Hi, I’m Helen. I have Cerebral Palsy.
Editor’s note: Is this speech, Lesley talks about learning to imagine an accepting community and encourages her listeners to empathize with others while also acknowledging their own deep feelings. Lesley has an integral, personal knowledge of the issues she writes about. Her Aware Bears project aims at addressing many of the issues she raises here. Aware Bears create awareness and support for people and families living with cerebral palsy by showing children and their families that this adorable stuffed bear with CP can relate to them on a new level.
Your imagination is one of your greatest gifts. It allows you to become anyone you want, it’s where the impossible becomes possible and the quietest of voices can be heard.
It’s where lime green houses with pink polka dots make perfect sense and in fact an ordinary brick house seems decidedly out of place. Possibly the best part about having an imagination is that it’s yours and no one else’s so it doesn’t need to make sense to anyone but you.
So on any given day if you decided to wear a yellow and purple top and shocking pink tights with green earrings it would be perfectly acceptable because it is your imagination and no one else’s.
In my imagination the world is full of possibilities, I live on a desert island where shoes are not needed, there is no use for knives and forks because the fruit knows exactly what size they need to be for me to enjoy them. There is no such word as can’t and mistakes are the blueprints to my success. The aisles for shopping are wide enough for my wheelchair to fit and for me to shop endlessly for clothes, there is a machine that I punch in my shoe sizes and automatically a matching modified shoe appears on my foot. People are just automatically accepted for who they are without having to justify their existence.
Now imagine you knew someone who had the biggest dreams with the brightest colors but no one thought it possible because they looked a little different or took a bit longer to express them.
My friend Helen knows all about that. She’s no ordinary bear. She has hemiplegia which is a type of cerebral palsy. What is cerebral palsy I hear you ask? The dictionary defines it as ‘a condition marked by impaired muscle coordination (spastic paralysis) and/or other disabilities, typically caused by damage to the brain before or at birth.’ This is a very broad definition and the truth is that almost every individual is affected differently. There are also varying degrees to which people are affected. Some can lead a relatively normal life with some minor adjustments to their daily activities while others need permanent care and cannot look after themselves at all. CP affects the body and muscles but it also affects people’s intellectual capacity and their ability to communicate.
Helen visits children and their families who live in South Africa and are affected by cerebral palsy. She teaches them that they are not alone and she understands the everyday challenges they face. She connects families and helps to share their story and shows them that although they all come from diverse and different backgrounds they all share a common bond that weaves a blanket of friendship.
She is a voice when those she meets cannot speak, she is a friend (and sometimes even a BFF) to those who can’t seem to make any on their own, she encourages those she meets to believe in their dreams and she is a companion to help them up when they fall down.
She shows children a world of possibilities and encourages them to celebrate and take pride in their uniqueness instead of trying to fit in. She shows them that when there are no categories for them to fit into they can create their own and know that, in time, others will join them.
Helen’s hope is that children learn to accept their limitations and realise that the secret to success lies in making them work for you instead of against you. Sometimes all you need is a nudge to realize that.
Often all it takes is changing how you choose to see things that makes the difference. You can surprise people by turning what they perceive as a weakness into a strength.
Above all she knows that everyone craves a sense of belonging because being different is the hardest part.
There will always be someone out there who will say it can’t be done or who will try to hold you back. This is true in all walks of life and the unfortunate reality is that there are people who take pleasure in seeing others fail. One of the positive spin-offs that we have seen through Helen is that these negative people are able to see the uniqueness of the children living with CP and are able to help them celebrate it. Negative people are often like that as they have not yet found their own space and finding fault in others deflects from their own inadequacies. Helen’s spirit also helps these people find their own strengths and celebrate them.
Imagine you held the key to help people change. You do! It is the simplest gestures that have the greatest impact. You show empathy instead sympathy by putting yourself in someone else’s place. Like when they take a bit longer to get dressed after PT because they only have the use of one hand and you offer to stay behind and wait. You understand their reluctance to discuss the latest shoe fashions because you know how upset it makes them that they cannot wear them. Rather than remarking on how their shoes complement their outfit the next time you see them outside of school you take the conversation in another direction. You create new rules for a playground game so that everyone gets a turn and you try your best not to lose patience when they ask the same question for the third time.
Now you may be asking yourself who I am and what could I possibly know. My answer is this.
I was born with cerebral palsy. I, like Helen, am a right hemiplegia. I attended Vista Nova first as an outpatient and then as a pupil until I was mainstreamed in grade 7. My disability was so slight that my lack of peripheral vision, hearing loss, muscle spasms and lack of sensation on my right side went virtually unnoticed. I went on to study teaching, qualifying as a primary school teacher. It was only once I had my stroke that the true extent of my disability became obvious. The fact that no one realised the subtle changes I had made to compensate only proves that I was more capable of adapting to the circumstance than many thought possible.
If I had listened to all the critics and believed everything they had predicted could happen, I would not be here sharing with you today.
I have learnt that the only thing perfect in this world is imperfection and the only constant is change. Imagine more. Go out into the world and be the difference that you would like to see. Take control, work with what you have and take others with you on the journey. Encourage others through your actions and not only your words and don’t be afraid to ask questions. Questions like, ‘What if? Which way? How can I?’ and, of course, ‘Imagine if?’ Accept that you have limitations but don’t let them define you and, where you can, push yourself to overcome them and develop new strengths.
Although my position may have changed and my disability has been highlighted something that has remained a constant is the core belief within me. Something that neither circumstance nor people have been able to diminish. Although much of what I was capable of has changed, in some respects I am able to deal more honestly with my limitations now, than perhaps I would have done before.
I am Lesley Potgieter. I do not suffer from cerebral palsy, I live with it.
Lesley Potgieter was born with cerebral palsy. Despite her disability she overcame a number of challenges and obstacles and qualified as a primary school teacher. When the first of her two sons was born Lesley took a break from teaching and focussed on raising her family. Being a mom of young boys she realized that there were very few audio stories available for kids. Lesley then started writing stories and recording them in a studio. Her stories, Never-Ending Stories, are now available on CD. You can learn more about Never-Ending Stories on her website or on Facebook.
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