Donatha Mutuyimana cannot communicate to her seven year old daughter due to disability of deaf blindness. She can’t see and neither can she hear or talk.
The mother of three living in Gasabo district says she has been struggling with difficulties to care for her.
In her testimnonies, Mutuyimana says since the child was born cannot, speak, hear, see and sit.
To care for this child, Mutuyimana says she imagines as she feels the little deafblind girl need a certain help.
“I can reveal that she needs porridge or food according to the period of time. I feed her with porridge in the morning, food at noon and I bathe her before I make her seated in the wheelchair. Sometimes I joke with her as I hold her as a baby and make her to smile. Whenever she is sick, she cries,” said Mutuyimana.
Besides being deaf blind, the baby cannot event walk.This mother says that she can be angry seeing her daughter not able to walk. The child only eats blended food.
Mutuyimana was speaking in Kigali last month during the celebrations of the international deaf blindness day 2017.
During the celebrations, persons with deafblind disability in Rwanda have raised a voice to seek advocacy for being recognized as a distinct category so that they get special help.
These persons have been facing various challenges including miscommunication, stigma attached to being isolated from the community and lack of equal opportunity to access education.
This mother says that she can be angry seeing her daughter not able to walk or move. The child only eats blended food.
Moving out stigma
“Before I was so sad and had no love of this child, I loved her late alone as I meet other people with the same disability of my child; and I care for her as other children even though it is not easy,” she says.
The three local organizations namely Rwanda union of the blind (RUB), Rwanda National Union of the Deaf (RNUD), and Rwanda National Association of Deaf Women (RNADW) have stand up to raise a voice for this particular category of disability which was among the five common categories established by the law.
Romalis Niyomugabo, the President of National Council for Persons with Disabilities (NCPD) said that they are going to increase advocacy following the available challenges facing deafblind persons.
“These persons face various challenges including barriers to access education, social stigma, today, they can communicate through the tactile sign language and this is among the achievements. We have confirmed to avail all the number of deafblind persons and their locations by January next year so that we increase advocacy for the available persons,” Niyomugabo said.
Niyomugabo added that players will conduct detailed research in the places where these persons live to know their needs that go most especially with education, health care, welfare as well as development.
“We used to do this in a disordered way but we are going to jointly approach them as a distinct category so that they get efficient help as for other categories who can be blind, deaf, physical disabled, but holding masters and PhD degrees today. We will be also happy to see these persons in the development all of us need,” Niyomugabo noted.
According to Dr. Betty Mukarwego, one of players of the rights of deafblind persons, representative of blind women countrywide and a lecturer at the university of Rwanda’s college of education (UR/CE, persons with deafblind disability are challenged by the loneliness of being isolated by families who cannot communicate with them.
She said these people cannot know news of their environment all advocate for their rights.
“They can’t figure out how the world looks like, people keep evolving because they can know daily updates of what is happening like today we are preparing presidential elections but these ones are left behind because there is no one to help them understand.
We are advocating for them to get a particular association, and we have trained about twenty deafblind persons with their families. We hope that these persons will be able to train others once their association is established,” Mukarwego said.
These persons were identified since 2011/2012 through the Swedish deafblind project which was engaged in doing research to know their needs and to offer trainings for deafblind people.
The requested association to be set is expected to increase research and capacity building trainings for deafblind persons according to Mukarwego.
According to Rachel Musabyimana, advocacy and communication officer in RUB, there is a hope for change.
“We hope that when these people are recognized as a distinct category will be included in planning and their needs will also be available and cared for, we also believe that all the challenges they are facing will be resolved easily,”
Since 2011, only 130 deaf blind people are recognized among thousands more who are not yet known. These people were found in five districts of the country namely: Gasabo, Gicumbi, Ruhango, Rubavu, and Nyagatare through the Swedish deaf-blind project that will close by this year 2017.
By Elias Hakizimana
