Fighting for Rights of the Disabled in Africa

Jackie Ndona.

When Eugene Nsabayezu is on his motorcycle, no one can tell he's handicapped. Nsabayezu, a civil engineer and father of four, has used a crutch since a childhood bout of polio left him with a severe limp. Regardless, he travels all over his native Burundi speaking about the rights of a largely forgotten group— the disabled.

Nsabayezu is a founding member of the Network of Disabled People's Associations of Burundi. He left a well-paying job at an engineering firm to coordinate the network's activities. He and his colleagues travel to towns and villages all over Burundi producing street theater and presentations about the rights of the disabled, who are often hidden from view in small villages and towns. "There are a lot of prejudices," he says. "Some people believe it's a curse or hide the person or tell them they won't become anything. If your family doesn't support you, that can hurt."

Nsabayezu says disabled people themselves often don't know their rights. "In the interior of the country there are many people who are very poorly educated. When people catch polio, for example, others think it's witchcraft. So people hide themselves. Disabled people themselves need awareness raising."

"In Africa, disability awareness varies from country to country," says Elly Macha, a Tanzanian university professor who heads the Eastern Africa Federation of the Disabled. "Uganda, Kenya, Rwanda and Tanzania have made a lot of progress in realizing disability is a real issue and advocating for inclusion. We have other countries who are lagging behind in awareness and attitude, countries like Burundi and Madagascar, Sudan and Eritrea."

"Every family reacts differently," says Jackie Ndona, a Congolese physician who founded the National Federation of Handicapped Women's Associations of the Democratic Republic of the Congo (DRC). "Especially in rural areas, you will still find families who hide a handicapped child or treat the child as some kind of witch. In some places, thanks to a certain level of culture, people with disabilities are treated like other people, but stigmatization still exists."

She herself has lived with a partial paralysis since early childhood. "At school, sometimes my friends would make fun of me when I walked … but it all balanced out, because I had the good luck to be an intelligent child." She went on to medical school. "My university studies weren't especially affected [by my disability], except for the non-adapted lecture halls. Sometimes climbing the stairs would cause me a lot of worry and pain. But I held on. I finished."

In Africa, poor medical care for diseases like polio and diabetes, as well as the lingering effects of war in certain regions, have created a large population of disabled people who are often rejected by society, says Hughes Kule, a Congolese-American activist who helped found a shelter for disabled street youth in Bongolo, DRC. "Most street people here [in the Congo] are disabled people, because they are rejected by family and society. The family considers a disability a curse rather than a malformation. They believe it is a curse, but we believe it is largely because of the war."

"If people go to the hospital and the doctors decide they need to cut off their legs, they get fired from work because they can't work like a normal person. The government is not going to fight for them. The government says, 'We have no money, take care of yourselves.'"

Ndona says financing for her organization's projects is very hard to find. "The financing the women get is mostly for short-term projects and very occasional, without a future or a real vision of poverty reduction."

Besides underfunding, Macha says the disabled face "a lot of physical and attitudinal barriers as well as a lack of political will to have inclusive policies and programs." Her organization aims to have as many countries in the region as possible sign the United Nations Convention on the Rights of the Disabled. The convention prohibits state-sponsored discrimination against the disabled and requires signatory states to work actively to raise awareness of disability issues among the general public and the disabled themselves, and to ensure an inclusive education system.

Nsabayezu says access to education is a serious problem for disabled Burundians. "There's only one normal school that can welcome us; it's in [the capital] Bujumbura. Otherwise you can't go to normal school, you have to go to a center, and most of them are to learn sewing and carpentry and stuff," he says. "Other schools are not accessible; either they are at the top of a hill or they have many stairs. There are also students who want to hurt you. Many people decide to abandon their studies because they are rejected by teachers and students." Kule estimates that in DRC more than 70 percent of disabled youth are illiterate.

Nsabayezu himself originally planned to study economics because he knew the University of Bujumbura's economics department was in an accessible building, but instead got accepted to engineering. "A lot of people called me 'three-foot' and told me I'd gone the wrong way and they didn't need any cripples around, but I got used to it," he said with a shrug.

Nsabayezu and his collaborators, many of whom are disabled themselves, are helping disabled people fight back. "Now, even in the hills people are conscious that they have rights to defend. I think things are changing and I want to see how far we can go with that change."

With the support of Belgian NGO Handicap International, Nsabayezu's network has been lobbying the government to pay more attention to people with disabilities. They have been somewhat successful. "We have a good collaboration with the director general of the ministry of solidarity. In December 2009 we had the honor of the president of the Republic coming to our International Day of the Handicapped parade. … Before, I believe he thought there were no handicapped people in the country. He said he didn't know we had such problems. Afterward, he multiplied by five the budget dedicated to the disabled."

Now they are working toward getting the Burundian government to ratify the UN convention and increase the capacity of schools for the disabled, as has neighbouring Rwanda.

"Ratification is not enough; we need to give capacity to the government and help the government find solutions," Nsabayezu said. "We need to get respect for people, we need to get people access to jobs. We want people to know that we exist and that we are capable."

Ruby Pratka is a nomadic, Canadian-educated freelance journalist. She speaks English, Russian, French and Quebecois. Her suitcase is currently parked in Nimes, France, but her heart and mind are in East Africa.