World Cerebral Palsy Day
Everyday is an awareness day for us!
Today (Sunday 6th October) is World Cerebral Palsy (CP) Day, dedicated to raising the profile of the 17 million people diagnosed with CP around the world. Cerebral palsy is more common than people realise, with symptoms ranging from mild to severe, within the 3 main types of CP: spastic, ataxic and dyskinetic.
In this household, every day is CP Day as both Nathan and Cerys have spastic quadriplegia cerebral palsy, and are full time wheelchair users, but I don’t feel that it has detracted from the people they are and were always destined to be.
Nathan & Cerys have turned out to be determined, outgoing, caring individuals. Whilst their CP presents challenges, it has also meant that, from an early age, they have learnt that life and people do not fit into boxes, and that there is always another way to meet and overcome a challenge. Yes, there are frustrations, but we have all learnt to look for solutions.
However, it cannot be denied that the world and society around is not always the friendliest or most empowering place, with difficulties in finding support and regular moments of conflict in order to obtain equipment, support in education, access to health departments, such as physiotherapy, and social care funding. These battles may build experience and resilience but they do also cause stress and upset. Attitudes and inaccessibility continue to be a challenge. Despite this, both Nathan and Cerys have had opportunities that they probably wouldn’t have had if they hadn’t had their CP, and we have met some truly wonderful people along the way.
Here are their thoughts:
Nathan:
My name is Nathan Giles, I am 28 years old and have Cerebral Palsy. My CP has enabled me to have many opportunities that I otherwise would not have had. This includes speaking at the UN in front of a formal committee on the Rights of the Child on behalf of the Children’s Rights Alliance for England; this organisation had deliberately decided that they wanted a disabled child to be part of the delegation, in order to represent all children.
My CP has also meant that I have been able to meet various types of people from different socio-economic backgrounds as many of my carers have different reasons for entering the profession, from wanting to ensure that they can better their families lives to getting experience of working with disabled children to advance their career.
My disability rights work has also shown me a clear path towards a sustainable career within which I will hopefully be able to work.
My CP has equipped me with the skills required to gain my degree in Politics and Sociology; these skills included the ability to be extremely focused on my studies, an ability I now apply in my role of training social workers, nurses and allied professionals at a local university. I also sit on a Co-Production Board working with our Local Authority.
I do feel that I have seen throughout my work as a lecturer that the support offered in schools to anybody who is struggling is more difficult to access, therefore I think that it is harder to be a child with CP now who is trying to navigate the education system than it was when I was younger. I would like someone from society to explain to me why they think this is acceptable as given the myriad of challenges this country faces it seems rather counterproductive to leave anybody on the side-lines.
For myself, I take the attitude CP will not stop me from doing anything, I may just have to change what I want to do to suit my CP.
Cerys:
I am Cerys Giles and I am 21 years old. My disability is called cerebral palsy, and I am a full-time wheelchair user. I currently have carers come to visit on a daily basis. These ladies have become a special part of my life as they help me to continue living as independently as possible.
I have just left college and I am currently taking an online business course designed for disabled people to help me develop my small business, Cerys’ Creative Corner, making and selling bespoke cards and canvases.
I am an Ambassador for OutsideIn, which is an online art gallery for disabled people.
I am also a Volunteer for Soundabout, an inclusive choir, at the Midlands Art Centre.
I am currently doing my Queens Guide Award, and I am enjoying taking an active part in Girl Guiding as a Brownie Volunteer Helper.
I also run the craft table at a local Mum’s and Toddler’s Group.
CP is a part of me and I don’t let it define me. I don’t let it bother me as it’s all I’ve known. CP has physically stopped me from walking, but I have amazing equipment that helps me to stand and a wheelchair that I use to get around.
As with all aspects of life, all those with Cerebral Palsy and those that love and care for them, will have an individual view on the subject. These are our views, and we are grateful for World Cerebral Palsy Day for giving us an opportunity to be heard. Whether or not the day will succeed in raising enough awareness to change the way society sees people with disability remains to be seen.
If you would like to understand more about cerebral palsy then the charity Scope offers support and information
