Life on two wheels about maintenance as much as access
Sonke was just one year old when his mother died. With his father absent, Sonke and his two-month-old sister went to live with their grandmother Sarah, 47, following his mother’s passing.
Sarah herself was already a mother of four and survives on grants. She admits that between a new baby and Sonke’s broken wheelchair, she struggled and was often forced to leave the boy home alone when she ran errands.
“If her children were in school and she had to go somewhere, she would leave him outside under the tree unattended,” said community member Phumzile Sibiya. “ Sometimes it rained while he was under the tree and there was no one to move him.”
Although Sonke’s communication skills are limited, Sibiya says that the boy would often scream to go inside, shouting “ngaphandle” while sitting in the rain.
Almost three million South Africans live with some form of disability, according to the 2011 Census. Nationwide, about 610,000 children between the ages of 5 and 14 years old live with some for of disability with consequences for their education. More than a third of children with severe difficulties walking do not attend school – just like Sonke. The Census notes proportion is even higher in farming areas like those outside Nelspruit where Sonke lives.
Broken wheelchair, missed opportunities
Sarah also admits she failed to take Sonke for his regular physical therapy appointments 20 minutes away at Themba Hospital. She says that has changed after Sonke recently received a new wheelchair about 10 months after OurHealth began following the family’s case.
Local Ward Counsellor Richard Mabuza, ward committee members and local social services worked together to donate not only a wheelchair to the family, but also clothes and food.
“After my daughter’s death, no one could take him to those physiotherapy sessions because I had to take care of the 2-month-old baby she left,” Sarah told OurHealth in May 2014. “I felt going to physiotherapy sessions were a waste of time because I expected a fast change (in his condition), but I was wrong.”
“I know now some things take time to be fixed,” Sarah said. “Because he has a wheelchair now, I am making sure that he doesn’t miss his sessions in the hospital”.
Getting a wheelchair is just the first step
Kate Sherry is the chairperson for Rural Rehab South Africa (RuReSA), an organisation for occupational and speech therapists, physiotherapists and audiologists working in rural areas.
According to Sherry, access to physiotherapists and occupational therapists can help ensure that kids like Sonke live a better quality of life by working closely with families. This includes making plans with families on everything from how to care for disabled children, change nappies and make sure children have access to education.
“You get to know the family early on,” said Sherry, explaining the role of occupational therapists. “You anticipate the things that could go wrong with the child and give support when they do.”
“Occupational therapy can make the difference between a child lying on a bed for his or her life, and actually being a part of the family and seen as a child,” said Sherry, who added that access to working wheelchairs in rural areas can be difficult for many reasons.
“Procurement is a huge issued and not always done in a sensible way,” said Sherry, explaining that sometimes tenders do not include wheelchairs or crutches that can handle tough, rural terrain. Tenders also sometimes do not make provision for the replacement parts needed to fix wheelchairs, Sherry added.
In some areas, wheelchairs must still be repaired at local hospitals, meaning that clinics must send wheelchairs away for repair while patients may not always be guaranteed a temporary wheelchair to use in the meantime, she explained.
Children like Sonke and those with cerebral palsy who are unable to sit upright also need special wheelchairs, often called “buggies,” that can give them the posture support they lack naturally. These can cost as much as twice the price of normal chairs, Sherry said.
“These buggies hold the child in a much more supportive position so the child can sit for long periods of time without developing a deformity,” she told OurHealth. “Without that kind of support, children just kind of crumple into a little ball. They can develop quite serious deformities and they won’t be able to see what’s going on around them because they can’t move their heads.”
“Children can’t breath as well and over time they begin to develop lung infections,” said Sherry adding proper seating that allows children to make eye contact may also help them socialise better with their peers.
Social worker Thandeka Ndubane says they are still trying to source this kind of specialised wheelchair as well as a school for Sonke.
Additional reporting by Laura Lopez Gonzalez.
An edited version of this story was originally published on Health24.com
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