LUSAKA, ZAMBIA – Dennis Ngoma, 25, does not know how it feels to feed himself or use the toilet on his own. He says he has been dependent on his aging mother for his entire life. While he has always wished to learn a skill to sustain himself, no one has been willing to help him.
Ngoma lives with his widowed mother, Tesaine Ngoma, 56, in the heart of Zambia’s capital city, Lusaka.
“I have accepted that [I] am different from my friends,” he says with a smile on his face. “I am used to this, and I spend a lot of time listening to the radio.”
Ngoma just received a bath from his mother. His white shirt is a deep contrast to his dark complexion. In his wheelchair, hit sits just a few feet from the road. He says he likes to watch the people pass by.
His mother says she knew Ngoma was different right from the start.
“After delivery, I was told my baby never cried like the other normal babies,” his mother says. “He was unconscious and only woke up in encumbered,” she says referring to her son’s disability.
Ngoma has cerebral palsy, a physical disability caused as a result of damage to the parts of the brain that control movement during the early stages of development.
“He doesn’t do anything on his own,” she says. “I bathe him, feed him, [and] take him to the pit-latrine.”
Although Ngoma has a lot of friends who visit him, he says he is heartbroken and ashamed to be bathed by his mother at his age.
“I am embarrassed because I cannot do anything by myself and my mother does it for me, even feeding me,” he says.
His mother says, sadly, his condition is not improving with age. The older he gets, the more frequently he gets sick, she says. And the older she gets, the harder it is to take care of him.
“During Christmas, a young boy threw a firework just next to where he was,” she says. “He was so scared. As he was trying to escape it, he fell down and hit his leg. Since then his leg [hurts], and it makes him scream at night.”
For Ngoma, life is difficult. But he is not the only disabled person in Zambia facing challenges.
Hundreds of thousands of disabled people in Zambia lack education, care and support at the familial, local and national levels. Advocates say religious myths have long characterized disabled people as unclean and unholy, which has led to a lack of governmental support. In Zambia, there are no schools for students with special needs, and few businesses offer employment opportunities for the disabled.
Of the 9.3 million people included in Zambia’s Population and Housing census of 2000, 2.7 percent, or more than 250,000 residents, are disabled, according to the Central Statistics Office. Results from the most recent census, which began in October 2010, are not yet available. Among the disabled, 40 percent never attends school and another 40 percent completes just a primary education. Of those who are of working age, 45 percent are unemployed and just 33 percent are students.
Disabled people are only able to look after themselves if they are given the proper education and resources, says Josephine Shinata, acting executive director of the Zambia National Association of Disabled Women, a nonprofit organization in Lusaka working to promote the rights of disabled women.
Shinata says that poverty, family negligence and lack of resources from the government drive the disabled into homelessness and poverty.
Although the government of Zambia included a chapter on disability in the Fifth National Development Plan last year, Shinata says there has been no marked improvement in policy, employment or care when it comes to the disabled in Zambia. Representatives from the government did not return request for comment.
Recent documents did reveal that local government in Lusaka is concerned with “disabled persons.” Mismanagement of resources and an overall lack of awareness have caused even the Zambia Agency for Persons with Disabilities, a legally constituted body that aims to help people on behalf of the government, to raise criticism among advocates here after they failed to use their 400 million kwacha, or $84,000 USD, monthly allowance to create any programs to further the rights of disabled people here.
“For as long as there is no action by the government, then the disabled will continue to live in absolute poverty,” Shinata says.
In particular, Shinata says disabled people are denied education. There are few schools for the disabled because of a lack of trained special education teachers.
“Disabled people are not enrolled in normal schools and are told that there are no teachers to handle them,” she says.
Ngoma’s mother, Tesaine, says she used to take her son to a special school at the University Teaching Hospital, Zambia’s largest hospital, but she stopped because of a lack of transportation. When the complimentary hospital transport was discontinued, she says she could not afford to transport her son to the school.
“I have tried almost anything to find him a place at [a] special school so that he can at least use his hands, but unfortunately I am always turned down,” she says. “I remember taking my son to several charity organizations, which provided special education. My efforts were in vain.”
She says they have denied her because her son’s condition is too severe and because her home is too far from the schools and they don’t have transportation to take Ngoma to and from school. One boarding school told her that its stairs were too steep to accommodate Ngoma’s wheelchair.
“It is the responsibility of [the] government to ensure that disabled people have access to education and [are] given skills, as well as employment, to sustain them,” Shinata says.
The government ratified the U.N. Convention on the Rights of Persons with Disabilities last January after signing it in 2008. Some say that was an important step to providing better care to the disabled people of Zambia. But government officials say ratifying the convention only led to increased expectations that they cannot accommodate. The convention pledges a commitment to mobility, education, accessibility, employment, rehabilitation, participation in political life and overall equality for their disabled people. The reality of funds and access to such programs in Zambia, however, is weak.
Zambian journalist Chola Kafwabulula writes that the ratification of the convention is not an end in itself, but a means to an end.
“The convention is just a piece of paper unless the government approaches the plight of persons with disabilities from a different perspective in order to make sure that they receive access to good education, housing, health care and any other opportunities offered to everyone else,” Kafwabulula writes.
Kafwabulula adds that this lack of access is what creates the biggest disability.
“What we find disabling to persons with disabilities is not our disabilities but the obstacles that our own societies continue to place in our lives,” writes Kafwabulula, who is disabled. “As the saying goes, ‘We are disabled because we live in a disabled society.’”
Thanks to the lack of government resources, advocates say the burden of providing complete and continuous care for disabled people here falls on families. But more often than not, social workers say families cannot accept responsibility for a disabled family member because of financial constraints.
As a widowed woman, it is increasingly difficult for Ngoma’s mother, to care for her severely disabled son who is now 25 years old. Ngoma’s father died 10 years ago. In that time, Ngoma’s mother says she relied on her other children to help. But when they found jobs and families of their own, Ngoma’s care fell to her alone.
“I have to move his wheelchair from one position to the other,” she says. “Sometimes as I lift him from the chair, I fall down. Because I am growing old each day, I am losing my strength.”
In addition, she says she does not have time to earn money for the family.
“I do not rest, even when [I] am sick,” she says. “I have to care for my son all day. I cannot even do a successful business because I have to be at home all the time.”
Ngoma says he worries, too, because he is so dependent on his mother.
“I am afraid of the future,” he says as he looks away. “What if something happens to Mother?”
Ngoma says he tries every day to learn a new skill that will allow him to take more responsibility for himself.
“I did not choose to be like this, but I believe there is a purpose why I am like this,” he says. “I have accepted my condition, and [what] I really want is to learn a skill.”
Despite Ngoma’s disability, his mother says he is intelligent and, if given an opportunity to learn, could be more self-sufficient.
“My child is very intelligent,” she says. “When children have damaged radios or toys, they come to him and ask for him to help them. He tells them what to do, and it works.”
Ngoma says he could turn this knowledge into a skill if given the chance.
“If only I could learn how to use my hands,” he says.
As the rain begins to fall this afternoon, his mother quickly moves his wheelchair into her late husband’s two-room apartment. She strains to lift her son out of his wheelchair and tucks him into a warm blanket on a flat mattress.
“My dream is to acquire a skill and start my own business,” Ngoma says. “I want to work and build a home for my mother. If only someone can help me.”
