I might look disabled to others, but as the saying goes don’t judge a book by its cover. Just because I’m surrounded every time we meet by technology does not mean I’m incapable of having a high-quality life. This month is Cerebral Palsy Awareness Month and I’ve seen lots of facts floating around.
One in 3 people with CP cannot walk
This shouldn’t stop people with cerebral palsy from being involved in sport. Using a power chair has not stopped me from representing my nation as a frame runner (previously called RaceRunning) in 2017 and 2018. Then in 2021, I was privileged to represent GB in the Paralympics at boccia. I’m fit and healthy, probably more so than many of my able-bodied peers. These days my exercise of choice is running.
People with CP use 3-5 times more energy than other people when physically active
And up to twice as much energy when seated. This can create fatigue issues. My energy levels fluctuate on a daily basis but with good nutrition, hydration, and sleep routines I have a very full and active life. I just need to recognise my boundaries and balance life accordingly.
Cerebral palsy is not a learning disability
My speech, hearing, and physical impairments have not defined my cognition. I’m a university graduate, it might have taken me longer to complete my degree but we are all learning through life so in my book that’s ok.
One in 4 people with CP have a speech impairment
My dysarthric, difficult to understand, speech doesn’t mean I have nothing to say. I have plenty to say and share using augmentative and alternative communication (AAC). In fact, I have so much to say that I am regularly invited to speak at events about my life experiences.
15-25% of people with CP have a hearing impairment
My hearing impairment might mean I miss things. But with decent hearing aids I get most things these days. Since I was a baby I have also been a lip reader. And what a bonus that can be!
Needing 1-1 support 24/7
Just because I need extra support in my life doesn’t make me less. My full-time (24/7) personal assistants are trained to carry out the physical tasks I can’t, always under my direction. Because of them, I’m empowered to be my own person.
Please don’t judge the label(s)
There is so much more than appearances for everyone whoever they are. I won’t judge you for being tall, small, wearing glasses, having red hair, or making your own choices in life. In the same way, I’d ask for you to be open-minded and assume first that I’m competent. Please refrain from speaking to me like a 3-year-old, shouting at me, and waving your arms in a frenzy with lots of thumbs up.
Nor will I ever assume all tall people, small people, glasses wearers, or redheads are the same because of a label. Please don’t assume all disabled people are the same. As humans we are all unique, my disability does not make me the same as all other disabled people. It definitely doesn’t make me like all others with cerebral palsy, speech, and hearing impairments. Nor are all other disabled people like me.
So do all the facts add up to a whole?
They do from my perspective, they make me the whole person I am. But during Cerebral Palsy Awareness month, and actually the rest of the year, I’d ask people to remember* that:
- being non-verbal doesn’t mean not being able to communicate
- being partially deaf doesn’t mean not being able to hear
- using a wheelchair doesn’t mean not being active
Together these challenges are not layered upon layer. What I mean is that we should not write off someone with multiple impairments.
*Please note that I cannot speak for all others who have CP, are non-verbal, partially deaf, or who use a wheelchair so these are my views only! Everyone is different and we need to celebrate that.
Problem solver extraordinaire
To be successful in life many people with disabilities have had to find innovative and creative ways to overcome everyday obstacles. I know I approach life with an open mind, ready to meet the challenge, looking at each situation as a problem to be solved. Where there is a will there is a way and I will find that way!
I am who I am
My CP, speech, and hearing impairments make me me. I don’t know what it’s like to be anything but me, but what I do know is that I have much to celebrate in my life. You can read much more about what I think about identity and AAC here.
So please next time you see someone with a disability try looking beyond their immediate appearance, or just the facts that came out during cerebral palsy awareness month. Just view us how you’d wish to be viewed yourself, as an equal in life.