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Growing past the daily inhibitions of disability

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Larche Community’s ‘children’ with disability perform Runyege dance. Below, they make jewellery. Art work is one way of helping them to learn.Photo by Abubaker Lubowa 

By Carol Nambowa

Posted  Thursday, December 19  2013 at  02:00

In Summary

While others scorn children with disabilities, L’arche community welcomes and moulds them into self-reliant citizens.

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In 1990, Anne Kiruta picked a boy and a girl called Thomas Onyango and Lamlah Nakibuule from Naguru Reception Centre-Uganda. The two children had severe learning disabilities. From her previous work at a L’arche community in UK, Kiruta learnt that most children and young adults with learning disabilities in and around Kampala were neglected, isolated and marginalised, and it was this, that drove her to live with them in her home. With encouragement and support from friends in Uganda and abroad, Kiruta began to raise funds to welcome more children and moved into a bigger house in Busega in 1990 marking the official beginning of L’arche Uganda.

L’arche is an international federation founded in 1964 with a mission to create and grow homes and programmes with people who have intellectual disabilities. L’arche Uganda is part of nonprofit L’arche communities in 64 different countries. One of L’arche Uganda’s goals is to inform Ugandans that these people can be lived with and are wonderful gifted people.

What is done at L’arche Uganda
Driving along Masaka Road in Busega, it is easy to miss the small signpost with L’arche Uganda on it. Even when you enter through the light blue gate that leads to a cream painted residential house, it is hard to tell what takes place in the home. It is not until you are captured by children’s drawings on the glass-shielded notice board that you confuse the home for a nursery school. As soon as you reach the home, a smiling face of one of the caretakers or children will welcome you. In this quiet residence with a swept compound, 19 children with intellectual disabilities play, learn, sing, dance and work like any other normal human being.

Part of the main house, are three rooms with brightly coloured walls of sky blue and lime green, play and learning materials. Other extensions to the house include a bakery, carpentry workshop, piggery, a candle workshop and jewellery room. According to Simeo Kizito Matovu, the treasurer on L’arche Uganda’s board, a child is placed in a project depending on what they love to do and their abilities. “At the end of the month, the children are given some pocket money by L’arche for the great work they have done,” adds Kizito.

The power of art
From the drawings and play objects, it is evident art is used to interact with the children. Kizito, further shares: “We use art so much to teach the children. For most of them, engaging in art is like playing and using the play dolls is a learning basis. They use colour for identification.” It is from drawings and art that caretakers can determine a child’s level of understanding and abilities. Among the drawings on the notice board are Nakibuule and William Kaluya’s. About their work, Kizito says: “Nakibule coloured with three different colours and shading styles while William coloured his with one purple shade and style.”

Geoffrey Kigenyi, a physiotherapist at the organisation says when drawing, the children choose what they want to draw and the colours they shade with.
“Art enables us to know what the child’s interests are. For example when drawing, Onyango always says, ‘I want to draw a car,’ while Nakibuule says, ‘I want colour red,’” says Kigenyi. Differentiating colours and drawing not only enables caretakers to connect with the children but also to develop their hand coordination skills and thinking capacity.

L’arche Uganda’s number one objective is to teach the disabled children the basics of personal hygiene, fitting in society and learning to cope with differing characters. When a parent takes a child to L’arche Uganda, they fill in a form. The child’s learning abilities are assessed by a physiotherapist, health and social workers. “The amount of upkeep provided by the parent depends on the care required for the child and the distance of their home from L’arche,” says Vanansio Katembeka, the acting director of L’arche Uganda.

On November 9, Barclays Bank donated sewing machines, baking items and carpentry instruments to the home. During the occasion, some of the disabled children accompanied by three caretakers performed two cultural dances and cake was cut.

As Athony Kirui, the treasurer Barclays bank received the Barclays bank cake baked at this L’arche home, he said, “Stewardship is leaving things better than they were. I hope we have done this today.”

Challenges of L’arche
Asked about challenges they face, Katembeka says: “Although we refer to them as children because we brought them as kids, they are now adults.” He adds: “We are still struggling to persuade the children to refer to caretakers as sister or brother instead of uncle and aunt, some of the children like Nakibule still wish to be called, ‘baby’. Some of them have started developing feelings for the opposite sex and the caretakers find it tricky to handle, he says.

Another challenge they face is insufficient funds. “Most of the children are epileptic and their wellbeing is sustained by medication yet resources are limited,” explains Katembeka.
L’arche Uganda’s survival is reliant upon hand-outs from well-wishers and donors. Unfortunately, donors are usually discouraged when tax is levied on items they wish to donate to us,” Kizito says.

Apart from funding, Kizito explains there is little support for the home from the local and business community.
Despite all the challenges faced, as you leave the home, you are amazed and fulfilled by the happiness the children express. Kaluya will most likely ask, “When are you coming back?”
He will hold your hand, walk you to the gate and as you watch him walk back to the house, the one thing on your mind will be, “I must come back.”

editorial@ug.nationmedia.com