According to UNICEF, there are an estimated 93 million children with disabilities in the world and these children represent one of the most marginalised groups on the planet. Children with disabilities must frequently overcome prejudice, stigma and institutional barriers to education and services, as well as their own physical or mental challenges. It is all too common for disabled children to be isolated, neglected and written off as useless because of stigma, ignorance and misguided beliefs.
Wukwashi Wa Nzambi (WWN), translated in Lunda as ‘God’s help’ is a home situated in Kitwe, Zambia for disabled and mentally challenged children of all kinds and it is run by a local couple Henry and Joyce Mutembu.
The home makes a tangible difference to disabled children, in all sorts of ways. At their weekly support and physiotherapy groups, children with disabilities can play, make friends, receive vital therapy, and be assessed for mobility aids. These groups also provide the children’s parents and guardians with vital support. Wukwashi also helps disabled children to access education and learn simple life skills, so they can become more independent and make a contribution to their communities.
Among those who have faithfully supported the work over many years are John and Becky Wright and the following narrative is a report of their recent visit to Wukwashi. In some cases names have been changed or omitted to protect identity.
After settling in Kitwe our first visit was to the support group in Ndola and one of many we were to visit during our two week stay. The group was held in a building donated by Disability Africa on some land belonging to Christian Missions in Many Lands (CMML). It was a sturdy block classroom with barred windows which contained no glass.
We met a fifteen-year old boy with severe scoliosis caused by spasticity in all his muscles. Despite this, he had a bright smile and his mum explained that his left hip was out of joint. We talked with her about how to make him comfortable. She explained he was on medication to help him sleep. Joyce said he was due to go to Beit Cure, a local hospital, for assessment and that the family were worried about the journey by public transport. We were able to help with the cost of the trip and the Mum was delighted. He has since had surgery which should relieve some of his discomfort.
On our return journey we diverted to Luanshya to Daga Ma school where we saw Mary, the adopted daughter of Henry and Joyce, who has Spina Bifida. Two other girls were placed there, both now teenagers, who had been at WWN school when it started in 2009.
We were warmly welcomed at the Wukwashi Wa Nzambi School and Centre and arrived to see the Physical Education session in full swing. It was a game of chasing around a circle and there was lots of laughter. The team led the children in a welcome song which was very emotional for us to hear and we greeted them individually.
One girl was constantly chattering to herself and we later learned she was a Luvale speaker. Joyce told us that she had been sent by a doctor from Chitokoloki Hospital in the northwest region of Zambia. She was blind, partially deaf and exhibited violence. She had come to WWN for long term assessment and was improving with attention and some drug therapy. Henry and Joyce were hosting her and the mother in their own home, as there was another disabled boy and his brother also being assessed and staying in the only school guest room. The Mother was helping her daughter in class and with the cooking at the school.
The school team are very dedicated and work hard. We had opportunity to meet staff we had met before, including the head teacher, administrator, social worker and counsellor. The counsellor is about to get married and so this will be the first Wukwashi wedding! The best welcome was from Kondwani, who we have known since he was a baby. He came to speak to us, with his limited vocals and limitless warmth. Daga Ma had said he was not able to be taught, but he has so much to share with a fun filled nature.
There was a new venture for the school as it aims to become a training centre for parents. Half the children remained home and the other half came with a carer. The objective is to show the parents how to work with their child to achieve maximum independence. The activities of daily living, physio and academic groups went on during the day and we were able to work with the children in all three settings.
We explored ways to improve seating and especially shoulder and neck control. Peter was unable to stabilise his shoulders so struggled to reach his mouth with accuracy. We tried some ideas out with his Mum to help. He was very keen to walk and he achieved this by hooking his elbows over the parallel bars. We found a braced wheeled walking frame, received from MMN, for him to try out. He was able to use a low tech skate board for useful mobility and the frame for therapeutic walks.
Melinda, being both deaf and blind will need specialist education once she has settled down. In the meantime she loves trying to draw letter shapes with a pencil. We discussed using a tray of sand or millet with her finger and possibly learning the ‘QWERTY’ key board lay out so she could write usefully. She will need hearing aids as her Mum has to shout.
Friday at the school is a non-pupil day and all the new local volunteers came for some basic training. We decided to concentrate on normal movement, the skeleton, muscles, tendons and the cause of Cerebral Palsy. It was good to see the experienced volunteers enabling the new ones to understand. There were twenty-five or so in this group and at the end we were asked to give encouraging words, so shared Nehemiah 8v10 on how The Joy of the Lord is our strength. We are building as teams, and must work as one. We shared the story of how WWN started, how the Lord guided, how Joyce was able to continue the work alone and how it has grown.
We were able to visit the farm that was bought with the help of MMN. It has good ground water and can grow produce throughout the year. One volunteer is living there in a tent with his family. The six year old daughter had received Wukwashi’s help with bilateral club foot surgery and was running around happily with her siblings. Up until now it had been the dry season, but there was water available to plant cabbages. It may be an option to take some of the older lads from the school in Ndola to help the farm as a cultivating camp. Some of them already help the gardener at the school and they could have a share of the produce for their work.
We travelled on to Chambeshi with chairs and a standing frame from the Apter workshop, where we dropped them with the group leader, then headed on to the Chingola group. There were twelve children there with a great variety of needs. We were impressed by the care given by siblings in this group. Emeldah was fearful when I went to assess her. She had a twin sister who came alongside taking her to the toilet and then she came back calmer. She needed to go to Beit Cure as her ankles and knees were getting tight. She was able to travel to Lusaka on the bus and has since had surgery. Another lad led his blind two year old brother in walking practice, calling out his name. Outside, a very lively blind lad was busy soon exploring the outside of the car by touch. John gave him the chance to sit inside with his sister and he was using fingers to explore the horn and other controls. His ability was clear and he needs education soon.
Two chairs were to be given out and they were tried out for size. The chairs are made from paper and card and are a very useful way of recycling MMN boxes.
Mondays’ Chimwemwe group was full, with eighteen children, and we saw half of them individually, the other half would be coming to the school centre for the extended parents support program later in the week. As we gave small bits of advice and prayed over each child, we felt overwhelmed. One child with hydrocephalus was very sleepy, another had microcephaly. Several had spastic quadriplegia. Fortunately, physio third year student Emmanuel was aware of all the children’s conditions and helped us as we talked to each parent. One Mum asked if her son’s leg would be fine. It was hard to say he would always be struggling due to brain damage so tried to explain gently. She came back for two more chats, desperate to understand the situation.
Another day at the school gave us the chance to talk about logistics and the future development of a family accommodation block for rural parents to come for extended training. The parents are enthusiastic to learn and the school grounds could accommodate six small ‘one-room’ homes with a central cooking shelter. There could also be two dormitory blocks for training camps.
We knew it would be busy with little time to record notes but we were able to use gaiters and issue some shoes with an ankle splint for one little girl. Two older girls had night resting paddle splints for hemi hands and we started to look for longer full length callipers for a little girl with potential to stand. We emphasised that these were not to be left on for long periods and that the skin would need to be checked for rubs.
There are new volunteers to train, so Henry helps me as I use a PowerPoint presentation to talk over moving and handling. Older children may be getting too heavy to lift from the floor.
In conclusion, we would want to convey our grateful thanks for all the help and support MMN has given in providing equipment and financial help to assist the children and families of WWN. It was a very encouraging visit and with many new volunteers and an expanding project, any visiting experts would be gratefully received, especially occupational therapists, physiotherapists, speech and language therapists, orthotists, nurse specialists, and even a webpage designer.