Bridging generations: how young RX Radio advocates are shaping disability awareness

Marlene le Roux, CEO of the Artscape Theatre Centre in Cape Town and long-time disability rights activist, said that the focus on improving access and resources for people living with disabilities should be maintained every day of the year. (Photo: Supplied/RX Radio)

By Tamsin Metelerkamp

2 Dec 2024

Reporters from RX Radio shared their stories of resilience at an event commemorating Disability Rights Awareness Month on Friday, 29 November. The radio station, based at Red Cross Children’s Hospital in Cape Town, provides a platform for the voices of children living with chronic illnesses.

There is a need to amplify the voices of adolescents in discussions on improving access and assistance for people living with disabilities, not only on radio and television, but also in the working groups and decision-making bodies of key organisations.

“One thing is learning from others of all ages – so, I learn from my little three-year-old patients; I learn from my 92-year-old godmother; and I learn from my adolescents,” said Professor Mignon McCulloch, head of the Clinical Unit of Paediatric Nephrology and Solid Organ Transplantation at Red Cross War Memorial Children’s Hospital.

young people disabilities From left, Professor Mignon McCulloch, head of Clinical Unit Paediatric Nephrology and Solid Organ Transplant at Red Cross Children’s Hospital; Tarique Kenny, a 23-year-old RX Radio reporter and former board member; Alicia Goosen, a social worker with the Western Cape Department of Social Development; Noluyolo Ngomani, RX Radio station manager; Marlene le Roux, CEO of the Artscape Theatre Centre in Cape Town and long-time disability rights activist; and Talitha Counter, a 20-year-old RX Radio reporter. (Photo: Supplied / RX Radio)

“To hear adolescent voices, and voices of disabled adolescents, is so important… I think it’s about open communication channels.”

McCulloch was speaking at an RX Radio panel discussion about “Adolescents with disabilities navigating their own space” on 29 November, hosted at the Cape Town Museum of Childhood. The event coincided with the closing of Disability Rights Awareness Month.

Artscape CEO and long-time disability rights activist Marlene le Roux, who chaired the discussion, noted that it was not enough to have one month of action on disability awareness.

“It should be 365 days of mainstreaming and giving access – with resources – for persons with disabilities. This is not a homogeneous group. Every single disability needs specific resources,” she said.

Sharing stories of resilience

Among the speakers at the event were two RX Radio reporters who became involved in the station as adolescents.

Tarique Kenny (23) has been a part of RX Radio since he was 15. He is living with cystinosis, a rare genetic condition that causes an amino acid called cystine to accumulate in his cells. He currently serves as a patient mentor at Groote Schuur Hospital, where he continues to receive treatment, and supervises an adolescent group at the health facility. He is also a communications student at Unisa.

“Groote Schuur hospital runs an adolescent group from the ages of 13 to 25 every Thursday… and any patient who fits in that category... can come and attend,” said Kenny.

“It’s a place where you don’t feel alone because this is a very daunting age – being a teenager, starting to grow into an adult... Sometimes you can’t always confide in your doctor. You feel like they’re going to judge you, they’re not going to understand you. There’s a lot of questions that you have, just regarding life in general, and sometimes you want to chat to somebody.”

Reflecting on his experience of living with cystinosis, Kenny said his greatest fear had been dying at a young age, before having the opportunity to achieve his dreams.

“How I overcame it – it’s like my life, my dreams are the Olympics and I need to do as much as I can to reach them. I started getting opportunities at RX Radio that I never even dreamed of, like being on a webinar with Prince Harry, going to London, all these radio interviews,” he said.

“I told my mom about a year or two ago… if I should die this year, yes, it’s going to be a bit scary… but know that I passed away striving for the best, striving to achieve my dreams, and I’ve been fortunate enough to achieve quite a few of my dreams and things that I hadn’t even dreamt of.”

Kenny emphasised that he never let his condition define him, but rather made it his “superpower” by taking the opportunity to advocate for others living with chronic health issues.

“If my biggest weakness can give other people strength, then surely it’s not my weakness. Surely, it’s my strength,” he said.

Fellow RX Radio reporter Talitha Counter (20), who started with the station in 2016, has a condition called meningoencephalitis – a viral infection in the brain that resulted in her muscles being unable to function properly. She is a second-year media student at the University of Cape Town (UCT) and continues to assist the RX Radio team by mentoring young reporters.

“I’ve been helped by UCT tremendously. They’ve helped me get a carer; they’ve trained the person to help me around… they’ve helped me with my wheelchair issues [and] they’ve made sure that my studies go smoothly,” said Counter on her experiences at the university.

Counter said that although she was at first nervous about the transition from school to university, she was quick to make friends. She believes her strength lies in her lively personality.

“I may be stuck to this chair, but I think my bubbliness and my ball-of-sunshine personality works for me,” she said.

One key challenge that Counter highlighted for people living with disabilities was the lack of appropriate transport services.

“We’ve got Ubers, but Uber is not viable for us. For myself, I’ve got a wheelchair where you can’t fold it. I need to be in a vehicle with a lift… I’d really love it if there were many transport services that catered for people with disabilities, physical or non-physical,” she said.

Young people in health settings

According to McCulloch, it is very important for health professionals to engage with their young patients, and not only the parents. She places a high value on honesty and transparency in these interactions.

“It’s really important not just to do what you would with a baby and speak to the parents [only]... As doctors and as nursing staff, as social workers and therapists, we need to realise that it’s not just one unit anymore – there’s definitely a young person there as well as an older person,” she said.

“We don’t get it right every day… but we aim to get there, and that’s where people like RX Radio, like mentors [and] advocates... actually work together as a team. It’s not just the doctors and the parents.” DM

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Sharing stories of resilience

Young people in health settings