At first having a child with a disability seemed like a curse, so much so that 42-year-old Sylvia Chidunka thought the only way out was to end her life.
The mother of a 17-year-old boy with cerebral palsy – a condition marked by impaired muscle coordination and other disabilities typically caused by damage to the brain before or at birth – could not accept the fact that she gave birth to a disabled child.
“Everything in his life was delayed,” she says, as she explained how she learned about her son’s disability. Chidunka’s son only started sitting at the age of four and started walking at the age of seven.
Not having any prior preparation or information about how to deal with children with disabilities, Chidunka felt like that was the end of her. “It pained me to such an extent that it seemed better to kill myself. I felt like I could not carry that burden on my own,” she reminisces.
Through encouragement from those close to her, Chidunka eventually came to terms with her situation. And, soon, the mother of five biological children landed jobs at centres that care for children with disabilities in Windhoek.
Through her son, Chidunka learned first-hand how people living with disabilities are stigmatised. She tried to take her son to normal schools, but he was not accepted because of his condition. Although her son can walk, he struggles to speak.
“We can understand what he says at home and he is passionate about education. He really wants to learn,” she says.
“I took my child to Dagbreek (a school for the disabled). That’s when the idea developed in my mind that something of this nature (a centre for children with disabilities) should be set up in Katima Mulilo,” Chidunka added.
That is when her passion for advocating for the rights of children with disabilities took root. She took this idea one step further and in 2009 opened a centre for children with disabilities in the Zambezi Region.
“I have seen that indeed I am not the only parent suffering, as there are many parents suffering with children with disabilities within the country and also in my region (Zambezi),” said the mother, who speaks with so much passion on matters of disabilities.
She added: “There are many children with disabilities, like my boy, who are being denied access to education.”
From humble beginnings, the Mainstream Foundation is now known for taking care of children with disabilities in Katima Mulilo. It also caters for able-bodied children.
Today, the centre provides education, rehabilitation and dignity to children with disabilities and cares for 55 children in Katima Mulilo’s Choto location. Of these, 32 are living with various disabilities.
“There are many children living with disabilities in Katima Mulilo. I felt the need to start the centre, because many parents do not know how to take care of children with disabilities,” Chidunka stressed.
“I’m a proud mother of a disabled child. And, the way I treat this child is the way I treat the children at the centre,” she explained.
Chidunka, who is the founding director of the centre, said physiotherapists are invited to provide exercises to the children with special needs. In addition, raising awareness on disability in the community is part of their mandate.
“We have public meetings where we do awareness raising on the rights of children with disabilities,” she said. In addition, children are taught to know their rights, because “in most cases you get children with disabilities and their parents don’t know their rights,” Chidunka noted.
“Some parents don’t know that their disabled child is entitled to a disability grant and don’t know that the (disabled) child is supposed to go to mainstream schools.”
Furthermore, she said: “We’re trying to lobby the government on behalf of our children and stakeholders. Now that we have the inclusive education policy, how much are the ministries involved in this?”
The disabled youth at the centre are trained to be advocates for the disabled, she added. “We’re training our youth with disabilities to be advocates, so that they can stand publicly to speak up for themselves and raise their own issues, rather than their parents standing up for them,” Chidunka added.
According to the Namibia 2011 Census Disability Report launched this week, the estimated number of people with disabilities in Namibia almost doubled from 42 932 in 1991 to 85 567 in 2001 and soared to 98 413 in 2011.
Indicated in the report is the need for policy interventions to address the issue of children with disabilities, who do not have access to early childhood development programmes (ECD).
“With regard to the number of children with disabilities, aged three to five years, 2 595 were not attending ECD programmes. With regard to school attendance, results show that the proportion of persons aged five years and above that never attended school has decreased from 30.4% in 2001 to 28.9% in 2011,” according to the report.
It also reported that disabled people living in rural areas are less likely to attend school than those in towns.
“This situation calls for interventions to address the issue of uneducated persons with disabilities in rural areas. In terms of tertiary education, the highest proportions of disabled persons with no formal education were blind and visually impaired,” it states.
‘Children with disabilities are suffering’
Many children with disabilities are often marginalised and stigmatised based on their condition, she stressed. Chidunka added that some children with disabilities have special dietary needs and, therefore, their needs cannot be compared to those of orphans.
“Our children are suffering. They have special needs. Orphans have their own struggles, but children with disabilities have special needs. If government can consider increasing their grant from N$250 to a higher amount it will be great,” she emphasised.
Challenges at the centre
Although Chidunka’s hopes to make the centre self-sustainable that dream is far-fetched at the moment. The centre has income-generating projects, such as a gardening and chicken project for the organisation to be self-sustainable, she explained. But for it to really be effective, donors are needed, Chidunka added.
The centre was privileged enough to receive support from stakeholders, such as the Ministry of Health and Social Services and the Embassy of Finland and Social Security Commission. However, that funding came to an end.
“As of last year… we did not have any funding. The centre was going to close down, but we the workers at the centre said there is no way it was going to close down, despite funds being unavailable,” she added.
Nampower later came on board to build some classrooms for the centre. The funding, she said is to upgrade and improve the services provided at the centre.
Chidunka said the centre is making a difference in the community of Choto and Katima Mulilo. “In the community itself our children are getting more support at present and we have two children who were not walking and now they are walking, because of the services that we are providing,” she added.
With regards to parents who are caring for children with disabilities, Chidunka advised: “Please try to form parent support groups, so that you can counsel one another and get more information.”