You’ve got to be Ballsy: Stories from the Front Line of Cerebral Palsy is a film that investigates the experiences of young people with cerebral palsy living in 2018.

The film was produced by Birds of Paradise (BOP), the only professional, disability-led theatre company in Scotland.

Presented by Jack Hunter, a young comedian with cerebral palsy, the film follows Jack as he speaks with a number of young people about the positive and negative ways that cerebral palsy has impacted on their lives.

BOP knows from its own research (Barriers) and from conversations with Cerebral Palsy Scotland that young disabled people and young people with cerebral palsy do not experience equality of access to the arts as audiences, participants or developing artists.  Neither do they have the opportunity to have time and space to explore issues of identity and perceptions around cerebral palsy outside service specific environments. This film helps detail some of the ways this actually manifests for people.

You’ve got to be Ballsy was funded by RS Macdonald Trust and supported by National Theatre of Scotland and Cerebral Palsy Scotland. It was made by Francisco M. Mallo.

Cerebral Palsy Scotland volunteer Bernie Hunter interviews Eilidh Elizabeth Molly McGrath about society’s attitudes to disability and her passion for dance.

In recent weeks, I interviewed a young lady called Eilidh. Our paths have crossed as we both are part of a music and dance organisation – Paragon Music. I was really interested to find out more about Eilidh, her disability and challenges.

Eilidh has cerebral palsy which affects her mobility and speech. She has a number of different ways to communicate with people including using her own voice to say a couple of words, iPad technology, a laminated sheet with letters on it to enable her to spell out the word using her eyes, BSL and homemade sign language that her and her mum created. Eilidh uses a manual wheelchair to get about, she is able to self-propel for a short distance but as her right hand is slightly weaker than the left, she requires assistance to get about when outside.

I wanted to hear Eilidh’s thoughts on how society acts around disability- she explains that she feels that a lot of strangers still talk to her like she is a 2-year-old which is totally wrong. On the plus side, Eilidh does notice people speaking to her in a normal way and that is a big win. Another point that Eilidh made is that she finds young children staring at her and wants parents/guardians to seriously educate their kids about how to be when they see someone with a disability, and social skills come into this too.

As I said at the start of this blog, Eilidh attends a music and dance organisation. Paragon aims to make the arts accessible for everyone. 6 years ago, Eilidh came across the organisation- it was the Paragon M3 week at the Tramway, in Glasgow. The summer programme aims to reach out to young people who have additional support needs for the opportunity to learn music and dance. As soon as Eilidh got started at M3, she caught the dance bug and fell in love with the arts.

Having discovered a real passion for dance, Eilidh wanted to study Higher Dance at school. In 2019, she contacted the SQA (Scottish Qualifications Authority) to ask how she could do the course as she has cerebral palsy. They requested Eilidh to send in a video of her dancing and that is exactly what was done. Unfairly, from the video alone the SQA decided that Eilidh would never pass the dance course and the reason was that they couldn’t mark her posture, musically or focus. Eilidh was really upset about this, the fact that they never even gave her the chance to try the course.

Eilidh is an intelligent woman that doesn’t let her disability hold her back in life. She has many skills including speaking in different languages and enjoys dancing with Paragon. Dance was the main activity that Eilidh missed during the Covid-19 lockdown, it was a long 18 months but thankfully the M3 programme was able to continue online. But this way of working came with challenges too. Eilidh had to work with one of the Paragon mentors so they could assist her to communicate, as using an iPad wasn’t always possible when Eilidh was dancing.

Thank you to Eilidh for participating in this blog, I will leave you with this quote from the lady herself – “I may not go places on foot but that doesn’t mean I don’t go places!”

Andy Tomlinson writes for us about the physical and emotional journey he went on that led to him completing the Berlin marathon earlier this month.

It took me 38 years to get to the finish line of the Berlin. A decade ago it was a journey that was impossible to imagine. Maybe a prisoner of my own thoughts and social anxiety I found solace in my own company and a games console; a sterile environment where I had control of what was allowed in my world.

Maybe in some ways I was hiding from myself. A boy divided, not sure of who he is. A boy – bearing in mind I’m 28 at this time – held captive by his cerebral palsy.

