The dilemma of parents with special needs children

Julienne Mukayiranga is one of the parents with a special needs child. courtesy.

Julienne Mukayiranga’s life turned for the worse when her first child was born with a mental disability. Looking after a special needs child was difficult but her family and husband were there for her.

She hoped that her second child would be fine but unfortunately the child was also born with a physical disability.

“At that time, the relationship with my husband changed suddenly and he decided to abandon me saying that I was the cause of disabilities of our children,” she said.

He sold the house and left her with nowhere to live.

“I had two children with disabilities, no house and no job. It was very hard for me. I survived through begging,” she recounts as tears roll off her cheeks.

During those hard times, one of her children got sick but she didn’t have money to take the child to hospital died suddenly.

Through media advocacy, she met a local organisation that cares for children with disabilities which offered her basic needs like shelter, food health insurance and training in tailoring.

“At the moment, I can fend for myself. My child is in school, something that I had considered impossible. He is also undergoing  physiotherapy which I hope will help him”.

“Nyabingi”

A child born with a disability is called “Nyabingi” which means evil spirits. This is the name that was given to Ildephonse Nzikobankunda’s child who was born with a physical disability.

Gilbert Kubwimana, the Executive Secretary of Love with Actions gives a certificate to one of the parents with children with disabilities in Gasabo District recently. courtesy.

“Our neighbors stopped visiting us, saying that we had Nyabingi or other spiritual things which gave us a child with disability. Others said we had sacrificed him in order to seek wealth”.

Nzikobankunda started believing his neighbours and relatives who kept telling him his special needs child was a result of evil spirits.

“Most times, when you give birth to a child with disability, conflicts erupt. The man’s family attacks the wife saying her family was possessed by evil spirits. However, it’s not true, these children are like others and need care and love,” he said.

Gilbert Kubwimana the Executive Secretary of Love with Actions, a non-governmental organisation that caters for children with disabilities, said the children face various forms of violence mostly from stigma of their families and community.

“Families that have children with disabilities are stigmatized in their communities, and in order to avoid it, they hide their children and stigmatise them also. Most of them are locked in houses so that no one outside sees them”.

Most of the times, children with disabilities don’t go to school and many of them are used by their parents to beg on the streets.

“Some of the people we see on the streets begging carrying children with disabilities are not theirs. They just borrow them and they pay back some money to their parents,” he said.

 “We need to change mindset of Rwandans, we need to help these families to have the basics to love and raise children with disabilities”.

editorial@newtimes.co.rw

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