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My experience of cerebral palsy and clubfoot – Christina MacLean

This is my second year taking part in Cerebral Palsy Awareness month. Reflecting on my experiences from last year, I have noticed a shift in how people perceive and understand the challenges faced by individuals with Cerebral Palsy and conditions like talipes equinovarus (also known as clubfoot). I was diagnosed with congenital Cerebral Palsy and born with club foot, both of which have had a major impact on my life.

From a young age, I have worn orthotics to support my feet and help with walking, my left foot is a size 6 and my right foot a size 4. These have been an essential part of my everyday life, providing stability and alignment needed to move more easily. Over time, wearing orthotics became a routine, but it wasn’t without its challenges. They were uncomfortable at times and often drew attention from others. People would sometimes stare at my feet or make negative comments. I have been called a “freak”, “disgusting” and “weird”.

Shopping for shoes has always been one of my worst nightmares, especially since I need to buy two pairs to accommodate both feet. When trying on shoes, I have often encountered employees who act surprised and will even call on other employees to share their disbelief. This lack of understanding makes the experience feel even more uncomfortable. At times, I cannot help but wonder if I am being judged or treated differently for something that’s entirely beyond my control.

Over the years, though, I have learned to handle these moments with more confidence. While I still feel the sting of negative comments, I have come to realise that their lack of understanding does not define me. As I continue to raise awareness, I hope that these experiences become less common, and people begin to approach these situations with more understanding and empathy. One day, I would love for shoe shops to be more inclusive, where I could buy both sizes I need as a pair – making the shopping experience easier and more comfortable for everyone.

Tags: Adaptive clothing, Cerebral Palsy, Disabled People, Mobility, Physical Disabilities

Breaking down barriers and starting my own business

I’m Jack,  I’m 29 from Clydebank. I work as a metal artist/sculptor who creates art from car parts, horseshoes and mild steel and I’m the business owner of Salvaged Metal Art.

When I was about eight years old I helped my uncle weld hinges onto an old gate post, not thinking this would make an impact on my future. I just concentrated working on and learning about 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 as I was bullied throughout my time there due to my cerebral palsy. 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 sore backs and stiffness due to my cerebral palsy.

My experience at college wasn’t positive either as I was bullied in college as well. When I got into the mechanics course, during the year long course I was bullied on a daily basis. A month or so before the course was due to end two of the lecturers spoke to me to tell me that I couldn’t get onto the next level of the mechanics course. This is when I told them I could try welding. They told me this would be too hard for me as well, but they didn’t know that 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 learn with and this is where I started to get a passion for welding. My first welding project was a welding cart, which I still have to this day. After a number of times practicing my welding I said to my uncle “how about combining car parts and welding them to create unique pieces of art” and this is where my Prince’s Trust journey began.

In 2017 I read about a group called Street League who help people find jobs, so I joined and this is how I contacted the Prince’s Trust with my idea about setting up my business. I was given support and met new people which gave my confidence a massive boost and encouraged me to start my own business.

I continued with the Prince’s Trust which led me to me becoming a young ambassador in 2018 – that was the same year that I got involved with Improving Lives. When I attended the Improving Lives open day in 2018 I met the Clydesider. I have done a few pieces for their magazine in the past three years and this has also helped me with my confidence .

In 2019 I was awarded the Prince’s Trust Scotland’s Young Achiever of the Year for the work and progress that I had made. This was the highlight of my year as I got to meet my inspiration, artist/blacksmith Kev Paxton who informed me that I had won the award .

During lockdown I continued to grow my business by gaining local customers and selling garden pieces such as firepits. I also got involved with Epilepsy Scotland, donating pieces for their online Christmas craft fair. Since then I’ve continued to support them by doing a sponsored 60k walk over 6 weeks and a 5k during Christmas. I’ve done this since 2020 and it’s made me feel a lot better both physically and mentally.

