Finding hope with four disabled children

Faith and courage. They have been the talk of their village for years, but the Kabiitos have only grown more determined to look after their four disabled children and open up a school for scores of others. It has not been easy but the couple’s support for eachother and faith kept them going.

In Nkoni village, opposite the road that leads to the Kabaka’s palace in present day Lwego District, stands a boda boda stage. As the riders wait to earn their day’s bread, banter keeps the hours racing. A stranger attracts as much attention as anxiety. Gladly, these bodabodas know just about anything and most people in the town. Mary Kabiito is no exception.

“That woman who produced disabled children” is their best description of her. Like those riders, many in this village allege that Kabiito was bewitched and some criticise her for refusing to “sort out” her misfortune by going to witchdoctors. “It could have been a curse from either the husband’s or the wife’s ancestors,” the youthful boda boda man who was giving me a ride to Kabiito’s home volunteered. “They were told to cleanse themselves. There are so many herbalists to sort out their condition, but they refused to take heed.”

A decision by the almighty
“That is all nonsense and I have had enough of it,” an irritated Kabiito later tells me. “Nobody has bewitched us. We have long discovered that it is not just our children who suffer from this condition. There are thousands of other such cases in the world and I don’t believe that all of them have been brought about by witchcraft. I know what is wrong with my children and I have come to accept this.”

Her husband, Moses holds nearly a similar view. He says, “We were told by the doctors that their problem was related to the brain, there was no way we could go to any witchdoctor for help. It was not necessary to open a debate whether it was genetic from my family background or her family background. We both realised that it was God’s decision and we both resolved to stop listening to such talk and just take care of our children.”

The first shock
The couple got married in 1981 when they were teachers at Church of Uganda Kabuwoko Primary School. Their first born, Faridah Nassuuna, was born normal and is today married and working with a Microfinance organisation in Iganga District. “We both lived in the teachers’ quarters and when the second born, Medi Kagolo, came, we both thought we had had a normal child. He laughed and played like the rest of the other children. However, after seven months, a woman told me there could be something wrong with our son. She told me to observe his legs carefully.”

At first she did not notice anything, but later, she realised that he had taken too long to start talking. His legs also looked like they were crisscrossed; a condition she later learnt is referred to as a scissor gait. He was not able to walk and by the time he was three, it was clear he would never walk because all his limbs were bent and crooked. “We had taken him to nearly every doctor that we knew in Masaka region, but none ever offered any useful help,” Mary says.
Their third born child, Amili Bukenya, is normal and is currently studying Business Administration at Nkozi University, just like their fourth born Zaina Nandaula who is also a student at Nkozi University.

All in a day’s work
However, their fifth born, Hajara Nabukenya, the sixth, Hassan Kabiito, and the seventh, Zulaika Nambejja, all suffer from the scissor gait and are unable to speak. Looking after their four children was not an easy feat.

“They have to be cleaned and attended to like babies. Because of their deformed nature, it is not even easy to dress them up. They have to be loved and appreciated like all the other children although often, it is a question of guess work to understand what they want to tell you. They learn extremely slowly. Taking care of them requires a lot of water and soap and very many changes of clothes as they often get soiled.

“They needed constant physical care, yet we were teachers who had to be in class teaching instead of staying at home. So after we settled here and we started teaching at Kasaana Primary School, we always woke up very early and we took all of them with us to the school. I was offered a wheel chair into which about three of them would fit and Moses would carry the other one. We became spectacles to behold as we walked to school to teach with our children. Between lessons I would go to them under the tree-shade to clean them,” she narrates.

Not giving up
Another challenge highlighted by her husband is telling when they are sick. “They will not tell you what they feel. When you go back home, you are only told by a house help that so and so did not finish his usual portion of food or that he or she refused to eat and then you start guessing what the problem could be. “Moreover it is not easy to carry them to the hospital. A mentally and physically disabled person is not easy to carry on our small 50cc Suzuki motorcycle. Somebody must sit there to hold him. So sometimes we have to hire a car and other times we bring in a health worker.”
While they gave other people’s children hope for a bright future, the couple felt they were robbing their children of the opportunity to have an education.

The couple did not give up on their quest to give their children a better life. With their savings, they bought land and built a house. The simple brick house with an iron sheet roof, has since gotten an extension that houses 30 or so disabled children that have, over the years, come under their care.

A mother to many like hers
Mary who has since resigned from government service to start her own school of mostly disabled children sought to upgrade her education. “I used to be a Grade 11 teacher and I asked my husband if I could upgrade and especially train in special needs education. But he said that while he was willing to let me go, he could not manage to take physical care of the children in my absence,” she says. However, she was lucky to be admitted to Misanvu Grade III Teachers’ College where she was given a house for the children and her. “I was then able to take my lessons and sneak out to look after them. Moses visited us regularly to bring provisions.”
After her Grade 111 Teacher education course, she applied for a diploma in Special Needs Education at Kyambogo and upon admission, the Uganda Society for Disabled Children offered her a home near the university where she would stay with her children while she took her lessons.

“Now that I had the diploma, I felt well equipped to give some education to my children. A few years ago a team of visiting British nationals asked me what I wanted them to offer me. I told them I wanted to start a school for disabled children. I also told them that water was a big problem to us.” Already some people had recognised her as a very kind woman. She had accepted to adopt a disabled child when approached by Villa Maria Hospital. That, she tells me, is how they got Baby Michael, who was also both mentally and physically disabled.

Today, Kakunyu School for Nursery School Children with Special Needs tells a story of a family’s persistence and courage. There are 60 children in the school who have different forms of disability. Unfortunately, the three large water tanks which the contractor built developed cracks within a few weeks and the caretakers have since had to fetch water from a well in the valley. Mary says she has to pay for the water and this is very expensive.

Both husband and wife can truly be said to have accepted their position. They are so open and speak freely about it. They are quite cheerful and definitely loving to all their offsprings and to the rest of the children under their care. It is rare to find a married couple so united and bonded together by a common problem.