A Johannesburg mother living with a disabled child and a wheelchair-using tennis player — declared disabled from his infant years — have shared the difficulties of navigating life while living with a disability.
Ronewa Mudzanani’s painful experience of living with a disability and emotional journey to acceptance is what prompted the 27-year-old to try to touch the lives of other disabled people.
The wheelchair-bound tennis player from the rural village of Vhuri Vhuri in Ngwenani, Limpopo is opening a foundation to ensure that at least one other child is saved from experiencing the hardships he endured.
“I would stand up walk and fall like other children, then all of a sudden I couldn’t walk. When they took me to hospital they found out that I have a disability called cerebral palsy which affected my spine. They told my mother that I am disabled,” he said.
Being raised by his mother and grandmother, he said the journey was hard.
“People were looking down on me. It was hard. I was always on my mother’s back. She decided to take me to boarding school when I turned six. At first, I used to think that she didn’t love me. I used to think that they were abandoning me because, by that time, I had questions as to why I was disabled and different from other children,” Mudzanani said.
Things became easier for him when he saw other children living with disabilities just like him.
“I learnt to accept and love myself,” he said.
Mudzanani’s tennis career started when he was encouraged by others to try out the sport.
He admits not having passion for the sport at first but fell in love with it as time went on.
I even tried to take my own life because I was going through a lot.
— Ronewa Mudzanani
At the age of 12, doctors told him there would be a time when he would start to feel pain as his spine started to shift in different ways. The pain started in 2017 during his first year in Pretoria.
“It was tough to a point where there were times I couldn’t get out of bed. My school stuff was at a standstill. It was a lot, and I couldn’t go back home because I was getting treatment at Steve Biko Hospital,” he said.
After four months of treatment at Steve Biko, nothing could be done to fix his spine.
“At that point, it was tough, I even tried to take my own life because I was going through a lot. I felt like my life was over as someone living with a disability. I started getting used to living with pain,” he said.
Pain and all, he has played tennis tournaments in Italy and Turkey.
In December 2019, he was nominated for the Limpopo Sports and Recreation Awards under the category Sportsman of the Year with a disability and was ranked No. 24 in the world in 2019.
Through his organisation called, Wheels Life Changer, Mudzanani now supports those living with disabilities.
Established in October 2023, the NGO helps provide wheelchairs, walking frames, crutches and walking sticks for blind people, among others.
“We make sure we give parents who are raising children with disabilities support and get involved and make sure they get an education. Now we are assisting youth with learnerships,” he said.
“There are 21 youths living with disabilities that are now doing learnerships because of the NGO.”
“I know how difficult it is to live with a disability, I know the challenges they go through, so decided to start my own NGO and help people with disabilities, especially those from rural areas,” he said.
Mudzanani said his experience drew him to the necessity of an organisation to cater for the needs of the disabled.
“Every day we get people asking for wheelchairs [to be added] on our list. We have about 17 people who are waiting for wheelchairs. Imagine 17 people who are just sitting at home doing nothing, without wheelchairs ... That equipment is expensive and a lot of them depend on grants which is not enough,” he said.
Mudzanani said living with disability is expensive.
“If you need a proper wheelchair — like a normal chair — they are from R5,000 upwards, and remember there are children who can’t do anything, who can’t even push themselves. Those children need electric wheelchairs, and that wheelchair costs about R60,000, so where is that child going to get that kind of money if they depend on grants?”
Mpho Mahloko, a mother of seven-year-old Khutso Mahloko, who was diagnosed with cerebral palsy, epilepsy, club feet, developmental delay and moebius syndrome, said catering for a disabled child was not easy.
“It’s a lot. He had three operations for club feet with no success. After the last operation, they were supposed to give him splints for the legs, but they didn’t, I didn’t know he was supposed to get them, I only found out last year from his therapist. Right now he doesn’t wear them because they still hurt him,” she said.
If you check in townships there are no centres for children like him. The centres are only found far in towns. The R2,000 grant and it is not enough and it will never be enough.
— Mpho Mahloko
Mahloko said her life entails several visits to different doctors every month.
“I am not working. I can’t work because when he leaves school around 1pm and when he comes back around 3pm, he must find someone who will receive him. If there is no-one at home, I can’t move, it’s difficult. We were trying to find him a home, but it’s not easy, and they are very expensive. They will tell you about R14,000 a month. Where will you get the money if you don’t work? It’s not easy to find disabled children’s homes, it’s tough,” she said.
She said the worst she has seen her child go through was when he was admitted to hospital in 2021 and was unconscious.
“He was unconscious, he couldn’t drink or do anything. I used to pray. They had to install a feeding tube — he was so tiny, he was a skeleton,” she said.
Like Ronewa, Mahloko said disability grant money was not enough to cater for the needs of disabled children.
“The government only helps us with the R2,000 grant. He goes to school and his transport is R1,700. We must pay for his school fees we must buy him food, and he only eats soft meals. We must buy him veggies and fruit — healthy food. The government is helping, but it is not enough. If you check in townships there are no centres for children like him. The centres are only found far in towns. The R2,000 grant, and it is not enough and will never be enough,” Mahloko said.
She also said awareness and education about disabled children was lacking.
Mahloko said government needs to teach communities more about disability, including families with people who are disabled who need support.
Mudzani’s view is that having a disabled person as the minister of people with disabilities would make a change, as this would mean that person would have a full understanding of how it feels to be disabled.
“It would be nice to have someone who knows the challenge of being in a wheelchair, a person who has experienced it, but in that position there is someone who doesn’t know what it feels like to be crippled without a wheelchair and crawling on the floor,” he said.
He said his worst experience was when he moved to Johannesburg.
“Going to a taxi rank [and] not being attended to, paying taxi fare for two people in a taxi and people looking down on you. That is one of the most frustrating things, and you will even ask yourself why you are going through such challenges — being rejected because of your condition,” Mudzanani said.
His advice to parents with children with disabilities is to not hide their children but show them love and care.
Looking back, Mudzanani said he never thought he would be where he is now.
“I am so proud of myself, and I just wish to continue giving hope to children living with disabilities, who continue to feel hopeless, that it is possible. My wish is to have someone living with a disability one day being a president. I just want to show that anything is possible, being disabled doesn’t mean you can’t make it in life,” he said.
According to the CEO of Little Eden Society, Xelda Rohrbeck, disability is still an area that is often stigmatised and on the periphery of the funding landscape.
Accessibility to regular stimulation therapies such as physiotherapy, and suitable mobility devices such as customised wheelchairs are a real challenge, more so in rural areas.
Rohrbeck said caring for a person with profound intellectual disability is a mammoth task.
Little Eden Society provides 24-hour residential care to 300 children and adults with profound intellectual disability.
“The majority (67%) of our residents have been abandoned or come from indigent families who are not able to support them financially. It costs R14,160 to care for one resident per month, which equates to R169,920 per annum per resident. This figure includes the government subsidy.
“The monthly amount, per resident, of R5,526 from the Gauteng provincial government department of health (GPGDoH) only represents 39%, which is not adequate to provide for the specialised care for residents in our facilities. As a result fundraising within a constrained funding landscape continues to be a relentless task and responsibility. The disability pension of R2,080 is only received for residents — those 18 years of age and older from Sassa,” she said.
As they mark intellectual disability awareness month in March, Little Eden Society will host its CEO Wheelchair Campaign, which aims to raise awareness of and generate compassion for people with physical disabilities, including its residents, of whom 64% use wheelchairs for their daily mobility needs and live with profound intellectual disability.
Mudzanani will officially launch his organisation on March 2.
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