4:18:45 I crossed the finish line in Berlin. I was hoping for a sub-four but, a combination of a slight injury three weeks before the marathon, the outrageous heat and humidity, and possibly the fact I’ve not quite worked out a strategy to both hold and intake the energy I require to take into account my increased muscle tone and my unique running gait. Two years previously I would have been happy with five hours, maybe 5:30, but as it turns out I am quite competitive with myself.

A far cry from 10 years ago when I had a bilateral fracture of my femoral hip. Lucky for me the fracture was on my left side affected by hemiplegic cerebral palsy, which in this case also meant that my brain did not receive any pain signals from my fracture. I lay on the street not being able to move, thinking I had a dead leg.

I don’t know why but from the hospital bed came up with idea of climbing Kilimanjaro, then the Great Wall, then from that I found myself completing a marathon in the purple vest of Bella Road Runners.

Fast forward ten years. I’m exhausted, sitting on the curb head bowed looking down the road, looking at fellow runners stumbling over the finish line being sick, and sitting in a heap. Only a few hours later, they’re walking around Berlin and its seemingly infinite number of stairs, grinning ear to ear showing off their medals, a token of their own struggles and sacrifice. We ran as individuals but also together, feeding off each other’s stories.

Why do I put my body through so much? Kilimanjaro was a two peak 12 day hike, the marathon was three months training where accumulation of fatigue builds and builds in the hope you can run 26.2 miles under four hours – and I’m disabled.

One reason is maybe my relationship with CP? I don’t know, once upon a time I thought it was something to hide from, then to fight against, but as I’ve got older I think I’ve went through a process of reconciliation. I learn more about myself with every km I hike, run or shuffle.

It just so happens that sport or physical activity is the mediator of my sometimes strained relationship with myself, a disabled person with cerebral palsy. Maybe that’s why Berlin was the perfect place to complete my first marathon. A city once divided from itself by a wall of cold concrete. The Berlin Marathon crosses where once the wall physically stood on multiple occasions. Like acting out an elaborate metaphor, the reason I ran Berlin marathon was to bring down the walls within my mind, like the journey Bob Geldolf undertook in the Pink Floyd movie “The Wall”.

Often maybe I’m detached from how I feel, paralysed by my ability to see every “What if…” scenario and have been guilty of being like The Watcher from Marvel comics, and thus world passes me by.

That is when I’m not participating in sport. Everyone has a unique language, mine has its roots in endurance. I like the idea of planning a four hour race or two week hike – it’s an endeavour both me as a person, and more so a person with CP, cherishes. My muscle tone relaxes, I can hear the crowds cheering and the jazz band playing as I navigate Berlin, I can see the Bundestag, the boats taking tourists a ride through Berlin’s waterways. I can marvel at the Berlin Dome and full 355 feet of the radio tower in Alexanderplatz. Running alongside people from all over the world, Italy, Mexico and Peru, connected by 26.2 miles of flat road, sun and my inevitable sunburn. I connect with people along a journey that’s shared by 20,000 to 40,000 whether running or lining the streets. After a year of pandemic induced isolation. We experience the joy of shared exuberance, of heading towards the finish line together.

As I run both my cerebral palsy and I become one and the same. Reconciled shuffling the same journey, marathon is like a microcosm of life – everyone is heading in the same direction even amongst our various differing stories.

However the most important reason why I’m a marathon runner with cerebral palsy and indeed like trekking, is that it highlights the importance of community in increasing accessibility. People build walls and take down barriers. I’m a CP runner so I can run with people on their own journey. Well for 26.2 miles at least.

In this blog, Jack explains how the barriers and prejudice he faced at school and college led him to get involved in the Princes Trust and pursue a career in welding and salvaged metal art. He also reflects on his personal reasons for supporting World Cerebral Palsy Day on 6 October.

I’m Jack and I’m 25 from Clydebank. I work as a metal artist/sculptor, who creates art from materials such as used car parts, horseshoes and mild steel. I am also the business owner of Salvaged Metal Art.

When I was about 8 years old I helped my uncle weld hinges onto an old gate post, not thinking this would make an impact on my future. I decided to concentrated on learning about and eventually working on cars for the next number of years as this is what I wanted to do as a career.

