‘I Wish to Live a Normal Life’
For Many Rwandan Families, Caring for Their Children’s Needs Becomes a Job All Its Own
April 16, 2023
KIGALI, Rwanda — When Euphrasia Murekatete suffered brain damage as a toddler after contracting meningitis, her mother, Francine Iryivuze, became her full-time caretaker. Now 27, Murekatete never went to school and is mostly non-verbal. “As a jobless single mother, I cannot explain clearly how much it is difficult to raise a daughter with this kind of disability alone,” says Iryivuze. “I am poor [and] sometimes fail to feed her while she takes strong medicine. I face discrimination from my family because one of my own sons rejected us, saying that he will not return home until his sister is dead. … No one wishes to be our neighbor, as she is stubborn, breaks glasses and other materials, and [hurts] other children.”
Emmanuel Nsengimana is a project manager in Collectif Tubakunde, an umbrella of 26 organizations created in 2005 to help eradicate discrimination against children and youth with intellectual disabilities. He says that out of the 19,200 Rwandan children with intellectual disabilities today, only 3,702 of them are in daycare centers. This means the responsibility of caring for young Rwandans with intellectual disabilities mainly falls to parents, especially mothers. These economic and social realities are compounded by how Rwandan society generally views people with disabilities and their families.
Nsengimana says parents often face discrimination and stigma in both rural and urban areas. “But in urban areas, when a parent is jobless, the family becomes poor because those children have additional needs, and sometimes paying what s/he has damaged is an issue,” he says. “In rural areas, there is a number of issues because of negative mindset toward those kids with intellectual disabilities. Men are leaving their homes, saying that it’s a shame to the family, and contribute nothing to that child, and it becomes a burden to the mother. Moreover, on a family level, neighbors and other family members say that they are cursed or punished by God or ancestors. … This kind of society mindset leads to trauma and stigma to the parents.”
Nsengimana says the stigma can be so intense, parents sometimes hide their children so that no one ever sees them – a violation of their rights. “As an organization looking after these children, we wish the society, with all private and government institutions, should understand intellectual disability and that a person with this type of disability has the same right as any other person,” he says. “Though we started working on it, but we wish these parents to be trained on job creation and child basic needs, specifically in health and education, that they may have opportunities to help their children. Additionally, there is a need of healing services to the parents fighting trauma and for the hope of their children’s future.”
Edouard Niyonteze says when his son, Dominic Hirwa, was diagnosed with an intellectual disability, “some people did not want him near them and sometimes wanted to beat him for nothing, but we tried to convince them that he is a person like others.” Niyonteze says his son has typical dreams for the future, but Niyonteze worries stigma and discrimination will prevent them from coming true: “Sometimes he claims that he wants to get married, as some of his generations are now married. It is terribly sad for sure. As parents, we feel ashamed when he asked that question. He is a man, and it’s his right.”
“I become speechless when it is about discrimination faced by parents who have children with intellectual disability,” says Pacifique Uwizeyimana, mother to 8-year-old Samuel Fils Imanigiraneza. “I always have to be by his side because he sometimes lost or hide himself. He never goes to school.”
“Sincerely speaking, I am poor that sometimes we do not eat. His father left us when he was too young, and he bring nothing for him. I cannot raise him and provide everything to him by myself as a single mother who is jobless,” Uwizeyimana continues. “I wish I find someone who may help me to pay his school fees and materials because it is too expensive. I cannot even afford to pay public schools. I also wish the society end discrimination and understand our issues. … Simply, I wish to live a normal life.”
Francine Uwayisaba is a field officer at Rwanda Union of Little People (RULP) and in charge of the organization’s communications. She writes grants, manages RULP’s social media, and composes articles and weekly updates for the website. @2023 DJP. All rights reserved.
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