World Cerebral Palsy Day – Sharing Personal Experiences
World Cerebral Palsy Day

There are currently 17 million people in the world who have cerebral palsy so to help raise awareness for World Cerebral Palsy Day we’ve asked our readers to share their experiences.

We asked the same three questions to show the variety of answers and ways cerebral palsy affects people.

Marlena, Gold Coast Australia

World Cerebral Palsy Day

Tell us a bit about your cerebral palsy and tell us how it affects you?

My cerebral palsy means that everyday I need to get around in an electric wheelchair and need help with all aspects of my physical care. Eating , drinking , personal care , etc. pretty much all that stuff. I am also non verbal so I need an iPad when alone and ideally someone that is familiar with my communication and low tech board. My low tech board is my quickest way to chat so having someone familiar with this allows me to converse in a verbal world and get on with the day outside my disability.

We’d love to hear about a travel experience you’ve had and what made it a good one.

I have been blessed to have travelled extensively both in Australia and around the world. I now have ticket off 34 countries some easy and some not so much. What I enjoy about travelling is meeting new people and having new experiences. Every new place is an opportunity to learn. For me the unknown is fun. At home I like to challenge Access issues and have been very vocal on many. Overseas though I take it all with a grain of salt and literally roll with it unless the situation unnecessarily endangers me.

Tell us one thing you wish people would understand about your cerebral palsy.

People with disabilities are still people that have to experience life. To be part of these experiences we ALL have to take a certain amount of risks. I am blessed I have been given the breathing space to take these risks as well as the support to do some insane things. The essence of travelling for me is about balancing risks vs reward. To be 100% safe we have to stay at home or in our comfort zone but that is boring as hell. Having a certain amount of risks in our lives is healthy. Travelling and getting to immerse in new cultures/ environments ensure safety as well. Life is good on the Edge it is where the cool S%^& happens

World Cerebral Palsy Day

Helen – Perth, Australia

Tell us a bit about your daughter’s cerebral palsy and tell us how it affects her?

Emily is 14 and has spastic cerebral palsy which affects her legs and right arm and right hand. She cannot sit unassisted, weight bear to stand or walk. She relies on a wheelchair for mobility and has a powered chair (for general day to day use), a manual wheelchair (for travel and if we know or think somewhere we are going will not be accessible with her power chair) and a Hippocampe all terrain/beach wheelchair. Emily also has some dystonia and autistic traits.

World Cerebral Palsy Day

We’d love to hear about a travel experience you’ve had and what made it a good one.

We are currently on holiday in Italy and have just been in Venice. Despite people telling me that Venice is not wheelchair friendly, I was delighted that my research paid off and we enjoyed a fabulous day exploring starting with a gondola ride (thanks to Gondalas4all) we then took a water bus to Murano (glass blowing) and on to Burano (lace making and gorgeous colourful houses). Returned on the water bus at sunset to Piazza San Marco for gelato then back to our accommodation. Had to cross 3 bridges which were all facilitated by ramps. What a wonderful experience!!

Tell us one thing you wish people would understand about your daughter and her cerebral palsy.

Just because our experience will be different (due to mobility and physical limitations) that doesn’t mean it won’t be amazing.

Anne Marie – Scotland

Tell us a bit about your son’s cerebral palsy and tell us how it affects him?

My son has athetoid cerebral palsy and he has very limited speech ie yes/no mum/dad a few others. He relies totally on another as he cannot weight bare or feed himself. He has an awesome sense of humour.

World Cerebral Palsy DayWe’d love to hear about a travel experience you’ve had and what made it a good one.

We go abroad yearly and in fact are just back from Lanzarote. We normally holiday with my oldest son, daughter-in-law and my two grandsons. We also have a static caravan in Helensburgh. All of our holidays have been great because we have been with family.

Tell us one thing you wish people would understand about your son and his cerebral palsy.

I wish my son was given the chance to try and answer for himself. Friends/family wait for him to try and vocalise but others don’t seem to. I would dearly love people to see my son, not his disability.

Andrew – Sydney Australia

World Cerebral Palsy Day

Tell us a bit about your cerebral palsy and tell us how it affects you?

My name is Andrew Hewitt. I am a 48 year old adult with spastic quad cerebral palsy. I am a wheelchair user as it affects all 4 limbs. I travel a bit as a musician and it can get challenging. Because of my cerebral palsy, once I am on the plane I am stuck in my seat for the duration of the flight unless it’s an extreme “need to go” emergency, then I use an aisle chair.

We’d love to hear about a travel experience you’ve had and what made it a good one.

I have done a few trips to the USA now and it gets easier every time we go. We had a hotel recommended in Anaheim by Have Wheelchair Will Travel and have stayed there 3 times now, actually we are booked to stay there again in January. The wheelchair rooms have amazing access, are spacious and the bathroom has rails everywhere. Only problem I have is the height of the king bed. My wife and I are still big kids at heart, and absolutely love Disneyland and Universal Studios. Rides at both parks are either wheelchair accessible or require a quick and easy transfer.

Tell us one thing you wish people would understand about your cerebral palsy

As an adult guy with long hair and tatts, I often get stares, yep still, or someone coming up and saying “What happened to you?” I don’t mind telling people, but it does get a bit much. We have had airport security question why I can’t get out of my wheelchair, or how difficult it is to take my shoes off, also airline staff don’t understand why I ask for a window seat. It’s simply because if someone needs to get up and go to the loo they don’t have to climb over me to get out.

Cerebral Palsy Facts

In Australia there are approximately 34,000 people with cerebral palsy. Worldwide, the incidence of cerebral palsy is 1 in 500 births.

The Cerebral Palsy Alliance website defines cerebral palsy as “an umbrella term that refers to a group of disorders affecting a person’s ability to move. It is due to damage to the developing brain either during pregnancy or shortly after birth.

Cerebral palsy affects people in different ways and can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. Although cerebral palsy is a permanent life-long condition, some of these signs of cerebral palsy can improve or worsen over time.

People who have cerebral palsy may also have visual, learning, hearing, speech, epilepsy and intellectual impairments.”

Please share to help raise awareness for World Cerebral Palsy Day.

 

 

 

 

About Author

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Julie Jones
Julie Jones is the creator of Have Wheelchair Will Travel, freelance writer and mother to Braeden who lives with cerebral palsy and her teenage daughter Amelia.

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