‘Living with Cerebral Palsy’ .. by Donna Giles
March is Cerebral Palsy (CP) Awareness Month, 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.
Both my children, 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 and 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 can not 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 27 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 at a local college and
university.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 19 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 attend college five times a week and I am currently learning to drive my power
wheelchair.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 hoping to start my Queens Guide Award, and I am enjoying taking an
active part in Girl Guiding.I have started my own craft business (Cerys’ Creative Corner) as I love making cards
and different craft items.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 Cerebral Palsy Awareness month for giving us an opportunity to be
heard.Whether or not the month will succeed in raising enough awareness to
change the way society sees people with disability remains to be seen.”
