Ronald Ochieng smiles before bursting into laughter as his mother, Dorcas Auma, gently touches him and looks into his eyes, trying to communicate with him through touch and gestures. The 11-year-old boy was born with multiple disabilities in Alere Village, Abongatin Parish, Amugu Sub-county in Alebtong District.
He cannot talk, hear, or walk. His condition requires round-the-clock care. Each day, Auma wakes Ochieng from his sleep, bathes him, and gets him dressed before preparing food for her other four children. Despite the challenges, her love for her son grows stronger with each passing day.
Ochieng sleeps on a slim mattress covered with a polytene bag inside a grass-thatched hut. He shares the house with his siblings, who sleep on a mat placed about half a metre away from his bed. The children’s hut is located about 30 metres from the parents’ grass-thatched bedroom.
‘He was a healthy child when I delivered him at Amugu Health Centre III in 2013. After two weeks, his head started swelling, and by the time he was four months old, the condition had worsened. He underwent surgery at a hospital in Mbale City, but his right arm and both legs remain paralysed,’ Auma says.
Ochieng cannot sit on his own and is very emotional. It is difficult for Auma to know if he is hungry or unwell.
Isabella Akello, the program manager of Link to Progress, a non-governmental organisation that works with marganalised communities in the Lango Sub-region, says most children with disabilities in the rural areas of northern Uganda are either moderately or severely malnourished.
‘They are not eating well because their caretakers cannot afford the healthy food that can give them a balanced diet. Before a caregiver thinks about giving a child vegetables or fruits, they think about where to get the child’s medication,’ she says.
When Daily Monitor visited a family in Obangakura Village, Amuria Parish, Aloi Sub-county in Alebtong District, we found Solomon,* who is living with disability, lying naked in a leaking grass-thatched house. His mother died ten years ago, and five years later, his father fled the home.
Solomon and his three siblings are under the care of their grandmother, Rose Auma.
‘My son ran away because some people in our culture believe that it is a curse to have a child with disability in a home. They think you committed an offense in the past and God is punishing you for it through the child’s physical condition,’ Auma laments.
Mobility issues
Mobility and the functionality of assistive devices offered to some children with disabilities are a challenge. Some charity organisations distribute assistive devices without conducting assessment exercises.
‘They have to assess the communities and homes where the children live. Before a wheelchair is given out, can it pass through the door of the house or hut? Can the mother push it on the rough road to the garden, church, or to school?’ Akello asks.
A range of barriers limits the ability of children with disabilities to function in daily life, access social services, and engage in their communities. Several caregivers of such children do not have the self-esteem to coexist with their relatives and friends, which makes them very vulnerable.
‘When a woman is carrying a child and hears people call the child angwalu (disabled), it is not the best thing to her ears. So, she will fear associating with people,’ Akello explains.
Several disabled children like Solomon have a passion for learning, but they face a significant obstacle; their disability makes it difficult for them to stand or walk. His grandmother cannot afford a wheelchair that could be used to push him to Awiny Primary School, about three kilometres away.
Patricia Akidi, who lives in Rwaksaza Village, Ibuje Sub-county in Apac District, is the only child who did not attend school in a family of five because of her disability. She cannot read or write.
‘I collect tall grass, which I tie into brooms and sell by the roadside to make a living. However, I need a vocational skill to make more money,’ she says.
Victor Opio, a 17-year-old boy with disability, lives with his grandmother in Apac Town after he was abandoned by his parents.
‘I am supposed to be in Primary Seven now, but I did not sit for the Primary Six end-of-term examinations. I had difficulties accessing school. My grandmother used to carry me to school, but if she was busy, I would skip school,’ he says.
Sarah Aceng, the LC5 female councillor representing persons living with disability (PWD) in Apac District, says several children are being discriminated against, even within their families.
‘Disabled children are poorly fed. Family members go away for a day or days and do not leave them with food or water. They are denied their land rights, while some are abused both physically and emotionally. Those with mobility challenges suffer the most,’ she says.
Brenda Ebong, a mother of an 11-year-old child with disability, says too many responsibilities prevented her from taking her son to school.
‘My son fell ill at the age of four and became disabled. At the time, he was attending school, but he is now unable to go to school because I have to feed him, carry him on my back, and bathe him, besides my other household chores,’ she says.
Several children with physical disability in northern Uganda face similar challenges in accessing education. The lack of assistive devices, inadequate infrastructure, and limited support denies them the opportunity to reach their full potential.
Faith Aol, Alebtong District’s inspector of schools, acknowledges the district is not doing well in terms of inclusive education.
‘The majority of our 76 government-aided primary schools do not have adequate infrastructure and learning aids. There are no ramps and no teachers to cater to children with disabilities. However, there are plans to upgrade the schools,’ she says.
Nancy Akello, a social worker, says children with physical disabilities go through a lot as a result of climate disasters such as floods and prolonged droughts.
‘When the roads are impassable during the rains, a PWD cannot use a wheelchair. The situation is the same during prolonged drought because the rugged terrain damages their wheelchair,’ she says.
Learning challenges
PWDs cannot travel long distances to look for water. Those who try are vulnerable to sexual abuse. Dr Denis Mugimba, the spokesperson of the Ministry of Education and Sports, says the government is incapable of providing adequate infrastructure and learning aids to all the primary schools within the country.
‘We have over 12,000 primary schools. There are 66 special needs schools, and they have some capabilities. However, we are planning to renovate them. However, you cannot make every primary school a special needs capability school. It is too expensive. No country does that,’ he says.
Dianah Leah Seera, the program officer for Inclusive Education at the National Union of Disabled Persons of Uganda (NUDIPU), says Uganda has not yet fully achieved inclusive education, adding that the country is mainly in the stages of integration.
‘There is a skills gap in how to support learners with different categories of disabilities. They must have studied Braille to be able to read and support learners and even operate the Braille slate. If it is sign language, the teacher must be able to sign and interpret to support the learners,’ she says.
Seera adds that there should be continuous professional development by both the government and development partners to bridge this particular identified gap.
‘A Braille machine costs about Shs3.6 million, and each child needs one. However, in the special needs schools, the government has done its best to provide, and in the schools where there are units, at least one or two machines have been provided. But in mainstream schools, it is still a challenge,’ she explains.
NUDIPU assumes that in every village, there is a child with a disability, and for inclusion, children with disabilities must go to the nearest schools within their community. The reason they are not accessing the nearest schools within their community is because of these gaps.
Another challenge is the transition from primary to secondary school. The Persons with Disabilities Act 2020 indicates that if a school admits a learner with a disability, it must make the school accessible for that learner within three months.
‘But the schools’ attitudes are not receptive. First of all, it could be out of ignorance or just deliberate. Some may not know that these laws exist. That attitude goes up to the home. Some may never see the inside of a classroom because their parents chose to prioritise their ‘normal’ siblings,’ Seera adds.
According to 2021 UNICEF statistics, children with disabilities are 24 percent less likely to receive early stimulation and responsive care, and have 42 percent fewer chances of achieving foundational reading and numeracy skills. The probability of never attending school is 49 percent higher for them.
But the extent to which children with disabilities can function, participate in society, and lead fulfilling lives depends on the extent to which they are accommodated and included. No matter their story, every child has the right to thrive.