Fahad is a six year old boy. He used to live in Bugembe, a small village in Eastern Uganda. He lived there alone with his father. Soon after his birth, it became clear that Fahad has a mental and physical disability. His mother disappeared and so his father took care of him. However, Fahad’s father needed to work and so Fahad was left home alone, in a small dark room in the house with only a radio to entertain him. Fahad cannot go to school: schools do not allow him to follow regular classes and special programs are not available in his area. But in 2010, Fahad’s father was not able to take care of Fahad anymore. He took him to some family members in another village but unfortunately, they did not really know how to take good care of him.
Besides that, they thought his disabilities were a curse on the family. They gave him very little to eat and he was left to lay in a hut by himself all day. Fahad ended up being extremely malnourished, weighing only 9 kilos by the age of six. He was covered with wounds that were caused by rubbing himself on the floor out of pure boredom and the left-side of his body was swollen. He was unable to stretch his arms and legs or move his hands, because he was lying on the left side of his body all day.
Fahad is not an exception. Children with a disability in Uganda face many difficulties. Stigma towards disabilities is still present to a large extent, which affects not only people with a disability, but also their family and community. Disabled children are very dependent on their families. They are raised and taken care of by parents, siblings, aunts and other family members. But children with a disability also face many difficulties within their family.
Because of the stigma, family members may neglect them or run away from them. Often they simply do not know how to take care of them, even though they are loved. This has extensive consequences: children with disabilities do not get education or health care and do not participate in the community. This may lead to isolation, no opportunities of a job later in life or even to death.
Bulungi Foundation wants to help children like Fahad. Bulungi Foundation is a small foundation and works mostly in the Jinja and Kamuli districts in Eastern Uganda. Bulungi works on a small scale without intervention of the government or large organizations, but wíth the help of the Ugandan people themselves. Bulungi also supports adults with a disability, but the focus is put on children: children are the future!
Bulungi was officially founded in February 2011. The reason for this was the stay of Renate Sluiseman from the Netherlands as a volunteer in Jinja, Uganda. In 2010 and 2011 Renate worked for 15 months in Jinja and began the basis of Bulungi. After being back in the Netherlands for 7 months, Renate has returned to Uganda to expend Bulungi and start up more projects.
The main goal of Bulungi is supporting children with a disability and their families in Uganda. We do this in a few different ways.
- We directly help children with a disability. We provide basic needs such as food and healthcare, but also education and special equipment like wheelchairs.
- We support the parents and give them the equipment they need so they can take care of their children by themselves. We think that children, if possible, should live with their own parents or in their own communities. By teaching parents how to take care of a child with a disability and giving them the support they need, Bulungi can make this possible.
- We create awareness about people with disabilities in families and communities, so children with disabilities are more accepted in their communities.
Arise and Shine Uganda
Arise and Shine Uganda (AASU) is a Ugandan partner organization of the Bulungi Foundation. AASU is a non-profit organization with interventions in both Jinja and Kamuli district. The main goal of AASU is sustainable community development through quality education so that children and adults can reach higher living standards through quality education. AASU was founded in 2010 by Sharon Nyanjura, a young Ugandan woman. Bulungi works closely together with AASU on their projects. This offers Bulungi the possibility to work very close with the Ugandan society and culture and to set up projects in a way that they can be continued on a long term basis by a Ugandan organization with funding from Bulungi.
Bulungi currently runs the following projects in cooperation with Arise and Shine Uganda,:
- A special ‘Bulungi group’ in the Arise and Shine Uganda Nursery and Care home in Jinja. Bulungi has a small group of children with a disability who are living in this home. The group of children runs along in the daily life of all the children with the extra care they need.
- A special class for children with a disability in the Arise and Shine Primary school in Kibuye village, Kamuli District. For example a few children are learning sign language and there is, with the limited resources that are out there, special education for children with mental health disorders.
- Sponsorship for school fees: In many cases, children, mostly with a physical disability, are able to go to a normal school but are not in school because either parents can’t or don’t want to pay for the school fees or schools in the area are not accepting the child because of the disability. Bulungi looks for sponsorship for those children so they can go to school, mostly to the Arise and Shine primary school which opens its doors to children with any disability.
- Providing information and training to parents of children with disabilities in the villages: We are following families in the villages by doing home visits. During this visits we make sure that the child with a disability is in a good condition and we teach the parents how to take good care of them.
- We give lessons to students from secondary schools in either Jinja as Kamuli district. In these lessons we teach the students about different disabilities, what can cause a disability and how to treat people with disabilities. With these lessons we want to create more awareness about people with disabilities.
At this moment the Bulungi Foundation is starting up two new projects:
- We are building a ‘disability center’ in Kibuye village, Kamuli District. This disability center is going to be the center in the village where people with disabilities and children with disabilities with their parents can come together for information and support. The center will also be used for information sessions for people in the village to create more awareness for our target group.
- We are starting up a ‘Day Care’ program for children with a disability in Jinja. This daycare will be set up on the compound of the Nursery and Care home in Jinja. In this day care children will play games, do activities and get special education at their level.
On thedifferent projects we have staff working who we train how to work with children with a disability. In this way we create job opportunities for Ugandan people. We always have a few volunteers working for Bulungi. The volunteers do many different things, from teaching children sign language in the village to giving lessons about disabilities in communities and schools.
With the help of Bulungi Foundation Fahad is doing fine. When we heard there was a little boy in such a bad condition we went to the village where he was living and took him to the hospital in Jinja. Despite of his critical condition Fahad recovered quickly and is now living in the Nursery and Care home in Jinja. From the sick and malnourished boy we found in the village Fahad has changed into a happy boy who smiles a lot and loves being around all the children in the house.
When you ask in Lusoga or Luganda – the two local languages that are spoken in Jinja and Kamuli districts in eastern Uganda – ‘Oli Otya?’ (How are you?), almost automatically you will get the answer ‘Bulungi’ (I’m Fine!). That’s what we want for our ‘Bulungi children’, that when you ask them how they are they can tell you like Fahad: Bulungi!
* Sluiseman, RC; Family role of children with disabilities in Kamuli District, Uganda; masterthesis proposal 2012