Wisdom from seasoned wheelchair users

 Some lessons are only learned through experience. Veteran wheelchair users shed some light on life from a wheelchair

From building endurance to learning basic manoeuvring, rehabilitation centres play a crucial role in teaching people how to use a wheelchair – especially those who have sustained spinal cord injuries or are permanent wheelchair users. Yet, despite all it offers, rehab has its limitation. Truthfully, no amount of time spent at these centres can fully prepare you for life outside rehab.

Peer support can be great in assisting recent, permanent wheelchair users to navigate this new form of mobility in a mostly inaccessible environment. Some lessons, tips and tricks come with years of experience in a chair.

With this in mind, we’ve reached out to some seasoned wheelchair users to learn their tips and tricks for navigating life and the world with the use of a wheelchair.

“Take care of your wheels”

Ellah Zulu has been a manual wheelchair user for an incredible 45 years following a mugging gone wrong. She recalls: “While I was growing up, I was attacked by two hooligans with an aim of robbing me. Because I only had 50 cents with me, they stabbed me in the back and left me there to die.”

Fortunately, she survived, but not unscathed. As a high-level paraplegic, she still has function and strength in her upper limbs, but not her abdominal muscles. After four months in hospital, Ellah returned home to find that her training wasn’t done.

“Luckily, my father was a boxing trainer,” she remembers. “He arranged for me to carry on with all the exercises that he observed during my physiotherapy. He built walking rails at home and other tools for push ups as well. All I can say is that, at home, I have a very strong support system that makes me stronger.”

Even with such a solid support structure around her, Ellah still faced the challenges of an inaccessible environment. She relies on public transport, which means seeking out assistance whenever she wants to travel.

“Whenever I want to go out, I was using public transport. Each time, I would need someone for assistance with, for example, getting into the Kombi and folding the wheelchair,” she adds.

The distinguished 62-year-old is well dressed and takes pride in her appearance. Keeping her wheelchair in a good, clean condition plays an important role in that. She encourages new wheelchair users to keep this in mind.

“It is very important to take care of your wheels. You sit on your wheelchair dressed up nicely, but then we look at your wheelchair and it’s not taken care of,” Ellah says. “For new wheelchair users, I would advise them to love their wheels as it is the only form of vehicle to assist in moving around. Keep them spotlessly clean all the time.”

“You also need to do wheelchair maintenance regularly so as to be on the safe side – especially if you are always on the move,” she adds. With regular maintenance and some preparations, you can avoid mishaps like a flat tyre or broken wheel.

Maintenance on the wheelchair isn’t the only thing that Ellah encourages new wheelchair users to do regularly. A good fitness routine makes navigating life from your chair much simpler as Ellah points out: “Try to be physically fit, I do a lot of upper body exercises.”

Finally, she advises wheelchair users to ensure that they have the right size chair for the job: “Make sure that you have the right size wheelchair; not bigger or smaller.”

“Batteries should be charged”

Born with cerebral palsy, Lafras Moolman has used wheelchairs all his life. With 37-years of experience in a power chair, he is well versed in the importance of keeping your wheelchair charged – his first piece of advice for new wheelchair users.

“In the case of a power chair, batteries should be optimally charged with a 12-volt trickle charger – a type of charge that stops charging once the battery is complete to avoid overcharging,” Lafras notes. Over time, overcharging damages the battery’s holding capacity. As a result, a battery will deplete (or run out) sooner than expected. By avoiding overcharging, you are able to extend the life of a battery.

“Secondly,” Lafras continues, “Use the right size and type of batteries for your power chair to ensure top performance. Regular charging of batteries also prolongs their battery life.” He adds that it is important to follow the manufacturer’s guide when choosing the battery for your wheelchair.

Although maintenance on a power chair will look very different to that of a manual wheelchair, it is equally important as Lafras highlights the areas that wheelchair users need to consider.

