She is now happy she will be able to go to the neighbours’ once again. For the last 15 years, Prisca Nakyeyune has not been able to go and play with children in the neighbourhood, which is 100m just across the road, because her limbs are paralysed.
Mobility is an important aspect in the lives of people with disabilities (PWDs) because they are usually left out on so many activities of daily life. For the children, they are unable to play and socialise with others or go to school.
Many parents with disabled children think such children are a curse and a burden to the family. Some parents lock them in houses or abandon them in compounds while the rest of the family socialises since some of them are not able to move at all. Such children are likely to stay in the same place hungry, scorched by the sun. Many are left at the mercy of the neighbours to give them food if they care enough but also sometimes do not mind about them.
The good mother
Teopista Nabeyi, a resident of Katagwe-Keera Sub-county Luweero District is a mother of seven and has a disabled child whom she has taken care of for 15 years. Her oldest child was born normal but when she turned two years, she got a bad fever. The fever got treated a few weeks later but she was never able to walk again. Her legs deformed and now she can only try to kneel but only her left hand can move.
“Nakyeyune is my first born but never have I at any time felt like she is a burden to me. Her legs and arm are paralysed but I take care of her because she is a blessing to me. I also make sure that whatever she needs, I provide for her despite the fact that I am poor,” she says.
The key to a happy child with disability, according to Nabeyi is love and care to make sure she feels she is part of the family. Although she stopped going to be school because it was far and had be carried on the back to and from school, Nakyeyune also has a say in the family especially about what to prepare for the meals.
Nabeyi, like the other mothers with disabled children, faces the challenge that the fathers usually shun the duty of providing for sanitary towels because it is a “woman’s thing” so the mother must improvise.
On a good note however, Nabeyi says, “My husband treats the children equally and whenever Nakyeyune is sick, he takes her to hospital like the other children. He has never made any negative comment about her despite her disability.”
Right from the family level, disabled children are treated differently. They are given dirty and worn out clothes that have been worn by the other normal children. They never go to school or play with others.
Community has had negative attitude towards the PWDs right from the kind of names they are called (mulema- meaning lame) instead of calling them by their names. For school-going children, the stigma sometimes starts from the way the teachers handle such children.
Robinah Nakkazzi the female representative of PWDs in Kakooge Sub-county, Nakasongola District says, “I was disabled in childhood but when I demanded to go to school, I was given my sister’s old stained dress as a uniform and when I reached school, the teacher always called me mulema, my classmates would beat me or scatter my books saying I did not deserve to sit among them. I got discouraged and dropped out in Primary Three.”
People in the communities think that having a disability is a curse so they never want to associate with the PWDs. According to Jeremiah Kisejjere Muwanguzi, who is also disabled, this explains why they always stay in isolation because they know people do not like them. Access to social services such as social gatherings and health care become very difficult because some doctors and nurses do not want to touch them.
Kisejjere says, “Some people may think these are stories but when we go to some public hospitals, doctors do not want to touch us. They usually say we will be treated last even when you came first.”
During delivery, women with disability are told to climb up the delivery bed and sometimes the midwives blame them for getting pregnant when they are disabled. The men usually sexually harass them and a man who has a disbled wife does not want society to know it.
Nakkazzi says, “My husband is normal but he told me never to tell anyone that he is the father to our three children. If I dared to, then I would be killed. I have been able to take care of my children as a single mother and educated them.”
Major causes Assessment
According to Francis Mugwanya, from Father’s Heart Mobility Ministry, the verbal assessment of people in Luweero and Nakasongola, the leading cause of deformity and disability among the children was cerebral palsy. Some of the mothers had a delayed labour, and malformations while other mothers did not go for antenatal care during pregnancy. Some adult deformities are caused by accidents, arthritis and other age-related diseases.
“There has been limited access to therapy and rehabilitation so even the people who may have slight deformities worsen it by little or no exercise at all,” says Mugwanya.
Extending a helping hand
Action for Community development (ACODEV) in Partnership with Father’s Heart Mobility Ministry through Funding from NORAD (Save the children IREAP programme) gave out 160 wheelchairs worth Shs64 million to physically handicapped persons in Luweero and Nakasongola districts.
The wheelchairs were provided to ensure that people with disabilities are able to access social services and reduce the burden of the caretakers moving them all the time.
Naomi Ayot, the human rights promotion programme manager at ACODEV, says some of the children have always wanted to attain the right to education while others have been neglected but with the wheelchairs, they will be less of a burden to the parents.
“These mobility devices are very vital in their lives because they will be able to move around, play or even go to school since some of the children dropped out due to mobility issues,” Ayot says. This also reduces the workload and burden their caretaker has to bear. We, however, make sure that the devices given are not a risk to the children getting more injuries while using them.”
Muwanguzi believes the wheelchairs will help the disabled people get exposed to the community as well as a chance to grab some opportunities. They will be able to socialise with others and access basic services that are within their locality.
This is proof that assistive technology, especially mobility, makes it possible for the physically handicapped to lead normal lives.