It is not often that I tell stories of other people – but this is an exception. It takes place in West Africa. It is about Jules Loba.
Although born as a healthy child he contracted polio at the age of three. One day he developed a high fever that cruelly left him paralysed in both his arms and legs. After several months of polio treatment there was no improvement. That was in 1966. Ever since then he has had to crawl on the floor to get around.
But perhaps that was not the greatest hurt. It was the ‘disgrace’ that he had brought upon the family. Like many others like him he was labelled as possessing snake demons. They were accursed. His own father took him away to a secluded house and left him there, away from the eyes of the other villagers.
In another nearby village lives Christine who has suffered a similar fate. Since the age of two her legs have been rendered useless by polio. She just spends the whole day sitting outside her hut – and going nowhere. Lonely. She says “Nobody wanted to come near me. People prevented their children from approaching me. Even today it continues.” She is even accused by her family of being the author of her own misfortune, as well as the misfortune of others. “Here they call me a witch. When I was 10 my aunt accused me of killing my brothers and sisters by witchcraft. I was very bad and I wanted to kill myself.” she sobbed, with tight throat and red eyes, shedding great drops of tears.
With many others around like himself, such as Christine, Jules Loba decided to take action. to restore their human dignity. So in 2005 he founded Lobus Action. He decided to round up his brothers and sisters who were also crippled by the disease to fight together against this terrible abuse – and other evils they were subjected to. But above all they wanted to bring together other members of the community, which today is their only hope to socialise.
Today Lobus Action has about 250 members distributed in 53 villages of the region in and around Songon, the small town about twenty kilometres from Abidjan, the Ivoirian capital. They are now a charity registered with their government as an NGO. Sadly they do not attract much help or funding. Thanks to a Spanish therapist who stayed with them for four months in 2008, they have been able to get some publicity, but not enough. With some help from Hector Noquera they were able to identify 300 disabled people. He himself wanted to experience the realities of their daily ordeal, giving practical training in massage therapy to the volunteers they worked with.
Since then the disabled in Songon meet once a month at Lobus headquarters. There they are able to share their emotions and feel human again with others who understand them. As one said “These are times when we feel as human beings. We feel loved by others; we encourage them to face all the same prejudices. ” When someone comes to their home to massage their legs they feel they really start to live.
Jules Loba himself displays a great sense of humour as he sits on the threshold, as if floating in his striped white shirt, telling his story with a steady gaze. He cannot speak three sentences without making a joke with a great sense of presence and an imposing voice.
Why am I writing this? The General Secretary of Lobus, Vincent Zerehouhe Poeri, himself a victim of abuse as a child, contacted me on Facebook and has asked me to help. He is disgusted by those who take advantage of these disabled people – especially the women who are often subject to sexual abuse and rape. Christine herself got pregnant at the age of 15. She has had to raise her 7-year-old son on her own as the father disappeared.
Jules Loba desperately seeks socio-economic integration for those with disabilities. He says “We lack everything, including ointment for massage. When there is no one to provide funding the disable have to go for weeks without any treatment.” Sometimes the need is for something bigger yet more basic – a new wheelchair. Such is Christine’s wish. She was given one in 1999 but it has no pedals. She says “I just need a chair with pedals so I can get around on my own without needing help from someone else.”
Loba has a big vision that extends beyond Songon. He says “I want to train people in Physiotherapy, so they bring a little comfort to the disabled. I want to go into schools to urge children to work, because if a man without arms or feet is able to learn to read and write without going to school so can they…”
His persistent endurance has been rewarded. He has much pride in his family, as reflected in the name of his youngest daughter, Perseverance. “I was rejected, but as I persevered I advanced.” he says proudly.
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This was adapted from an article (in French) in the Abidjan News. You can read it for yourself (or with translation) via http://news.abidjan.net/h/488003.html