Even her impairment doesn’t stop Joyce
scooping her daughter Felicity lovingly up
into her arms

Photos: © DAHW/Jochen Hövekenmeier   

 

“I feel like someone with leprosy” goes the saying of people who feel they are being marginalised. As unhappy as this comparison is, unfortunately – even today in our seemingly enlightened world – persons affected by leprosy are still marginalised and even rejected by their own families. The German Leprosy and Tuberculosis Relief Association (DAHW) gives those affected the opportunity to build a new existence – an existence among those very persons who once banished them.

Joyce K carefully lifts a bottle of Cola out of the chilling cabinet. Not because it is particularly fragile, but because it is difficult for the thirty-one year old to get any kind of grip on the cold damp bottle. Her fingers are formless stumps. Feeling was lost in her hands a long time ago as a result of leprosy, which Joyce had over fifteen years ago.

 

Approximately 1,000 inhabitants are living like Joyce in Iberokodo, in one of fifteen small settlements, each of ten to twenty huts, separated from each other by fields and forests. It is in this village, about 30 kilometres from the provincial capital of Abeokuta, that Joyce is living and working. It is also the village where she grew up and from which she was driven out for eight long years.

 

On the edge of Iberokodo lies a small hospital and leprosy village – a place of shelter for patients who have been expelled from their homes, because they have leprosy. Joyce remembers the leprosy village from her childhood: people would make an enormous detour around it so as to avoid being near persons affected by leprosy. At that time she would never have imagined that she herself would find shelter there.

 

When she was fifteen years old, she discovered a patch on her upper thigh – it was unusually pale and after only a few months that particular area of the skin was without feeling. At that time Joyce already suspected that she had leprosy, because leprosy workers had often been to her school and had explained the first signs of this disease. She knew that she would have to get treatment as soon as possible. But what would then happen? How would her family and friends react? Would she have to move to a leprosy village? Joyce preferred not to imagine any of these scenarios and concealed the signs.

A few years later her hands and feet had become completely numb and without feeling. Joyce discovered self-inflicted wounds that she had not noticed. As the wounds did not heal and the inflammation worsened, Joyce finally confided in her mother. Instead of supporting her, what Joyce had always feared happened: her uncle, with whom she and her mother had been living since her father’s premature death, threw her out of his hut and out of the village. He sent her to the leprosy village in which he himself had never set foot.
It took two years to cure Joyce of leprosy, but it was not possible to reverse the disfigurement to her hands and feet which had already been severely deformed by the disease. “My fingers, in particular, let me down in this work” says Joyce dexterously opening a bottle of Cola as though she wishes to give the lie to her words. The father of her child Felicity left her because of her mutilated fingers – at least this is what he said to Joyce three years ago when she became pregnant and wanted to get married.

 

At that point in time Joyce had already lived in the leprosy village for eight years, during which time she did not once see her mother, who was only some 800 metres away.  When Joyce wanted to resume a normal life, she was determined to decide for herself where she would live and ensure that her child would grow up in an entirely normal environment.

 

Joyce had often spoken to Kusimo Olukayode, a Social Worker for DAHW, about the opportunities that were open to her: What could she do with her crippled hands? Would people “there on the outside” accept any business she set up? She wanted to know, despite all her doubts.

 

She moved into a hut in the small village where she spent her childhood – right next to her mother’s hut in fact. Kusimo obtained a small loan for Joyce from DAHW, which set in motion Joyce’s first exciting move. Joyce used this to get herself a chilling cabinet, a generator and a stock of drinks: Cola, water and beer. She has stopped selling beer though: “Men become rapidly aggressive, when they have drunk”, says Joyce as she sips clean water out of a plastic container.

 

In the villages of Iberokodo there is neither water nor sources of energy. So, Joyce thought, fresh, clean and chilled water would sell well. However, despite Kusimo’s support, the “leprosy woman” was severely rejected by the people in the village who were familiar with her story. The income generated was scarcely enough to live on, let alone to buy new stock. 

 

The idea to save this situation came during a conversation with one of her few customers, who would go to a village three kilometres away to watch the Nigerian national football team play in a match. This customer made it known that they were so passionate about football, that they did not care how far they would have to walk to the nearest television set. 

“I reflected on the lengths that men will go to see a football match on television” says Joyce with a mischievous smile. “Why shouldn’t they come to me to watch one?” There was still a little bit of money left from the loan, which amount was supplemented by Kusimo, and a few days later there was an old television in Joyce’s hut.  

 

From the very first time Joyce allowed people to watch a match on her television she had to carry her bed out of the hut. “The whole village gathered in front of my television and drank my water and my Cola. And now many drop by regularly - not only when there’s a football match on.”

 

Her example has given other former patients courage. After playing at a party in honour of Joyce, the musician Joseph B even had the courage to go back to his old village. Social worker Kusimo also gave the 68-year-old a micro-credit to buy a music system and a second-hand motorbike, so that he can ride to festivals in other villages. In fact, these days, he plays at every celebration in the villages of Iberokodo – including for the neighbours who sent him to the leprosy village over twenty years ago.

 

“We must learn for ourselves that we are no different to before we got ill” says the musician taking stock. “Whenever other people also realise this, for example whenever they have need of the work we do, then we live together again exactly like those who happen to have had any other disease do.”

 

In the meantime Joyce is able to live from her shop and has almost repaid the loan. She says “When I have repaid the loan in full, I will also return the subsidy to Kusimo.  Or I will give a subsidy to one of the other persons affected by leprosy for their own business. I owe that to those who have helped me.”

 

Article by Jochen Hövekenmeier

Translated by ILEP with kind permission of DAHW 

 

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