Meet the activist you can thank for one of SA’s most disability-inclusive public spaces | News24

Marlene le Roux leans forward on the sofa and says: “Here, feel it!” She nods at her left leg, which is wrapped in a supportive orthopaedic brace called a calliper – and indeed, through her silk stocking, her leg feels cold.

“By five o’clock daily, it’s like an ice block. Sometimes I take three baths a day to defrost my body. Otherwise, I can’t breathe,” she tells Spotlight.

The Artscape Theatre Centre CEO says she grew up in Wellington in a home without electricity. “As a post-polio sufferer, you don’t have blood circulation. No number of warm socks will warm your polio leg. Wellington has extreme weather conditions: ice-cold winters with snow on the mountains. My granny used to put bricks on the kolestoof (coal stove), then she’d wrap them in cloths, which she’d drape over my leg to unfreeze me,” she says.

Now at the age of 59, the impassioned self-described disability activist (“this is my second job for which I refuse to get paid”) is a frequent face in rural parts around the Western Cape. She brings theatre to communities while educating and inspiring people with disabilities. “No, I don’t inspire them. They inspire me,” she rebuts.

On using the term “disabled” versus “special needs”, she swipes a hand in front of her face as if to dismiss the triviality of semantics. For her, euphemisms or sanitised language obscure the fight for equal rights and resources.

“I say I’m a disabled woman in order for people to know, I need an R85 000 calliper to be equal to them. You can call me any word, but don’t look away. Look me in the eye.”

READ | Doctor who battled HIV says drug addiction needs the same urgency

A few days before our interview, despite a broken calliper upending her schedule, Le Roux traveled to the small rural town of Mamre, where she is the patron of non-profit organisation Lief en Leed (Love and Loss). “For instance, in Mamre, I will do disability work and I’ll go to the township and I will say to the post-polio sufferers: with your disability grant, the first thing you do is to go buy yourself a hot water bottle.”

Back in Cape Town, Le Roux presents Artscape, the main performing arts centre in Cape Town, which opened in 1971 as one of South Africa’s most disability-inclusive public spaces. Major accessibility renovations were done at the building around 2018, preceded by consultations with focus groups: people living with various disabilities and state-of-the-art designers, she says.

“Disability is not a homogeneous group. If you’re blind, you need certain resources. If you’re deaf, you need different resources. If you have cerebral palsy, you need different resources,” she says. She adds that these resources benefit everyone, really, as anyone could become disabled in an unfortunate twist of fate at any time.

Le Roux says that while legislation in South Africa stipulates adherence to “universal design”, which treats human variance as the baseline for public architecture, compliance is not enforced. This may or may not change with new legislation that is being considered— currently, the Protection and Promotion of Persons with Disabilities Bill is in draft mode before the South African Law Reform Commission. The idea is to handle disability-related issues in one comprehensive piece of legislation, rather than dealing with them across many different pieces of law as is currently the case.

“What really astonishes me, is when people build new schools and new institutions and they just build them without consulting persons with disabilities,” she says.

“I can understand if it’s old buildings being renovated, but I am amazed when they do housing projects, urban planning, new schools or new crèches, and it’s not accessible. There is no excuse.”

Detailing renovations at Artscape, she says: “Obviously, they extend way beyond wheelchair ramps. We have accessible toilets with automatic doors. Lowered catering counters so wheelchair users can order food and drinks. We consulted the Society for the Blind while creating signage: appropriate font size, contrast and lighting, reduced glare. An induction loop (hearing loop) allows people using hearing aids to tune into the theatre’s frequency (this reduces background noise and improves speech and music clarity).”

She says productions have subtitles for hard-of-hearing audiences, while deaf dancers find guidance feeling vibrations through the theatre’s stage.

Le Roux suggests that this should be an example to public institutions country-wide. “Use us as a case study,” she says.

Inside her office overlooking Cape Town’s harbour, Le Roux shifts periodically, lifting and moving her leg with her hands. Today, she has been up since 05:00 to record a television snippet for the Expresso Morning Show. This caused her to miss physio. Normally, she does physio at her home in Boston, in Cape Town’s northern suburbs, every day at 07:00. “I must have my morning physio,” she says. “I also have a biokineticist for my lungs.”

Behind her, shelves brim with trophies and a plaque that reads Western Cape Government 2024: Lifetime Achievement Award for Youth Development. Earlier this year, she addressed the Commonwealth Parliamentary Association’s forum for Parliamentarians with disabilities.

