Seeing disabilities up close

Stigma, rejection, myths, lack of awareness and access to special equipment are preventing Burundian children living with disabilities from enjoying their rights. Sixteen private centres came together to assist with limited means and helped the people ask for assistance. In the following eye witness report, we are going to tell you what we’ve seen and heard when we visited Akamuri and St. Kizito, two centres in the capital of Bujumbura that are helping people living with disabilities.

It was around 10 in the morning when we arrived at Akamuri centre that is located in Jabe, one of the popular quarters in the capital of Bujumbura. The director was not in. “He had stepped out for a while,” his assistant told us.

Ten minutes later, a tall, black and thin man wearing spectacles came in. He introduced himself and welcomed us into his office. Gilbert Bizimungu is the director of 16 centres that came together to make up a Burundian network that aims to help people living with disabilities. He seemed to be tired though it was still early in the morning. He took us on a tour of the key services in his centre.

“Between 120 and 150 disabled people are brought here daily requesting our support. It is beyond our capacity,” he explained sighing. “Our support taps into helping them to be able to live a normal life after reeducation. Services given depends upon the kind of disability they have.”

We started entering rooms. The first is used to train disabled people. They learn to cook, to practice hygiene, raise livestock and learn many other tips to enable them to fend for themselves and for their families. Unfortunately, it is rare to get equipment to help them become autonomous, the director said.

“We need to be creative to survive,” he told us as he headed to another room where just 20 minutes before children were making paper jewels and other ornaments. Those objects are not really valuable, but people who visit the centre often buy them as souvenirs.

“Look! Those are the boxes in which World Vision Burundi sent us clothes, along with 100 wheelchairs last year. We did not throw them away, they are useful,” he showed us.

“It’s not easy to find people to support us. Disabled children are left to their feats to the extent that even their own parents reject them. Some families, when they give birth to disabled kids, they just sneak into the compounds of our centres and drop them there. It has happened more than once. We have 16 centres throughout the country,” he said as he invited us with a gesture of his hand to follow him.

This time we stepped out of the buildings and followed him into the courtyard of the centre. We met people, especially children with different disabilities, some with leg and arm disabilities, some paralysed and others with mental disabilities.

Gilbert kept talking and told us about rejection and the stigma people with disabilities face. People often consider it a shame to give birth to a disabled child. Myths are told around disabilities and many people have long believed that when a disabled child is born it’s a sign of a curse on the parents who originally misbehaved themselves when they were still young.

The director also brought us to a place where they have rabbits that they are raising. A young smiling man with a language disability received us. He is in charge of taking care of rabbits. He came to the centre 12 years ago and, after he received training at the centre, he remained there as there was no equipment to send him home with to help him and his family. When we met him, he had recently got married. He still couldn’t speak correctly but his situation had improved a lot.

After the rabbits, we visited the training rooms. Parents were using specialised equipment to help their children to do what they could not do before. It could either be to walk, to sit down or to stretch.

After visiting Akamuri centre, Gilbert brought us to a second centre, some 12km away, in Saint Kizito. This centre has a boarding school and is run by Catholic nuns. There, children benefited from World Vision wheelchairs. On our way, he told us that many people have said it’s difficult for disabled people to enjoy all their rights in a country where even the non-disabled are facing extreme poverty.

At St. Kizito, 232 children are hosted in a boarding primary school; and during its 50 years of its existence, 8,500 disabled and 3,200 non-disabled children have been served.

“We sensitise by example and the mentality is changing slowly. Some parents give us their disabled children and do not come to visit them in the beginning. It is when they realise that their children are progressing in school that they agree to cooperate,” explained sister Anne Marie, the director of the centre.

“I think it’s a lack of awareness which prevents parents from cooperating. If they knew, they would not. Some of our staff members grew up here, now they are helping others,” sister Anne Marie said while leading a tour of her centre. “Yes, there is one of them,” she said and signaled to a man.

He walked limping to where we were. Nestor is his name, he teaches Grade 6 and in the national test his pupils do well.

“I can say that I was lucky. My disability allowed me to walk and my parents were not against me. But for others it is not easy. Unfortunately my colleague Leon is too busy so you can’t meet him. He would tell you though. He is in the warehouse. He started school when he was 18 years old. His parents had hidden him at home until a neighbour of his family convinced them to bring him here,” Nestor said.

As Nestor recounted, sister Anne Marie was standing aside surrounded by disabled kids, nodding at what his staff member was saying.

There still much to do in order to enable all disabled Burundians to enjoy their full rights. Only 4,000 disabled people are assisted by the network, while there is an estimated 1.275.000 people in the country living with a disability.

According to the statistics provided by the World Health Organization (WHO, 2011), 15 per cent of the Burundian population lives with some form of disability. Gilbert regrets that no survey has been carried out so far in Burundi to know the exact number. “Fifteen is an approximation; Burundian disabled people can be more than that, the recent civil war left behind many crippled people. All along the 15 years it lasted, people have been stepping on mines all over the country or being mutilated.”

“An exact number of disabled people in the country is needed. This would help people who want to help out. A mobile clinic would afterwards be required to be able to access a large number of them. We are sure that many people are prevented from coming to seek for assistance by long distances which separate them from our centres,” he said as he was biding a good bye.