have the spirit of an activist, but that’s not what I do. I am a storyteller.

Storytelling has changed over the years and Kashi with it. He mentions the “profound impact” of social media and of video, but also the tougher economic climate. “I grew up in the industry when the twin pillars of support existed – a lot of editorial assignments and very good archival resale. That's how I built my career. Particularly in the last 10 years, I’ve seen that disrupted. But what I've learned in that time is that there are all these other ways you can engage with people and find support. You can create work and if it's great, if it's meaningful, it will have an impact.”

sugarcane cutter Roberto Valdivia, 31, poses for a portrait in Chichigalpa, Nicaragua. Behind him a long, rain-soaked straight road stretches into the distance. A man walks away from the camera carrying a plastic shopping bag, while a woman rides away on a bicycle with a child in her arms and another woman and child sit on the front steps of a house at the side of the road.
After 16 years cutting sugarcane and sick with CKDu, Roberto Valdivia, 31, poses for a portrait in Chichigalpa, Nicaragua, on 24 April 2014. Photographed using a Canon EOS 5D Mark III with EF 24-105mm f/4L IS USM lens; exposure 1/60 sec at f/8; ISO 800. © Ed Kashi/VII

“Look,” he continues. “Humans live for stories. I don't think that will ever change. The way we create them, the way we consume them – that will always change. But the one thing I know is that people will always want stories. That's what I take hope and solace in.”

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Written by Rachel Segal Hamilton

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