My experience at both primary and secondary school was not a positive experience. I was bullied throughout my time there due to my cerebral palsy. I couldn’t wait to finish school and move on to college to study mechanics. I had hoped college would be a much better experience but I was wrong. I was bullied daily by fellow students. A month or so before the course was due to end two of the lectures spoke with me to tell me that I couldn’t get onto the next level of the mechanics course. I expressed my interest in the welding course but this too was shot down as they felt I would find the course too difficult due to my cerebral palsy. Thankfully my uncle, who has been a welder for 40+ years, was willing to take his time to teach me no matter how long it would take.

That year my mum and dad bought me a small mig welder to practice and this is where I discovered my passion for welding. My first welding project was a welding cart, which I still have to this day. Once I had got the hang of welding I started to create items from scrap metal. It was then I had the idea  of combining my love for cars and welding. After some brainstorming I decided to use used car parts to create unique pieces of art.

In 2017 I joined a community group called Street League, who’s main focus was to help young people in the community find employment. It was here I was encouraged to contact Princes Trust with my idea of turning my art work into a business. I met new people and was given support every step of the way which really helped in building my confidence back up. With their support and encouragement I decided pursue my dream and this is where my journey with the Princes Trust began.

I left Street League and focused on the Princes Trust which lead me to becoming a young ambassador in 2018. In 2019 I was invited to meet my inspiration, artist/blacksmith Kev Paxton. During our meeting Kev asked me about my journey with the Princes Trust and what my goals were. I told him I would be over the moon to attain the Scotland’s Young Achiever Award when he informed that I had already. I couldn’t believe it and was speechless. It was the highlight of my time with The Princes Trust.

I am still involved with the Princes Trust and would not be in the position that I am in today had it not been for them.

My personal reason for supporting World Cerebral Palsy Day is to make people aware that just because you have cerebral palsy this should not stand in your way of following your dreams and to never give up through tough times. I feel more needs to be done about the bullying that people suffer on a daily basis for having a disability, it affects all aspects of your life.

We need to raise more awareness around different disabilities and how they affect people differently. My cerebral palsy affects me on a daily basis as it restricts me on some things I would like to do by myself. I often suffer from back pain and stiffness due to my cerebral palsy but I always try to find a way that works for me.

This is what has led me to want to be a motivational speaker, to encourage people to follow their dreams and knock down the barriers that I have faced.

Cerebral Palsy Scotland volunteer Marion shares her personal reasons for supporting World Cerebral Palsy Day on 6 October. 

Hello everyone. As we are coming up to World Cerebral Palsy Day 2021, I thought I would write a blog about why I think World CP Day is important for me.

This year, World Cerebral Palsy Day’s theme is “Millions of Reasons”, so what are my reasons to celebrate the day?

To raise awareness

It is very important for me to feel like cerebral palsy is recognised world-wide as a disability which affects so many people in different ways.  For me, especially lately, when I feel lonely, I often wonder if there is enough knowledge about cerebral palsy out there.

It will also be helpful for me to link up with other people with cerebral palsy at the Cerebral Palsy Scotland online conference, especially this year due to the pandemic and the lockdowns, as we have not been meeting up with many people with cerebral palsy to share ideas.

To drive a sense of community, and to reflect

World CP Day also makes you feel you are not alone dealing with the everyday challenges of having cerebral palsy. For me, this will be the most important issue of the day.

It’s also a chance for us all to think about our bodies, and how the last year affected you physically, due to not getting enough physio or even activities like swimming or going to the gym.

To celebrate achievements

World CP Day is a time to remember that, even with cerebral palsy, I have done so much. For example, working as a volunteer advocacy worker, volunteering at Cerebral Palsy Scotland, and being employed as a blogger. I’m also a wheelchair dancer and have attended wheelchair dance competitions in Blackpool. Plus, I was even brave enough to go on a zipwire at Calvert Trust, Kielder! These activities must be celebrated.

World CP Day is also a time to celebrate how far Cerebral Palsy Scotland has come over the years in developing their Adult Services, and I don’t just mean physio, speech and language therapy and OT, but all the other services they have provided for me, including help with mental health. Throughout the lockdown period they offered a weekly zoom session where you could talk to other people about relevant topics. And for people with communication aids, there is an AAC group where I had so much fun using my talker, especially one Christmas time, with the help of the speech therapist as we made up a song using our talkers.

What are your reasons for supporting World CP Day?

I  hope you will all be able to celebrate World Cerebral Palsy Day in your own way and I’m sure you will have many personal reasons to celebrate the day. HAPPY WORLD CP DAY WHEN IT COMES!