There’s no such thing as ‘the voiceless’ …
Today I am reminded of a disturbing quote by author Arundhati Roy, “There’s really no such thing as ‘the voiceless’. There’re only the deliberately silenced or preferably unheard.”
Our #Journey2 road trip team is travelling to Allemansdrift, Mpumalanga with Shonaquip seating specialist Ruth Stubbs and occupational therapist Shavaughn Brooks. Shonaquip specialise in assistive seating and mobility devices, such as wheelchairs and buggies. A ‘buggie’ is a custom-designed wheelchair for children with specially fitted cushions designed to accommodate and support the shape of the child’s body.
Our destination is the Egodeni Care Centre which cares for approximately 200 autistic and cerebral palsied children from ages 5 -17 years. We’re visiting because the Old Mutual Foundation funded R80 000 for 20 buggies, of which five have been distributed to children here in this care centre. Ruth was involved in the original seating assessment and fitting of these buggies last year, so it’s good to join her on this site visit and glean information while driving here together.
Egodeni Care Centre caregivers and Shonaquip specialists Shavaughn Brooks and Ruth Stubbs, with the five children who have refurbished buggies to assist with corrective alignment.
Ruth is a qualified teacher in Special Needs and has honours in Alternative and Augmentative Communication. She is highly experienced, knowledgeable and passionate about her work with these vulnerable children, and gives me a quick medical briefing along the way. Cerebral palsy occurs when there is loss of oxygen to the brain and can occur either at birth or as a result of an accident. Brain damage results in weakened and uncoordinated muscles, and this lack of muscle control causes the body to fall or slump into wrong positions. And if this is not corrected, it leads to contracted muscles and consequent deformities.
So if a child’s body is unsupported during growth, this puts stress on her skeletal structure and internal organs. However, with corrective seating, the child’s spinal posture can be maintained in a well-aligned position that not only lets her body grow properly but also allows for improved functionality i.e. self-feeding, playing and gesturing for communication. “If a child sits correctly for 6hrs daily, that’s like physio for her body,” says Ruth. However, accessing corrective seating devices through the Department of Health is very difficult, says Ruth, with waiting lists of up to three years and more. “During that time, the child’s deformities are ten times worse because there’s been no support.”
While the fact of an overburdened and poorly-performing health care system is grievous enough, Lena Masango, Assistant Manager of the Egodeni Care Centre, touches on another issue not often acknowledged or spoken about. In many of the rural or traditional communities, she says, there’s a deeply-held cultural belief if one has a child born with a disability, one has been cursed by the ancestors. It is a shameful thing and these children are often hidden. Lena tries to offer counselling to parents where possible, and the centre also holds awareness days to try and change these perceptions and encourage more active integration.
During the morning, we observe Ruth and Shavaughn at work with the children, and in particular re-assess the five children with their refurbished buggies. I’m deeply touched by the obvious compassion which motivates their work. Not only do the children receive professional attention, but there’s a gentle hand with lots of spontaneous hugs and cuddles which is clearly enjoyed by the children. In particular, Ruth comments on the excellent progress of one child, whose back was so badly arched previously that her head was almost touching her bottom. The buggy has provided her spine with the neccesary support and within five months she is now sitting upright. “The relief for her body must be enormous,” says Ruth.
Although it’s good to know our funding has assisted a few vulnerable children, after this project visit I’m left feeling distressed by the overwhelming challenges faced by practitioners and caregivers working within an inadequate health support system and trying to overcome deeply seated cultural taboos. And I’m incredibly grateful to the too few people, who’re trying to do their best, in face of too much need.
Mark Wessels at work. A beautiful moment captured by Georgia Court.
And we’re off!
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