In the course of our conversation, Le Roux refers to President Cyril Ramaphosa with affinity as “Cyrilena”. One of the matters she is rallying the government for, is the 3% employee quota for persons with disabilities instituted in South Africa last year. She says at Artscape, with its 80 core staff, and up to 1000 adjacent jobs created per week (ushers, catering staff, stagehands, and more), they exceed the 3% quota. “The main challenge we have is that companies would rather pay the penalty associated with not meeting the quota,” she says.

“So my campaign now is to say to government, don’t just say 3%. Say to the companies, let’s look at assisting you. Have a ring-fenced fund to say to employers, number one, if you employ persons with disabilities, there’s a fund that you can apply to for resources.”

On August 9, Le Roux led the Artscape’s Women’s Humanity Walk from the Civic Centre to the theatre complex in the inner city, which had a special shortened version of the route for people with difficulty walking.

On August 4, speaking at the gallery launch of As She Is, a photographic exhibition featuring seventeen lavishly-styled Western Cape women who live with disabilities, Le Roux said: “So I want to say to Parliament, watch this space. We will say enough is enough for persons with disabilities. See us, hear us, give us the resources. Don’t eat up the money. Give us employment. And let us make that impact.”

Speaking to Spotlight, Le Roux points out her own salary, which enables her to afford medical care and assistance, highlighting the plight of people without resources. Le Roux’s formative years – raised by her mother Tietie and grandmother Christie, both seasonal farm and factory workers – likely shaped her own deep empathy.

Le Roux contracted polio when she was three months old in Wellington. This was a systemic health failure under the apartheid regime, she says, as the clinic for black people where she was treated would not administer a vaccine. As a youngster, her nickname was Mank Marlientjie (little cripple Marlene), but she considered this a term of endearment as her loving family rallied around her.

“I got my first calliper when I was two years old, along with heavy boots,” she says. “It was fall and get up, it was a matter of ‘adapt or die.’”

She recounts long journeys to the now-defunct Princess Alice Orthopaedic Hospital in Retreat, in Cape Town’s southern suburbs.

“That meant getting up at 04:00, asking the neighbours to abba me (carry on their backs) like an Olympic relay as we had no car, to catch a train at 06:00 and three more trains to get to Princess Alice Hospital.”

Her first surgery was when she was five years old. “The doctors decided I would be their pilot to lengthen my left polio leg, which was shorter than the right one. They drilled four very long screws right through my leg with a mechanism attached to it to be able to turn the bone every morning. Every morning for nearly three months, I would scream like a mad person when the white coats entered the room to start with the procedures of turning the screws,” she says.

Le Roux says she had 11 additional operations, and then in 2024, she had hip replacement surgery. “My non-polio trophy leg is now bionic,” she says.

At a young age, she says she learned not to dim her light. Remembering her music and adventure-soaked youth, she says: “My mother was a very good singer and ballroom dancer, and my granny was in the arts. Church was so important, and I used to dance with my friends. In summer at 45°C in Wellington, I would wear short skirts, never mind if people could see my calliper. Back then, we couldn’t use the town’s whites-only swimming pool, so we’d hitchhike up the mountain to go swim at Bainskloof.”

Amongst other qualifications, Le Roux holds degrees in music and education from the University of the Western Cape, and a Master of Philosophy in disability studies from the University of Cape Town. In her research, she uses intersectionality to map vulnerability for marginalisation. “In my work, I always put the black, disabled girl from a rural area central: she is the most vulnerable. Rurality is so important, not having access to resources.”

Le Roux’s son, Adam, died nine years ago at the age of 15. He lived with cerebral palsy; as such, he couldn’t speak and was wheelchair-bound, and spent many days at his mom’s work, in her care. Le Roux started at Artscape in 2001 and became CEO of the institution in 2015. In her office, behind her desk, an enlarged photograph honours Adam’s memory.

Caring for him informed some of the building’s alterations; for example, the addition of a quiet comfort room with a bed for people seeking respite. “My child was so severely cerebral palsy and he was autistic, a lot of noise made him overwhelmed, and I would not have anywhere to sit with him,” she says.

Her daughter Aimee is currently completing a PhD in jazz and feminism at Cambridge University in the United Kingdom. Four years ago, Le Roux wedded for the second time, marrying “the love of my life”, Belgian professor of systematic theology Eddy Van der Borght.

Indeed, Le Roux’s life motto: “Die lewe skuld jou niks,” (life owes you nothing), reverberates as she moves warmly between appointments in her tight schedule. Every so often, she pauses to coax smiles from the women around her, as she finds words to express each of their unique beauty.

News24’s free audiobook for subscribers this month is Wisani and the Bafokeng Brothers by Thandi Moagi.

From Babita Deokaran to Mpho Mafole, whistleblowers remain at the forefront of News24’s intensive investigative work.

Contact the public editor with feedback for our journalists, complaints, queries or suggestions about articles on News24.