“Wheel bearings and nuts should be checked regularly and tightened if needed. Tyres should be replaced frequently, especially when driving long distances often. When cleaning, simply wipe your frame with a damp cloth. Avoid using water close to batteries, electrical wiring or other electrical parts to prevent serious damage or breakdown of your power chair,” Lafras advises.

Although a power wheelchair user himself, Lafras is acquainted with the challenges that manual wheelchair users might face – particularly the risk of having the wheelchair frame’s integrity compromised. He explains: “When traveling with a manual wheelchair, always ensure that it is folded properly before loading it into a car so to avoid bending the frame. Once it is bent, the user will not be able to open it properly again, which, in turn, will make sitting in the chair basically impossible.”

As power wheelchairs aren’t able to fold, the risk to the frame is smaller. Instead, Lafras suggest loading the chair onto the back of a bakkie, for example, when travelling. In addition, Lafras suggests that people do push ups and stretches to become better wheelchair users, while proper seating and the right cushion can make all the difference in preventing pressure sores.

Before buying any type of wheelchair, always ensure that you have the correct body measurements otherwise your chair might be too small or too big, impacting on proper seating,” Lafras says.

His general advice for new wheelchair users: “Learn to accept and embrace your disability. Positivity is key in coping from day to day. Read as much as you can about your disability and specific needs. Knowledge is power!”

“Change the way you think”

For 23 years, Thapelo Kgoale has used power wheelchairs. A very early diagnosis of muscular dystrophy meant that he started using a chair at the age of three. As a well-versed wheelchair user, Thapelo also highlights the importance of cleaning your wheelchair regularly.

“They always say ‘cleanliness is close to godliness’ and I am one person who makes it a point to practice that at all times,” he says. “My wheelchair is washed at least once or twice a month depending on how often I became a Michael Schumacher that month. My friend, who makes sure that my wheelchair is squeaky clean at all times, has really loved being my personal wheelchair washer.

“He makes sure that he never damages any wires and I really give much credit to him. He goes by the name Koketso,” Thapelo adds. He mentions that, if you are unable to clean your wheelchair yourself, it should be done by someone you are comfortable with and know well.

“Your wheelchair should be washed by someone who is familiar with it. Supervise them the first time they wash it,” he explains.

As a power wheelchair user, Thapelo knows how important it is to keep your chair charged: “I charge my wheelchair batteries every night and I never allow them to run flat. Before I even start packing my luggage [when travelling], I make sure that my wheelchair charger is right where I can see it.

“As a motorised wheelchair user, you wouldn’t wanna leave an important thing at home going for a very great and fun vacation. If your wheelchair needs to be disconnected in order to fit in a car, make it a point to supervise whoever will be assisting you. Remember that your wheelchair is your responsibility as it’s a tool that allows you to move from point A to point B,” he adds.

Peer support is an important part of becoming a better wheelchair user. This could even be in the form of adapted sport. As Thapelo explains: “For me, engaging with other people with disabilities is an activity on its own as you are with someone who relates very well.

“There are actually a lot of sports for people with disabilities and I am sure those with teams would really love to see more people with disabilities join in,” he adds.

His advice to new wheelchair users is to try and change the way that you think about your disability. “Hard things are put in our way, not to stop us, but to call out our courage and strength,” Thapelo says. “It can be incredibly difficult to accept that you are in a wheelchair. Acceptance can feel like you giving in, like you are throwing in the towel on life and your future.

“But refusing to accept the reality of your limitations keeps you stuck. It prevents you from moving forward, making the changes that you need to make, and finding new goals. Adjusting to life with a disability can be a difficult transition. We all tend to take our health for granted until it’s gone. Then, it’s all too easy to obsess over what we’ve lost,” he continues.

“But while you can’t go back in time to a healthier you or wish away your limitations, you can change the way you think about and cope with your disability. You are still in control of your life and there are many ways to improve your independence and sense of empowerment. No matter your disability, it’s entirely possible to overcome the challenges that you face and enjoy a full and fulfilling life. To a new wheelchair user, remember that ‘disability is not an obstacle to success’,” Thapelo concludes.

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