Parents of Children living with Cerebral Palsy speak out

Photo Courtesy of the Daily Vox

Thoko Mntambo

South Africa has a large number of abandoned tailing dams / facilities if the number of abandoned mines is anything to go by. The Auditor General recently noted that there were over 6 000 abandoned mines with 2 322 of them classified as high risk. Snake Park is a township situated in a basin of a tailing mine dump in Soweto. The people reside side by side with a radioactive toxic tailing dam that contains uranium and other heavy metals. This tailing dam is neither signposted, fenced, nor rehabilitated. Dust from the mine dump is blown into the air every day and people inhale the dust causing implications to their health.

In 2017, the Bench Marks Foundation’s research team embarked on a study in Soweto, looking at the impacts of mining on the community. The study Policy Gap 12 was conducted by researcher David Van Wyk with the assistance of community activist Tiny Dhlamini.

This study reveals how radioactive dust causes respiratory problems such as asthma, coughing, and impacting children born with cerebral palsy. The organisation is aware that whenever negative impacts of mining are pointed out to the corporations, they will deny that they have caused harm.

I went out to investigate how the parents and children are “living” with cerebral palsy.

There are many children with cerebral palsy in our community. This is because many pregnant women swallow or breathe in radioactive materials, and absorb them into their bloodstreams. It is believed that from the blood, these toxins pass to the umbilical cord or near the womb and expose the foetus to radiation.

When walking around our streets, one will notice many disabled people and widespread poverty. Many mothers are living in distress because of the challenges that come with raising a child with disabilities, especially when living in a marginalised community like Snake Park. The Foundation and its allies have been campaigning for years for justice for this community. The BBC and numerous media houses have reported on it.

Palesa

I interviewed parents who are living with children born with cerebral palsy in Snake Park Soweto. They spoke out about how the government and the corporations have failed them. The government has to provide them quality health care and that negligence must be dealt with. I will share how one parent complained of hospital negligence that has traumatised the family. I spoke to Palesa Motete.

She is a 33-year-old mum of Oratillwe Motete who is a 13-year-old girl, who was born at Baragwanath Hospital in 2010. Palesa then was only 21 years old. Miss Motete couldn’t cope with the fact that her child was diagnosed with mental illness and cerebral palsy. At that time, she was still young and vulnerable and did not receive any trauma counselling as a teenage mother who would have to care for a child with special needs.

“I was depressed and had a mental breakdown and I started doing drugs, went to live on the streets, and smoked Nyaope (drugs). I could not take care of my child because it was hard for me to accept that she can’t walk, talk or play outside like other children. I was a single parent who dropped out of high school and was unemployed. My boyfriend walked out on us. It felt like my life was coming to an end. “

While she was still on drugs, her mother had to step in and take care of Oratilwe for almost nine years until 2020 when Miss Motete decided that she would stop smoking drugs. She went to rehab and she got help. She has been sober for three years now and has started to take responsibility for being a good mother to her daughter.

Mpho

I also spoke to Mpho Matsimela who is a 40-year-old mum to a 19-year-old boy Lehlohonolo Matsimela. He was born in 2001 at Baragwanath Hospital without any disability. Lehlohonolo was able to walk and talk until he was 4 years old. In 2005, he started to have a high fever and his mother took him to the hospital. On their arrival, he was admitted to high care and they put him on life support machines. After three days, his family was told that he had passed away.

Miss Matsimela was asked to come to the hospital to sign postmortem papers. She started to make funeral arrangements back at home when she went back to the hospital to fetch her son’s body. They then discovered that he was still alive and he was rushed to ICU. Doctors performed an operation on him.

After the operation Lehlohonolo could not walk anymore, and the side on which the doctors operated is now disabled and no longer working. The hospital then discharged him without any wheelchair.

“I want the hospital to compensate my son because he was not disabled when they operated on him and now he is disabled,” said Miss Matsimela. “He is now at home instead of attending school because the transport is expensive and the money I get for the disability grant is not enough to take care of his needs,” she explained.

Thulani Snake Park in Soweto is one of the impoverished communities with many children born and living with cerebral palsy. Their parents are poor and do not have jobs. In addition, the care of a child living with cerebral palsy is great. The parents have to do the care work, feeding and avoiding seizures.

The parents believe that schooling for children with special needs is far and expensive. Sometimes, they say that schools do not admit children who are still on nappies and are not able to go to the toilet on their own.

This is one of the reasons that they formed a Non Profit Organisation called Snake Park Cerebral Palsy Forum. According to Nobulawo Sitshaluza, secretary of the organisation, “we are struggling to pay school fees for our children because the grant money our children get monthly is R2 000. This money is not enough to cover school transport, it only covers food and toiletries.” “What we urgently need here is a centre for children with special needs funded by the government,” she said.

Natalya Dinat, medical doctor and researcher for Science for the People of Southern Africa, agrees. She adds that “Poor parents who have children with disabilities must come together and form a movement which will challenge the government and the Department of Health about difficulties and challenges they encounter from the hospitals.”

Caring for a child with disabilities affects the carer’s physical wellbeing and independence. We can all assist and support families of children with disabilities by signing this petition I started. Please join me.