My journey with polio: a dance of resilience and empowerment

by Marlene le Roux

“As the CEO of Artscape Theatre Centre, one of Cape Town’s most iconic performing arts institutions, I believe it is crucial to lead by example in collaboration with wonderful people and partners who share my vision of inclusivity, humanity, empowerment, and excellence, based on the values entrenched in our country’s constitution.

Art forms, with all their diverse genres—visual art, music, theatre, literature, dance—are at the core of our daily business, which we execute with great aplomb as a collective. We celebrate this together with our patrons, visitors, local communities, as well as our city, provincial, and national leaders.

But then there’s my own dance, a genre I’ve performed for 57 years with great difficulty. It is my own, unique ‘pole-io’ dance, one that is daily taking its toll on my physical strength and psyche. This dance, with a difference, honours two exceptional heroes—my mother, Tietie (Christina le Roux, née Abrahams), and my grandma, Christie (Christina Abrahams, née Davy)—who accompanied me unselfishly all the way on this journey.

My dance with polio is characterised by trauma, excruciating and constant pain, exhaustion, depression, rejection, humiliation, despair, discrimination, and struggle. This special dance means that I can only use my weak leg with the support of a calliper—a leg brace that has accompanied me all my life as a person living with polio. This disease recently culminated in a full hip replacement to ensure I can still walk independently on my better leg, which is my primary support and stronger leg.

So, what is polio? When did I contract it, and how is it affecting me? Caused by a virus that mainly affects nerves in the spinal cord or brain stem, polio, or poliomyelitis, can lead to paralysis of the limbs. It affects your muscles, and as we all know, one’s entire body is wired by muscles. In Afrikaans, polio is called “kinderverlamming.” It can also lead to trouble breathing and sometimes death.

I contracted polio in 1967 at the tender age of three months. My mother and grandmother, both upright, elegant seasonal farm and factory workers from Wellington (near Paarl), told me years later how doctors at the clinic for black people and so-called persons of colour dismissed their concerns that something was wrong with me.

“What do you hotnots know? The child must be teething!” they remembered the white doctors sayings. The white doctor at that time could not even administer the basic polio drops. Thus, my journey of multiple operations and long stays in hospital started from a very early stage.

During the dark days of Apartheid, no one would ask the mother, the granny, or supporters about their feelings of looking after a child with a disability. When I contracted polio, the doctor actually blamed Tietie and Ma Christie for “neglecting” me.

The doctors’ attitude towards them was: Deal with it. He claimed that I would not live long, and a priest was called. From a tender age, I encountered the invisibility of how you, as a patient, can be treated as an object. Ma, Tietie, my aunty Tietie Maai, and neighbours would regularly travel to Princess Alice Home in Retreat, the only orthopaedic hospital in Cape Town at the time.

That meant getting up at 4am., asking the neighbours to abba me (carry me on their backs) like an Olympic relay, as we had no car, to catch a train at 6am. and three more trains to get to Princess Alice Hospital. We waited in a smelly waiting room to encounter doctors and students in white coats who didn’t ask anyone: How are you? How do you feel? How does the child feel?

At that time, you had to lower your eyes. You couldn’t just look the whites in their eyes. Then the objectification started: measurements, me undressing, with no privacy, and further discussions. During these sessions, I started to learn to transport myself to another world. When my time was up, the doctors would go for tea, and in silence, these angels of mine, totally dehumanised, would have to take two trains to get to Cape Town Station again, sharing one pie with gravy cut into four pieces. And then off to Wellington. Then the relay to get home would start again, and all these angels would lose a day’s wages. There were no unions in those days, no rights at all.

I got my first calliper (supportive orthopaedic device)—a heavy structure—when I was two years old, along with heavy boots. Oh, so ugly! Again, no one told you how to walk with these devices. It would fall and get up. You carried an entire 2 kg on your leg. But we all decided to carry on, and my angels: Marlientjie is going to make this work. She can stand and walk although mank (crippled).

My name was Mank Marlientjie (little cripple Marlene). For me, it was a term of endearment, as my Verlate Kloof, polonie-dorp community and my beloved family rallied around me. But there was no psychological support; it was a matter of “adapt or die.”

There was always sadness in my Tietie’s and Ma’s eyes. They never expected that this would happen to me and them.

Then the operations started. My first was when I was only 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 (the scars and holes are still visible).

Again, no one explained the enormity of the operations to my angels or me. 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, with no one holding my hand as my family was too far away, and no painkillers!

Discussions after discussions left me in the care of the nuns at Princess Alice Home, who were also not the kindest. I stayed in this hospital for a whole year! Sometimes, the family could stay with friends on the Cape Flats so that they could visit me. As a child, how I longed to be with my family. Here I learned to cope and navigate my life. Remember, black and kids of colour were treated differently. I survived, but I parked this experience just to cope. Subsequently, I had 11 more operations, each one with no psychological support.

I started navigating my life as a polio survivor by being fully involved in church activities, music activities, and wonderful friendships. I was only accepted at a mainstream school after my Tietie protested on her own for the school to accept me irrespective of my physical disability. The school stepped up. Everybody helped me up and down the steps, carrying my bags. The entire community became activists without actually knowing it. They just practised inclusion on so many levels. Kudos to Wellington! I even swam in the Berg River—glorious days—amid my usual operations and fittings.

Gradually, it became more bearable as I told my granny and Tietie that I had accepted my disability; it was not their fault. Living in a house without electricity, especially in winter, was my most difficult time as a 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 in winter with snow on the surrounding mountains, and up to 40 °C in summer. My granny used to take bricks, put them on the coal stove, and wrap them in cloth to keep my leg warm. Till today, I still use hot water bottles.

UWC accepted their first person with disabilities in 1986 after UCT rejected me. Again, my Tietie made history by giving UCT the middle finger after hiring a car at great cost to go and enrol me at UCT, just to find out you needed a permit as a black/so-called coloured person, and at that time, disabled singers were not welcome to study opera anyway. Thank the universe; my life changed as UWC took in their first person with disabilities.

There, I had a full life as a student: dancing, protesting, marching, lectures, and everyday student activities. Throughout my growing years, I developed my life’s motto: Die lewe skuld jou niks (life owes you nothing). I accepted myself and ensured I was an activist as a teacher. In the beginning, the kids would call me names, but then they stopped and just saw me as their music teacher. I became privileged to travel through South Africa by just being me, and people around me became comfortable with my disability.

But over the years, I also had to work hard on my insecurities. You always give 150 percent to show you are capable, irrespective of your disabilities. From my childhood days, I was involved in numerous accidents where the calliper just broke, or my leg would give in as I was walking. These incidents were very traumatic, but I just had to cope, get up, and go on. I survived a brain tumour and had two beautiful children by caesarean birth. The youngest, a son, was born with cerebral palsy, a disability that caused his death at the young age of 15. Subsequently, I had a hysterectomy, followed by another big operation to pull my muscles together, which had collapsed. Shortly after that, I was in a near-fatal car accident. Then Covid-19 followed.

I also had to deal with the horror of post-polio symptoms. I usually have endless energy, but recently these symptoms started getting more severe. I first thought I was having a very long menopause: I got tired easily, my muscles started feeling stiffer than usual, and I struggled to get out of bed. Despite these challenges, I continue to dance my unique dance of resilience, honouring my journey and the incredible support of my family and community. My story is not just about survival; it is about thriving against all odds and inspiring others to embrace their own journeys with courage and determination.

* Marlene le Roux, CEO of Artscape Theatre.

Weekend Argus