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.

* NICE 2017 ** NICE 2020

Today is National Poetry Day, and the theme this year is vision.  During the summer I was asked to write a poem for the Diana Award to celebrate the amazing visionary work that the award recipients do across the world.  Princess Diana believed that ‘young people have the power to change the world’, and the recipients demonstrate that in spadesful from Faith producing thousands of blankets for people undergoing cancer treatment in Canada, to Nikhiya supplying bags, books and blessings to thousands of Indian school children, to Nik advocating for kindess and equality in the UK.

Here is the poem I wrote, and some Diana Legacy Award holders reading it. Enjoy!