If you didn’t see Tholakele Gumede in person you would picture an able-bodied person, energetic and fast-moving. When she laughs it is like bells ringing — a joyous sound filled with an infectious happiness.
Born with a serious spine and hip deformity that restricts her movement and makes her reliant on a pair of well-worn crutches, this go-getting entrepreneur from Richards Bay is following her dream of becoming a designer.
When we met recently in KwaZulu-Natal — social distancing style — it was clear she has developed the knack of not allowing any form of disability to get in the way of leading a full life and reaching for her goals.
Disability no match for gutsy Tholakele Gumede
No taller than an average eight-year-old approaching, Gumede is all go and greets you with an infectious smile.
“Good thing we don’t have to shake hands,” she giggled from behind her mask. “Otherwise I would fall over.”
We settled for an outside coffee spot where her inspirational story unfolded.
“I grew up in Mseleni. It’s not far from Richards Bay. Funny place really. Not much happens there.”
Rare joint disease affects designer’s mobility
But sadly, what does happen there, for reasons that are not entirely known, is that this deeply rural area has a high incidence of Mseleni hip disease, which exclusively affects a rural community of Zulu-language speakers living in KwaZulu-Natal.
Gumede is one of those affected by Mseleni joint disease and she remembers seeing many children like herself severely disabled.
“Even with crutches it meant I could never walk that far,” she said. Then she giggled: “I always wear these extra high heel shoes when I go out because it makes me look taller.”
Beadwork just one part of fashion design dream
While beadwork is a part of her heritage — each coloured bead telling a different story — Gumede said it wasn’t enough for her.
“I wanted to know more and learn different skills. Knowing I would likely never marry or have children meant I had to think about my life in a different way.”
The “different way” was enrolling in a skills college near Richards Bay called Zukulise, where she studied sewing and baking for two years.
“I loved fashion design, really posh beading and traditional decor. There were so many things I wanted to do that it was like birds fluttering in my head.”
Again that cheerful giggle and dancing eyes. “When I got my certificate, it was time to take off again.”
Time to focus on biggest dream: Fashion design
The next part of her journey was filled with a number of working environments — from canteen lunches to wedding planning.
“It was plans, plans and more plans. I enjoyed being very busy. The more work the better — even long hours were fine. But then it was time to focus on one thing. I mean I couldn’t go on running around forever. Also, with lockdown there wasn’t much work for me.
Gumede has decided that, as fashion was her big love, she would concentrate on that. She has bought herself a sewing machine, and all the bits and pieces that go with dress making.
“It was the best decision” she says with pride.
“At first, I made clothes for myself that I thought people would like, stripes, leopard prints, African prints, fabric that I also loved. I was like my own advertisement. When people saw me in these clothes they would say: ‘Tholakele, where did you find that?’
“When I told them I made it myself and I could make something similar for them, I got so busy.”
Like all entrepreneurs, Gumede has her own set of dreams. It includes state-of-the-art walking aids, staging her own fashion show, and starting a sewing school where she can teach other disabled people to sew and design.
More about Mseleni Disease
According to medical journal The Lancet, this condition was clinically named Mseleni joint disease because of the localisation of affected individuals around the Mseleni Mission Hospital in Mseleni, South Africa.
Weight-bearing surfaces of joints are mostly affected, but a unique diagnostic feature is the bilateral occurrence of hip pathology, which frequently includes pelvic shape deformities. Individuals with Mseleni disease have chronic joint pain, limited mobility and, inevitably, severe physical disability.
Over the past 50 years, several cultural, pathogenic, environmental and genetic causes have been investigated, yet the cause of Mseleni joint disease remains unknown.