Disability is not inability, Clementine Uwitonze, a gospel musician commonly known by her stage name, Tonzi, told The New Times in an exclusive interview last week.
She had just returned from the airport to receive her long-time friend Mariam Nteziyaremye, a Rwandan singer based in Belgium. The duo, in collaboration with a local group Birashoboka Dufatanyije, are preparing a festive season bash for children living with disabilities.
"My package is called ‘Spread Love Christmas’. It is a special Christmas package for kids living with disability. I want to celebrate Christmas with them; show them love. The objective is to create much needed public awareness about the plight of these children; stigma and these children’s talents and special abilities.
"Our society needs to pay attention. Most often, you look around and see play areas for children set up but you don’t see considerations being made for children with disabilities. On December 20, we are going to feature these kids in a special way.”
The drive to help children with disabilities, she recalls, started back in 2012. The mother of two is determined to help other families learn to tolerate, accept and hopefully celebrate children who are not what they initially had in mind.
"The idea came when I thought of how a parent copes with a disabled child. It is hard for a parent who expects a normal baby to have one with disability. Many parents hide these children but it’s very important parents do all they can to integrate these children in society instead of excluding them. These are children capable of anything in life. They can be a gift to society if their abilities are identified and empowered.”
The community, she said, needs to be mindful and help give opportunities to children with disability.
Restricted by prejudice, stigma and poverty
Poverty on one side, high levels of prejudice against disabled children both within their families and outside, she said, are issues she wants to highlight.
"I have been doing talent detection for some years and I have disabled children with so much ability and talent. Yet they are restricted by prejudice, stigma and poverty. It is heartbreaking.”
Along with the disabled children, and her friend Nteziyaremye, a lady in her early 30s, confined to the wheelchair by disability, they will perform and entertain guests at Tedga’s Hall, in Kicukiro, on December 20.
Tonzi is also working with an association called Izere Mubyeyi, in the Kabeza suburb of Kigali.
"There is a lot of very harmful stigma in our society, all based on a wrong mindset. Imagine scenarios where a bus or cab driver refuses to allow such a child in. One of the biggest challenges is transport; when we’re going for rehearsals. Their families are poor and then there are no proper or alternative means for them. Some cannot board a motor bike.
"The best case is my friend Mariam [Nteziyaremye] who I have just welcomed from Belgium. We were in primary school together but she was lucky; her family cared for her and she is now a blessing to so many.”
Early last year, Tonzi and Nteziyaremye produced a song, ‘C’est Possible’, emphasising that disabled people are able to contribute to the world. Armed with that knowledge, her mission this festive season is to up the ante in breaking down stigma and helping disabled children succeed in life.
"We want parents with such children to know that it is not the end, and they shouldn’t feel bad about it. These children should not be hidden in homes. The biggest challenge has been letting these kids go into the public, and the stigma,” Tonzi said.
"Staring is not the real issue. Looking at them in a negative way is the problem. We want to change this. And our message will be channeled through highlighting these kids’ talents and abilities, things other regular able folks cannot do.”
Parents feel bewitched
According to Daniel Ledama, a development specialist with background in Clinical Psychology, right from birth, the life of a child with disability faces various challenges.
He said: "First comes the stigmatisation from family and society. In Rwanda many parents hide their children from the society in fear of the discrimination that will be experienced by both parents and children.
”Secondly, as they grow and attain school age, they face challenges in accessing education. Among others, he said, some parents are unable to pay for specialized schools let alone access them since migrating to another location is the only option.
Thirdly, due to lack of awareness and education some types of disability are made worse by certain practices or attempts to help.
"A common case is the use of wrong type of wheelchair. It’s not uncommon to see a young child seated in a wheelchair bigger than his size which has the potential to cause life-threatening pressure sores and deformities,” Ledama said.
A June 2017 report, "Still left behind: Pathways to inclusive education for girls with disabilities,” by the United Nations Girls’ Education Initiative and the charity Leonard Cheshire Disability on education for girls with disabilities indicated that disabled girls suffer double discrimination.
Cultural bias and rigid gender roles, it says, are the most frequently mentioned barriers to education for girls with disabilities.
"Girls with disabilities are among the world’s most marginalised groups of society, resulting from social norms and cultural bias around gender and disability,” reads part of the report.
For parents having a child born with a disability, Tonzi said, they are heroes as this is a life-long adjustment, "and so much work.”
She added: "I thank all the parents with children born with disability for they are heroes; it requires special care for these children day by day.”
Nathan Mugume, a parent, understands that it takes a community to raise a child.
Mugume said: "As a parent I think that the community needs to show love to children with disabilities; promote and embrace the culture of inclusivity. Parents, care takers, and the community need to focus on what the children can do other than focusing on what the children cannot do.”
"Regardless of their status, all children need to be loved, cared for, and most important, find joy. We cannot change their status but we can help them be the best they can be, and help them to attain their aspirations and reach their destination,” he added.