What does Cerebral Palsy awareness day mean to me? — Scope | Disability forum
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What does Cerebral Palsy awareness day mean to me?

Chloe_Scope
Chloe_Scope Scope Posts: 10,565 Disability Gamechanger
 October is always a special month to me. Despite raising awareness all year round, it is great to have a focus and to have an awareness day where everyone becomes united in the message they share. Cerebral Palsy affects everyone differently, yet our shared experiences and similarities can help the general public to understand the disability in a clearer sense. Over the years I have enjoyed raising awareness and it is something I do with a great deal of pride, but what does Cerebral Palsy awareness day mean to me?

woman smiling at camera

There is more that can be learnt
Despite having Cerebral Palsy my whole life, I am still learning. I am learning about how my body works and how to achieve with the limitations that I have. I am even learning how it changes as I get older and how to manage some new hurdles that previously were not an issue. Cerebral Palsy will always be there but learning how best to manage it can be an ongoing process. On the other hand, I have the pleasure of learning from others. We get to share our top tips of life and learn the differences and similarities between us all.
 
It’s okay to be different
Often there is a fine line between showing how similar disabled people can be to the general public and getting them to understand the difficulties that we face. You can get so wrapped up with life and forget to acknowledge the fact that we will have faced extra challenges in comparison to able- bodied people. Cerebral Palsy awareness day means I can say “yeah, I have Cerebral Palsy!”, and wholeheartedly be proud of that difference. I feel that awareness days give us the opportunity to be honest and open about the challenges we face and to know that it’s completely okay to be different.

woman smiling to camera

I can see just how far I have come
I’ve learnt to tie shoe laces at the grand age of 16, could tell the time (ish) at 17 and went on a train by myself at the age of 19. I am still making progress. I make a cup of tea with one hand and have to count on my fingers to figure out timetables. My path in life is far from conventional but steps are being taken to become more independent or to manage aspects of my Cerebral Palsy. Looking at pictures of a premature baby who is surrounded by wires and medical intervention as a result of being 8 weeks early is scary. Knowing that you died several times and were fighting for survival is scary. However, just look at how far you have come! We’re poorly babies who beat the odds and are succeeding at life regardless of that. Be proud of that.
 
Knowing I am not alone
I know there is a support network out there. I know that so many people have Cerebral Palsy who can relate to my experiences and would be there to offer support and guidance. However, daily life has a habit of getting in the way. It can be so easy to be going through life and find things tough, but not know where to turn. Feeling alone when you have a disability is completely understandable considering our daily struggles. However, this doesn’t need to be the case, get on social media, read blogs or turn to the online community. Awareness days can be a chance to be reminded of that support networks are available- no one with CP is alone.

Tell us about your experience of Cerebral Palsy

Scope

Comments

  • minifruitbat
    minifruitbat Member Posts: 6 Listener
    My best fry best friend Lisa had Celabral Palsy;we were close friends for 31 years after meeting in hospital. I am disabled through chronic illnesses and have a problem walking due to my advanced Arthritis and Crohn’s disease. I saw Lisa go through tough days,overcome many hurdles and fly high too. Sadly Cancer took her from us a few months ago and I miss her so much I feel that I could burst. A misunderstanding stopped me going to her funeral, so I am planning to grieve independently and at my church.Another friends comment that ‘ppl with CP die early’made us clash as I reminded her that CP wasn’t a death sentence, but her words stung all the same. 😢 I hope awareness days help dispel ignorance and discrimination. 
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,799 Disability Gamechanger
    I'm so sorry for your loss @minifruitbat, and thank you for sharing this with us. Awareness days are so important!
  • WilliamWalker
    WilliamWalker Member Posts: 9 Listener
    I find my life has been everybody knows the price of me, but not the value of me. So that makes me feel sad. People just see that I have cerebral palsy, and not the other valuable things I have. Like I am really smart, I was in all the lower classes at school, it turns out that I am actually too smart so people mistook my lack of interest and cerebral palsy for me not being very bright. I was even put on a register for people with learn difficulties and told I had dyslexia. I left school believing I was like 80 IQ, couldn't do anything and wouldn't get a job. Then 8 years later I started going to therapy and I am actually very smart. So I emotionally find it hard to process that because if I am this smart, why didn't anyone notice it. Its sad and makes me angry a lot. All people saw was my disability. 
  • minifruitbat
    minifruitbat Member Posts: 6 Listener
    Couldn’t agree more. Ppl always make assumptions. Teachers thought my son was an injecting drug addict at school 🏫 He has eczema on his arms, they thought it was ‘track marks!! ‘ 
  • Richard_Scope
    Richard_Scope Posts: 2,925

    Scope community team

    Hi @WilliamWalker and @minifruitbat
    I'm also very familiar with how people's assumptions can have a negative effect on the course of life. Similarly to William, it was assumed that I would not attend higher education like my peers and I was excluded from the special classes held to complete the UCAS application. 
    This is part of the reason why World CP Day is so important, in terms of raising awareness of what people with Cerebral Palsy can and do achieve.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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