National Cerebral Palsy Conference – May 2013

Some may argue what relevance a bear called Helen with Hemiplegia could have and what possible difference could she make to the lives of those living with cerebral palsy and their families. My answer to these critics would be this…


Helen represents Hope. She represents the opportunity for families and friends to have a safe space to talk about negative emotions that we often forget exist or assume will automatically resolve themselves.


She provides an opportunity for children to identify with their feelings. In a mainstream world where there are seldom young role models for children and adults living with cerebral palsy Helen allows the chance to interact with a reflection of themselves and the opportunity to identify and deal with what they are feeling.


Helen represents a possibility and opportunity to celebrate one’s uniqueness and be seen in a positive light. Too often the focus is on the negative challenges people with cerebral palsy will face in their lifetimes. What if we were only to focus on the positive contributions people with CP can make to society?


Helen allows families to see they are not living in isolation but share a common bond with each other. She connects people. She shows us that, while the terms used to describe CP are grouped together, the people themselves are unique and diverse and cannot always be classified.


Helen allows us the opportunity to link with people in the mainstream and become a voice for many who do not have the ability to do so themselves and to change the misconceptions and untruths many in the mainstream have.


Helen has the potential to change perceptions amongst ourselves. To see the true potential each person has, to help identify strengths and foster them. In order to do this we need to broaden our focus.


We must realise that our long term goals need to be focused not only on childhood but rather in the long term development of a CP child becoming an adult with the end goal being their ability to be independent, productive and contributing members of society. This can only happen if we change our mind set and strengths are recognised and encouraged while creating opportunities to equip those with CP with life skills.


There will always be those critics that will say it can’t be achieved and for some, because of the extent of their disability this may be true, but for those who have the ability to, we have an obligation to help them forge a path for themselves and those who come behind. Every success story adds to a list of role models children can look up to.


Helen has the potential to help those with CP and those who work with them to determine their own future by recognising and acknowledging the weaknesses and working within their parameters and realising that acceptance is a process.


It is true that some people are afforded more opportunities than others but realising that one can create one’s own opportunities by understanding one’s strengths and then working within these parameters opens up a new universe.


As much as we want to be integrated into the mainstream there comes a time where it is necessary to come to terms with our disability. For some this is an easy transition to make while for others the path is slightly more complex. It is at this juncture in our lives that Helen can make an impact. It affords us the opportunity to transfer negative emotions that we may feel but are too embarrassed to admit out loud.


Helen is a great tool that can be utilised to support children, adults and their families to draw strength from the fact that they are not alone. Through Helen children become advocates for themselves. They allow those that work with them to realise they understand more than they are capable of expressing. It is these simple gestures that we take for granted that have the greatest impact. After all we are not looking to create sympathy but rather develop empathy and a greater understanding of the potential that lies within each individual.


Perhaps you are thinking that these ideas are far too philosophical and what right do I have to comment…


I was born with cerebral palsy. I 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 peripheral sight and hearing loss 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.


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. This is what I hope to pass on through my friend Helen and the lives she’ll touch.


I am Lesley Potgieter. I do not suffer from cerebral palsy, I live with it.

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