Meet Mary, and hear the stories of the people she’s helped

Mary is a local community volunteer, and is the kind of person who gets the job done. She is well respected, and her passion for helping her community is obvious.

Mary’s hard work was celebrated in 2014, when she won an award for her work as part of the river blindness programme.

Mary went out to distribute medication while we were with her, and we saw how seriously she takes her role. She cajoles the crowd into an orderly line and everyone jumps to attention – they clearly know the drill. Mary says the community is very accepting of the drug distribution, and no one questions or challenges her when she gives them medication. “For my community, I don’t have challenges. When it is time to take the drugs, they come with a cup of water to take the drug.”

Mary speaks passionately about her family and grandchildren, and how she educates them on the importance of taking the medication. “What I’ve been telling them is that the drugs protect their eyes. And in life, if you don’t have your sight, there’s a lot of things that you cannot do. So take it to protect yourself.

“If river blindness is eliminated, I will be happy, the community will be happy and my family will also be happy for the fact that I have helped to make it happen.”

Isaac, 63, has lived in Asubende his whole life, and used to be a farmer until he began losing his sight to river blindness about 15 years ago.

When people began to leave Asubende because of the fear of going blind, Isaac didn’t feel able to. “This is the only place where I can get help,” he tells us. “The only people who can help me are in this place.”

Isaac’s brother-in-law, Penya, and niece, Bridget, now look after him. Penya told us: “Because he cannot see, if he needs something, he needs to send me to collect it for him.” This is even the case for food and water.

Bridget explains how she feels when she sees Isaac struggling with blindness. “It hurts me – it’s painful,” she says. “When he could see, he could do it for himself, but now if he needs something he has to wait for us to come.”

When talking about the treatment that Mary distributes, there’s no doubt in this family’s mind that they should take the medication to protect them from river blindness. They have seen the devastation river blindness has caused in Asubende and the effect it has had on people like Isaac.

Abena was born in Asubende village, and lives with her son. Her daughter lives nearby with her husband and five children.

Abena lost her sight gradually, and can now only make out shapes and movement. Yet she remembers a time when there were no flies. “Our ancestors brought us here and the river used to help us – we didn’t have any problem with the river and the flies were not there,” she tells us. “It helps us for so many things: for our bathing, for our eating.”

Abena speaks proudly of her daily routine, which includes sweeping the yard, cleaning dishes and, if there’s a fire lit, cooking – although sometimes this has caused Abena to burn herself. She’s unable to fetch water, firewood or grow vegetables as she used to.

Abena’s 25-year-old daughter, Effia, is her main support. Effia has five small children of her own. She has been helping her mother since she was very young, meaning she wasn’t able to get an education. She walks 16 miles to the farm and back every day, before going to fetch water and preparing the evening meal for Abena and her large family.

Abena has never seen any of her grandchildren. “I hold them, but I have never seen their faces before,” she laments. “I’m very upset about that.” Her dreams for the future are focused purely on them. “I am already infected by the disease, but my hope is that it does not affect my children or my grandchildren.” Thankfully the treatment that Mary provides will ensure Abena’s grandchildren are protected from the devastating effects of river blindness that Abena has endured.

Akwasi, aged 70, moved to Asubende 30 years ago. He used to be a yam farmer, but had to stop working when he lost his sight.

He lives alone, with very little support. When we asked Akwasi how he earns a living, he says: “For now, I depend on help from other people. Sometimes friends visit and give me food – anyone who feels like helping me and giving me food.”

Akwasi’s daily activities are very limited. He says he cooks, but this clearly comes with an array of dangers and challenges, particularly burning his hands. Yet he has little choice: “If you are blind, you are not supposed to cook. But if you don’t have anybody to do it for you, you have to do it yourself.”

Akwasi says he would have liked to get married and work, but blindness has stopped him. He also highlights the physical risks of being blind in Asubende, such as crossing the road. He described how scared he can be when taking these short but risky journeys. When asked if he ever falls, he tells us that he had fallen in the gutter several times, “Once I fell down and I thought my leg was broken until people came to lift me up.”

Emmanuel, who is 65, started losing his sight gradually in the late 1970s. During that time he remembers the flies and being bitten a lot.

“Some of the bites are very painful,” he says. “Some of them are also very itchy.” Yet this doesn’t stop him going to the river. “We fish, we drink from it. If there is no river and you want water, you have to go about five to eight miles. That would be too long – it would be too far away.” The tablets that Mary distributes help with the symptoms of river blindness, like the itching that Emmanuel describes.

Emmanuel also remembers when people began moving out of Asubende and reflects on how this affected the community. “There were no strong men in the community any more,” he explains, saying he would have moved himself if it wasn’t for his sight loss.

Emmanuel has remained extremely independent, but a recent illness was becoming a huge burden. He tells us how he’d had to sleep outside after falling in the night on his way to the toilet. Unable to get up, he was found in the morning by a neighbour, who checks in on him.

We passed Emmanuel’s home on the way back to the river the next day and saw him cutting cashew nuts. He looked lonely and quiet in comparison to when we met him. It was a painful reminder that there are long parts of every day that are like this for the people who are blind in Asubende – they spend much of the day alone.

Shaibu is the headteacher of the local school. He came to Asubende to work, but was uncertain whether he should stay when he heard about the river blindness that had devastated the village.

Asubende’s history of river blindness was seen by many people as a ‘curse’, and Shaibu says this reputation made it difficult to get new teachers to come and work in the village. People believed that if you live in Asubende, you would go blind. It was a big challenge for Shaibu, as they couldn’t even encourage newly qualified teachers to join the school.

When Shaibu and the other teachers started to think about leaving, Mary had to reason with them. She told them about the treatment she was distributing and how it protected the villagers from river blindness. It’s because of Mary’s support that teachers from outside Asubende have remained and the school has been able to stay open.

Shaibu has even been able to encourage three new teachers to join and, in turn, the school now welcomes more children from surrounding villages. He told us: “I’ve learned a lot from Mary. She has been encouraging the teachers. She’s the one who has helped us continue the work here. We’re very grateful.”

Abrahim has been Asubende’s community leader for more than 30 years. He remembers that Asubende used to be a big village with lots of people, but says many of them left because of river blindness.

He describes how the name ‘Asubende’ has negative connotations in nearby communities: if you tell someone you’re from Asubende, they don’t respect you. “We have a bad name. They say that we are all blind. That’s why no one wants to come and work or live in this community, because when you come here, you get the disease.” Abrahim remembers the mass exodus of residents from Asubende and says this made the community lose hope.

Because Abrahim is an experienced fisherman, he was part of the team that sprayed the river with insecticide as part of the original disease programme to control the flies that spread river blindness. When the team comes to test if the disease is spreading, he also helps to catch the flies

He and his family welcome the treatment that Mary provides, and say they will be thankful when river blindness is eliminated.