Living with cerebral palsy

Story By: Jen Jen

Having to cope with a debilitating illness can make you feel like an outsider. Read how one girl discovered the power of being different.

two girls with laptop next to uni
If I didn't have a disability, I don't think I would have developed the resilience I now have.
Growing up with a physical disability is a struggle- not only are your different from everyone else, but you have to deal with people's perceptions of you and learn to stand up for yourself, which is definitely NOT easy. But it does get easier with practice and someone will always be able to help you get what you need (although sometimes you have to fight hard!)

I didn't realise I was different till I was 10, when everything was suddenly focused on what I couldn't do, rather than what I could do! When you're young and are different to others for whatever reason, people's comments can really hurt, but as you get older, you learn that if they can't accept you for who you are, they aren't worth your time! It took me years to learn that. Even now, I sometimes need reminding, which is OK as I'm not perfect. Another important thing to learn is that if someone else isn't proud of your achievements that does not mean that you don't have to be!

People just don't know how to deal

In order to help me get around and do things like everyone else, I had to wear Ankle Foot Orthosis (AFO's) which are very like prosthetics, except for a few important details: they are not fake legs (although many people I know think they are!), they hold your foot in the correct position, but bend at the ankle, which allows you to walk heel to toe instead of toe to heel and have Velcro straps to hold them on your feet. Some people have them on both feet like I do, but others have them on 1 foot only. I used to have to wear boys black sports shoes, which were horrible and made things worse. I used to call them The Big Black Boats to make people relax around me.

I've learnt to wear jeans or a long skirt when meeting new people so they treat me the same as everyone else and after they've known me a while, I tell them I have Cerebral Palsy (CP). You can guess what happens next- Yep, they run in the opposite direction! It's not catching, which is a very common myth. You are born with it. It's caused by severe bleeding to the brain and can't be diagnosed with a blood test. It's diagnosed by watching a child's development and if they don't reach the milestones for their age, then the child is investigated to see if they might have CP.

People with permanent disabilities are treated very differently to people who have a temporary disability, which I found very hard to accept when I was younger. After talking to friends, I've realised that people are scared of what they can't see or don't understand (for me, it was a case of people not understanding). I see people in plaster everywhere and watch people talk to them normally as though they have a brain, whereas I see others in a wheelchair and they have trouble communicating clearly (like some of my friends) and people automatically treat them as though they have an intellectual disability, which is often not true.

My advice

If you interact with someone who has a disability, (permanent or not), treat them as you would anyone else. If they need help, they'll ask. Talk to the person, NOT the person accompanying them! Most people with a disability will be able to communicate with no problems, but others need to use communication boarsds. For some, their speech may be uneven. If understanding the speech is difficult, repeat the words in your head, and then answer the person normally. If that doesn't work, ask them to repeat. We are just like you. We have the same hopes, dreams, worries and interests as everyone else. We are a person with a disability, not a disabled person!

If I had the opportunity to wave a magic wand and be like everyone else, I wouldn't. If I didn't have a disability, I don't think I would have developed the resilience I now have. Saying that, it definitely hasn't been easy. I can remember countless times growing up when I would have done anything to be the same as everyone else, but that's in the past. I have a disability and I'm proud of it!! If you have a disability, it's not the end of the world, you can still do everything you want to do- it might just take you a while to get there and you may have to down a different path to other, but that's OK! Be brave. Live, Love, Learn.

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Last reviewed: 08 July, 2015
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