This is the fifth part in our series analysing policy and practice on disability in Uganda. Alon Mwesigwa reports about children who are discriminated against and regarded as useless just because they have disability. Even their right to play is denied.
When Gorreti Kisa caught malaria one evening in 2005, her parents instinctively rushed her to a clinic near their home in the city suburb of Kalerwe. But a well-intended move turned into a nightmare as she has since been condemned to spend the rest of her life disabled.
"The clinic attendant gave her an injection, but it seems it wasn't the right prescription," says George Bizimana, Kisa's father. "Her left buttock got swollen and the problem spread to the leg."
For over half a year, Kisa was taken to almost all hospitals around Kampala, but it all came to nothing. Even when she healed from malaria, the leg remained unstable. It slimed and Kisa could only walk with the help of a stick.
Eight years later, Kisa, 13, sits at the verandah, looking down as she plays about with her walking stick. When I attempt to take her picture, her father sternly refuses, saying we would be subjecting her to ridicule from readers.
"People have seen her enough and scorned her enough. I will not allow you to take her picture," says Bizimana.
Perhaps the father is right; neighbourhood parents have already made their verdict.
"Even people here don't allow their children to play with her," Bizimana says.
Kisa is a portrait of thousands of Children with Disabilities (CWDs) who live in isolation, denial and scorn from those around them. Daily Monitor recently reported about Lisa, a 14-year-old who spends her entire day tied to a tree. Lisa's 'crime' is that she is deaf and can't feed herself.
Lisa and Kisa are disabled, isolated and have had their share of the public ridicule. Ben Waburokho, an official at the Uganda Child NGO Network (UCRNN), says it is not just these two. He says thousands of CWDs are being hidden in bedrooms, regarded as a source of shame.
"Those who hide them say they (CWDs) cause shame to the family and a solution is to keep them away from public," says Waburokho.
But all this is against the UN Convention on the Rights of People with disabilities, to which Uganda is signatory. Article 7 of the convention urges state parties to take all necessary measures to ensure that children with disabilities fully enjoy all human rights and fundamental freedoms on an equal basis with others.
Indeed, when the 2004 Orphans and Other Vulnerable Children policy was adopted, many thought that challenges affecting vulnerable children would disappear. That optimism was understandable. While the policy doesn't mention CWDs but categorises them in general under the vulnerable children, its provisions appeared strong.
Vulnerable children should have access to education and health; should not be discriminated, impoverished, or regarded not as helpless victims. They should be treated as actors in their own right.
While a number of policies, like the Special Needs and Inclusive Education policy (2011) and the Universal Primary Education policy, have been put in place to supplement the 2004 OVC policy, progress is scanty.
Edson Ngirabakunzi, executive director of the National Union of Disabled persons of Uganda (Nudipu), says that there is commendable progress in areas like access to education and the health of persons with disabilities.
"We must accept that at least the government has done something. And we must agree that a lot needs to be done as well," says Ngirabakunzi.
But issues such as discrimination, poverty, abuse and neglect have remained a baffling factor. Research shows that many CWDs have been abused sexually - with underage girls being impregnated while the perpetrators remain at large.
Official figures from Nudipu show that people with developmental disabilities are four to 10 times more likely to be victims of crime than able bodied people. Worse still, the vast majority of abuse toward those with disabilities is perpetrated by family members, peers or professional caregivers.
"There is still a long way to go, especially in terms of empowering the PWDs to fight perpetuators of crime on them," says Ngirabakunzi. "They don't have the ability to defend themselves. They just remain at the mercy of the abusers and it is unfortunate that the abusers walk free."
He adds that Uganda's biggest problem is not policies and laws, many of which are good, compared to other countries; the problem is implementation. CWDs face multiple suffering given the additional costs they have to incur to meet their needs. For instance, if CWDs are going to school they have to incur an additional cost for special scholastic materials. Many can't afford these, which explains why the school dropout rates for CWDs are very high.
Official figures show that 90% of the PWDs don't go beyond primary education, with only 2.2% said to have attained post-secondary level of education.According to Martin Kiiza, the secretary general of the National Council for Children, government achievements in protecting vulnerable children shouldn't be underestimated. Kiiza says the government is a signatory to international conventions committing it to protect children sends a clear signal that there are inherent efforts to protect children.
"First, the 2004 policy is a guiding tool for advocacy. It is a guiding document that is supposed to inform laws and what should be implemented," says Kiiza.
"The government has very much done some work. It ratified the UN convention, put in place institutions like National Council for Children (NCC), ministry of Gender and Labour Development - all advocating for children rights and protection in whatever state they are in," Kiiza argues.
Yet when pressed, Kiiza concedes that there is a problem when it comes to implementing child friendly policies.
"Implementation is still our biggest challenge. The benefits of all these policies have not trickled down to the local people that these policies are supposed to benefit.
"That's why for instance materials that the disabled children use are still so expensive and many can't continue with school. As NCC, we are determined to see that all materials used by the CWDs in school are subsidized this year," says Kiiza.
Led by NCC, about 150 disabled children presented a petition to the speaker of Parliament last year asking the government to address their issues. They protested the violation of their fundamental rights.
Among other issues, they cited the lack of respect for them from the family, communities and fellow children - as a result, the disabled children do get the care and protection they are entitled to like children.
All this happens despite the existence of the 2004 OVC policy. With the petition to Parliament, the children were telling the powers that be that "you are letting us down". It remains to be seen if MPs can do something to more effectively help children like Lisa and Kisa to come out of their isolation and discrimination.
This Observer feature was prepared with support from the National Union of Disabled Persons of Uganda (Nudipu).