After centuries of oppression, women are making a big noise! To celebrate Women’s Month, ROLLING INSPIRATION chats to seven golden women with disabilities to hear their tales of success
Trained occupational therapist and seating specialist for CE Mobility, Kat Swanepoel was in her final year of studying when she started experiencing symptoms of Primary Progressive Multiple Sclerosis (PPMS).
“I started experiencing weakness in my legs, sensation loss as well as bladder problems. This started a journey of neurologists, MRIs and confusion for doctors and me alike,” says Kat.
“I was initially told that I had a degenerating demyelinating disease and that I would be paralysed in five years. Only when I experienced my first problems with vision loss was I diagnosed as having PPMS.”
Kat is paralysed from the chest down and experiences severe weakness in her hands and upper limbs. “I am blind in my left eye and have various other symptoms as a result of the damage throughout my nervous system. The disease is proving to be progressive in nature but I try and adapt to each new situation,” says the 29-year-old from Benoni.
She says the biggest challenge has been to cope with the sheer unpredictability of the disease, which makes it very difficult to make plans, set goals and make adaptations.
“When people ask me how I cope, I always answer that I try not to ruin what I have today by worrying about what might come tomorrow. It is important to me that today is enjoyed to the fullest. I wish I could say that this is how I always react, but it is the belief that I hang onto during the dark days. I have often struggled with a sense of inferiority and feeling as if somehow my disability has made me ‘less’ of a person. That feeling is nonsense and you will always be more than enough. You are beautiful, courageous, a warrior and always competent in spite of any challenge you might be facing. The more we believe this about ourselves, the more the world will believe it of us,” she observes.
After working in the corporate world for over 25 years, 47-year-old C6/7 quadriplegic Renè Moses from Cape Town started a shuttle service company, specialising in wheelchair-accessible tours and transfers called Travel with Renè.
“I was in a motor vehicle accident in January 1995 en route back from our second honeymoon, just outside Humansdorp, Eastern Cape. The tyre burst and the car spun out of control, rolling down an embankment. When the roof was hit, it came down on my head, dislocating my vertebrae and snapping my spinal cord,” she recalls.
She says the biggest challenge after the accident was to accept her my new situation. “As an independent, very active young lady of 25, it was extremely difficult adjusting to being dependent on others and not be able to do all that I could before my accident. Also, being married for just a year made me feel terrible, as I felt I’d now become a burden to my husband,” says Renè.
Renè started her career in the customer service industry and moved into quality insurance in call centres. “After seeing people with disabilities struggle to get around, it made us view the disability market as a huge potential both locally and internationally.”
After her husband passed away, Renè remained strong. Her advice is to take life one day at a time and understand that if a man loved a woman before she had a disability, he will still love her afterwards.
“Believe in yourself, then others will believe in you! It’s not easy and you will want to give up – many times – but don’t. Life is precious and so are you, she says.
MARLENE LE ROUX
This 50-year-old superwoman hails from the rural town of Wellington in the Western Cape and is the CEO of the famous Artscape Theatre.
Born in apartheid South Africa, she felt that she was let down by the poor health system. When she was only three months old, She contracted polio and suffered a brain tumour as well. “The black clinic ran out of vaccine and the white clinic could not administer the polio injection to a black girl,” explains Marlene.
“My biggest challenge was that I was stereotyped as a rural disabled black girl who would go far in life. I attended a mainstream school with no accessible infrastructure, but I made sure to participate in every activity.”
From a young age Marlene decided that she was going to accept her disability, concentrate on all of her abilities and work hard. “I became a teacher under very difficult circumstances. I didn’t take myself too seriously and just stayed focused. I now face every day with post-polio syndrome joint and muscle weakness with chronic pain – but then again, I count my blessings,” she says.
The motto by which she lives is: “Life owes you nothing.”
“Your attitude will determine how people would perceive you. Success is a combination of hard work, humbleness, respect for others, a good sense of humour and the ability not to take yourself too seriously.”
This enigmatic teacher, speaker and author of recently published memoir Brave Lotus Flower Rides the Dragon is a C4 quadriplegic who never backs down.
