World Cerebral Palsy Day

02 October 2022

Community ConneX is partnering with Harrow Council to celebrate World Cerebral Palsy Day on 6 October 2022. We are celebrating the lives and achievements of those who live with cerebral palsy, and the individuals and organisations who support them.

collage of people with cerebral palsy

Click here to watch a video of Brendan and Conor raising awareness about cerebral palsy.

Raising awareness about cerebral palsy

We know that children and adults living with cerebral palsy are discriminated against. Through raising awareness, we aim to ensure equal rights and opportunities for people who live with the condition.  

Community ConneX spent time with Brendan Chivasa and Conor Burke, whose experience of cerebral palsy affects their lives in different ways. By learning about the challenges faced by people like Brendan and Conor, we can challenge our own limitations

Communication is key

The way we see and hear people, whoever they are, affects how we get to know them. When you meet Conor and Brendan you notice that their speech is affected by their cerebral palsy.

Anne is Conor’s mum; she knows that most people won’t understand him, but she can tell what he is saying by his facial expressions. Non-verbal expression is a process we all engage in fluently, why then do many of us falter when we communicate with people who have cerebral palsy?

Bringing down barriers

Brendan points out that the barrier to understanding is one that other people create: “I don’t have a problem understanding people at all. It’s them: how they speak to me. Sometimes people don’t want to understand me.”

While Brendan doesn’t need people to speak slowly, Anne finds that Conor responds better when people simplify their language and speak more clearly. She says: “It is very important for him to understand what you’re saying to him.

Take time to listen

Brendan is aware that people who are not familiar with complex disabilities might find it hard to understand him. He explains that his speech is affected by his mood: the more excited he is, the more he struggles to speak. He would like people to give him time to calm down so that he can form words more clearly.

Brendan also uses his mobile to text when people don’t understand him. Although this seems like an imposition after the effort he puts into speaking clearly, Brendan insists: “It’ll be easier – I don’t mind – because I want you to understand what I’m saying to you.”

Celebrating life

Brendan and Conor lead the way when it comes to having fun. Despite the obstacles he has to overcome, Conor loves music and dancing. As Anne says: “He gets a lot of happiness out of life and well done to him!” Brendan enjoys playing football, karaoke and taking centre stage at Notting Hill Carnival.

Life goals

One person’s milestone can be another person’s mountain. Conor’s parents waited 4 years to see him take his first step, and the pride that Anne takes in sharing that memory is palpable. It’s enough for her that Conor has a good quality of life: “I don’t try to focus on his disability. I just want him to find happiness in activities that he likes.”

Brendan’s activities would thwart most people. Brendan was the force behind Community ConneX’s successful “Nurses Not Hearses” campaign, which took him up and down the country, and to the Houses of Parliament, pushing hospitals to provide Learning Disability Nurses. He also campaigned for step-free access to Harrow-on-the-Hill underground station, and now has his sights set on securing employment rights for people with learning disabilities.  

Learn more about cerebral palsy

The disability equality charity, Scope, has a helpful page that explains the causes and symptoms of cerebral palsy; click here to read more.

You can also find out how individuals and organisations throughout the world are raising awareness by clicking here

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