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Explaining Cerebral Palsy to Others

Richard_Scope
Richard_Scope Posts: 3,174 Scope online community team
edited March 2021 in Cerebral palsy

Being able to talk about your condition is one of the best ways in which you can raise awareness.

Our @Chloe_Scope shares her thoughts.

Explaining Cerebral Palsy to others 

It can often be tricky to know how or when to disclose your disability. This could be describing it to friends at school or a potential employer when you are applying for a job. How on earth do you get it right and how do you say it in a way that people can understand? For Cerebral Palsy Awareness Month, I’ve tried to write down how I would approach these situations and what top tips other people in the CP community would give. 


[Image of a woman walking in a field with a walking stick]

How would I describe my Cerebral Palsy? 

Something that instantly stood out is that people alter the way they describe their CP depending on the situation or person. I personally know I have a few set ways I choose to describe it, almost like a little script! When looking back on old speeches I have written, the way I choose to summarise it seems to be very similar. For example: 

 “It wasn’t until the age of 7 that I was diagnosed with mild Cerebral Palsy, affecting my legs and left arm. Cerebral Palsy is a group of lifelong conditions that affect movement and co-ordination, caused by brain damage that occurs before, during or soon after birth; for me it has meant muscle weakness, my muscles being too tight and lack of coordination and balance, meaning I fall over a lot more than most.  

Although my speech is unaffected, which can sometimes be the case with Cerebral Palsy, it has resulted in chronic pain and a visual impairment. Ever since being diagnosed at the age of 7, I have worn splints on my legs on and off which have helped me walk, as well as using a stick and wheelchair for the past 4 years. Although Cerebral Palsy is a fixed condition it is very common to deteriorate as a teenager and the effect it has on our muscles can change daily.” 


[Image looking down on to a hand holding a walking stick]

Now that is quite medicalised and not necessarily what I would say in an everyday situation. Could you imagine saying that to everyone you meet?! I don’t think I would get the chance to talk about anything else! I know from experience, if your CP is mild then it can be harder if people just assume you are non-disabled. 

 Yet explaining your CP can change for various reasons: 

·       changes with age 

·       depends on the situation 

·       why the person is asking 

·       explaining it to children 

·       using an analogy 

 You can read more here:  

 

Do you have any hints at how to describe your CP to others? 

Scope
Specialist Information Officer and Cerebral Palsy Programme Lead

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Comments

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Thank you @Richard_Scope!

    I hope everyone is doing okay. If you have any questions about explaining CP I'd be happy to help!  <3
    Scope

  • WestHam06
    WestHam06 Member, Scope Volunteer Posts: 1,396 Pioneering
    Hi @Richard_Scope, @Chloe_Scope
                                                                  Hope you are both well, thank you so much for sharing this, it is really informative. As a teenager, I really struggled emotionally with my CP, however I was asked by my school to give a presentation to a younger year group, explaining my CP and what it is like for me to live with CP. I was very nervous but I did it and it seemed to go down well. I will always remember this student who I had seen around the school who always seemed to avoid me, coming up to me and thanking me for the presentation. From that day forward, whenever I saw them, they always spoke to me. It is truly amazing how powerful experiences whereby there is an opportunity to educate can have. Thank you. 
  • Tori_Scope
    Tori_Scope Posts: 9,505 Scope online community team
    That's awesome @WestHam06, and well done for having the confidence to do a presentation! I definitely think that education plays a massive part in creating more inclusive and accepting communities :) 
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  • WestHam06
    WestHam06 Member, Scope Volunteer Posts: 1,396 Pioneering
    Couldn't agree with you more @Tori_Scope and I think part of this education needs to come from real lived experience. I hope to be able to develop this idea and have been fortunate to have been able to connect with like-minded people. Thank you. 
  • Ben_brown12
    Ben_brown12 Member Posts: 1 Listener
    Hi guys just wanted to say how useful this post was, thank you so much you’re helping so many people myself included
  • Ross_Scope
    Ross_Scope Posts: 7,398 Scope online community team
    Hi guys just wanted to say how useful this post was, thank you so much you’re helping so many people myself included
    Glad you found it useful :) 
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