The 47-year-old from Mbombela (Nelspruit), Mpumalanga, was in a car accident in April 1998, which left her paralysed from the neck down.
“My biggest challenge is the total loss of privacy and independence. Even now, 19 years down the line, I still hate asking for help. Yet, most people are keen to help – they just don’t always know how. My disability then becomes an opportunity for me to show and teach others how to help and this in turn makes them feel worthy and appreciated,” says Tracy.
“Over time I’ve learned that there is no such thing as real independence: we all need others to function in society. We are all interdependent.”
She says being a woman has very little to do with the physical body: “It’s about a state of spirit – the mind, heart and soul. It is a combination of your personality, passion for life, intelligence, opinions, humour, wit, interests, your heart and your light that defines your essence as a woman. Never be ashamed of who you are; you are enough.”
She adds: “You are worthy of respect. Live with dignity and grace. Celebrate your uniqueness. Embrace your femininity. Honour your essence as a woman.”
Tracy believes that women should always make time for other special women in their lives: “Never underestimate the power of the sisterhood to add value to your life and make a difference to society.”
Tracey explains that Brave Lotus Flower Rides the Dragon is a title that belongs to every woman living with a disability. “Women with disabilities are brave, because although society views disability as weakness, it demands the utmost strength from those living with it. Just like a lotus flower we all have the potential to germinate in the darkness of our lives, rise from the mud, push through the murky water of our disabilities, blossom into something beautiful and radiate into the world. Each of us is riding our own dragon.”
This 38-year-old from Cape Town has phocomelia, which means she was born with shortened legs and no arms.
“There is no medical explanation for my disability. Fortunately for me, a supportive family, determined personality and access to mainstream education helped me to be where I am today,” says Nicky.
Nicky wears three hats. She is a clinical psychologist, an international speaker and the founder of the non-profit organisation, Nicky’s Drive, which funds car adaptations for people with disabilities in South Africa.
“My greatest challenge has always been my mobility and independence. I drive an adapted car that was donated to me from the United Kingdom 15 years ago – it transformed my life! The challenge with this, is that the adaptations I use to drive (joystick steering) is not available in South Africa, making a replacement vehicle extremely costly. I hope we get to see driverless technology working in South Africa one day soon!”
Nicky says that if she had to focus on the things she can’t do, she could get depressed. Consequently, she advises other women to focus on what they CAN do.
“When we understand our limitations and focus on our strengths and talents, we can boost our self-esteem and lead empowered lives” she concludes.
A true disability equality advocate, 34-year-old Sebenzile Mthembu has recently become known for taking on Mango Airlines after being discriminated against on a flight.
Earlier this year the planning administrator from Jozini in KwaZulu-Natal was in Johannesburg for work and booked a return flight from OR Tambo to King Shaka Airport in Durban to see her doctor.
“I booked my flight two weeks before the travel dates and Mango told me I had to fill in a questionnaire to state the condition of my disability. I followed all the procedures and they replied back via email that my request has been approved. They said that when I got to the airport a person would be on hand to assist me to board the flight, as well as in Durban,” she says.
However, when she got to the airport on the day of her travels, she received a “very disappointing” reception and was ultimately removed from her flight.
“The lady who was supposed to help said: ‘You can’t travel with our flight because you are disabled. You must make other arrangements of how you continue with your journey, because I am cancelling your flight’,” she says.
Sebenzile had to get to Durban to see her doctor, so she took a bus that night and arrived in Durban only three hours before her appointment. She also took another bus back to Johannesburg as she had work the next day.
She took on Mango Airlines in the media, but she says the orange airline never apologised for the response and continues to argue that they were right.
She has been paralysed from the waist down since she was 18. She and her family were on their way to church on April 25, 1998, when she started feeling pain and could no longer walk. After a year of tests she was diagnosed with tuberculosis of the spinal cord.
“The biggest challenge is when I meet people who undermine or show discrimination towards me because of my disability. Although I always face this challenge, I have realised that there is a long way to go when we look at the way people with disabilities are treated in our country.”
Sebenzile says the best advice she can give other women is to be strong and know your rights. “Don’t let anyone undermine you or take advantage of you. Be friendly and kind to others, but remember that not everyone wants to help.”