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!

Cerebral Palsy Scotland volunteer Bernie shines a spotlight on World Cerebral Palsy Day, explaining what it is and how you can get involved.

The time has come around again where the world prepares to celebrate Cerebral Palsy. In my latest blog, I will explain why this day is important, tell you what this year’s theme is about and mention how I plan to mark the day.

As many people will already know, World Cerebral Palsy Day happens on the 6th of October, every year. It is a day for raising awareness and getting information out there about the disability in support of the 17 million people who have Cerebral Palsy around the world. There are many different ways to get involved and show that you support World CP Day.

In recent years, we have seen people taking to social media and sharing their CP experience. World CP Day is a brilliant opportunity to get information out to people about what the disability means and more importantly that CP doesn’t stop anyone from achieving wonderful things in life.

Millions of Reasons

This year’s theme from the organisers of World CP Day is called ‘Millions Of Reasons’ which aims to encourage people to share their own reason for marking World CP Day as well as telling their CP story.

Here are ways that you can share your reason:

• Share your reason for marking World CP Day on social media to reach out to your followers. Tag @worldcpday and use the hashtags #MillionsOfReasons and #WorldCerebralPalsyDay. Please tag us too – we are @CpScotland on Twitter, @Cerebralpalsyscotland on Facebook and @cpscotland on Instagram – and we can share your post to our followers!
• Put your reason on the map by going to the ‘Word Cerebral Palsy Day’ website and adding why you are marking the day
• Wear something green for the day and if you are asked why by someone, tell them the reason

This is such an important date in the calendar for everyone who either lives with CP or supports someone who has CP; it is a good chance to highlight what support services are available too.

Personally, this annual day is always top of my list – I feel very strongly about World CP Day as I live with the disability. In support of the day, I’m hoping to share my reason by making a video using my speech device while getting the point across that living with CP can be challenging but it doesn’t stop me from doing what I set out to do. The video will be posted on my own social media accounts so look out for it on October 6th.

Get involved!

We at Cerebral Palsy Scotland would like to know what everyone is planning on doing to celebrate World CP Day and what your reason is for supporting the day.

Let us know by getting in touch via our social media channels and tagging us in your World CP Day posts – we are @CpScotland on Twitter, @Cerebralpalsyscotland on Facebook and @cpscotland on Instagram.

Bring on World Cerebral Palsy Day on October 6th and share Millions Of Reasons in support of CP!