At a high-level executive breakfast meeting on technology in education held at the Kampala Serena Hotel, 21-year-old Diana Muwanguzi left many attendees in tears with her heartfelt words. A first-year student of Guidance and Counselling at Kyambogo University, and living with an eye impairment, Muwanguzi questioned whether Uganda’s plans for rolling out tech learning in higher institutions had adequately considered the needs of persons with disabilities.
Muwanguzi shared how people with disabilities face rampant discrimination in the communities they live and work in. Her words earned a standing ovation. At her side was her mother, who had sacrificed other commitments to support her daughter’s attendance at the event. However, Muwanguzi’s mother declined to speak on the personal challenges of raising a daughter with a disability.
A Father’s plight with an autistic son
I later communicated with and scheduled an interview with Tunaweza Foundation, a not-for-profit organization helping children with special needs and their parents.
A week later as I settled in for our interview, a relatively tall young man who was probably in his early 30s appeared in the room and introduced himself as Authima Kizito, the father of a four-year-old autistic and physically impaired boy.
During the course of my first interview, Kizito kept on attending to endless phone calls which l later discovered were part of his clientele for his local restaurant, a business he couldn’t be fully involved in due to his responsibilities to his child.
“For us children with special needs it is literally for survival, I moved everywhere to find the much-needed help for my boy, as a father, I have done a lot but Thank God he is alive,” Kizito said.
Realizing that I could not get the best of him, I rescheduled another meeting where he later dived deep into his story of raising a child with disability.
He is among the few lucky parents because on July 1, 2024, Kizito, a resident of Para village Namasuba, Wakiso District found solace at Tunaweza Foundation, a non-government organization that provides equal opportunities for disabled children.
Under the scorching sun of this Tuesday afternoon, just meters off Entebbe Road, Kizito had escorted his son to one of his therapy sessions. The now four-year-old, autistic and physically impaired was being assisted with soft skills that would enable him to navigate through life.
“I don’t know how far l will go, but I am optimistic that the skills my son has gained at this early age will help him thrive and be of good value to the country,” he said,
“Caretakers had failed us and no one could handle the burdens of carrying my boy from one place to the other let alone cleansing him of any impurities, this left much of the responsibilities to the mother and me,” “Images of my child crawling to and from his school and in the washroom break my heart,” he added.
His son’s future remains uncertain. Integration into elementary school is the next step, but the government offers few options for children with disabilities, leaving parents reliant on private schools ill-equipped to provide comprehensive support.
The Global Dilemma
Kizito’s story is just one example of the challenges faced by millions of parents raising children with special needs. A recent World Bank report revealed that children born with disabilities in 2020 are expected to reach only 38% of their full potential due to barriers in education, healthcare, and social integration.
Dolorence Wese, Executive Director of the Uganda Society for Disabled Children (USDC), explained that children with disabilities face numerous barriers beyond their control. These include physical barriers, social stigma, and the lack of access to essential services.
“In many cases, parents are ashamed of having a child with a disability, leading them to hide the child or even deny them a name. The derogatory nicknames that follow, such as Kasiiru (for mute children) or Kachodo (for children who limp), further isolate these children in their communities,” Wese said.
The lack of awareness about disabilities among parents also fuels misconceptions, with some attributing their child’s condition to cultural beliefs. Nulu Byansansa Nabawanuka, a private instructional and behavioral specialist at Tunaweza Foundation, noted that disabilities can arise from birth complications, diseases like polio, or the failure to attend antenatal visits.
Uganda’s Disability Policy Gaps
Uganda’s policies on disability often fail to address the specific needs of children with disabilities, focusing more on adults. Nabawanuka called for better skilling programs within educational institutions to help children develop life skills, emphasizing the need for teacher training to handle children with special needs.
“Teachers for children with disabilities need to be patient and adaptable. Special needs children are unique, and educators must understand that they learn in different ways,” she explained.
Experts agree that parents should be empowered through support groups and trained to become advocates for their children. These groups can provide essential knowledge on disability rights, rehabilitation, and financial literacy to ensure children receive the support they need to thrive.
Yvonne from Raising Voices emphasized the importance of teaching life skills to children with disabilities, stating, “The biggest disservice we can do is deny these children the opportunity to learn. Without exposure to life skills, they struggle to cope, make decisions, and reach their full potential.”
State Minister of Disability Affairs, Hellen Asamo, stated that the government is working on promoting community-based rehabilitation programs to support children with disabilities and their families. She highlighted the importance of life skills, both soft and hard, in empowering children with disabilities to succeed.
“We are promoting programs that teach these children soft skills through mentorship and hard skills through formal education,” she said.
However, Asamo acknowledged that Uganda still faces significant challenges in providing comprehensive support for children with disabilities, with many parents forced to rely on NGOs to fill the gaps in government services.
