17 million people worldwide live with Cerebral Palsy. This equates to 1 in every 700 births. On the 4th of January 1986 I made my way into the world (3 months earlier……obviously I was keen to make an entrance 😊.) Despite my premature birth it wasn’t until I was about a year and a half that I was diagnosed with Cerebral Palsy or CP as I prefer to refer to it as.
CP is a neurological disability which has incredibly wide scale and can affect people so differently. There are 4 different types of Cerebral Palsy which are:-
Spastic Cerebral Palsy (I will come back to the word “spastic” in a minute)
Dyskinetic Cerebral Palsy
Ataxic Cerebral Palsy
Mixed types
Spastic Cerebral Palsy is the most common type and generally consists of stiff muscles which cause jerky or repeated movements. There are different forms of spastic cerebral palsy, depending on the body parts affected. Dyskinetic Cerebral Palsy involves slow and uncontrollable jerky movements of the hands, feet, arms, or legs. The face muscles and tongue may be overactive and cause some children to drool or make faces. People with this type often have trouble sitting straight or walking. Ataxic Cerebral Palsy affects balance and depth perception. People with ataxic cerebral palsy walk in an unsteady manner and have a hard time with quick or precise movements such as writing, buttoning a shirt, or reaching for a book. Mixed types are a combination of all the above.
Me….I probably fall into “Spastic” CP, and there is that word again……The word “spastic” historically has been used to describe people with CP or people with disabilities in general, and in the early 90’s when I was growing up it was also a word that caused my older brother to get into a fight because someone used this word to refer to his sister. Luckily, things have moved on since then and derogatory terms such as this are non-existent, and our society and world are aiming to be more inclusive. This inclusion is celebrated by specific dates on our calendar such as the 6th of October which World Cerebral Palsy Day.
World Cerebral Palsy Day was first celebrated on the 6th of October 2012, which when you look at the big picture is relatively recent, especially when disability has always been in our society, but clearly society’s attitude and approach to this was so different. World Cerebral Palsy Day was originally called “Change My World in 1 Minute” and was launched by both Cerebral Palsy Alliance Australia and United Cerebral Palsy USA. It is now celebrated by more that 400 organisations in 65 countries worldwide, including Scotland.
I only became aware of World Cerebral Day more when I set up my business back in 2015. Having CP, myself has meant that I have received treatment and physio and occupational therapy from one of the key organisations in Scotland that provide these services for both children and adults living with the condition, Cerebral Palsy Scotland. This organisation provides all therapies that all children, adults, and families living with cerebral palsy need to access and the specialise in this condition. Annually they hold a conference every year inline with World CP Day which brings together children, adults, families, and professionals as well as organisations, who want to find out more about and CP and the services available to support people with this condition. I attend this on both a personal and professional level and this year will be no different as I will be presenting as part of the conference and speaking around the importance of person-centred planning and of Your Options Understood (Y.O.U) being part of the Person-Centred Planning Network.
Conferences like this show how Cerebral Palsy and each individual living with the condition should be celebrated. Since attending this conference I have been given several opportunities including, being interviewed on Radio Scotland around living with CP and what this means for me, and I also had the opportunity the work with SCOPE another of the U.K’s leading cerebral palsy charities. I’ve never really been into tattoos and body art, but after World Cerebral Palsy Day a couple of years ago, I decided that if I was going to get a tattoo it would be one that meant something to me. As a result, I now proudly display the green cerebral palsy ribbon on my left arm, with the words “hope and believe” in the ribbon. The full wording of the ribbon is “hope, believe, love and faith.” Unfortunately, this was too big to fit on my arm, so I chose to go with the 2 words that meant the most to me and that reflected my attitude to living with cerebral palsy.
So, this year on the 6th of October look out for the green ribbon, or wear green to help celebrate World Cerebral Palsy Day. You will not only be helping to celebrate and mark this occasion, but you will also be helping to illustrate that the words “Spastic” should never be used in any context, least of all when referring to disabled people and people living with CP.
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