How Edirisa Changed My Life, and Theirs (Kitanga 2009)

This is the ninth instalment of a weekly series that marks 20 years of Edirisa and 10 years of the Gorilla Highlands Initiative. Click here for Part I.

2009 was a pivotal year for me and Edirisa UK as it was the summer that I first visited the Special Needs Education Centre (SNEC) in Kitanga in Kabale district, southwestern Uganda. I was shocked by the conditions in which the children were living; dismayed, but maybe not surprised, to learn about the lack of facilities for children with special needs; saddened to hear how many families badly treated their children born with disabilities; and overwhelmed by the desire to do something to help. It was a very emotional experience. But it has led to so much good and so much joy.

This was half a decade after I first came across Edirisa. Whilst enjoying a canoe trip on the beautiful Lake Bunyonyi, I spotted a big papyrus heart on the banks of the Bufuka peninsula and stopped to see why it was there. I met Pamela, learned about the organisation, Edirisa, and understood the significance of the symbol that drew me in — this was The Heart of Edirisa. The guys were supporting Bufuka Primary School, and having wanted to do something to help disadvantaged children in Africa for some time, I saw that this was somewhere I could make a difference.

Rhodesian Girl’s African Impact

Why was helping in Africa important to me? I grew up in Rhodesia (now Zimbabwe) and two of my three siblings still live in Southern Africa. I moved to England in 1971, for a six-month working holiday that then lasted six years. I never went home! However, I always needed an ‘African fix’ and visited my family regularly.

In the 1990s and 2000s I worked in the fashion industry and was very successful. One of my businesses manufactured a small amount of clothing in Kenya; my business partner had been born in Uganda but brought up in Nairobi. I visited East Africa fairly regularly and when I attended her wedding on Lamu Island in 2002, her father — who was an architect in Kampala — suggested I visit Uganda. In 2004 I did.

Having met Pamela at The Heart, I returned home determined to do something to help. Little did I know that my involvement with Edirisa would change my life!

I established Edirisa UK in 2005. Initially, my plans were to help to improve the facilities at Bufuka Primary School, but by 2009 I had got involved in other projects including nursery schools, primary school renovations and water harvesting projects. Moreover, I was planning a health clinic that would open on Bwama Island in 2012. It is so hard not to want to get involved with everything when there is so much that can be done!

Why SNEC Was Dearly Needed

That first visit to SNEC pulled at my heart strings in a very big way. Before 2009 there was no school that catered for children with specific learning difficulties or physical disabilities in southwestern Uganda. Miha introduced me to Richard Mugayehwenki, the Kabale District Special Needs Officer, who described to me how education provision for children with physical and mental disabilities had been a much neglected area in the country.

Poor or rurally-based disabled children were rarely given the opportunity to go to school. In many instances, parents felt ashamed, believing the children to be bewitched or accursed, therefore justifying their belief that the child should be left isolated and locked in the house with no stimulation. They were deemed a purposeless drain on household resources such as food and fuel. In many cases, because they were unable to express themselves, they were simply left to suffer, often being misunderstood yet severely punished, resulting in tantrums and emotional crisis.

In the cases where children were lucky enough to start school, their teachers were ill equipped to deal with the challenges of epileptic fits, seizures, deafness and cerebral palsy. Understandably, schools which are heavily understaffed choose to focus on able-minded and able-bodied pupils.

In his travels around the district, Richard had seen the conditions that many children were suffering and was determined to do something about it. In 2008 he identified a place for a school catering exclusively for children with special needs. In Kitanga, in the hills an hour’s drive from Kabale, World Vision had built a new primary school but had left the old buildings still standing. Richard saw an opportunity to make use of these old buildings, but lacked the resources to turn his vision of a school into reality. Undeterred, he started spreading the word and parents began bringing their children.

SNEC Becomes the Focus

What I found on that first visit were around forty children with various disabilities being housed in dilapidated buildings with no beds or any other facilities. However, I could see that the teachers and other helpers were caring and trying to do their best for the children. From that day forward I put SNEC at the top of our Edirisa UK priority list. It has been a long journey, with many lessons learnt along the way, but I have enjoyed every minute of it and am very proud of what we have achieved.

