Cerebral Palsy

Today I am wearing green for World Cerebral Palsy Day. You might think, like I did, that cerebral palsy is not very common, but it affects 1 in 400 children in the UK*, and of those 1 in 10 use Alternative and Augmentative Communication (AAC)**. Apart from statistics like these it is very difficult to generalise for cerebral palsy, as the brain damage affects us all differently. But for some reason it is seen as fine to generalise for physically disabled non-verbal children, and to yoke us with the educational label PMLD, and assume we all have a Profound intellectual disability. For me, and many like me, it is these assumptions which are the most disabling. Assumptions that, because we struggle to communicate we must be intellectually disabled; assumptions that we need to be talked to and treated like toddlers; assumptions that our quality of life is determined by labels.

In researching for this blog post I found some very depressing videos about what it is like to live with someone with cerebral palsy; but I also came across some great examples of people with cerebral palsy loving active and fulfilled lives, with the support of their family. People like the Cheetham family (see video below), who use social media platforms to raise awareness about cerebral palsy. Hannah answers questions on her AAC device and shows how fulfilling life can be.

In solidarity with everyone who has cerebral palsy I wear green, but just like the clothes you wear don’t define you, so cerebral palsy, PMLD or any other label does not define us. Next time you meet someone who looks different to you, speaks differently to you, dressed differently to you, take some time to get to know the person rather than make assumptions about them. That way we can all enjoy a life full of colour.

Video of the Cheetham Family

* NICE 2017 ** NICE 2020

4 thoughts on “Cerebral Palsy

  1. Jonathan, I just love that green shirt on you. As always, you have chose your clothes well. I also totally agree on what you say. Just knowing you, I know just how intelligent you are, how handsome you are and how caring you are. You just get on with life and fill your days with happiness, love and knowledge. Love you Jonathan, for being you.

    Liked by 1 person

  2. Thanks so much for your continuing words of wisdom. Thanks also for sharing the video. The smiles from Hannah just light everywhere up. I worked with a young lady with cerebral palsy for a few years. She had excellent keyboarding skills and patiently transferred all the entries (over 4000) in our baptism book onto the computer into an spreadsheet so we could more easily find entries for enquiries.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s