If you have ever taken care of someone with mental disability, you surely must be well acquainted with the difficult situation it creates, not only on those directly affected, but also the tedious care, financial challenges and stigmatization that comes with it.
These are some of the odds Berthilde Mukakarangwa, president of ‘Umwana nk'Abandi’, a local non-government organisation that takes care of children with mental disability.
At their premises in Nyamirambo, a Kigali suburb, Umwana nk'Abandi offers various services to over 30 children with mental disabilities, 12 of whom are severely disabled.
The services range from simple body hygiene to education depending on the degree of the disability.
Mukakarangwa’s passion for people with mental disability dates back to the 70s when her son got a mental illness while still an infant. Growing up, the boy could not talk, nor do anything to help himself, a situation that taught Mukakarangwa not only how to care for such children, but also what their families have to put up with to see such children grow.
After a series of searches for a solution, Mukakarangwa ended up at Umwana nk'Abandi established in 1991 where she enrolled as a member. There she learnt how to take better care of her son and also met people with similar problems.
However, things took a dramatic turn in 1994 when the Genocide against the Tutsi ensued forcing many of the leaders and members of the association to flee the country.
It was revived in 1995 when Mukakarangwa along with three other women had a chance to attend an international conference on the rights of mentally disabled in Nairobi, Kenya. This is where she drew the zeal to come back and revive project.
“I said to myself, I must do what I can to fight for the rights of these children,” she says.
By 1996, the organisation had about 27 members, including sympathisers and parents who had children with mental disabilities. In 1997, they were officially licensed to operate as an NGO.
Today, the organisation has 43 members; 28 women and 15 men.
It takes a big heart
Mukakarangwa says taking care of the children needs a loving heart.
“First of all, the mental disabilities are of varying degrees. Some of the children have to be washed, fed and helped with other little things that someone would easily do for himself. Others need very close monitoring, physiotherapy and specialised teaching so that they can have their state improved,” she says.
The major challenge they face is lack of enough finances to do their work as is their only sponsor is the Ministry of Gender and Family Promotion.
What they do
The organisation works for the protection of the rights of children with mental disability, improvement of their living conditions and social integration.
It also offers psychological and legal assistance for parents with children with mental or intellectual disability, and provides specialised education and training to the children in different arts, among others.
20 years down the road, the organization has registered tangible achievements, among them helping the society to change its perception of children with mental disabilities and being ready to support them.
Mukakarangwa says some institutions like banks occasionally come up to offer some support to the children.
She also treasures the fact that the government has recognised their efforts and supports them.
In 2007, they received a certificate from the First Lady appreciating them for their efforts in supporting children with disabilities. Likewise, MIGEPROF did the same.
The organisation looks forward to establishing collaborations with humanitarian agencies for more support in order to reach out to more people.
Mukakarangwa’s vision is to build larger premises that can accommodate more children, establishing a pedagogical strategy for teaching children with mental disability and raising public awareness on the rights of the children.