Challenges of raising children with disabilities
MUHANGA – It is a round 10.00Am, the sun is shining and it is too hot. The city looks too busy with the comings and goings. Outside Muhanga town, about 20 women of all ages sit in groups, discussing.
At first sight, one thinks they are members of an informal credit cooperative, commonly referred here as Ikimina, who are trying to discuss how to spend their money.
But that is not the case. These women share the same problem: they all have children with varying disabilities whom they take care of.
The women, grouped under Abisunganye cooperative, meet on regular basis to share best ways of catering for their disabled children.
Sitting in the middle of one group, Marie Josepha Mukakarekezi, 46, testifies how her life has changed after joining the coop.
“It was very difficult for me. I was always blaming myself for giving birth to a child with mental disability”, she starts.
“I had the feeling that I am guilty for that and I did not consider him as a human being”.
Mukakarekezi’s 21-years-old son is mentally disabled and is one example of the many children who have been subjected to inhumane treatment due to their health situation.
“I used to lock him inside the house”, she says. “Even when I let him out, his age mates used to ridicule him.”
“After joining this cooperative I realised I am not the only one in such a situation, which helped me to reconsider the way I treated my son. I realised that he is a human being, who needs special care like any other children”.
However, access to health facilities, education and other special needs that disabled children require remain the most important challenge facing their parents.
Shadia Uwitije is a mother to a four-years-old child who is both mentally and physically disabled.
Uwitije, a resident of Remera cell, Nyamabuye sector of Muhanga district, narrates how she has been unable to pay for her child’s treatment due to the lack of financial means.
“I need at least Rwf 75,000 per month for massage and other exercises of physical therapy but, I cannot cater for that,” the woman sadly says.
“And this is regardless of the money I spend regularly on drugs and other things I must fulfil to see whether his situation can improve”, she adds, saying: “My child is no longer receiving the treatment he needs. It is so sad, but I can’t do anything else in my own capacity”.
“Raising a disabled child is not an easy thing. It affects us financially because little time is spent on work and much is spent taking care of my son.’
In such a situation, Abisunganye finds peace in talking together of their ‘misery’.
For long, children with mental and physical disabilities typically faced stigma and were excluded from school and community life. Many lived hidden by their parents who considered them a curse for their respective families.
Since the introduction of the ‘Education for All’ policy, a few of them have been enrolled in schools. But still their numbers are limited.
This is both attributed to the traditional belief that a disabled child is unable to handle any single task or the lack of financial means to cater for their special needs.
Parents’ limited capacity do not allow them to cater for the “special expensive equipment” while at the same time paying for their school fees, especially in special-needs schools and centres.
“Some of us have been compelled to keep our children at home because we are unable to pay for their education”, regrets Uwingabire Marie Grace, whose 15-years-old child is mentally disabled.
“Mine too does not attend school”, she testifies.
But, others have been enrolled in schools, thanks to the government or other well-wishers who supports them financially.
Mukakarekezi has been able to find a sponsor for his children who has been enrolled at a centre for handicapped children in Muhanga district, Handicapé Rwandais, Réhabilité, Réintégré dans ses Driots (HRD) centre. It offers basic life skills in addition to other normal education programmes to the disabled children.
Children enrolled at this centre are mainly those with mental disabilities as well as hearing impairments.
“Three years since he has been enrolled at school his situation has drastically improved”, Mukakarekezi says.
“Before, he could not handle any single task. But today, he goes to fetch water, cuts grass for domestic animals and is actively engaged in domestic activities”.
For those whose situation goes improving, they are helped to enrol in formal schools.
“We have so far sent five children to formal schools. Only one of them has returned here after his situation worsened. Others are still pursuing their studies”, Alexis Harindintwari, a teacher at the centre, says, adding that they also help the kids start small activities whenever possible.
“The lack of financial means and enough trained people to assist the children is a serious challenge to their education”.
But, even though the parents grouped under Abisunganye cooperative recognize the support from the government and other well-wishers, it is clear that what they get seems to be minor compared to the needs of their kids.