The first task was to renovate and equip the dormitories with beds, mattresses, mosquito nets and storage, followed by the renovation and equipping of the classrooms. Since then, Edirisa UK has been the principal funder of SNEC and has expanded the site to include staff houses, sick bay, showers and latrines, a 30,000 litre water harvesting tank, carpentry workshop, computer room, electricity to the dormitories and office, salaries, food and more. The Government partly built a dining hall and kitchen, which we finished and equipped. Fruit trees and vegetable gardens have been planted and pigs and goats are raised on the land. These sustainable projects help provide food for the children. Surplus vegetables, along with products made in the carpentry workshop, are sold at the local market.

International volunteers have been a godsend for us. We have two small houses where we can host them, and since 2011 groups from the Carpe Diem Educational Trust have visited SNEC twice a year for a week at a time. They have been such a great asset! Each visit they assisted with a particular project and worked very hard painting walls, making creative screens, building the carpentry workshop, laying a concrete path and organising a variety of creative workshops and games for the children. We have had volunteers from other organisations come to stay on long term placements. We hope that volunteering will revive after the Covid-19 pandemic.

SNEC can accommodate over fifty children and it provides a place where they can feel happy, safe and valued. They can integrate with able-bodied children, thanks to SNEC’s position alongside the Kitanga Primary School, which is so important for their development and wellbeing. Alongside the curriculum we teach vocational skills to enable our pupils to be independent and self-sufficient when they leave the centre.

If that first visit to SNEC touched my heart, all subsequent visits do too, but for different reasons. Seeing the progress that the children can make and seeing them developing into happy and well-adjusted human beings, despite their challenges, never fails to make an impression on me. This writeup would not be complete without some of their stories.

Our Kenneth, Paul and Bonus

Kenneth came to us in 2010. He was already 20 years old but we accepted him as he was in desperate need. He was living with his uncle who kept him in a hut in the garden. He couldn’t walk and he looked like an old man. He is still with us and rarely goes home to visit his uncle. During the pandemic, SNEC has been closed but Kenneth has stayed on with a care giver. He progressed well in his studies and although he doesn’t speak very much he is able to read and write and has sent me some lovely letters. He will probably never leave SNEC where he spends most of his time in the carpentry workshop.

In 2011, a mother approached us to ask if we could accept her Paul even though he didn’t live in the district. Of course we could! Paul had been born with deformed legs and an unknown genetic abnormality that stunted his growth. His mother was very caring and had educated him at home as best she could, but he was ready for some proper schooling. He was an absolute delight, always happy and smiling despite his situation. He was clever and participated in all daily lessons. His friends carried him everywhere and he was greatly loved. Sadly, he passed away in 2015, aged 13 but not bigger than a toddler, and left a big place to be filled.

Bonus joined us in 2014, when he was four years old. He had been born with his left leg stopping just below the knee and had been getting around by shuffling along on his bottom. Through our connections with Dr Robert Mugarura we managed to get him assessed and fitted with a prosthetic leg in 2015. As you can imagine, it has changed his life. We buy him a new leg every year as he is a growing lad. Currently the false legs are made of wood, but once he is fully grown we will have him fitted with a more up-to-date metal one. He loves football and it is amazing to watch him running around the field.

Community of Care

Volunteers and visiting professionals always comment on the happy atmosphere at SNEC. Stewart Shuttleworth, a British clinical psychologist who spent time working with us said: “SNEC is a very warm and caring environment … it feels like a community; this is also seen between pupils who care for each other.”
 
Seeing the real impact that our work has made to the area is hugely rewarding, and SNEC is particularly special because of the way in which these children face their challenges with such spirit. It has been a privilege to work with them all.

Please visit the Edirisa UK website to see more of our work.

Click here for Part X of the series or check all Edirisa/Gorilla Highlands history stories out.