When Shelly – the daughter of Shonaquip Social Enterprise founder Shona McDonald – was born with cerebral palsy, her family faced challenges most have never had to consider.
Shelly was unable to sit up unsupported or move around independently, and Shona drew on her sculpting background to design Shelly’s first mobility device. The customised postural support made Shelly’s care both safer and easier, and her new mobility opened up a world of possibilities for both learning and play.
In 1992, Shonaquip was founded to help other families in a similar position. After its humble beginnings with a staff of two operating from a garage, Africa’s leading pediatric wheelchair service provider now boasts 75 technicians, seamstresses, therapists, and community workers. Theirs is an inclusive workplace, supporting the belief that everyone has the right to access to work. Almost 30 % of their staff have a disability, including five technicians with mobility impairment.
Many believe a wheelchair is exclusively for people who are unable to walk at all. Desmond, one of Shonaquip’s longest-serving technicians, reminds us how his wheelchair contributes to his wellbeing:
“When I walk, my legs get tired and painful. With the wheelchair, I can get around much faster and without getting tired or feeling pain. The best part of having my wheelchair is that I can do sport. I played basketball and used to do fun runs. My wheelchair keeps me fit.”
These technicians understand first-hand the importance of what they do. His colleague, Ralph, adds: “I know how important every single device is that goes out of this factory. Everything that is made in this factory is used and needed by a human being. Without this thing, I am nothing.”
Ralph lost the use of his legs from polio at the age of three, and only received a wheelchair when he was 15 years old. As a result, he missed out on schooling, was left without a Matric certificate, and had severely limited job options. Frustrated by his inability to support his wife and son, he embraced the opportunity to work in the factory 14 years ago. He has also represented South Africa in basketball at the Paralympic Games in Sydney in 2000, and in Beijing in 2008. “I don’t feel disabled. This wheelchair is my legs. I am able…I can do whatever I want,” he says.
Wheelchair users have the right to an ‘appropriate’ device and wheelchair services provided by trained staff. What this means is that the wheelchair should closely match identified needs, and should be backed up with services by staff who have the required wheelchair-related knowledge and skills.
What many don’t know is that poor wheelchair prescription or a lack of follow-ups may cause severe secondary complications like disfiguring deformities or pressure sores that can take months to heal. Unfortunately, thousands of unsuitable or broken wheelchairs are abandoned every year.
Karel, a former Shonaquip employee, recalls the very first wheelchair that was prescribed without the necessary assessment: “This wheelchair holds you back from what you want to do. It was heavy and tippy, so I did not feel safe. This wheelchair that I had would get in the way of my work. I struggled a lot to move my body side to side and to pick things up off the floor. My new wheelchair has made such a change for the better in my life. I can do more, travel more. I feel very safe in it. The terrain is very hilly at my home, but with this wheelchair I can move around.”
These technicians’ lives remind us not only of how much the right wheelchair can enable active living, but also that no one wheelchair can possibly suit everyone’s needs. The typical standard wheelchair is fit for indoor use, but restricts freedom and independence for an active person. At the same time, it lacks the support and stability required by someone like Shelly, who has more complex postural support needs. Getting the right device is vital for everyday participation, and early intervention is key.
Shonaquip can help get a child equipped to move, explore and develop. A seating practitioner will do an assessment to find the correct wheelchair match, discuss funding, fit the device correctly, and show you how to use and adjust it. Nobody can sit in the same position comfortably for hours, so positioning options for time spent out of the device will be recommended. Carers will also learn how to look after the device, and follow-up reviews will be scheduled.
Sadly, Shonaquip has seen that an appropriate wheelchair on its own is not a total solution. Widespread barriers in poorer communities restrict people with disabilities.
“I always struggled with public transport in my wheelchair. At the train station I would have to go up two flights of steep stairs to get my ticket. Then I would have to come down again. I would have to ask two strangers to help me. One at the front, one at the back to carry me up the stairs and then back down again. It makes you totally dependent on others,” says one wheelchair user.
Ten years ago, Shonaquip broadened their services to seek solutions to address barriers and build more sustainable ‘ecosystems for inclusion’. They see an ‘ecosystem’ as being made up of the family, policies, community and support services – including health, education and social services. While a dysfunctional ecosystem leads to isolation, community stigma, health risks, lack of education, poverty and human rights violations, a functional one welcomes and enables the inclusion of a person – regardless of their ability.
Even in the most remote areas, Shonaquip runs mobile outreach seating clinics to mentor local therapists and technicians to provide sustainable wheelchair services and up-skill parents.
Ayabonga, a four-year-old boy who was assisted through Shonaquip’s outreach efforts, struggled to balance when sitting and crawling around on the floor, supporting his small body with only his arms and hands. Outdoors, his mother battled with a pram over rough Northern Cape terrain, while his teacher often carried him around at school.
Since he’s been seated in an appropriate wheelchair, Ayabonga now happily plays with his brother and friends. His mother has become increasingly confident in his positioning, daily care, and home stimulation, and has been attending the clinic with him. Local therapists have also been mentored to provide follow-up reviews as he grows.
Shonaquip’s early learning programme encouraged Ayabonga’s teacher to explore ways to include him in the class. With his hands now freed up from supporting his body, his teacher has noticed improvements in fine motor skills and a new energy for tackling challenges. She looks forward to the day he will attend their local primary school as the first child with a disability.
Once we add the power of community disability dialogues, we can see how small changes in the ecosystem have the potential to transform the lives of children with disabilities and create pathways for others to benefit, too.
Shonaquip is committed to transforming the quality of life of individuals living with moderate to severe disabilities in Africa. Visit www.shonaquip.co.za to find out how you can help Shonaquip and their partners to develop more sustainable, disability-inclusive communities today.