Fast forward to 2022, and I won the ‘Princes Trust Young Achiever of the Year’ award at the Pride of Scotland Awards held in Edinburgh. I also did two collaborations with Kev Paxton, who continues to mentor me to this day. Both collaborations got auctioned off for the Prince’s Trust at their biggest fundraising event called ‘Lunch with an Old Bag’.

In 2023 I expanded my range of pieces which led to me supplying a company in south Queensferry called Craigies Farm Shop and Deli, my horseshoe candleholders for their gift shop. I continue to supply these and they have now extended their range of my pieces.

This year I’m aiming to grow my business even more by getting my work into Arnold Clark dealerships (who are one of my suppliers). I also want to continue with my charity work and continue to break down barriers by creating new pieces of art to show people that cerebral palsy isn’t a disability, it’s just a different ability.

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

I feel more needs to be taught about disabilities and more disabled role models should be speaking out. 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.

What I wish I knew about cerebral palsy when I was younger – Melissa Cassidy

As part of Cerebral Palsy Awareness Month, Melissa shares what she wishes she knew about cerebral palsy when she was younger. 

I have had Cerebral Palsy for nineteen years (my entire life) despite this I feel like I am always learning something new about the nature of my condition. There are so many things I wish I’d known when I was a child with CP that would’ve helped me understand how to navigate the world with positivity rather than constantly feeling held back by barriers.

I spent so much time wishing I could ‘fix’ the way I moved, spoke, or struggled with certain tasks. I saw tasks as either something I could or couldn’t do rather than wanting to adapt them. I wish I could go back and tell myself that CP isn’t something to be cured or conquered—it’s just a different way of existing in the world. It’s okay to need accommodations, to move at your own pace, and to define success on your own terms.

There were (and still are) times I pushed myself too hard, trying to ‘prove’ I could do everything on my own. But as a university student who still relies on her parents I know that independence doesn’t mean doing everything by yourself—it means knowing when to ask for support. For example, I spent so long telling my mother that I didn’t want a personal assistant because I wanted to be independent but then once I got my PA I realised how much more freedom I had to go places with her rather than always needing my parents with me.

Frustration is part of having CP. There’s been countless times I’ve felt like screaming at my own body, resenting all the extra effort everything takes and how people treat me differently. When I was little I had a very “why me?” attitude and unsurprisingly that didn’t get me very far. It’s probably only now I’m an adult that I’ve fully accepted that this is just how my life is and most of my self-acceptance has come from how much I’ve been able to get out of writing about my disability. Without cerebral palsy, I don’t think I would’ve been ‘a writer’ because when you have a clear voice I don’t think you understand the power of being instantly understood through writing. I like to remind myself of this when the inevitable frustration creeps in.

A huge thing that I wish I’d realised at secondary school is that pushing through exhaustion won’t make you more ‘normal’ or ‘productive’. Nobody is going to give you a gold medal for pretending you’re fine when you’re exhausted. CP means your body works harder than most people’s, and that means I needed more rest. I was so determined not to be on a part-time timetable and school because I thought it would mean I wasn’t “as good” as everyone else but looking back, if I hadn’t cut down the amount of subjects I did at school I wouldn’t have had the energy to get the grades I needed to get into university.

Finally, I wish I’d been told from the get-go that the world isn’t built for disabled people. Struggling to make friends and access places or opportunities, that wasn’t a me problem —it was a society problem. I wasn’t “being dramatic” or “difficult” for wanting accessibility. Disabled people deserve to exist in spaces without having to fight for the accommodation we need.

Using head switches to drive Derrick, my powerchair

A photo of a powerchair headrest. The head rest has three switches on it - yellow, green and red, which the user can press to steer.

In this blog, Fraser Somerville talks about his journey towards driving his powerchair independently using head switches.

From the age of six I got my first wheelchair which was a manual chair called Chunc. I was getting pushed around all my childhood and I didn’t particularly like it because it had an impact on my independence.

At the age of 15 I got my first powerchair which I named Derrick. I controlled my power chair using a joystick on a tray. This didn’t work well for me because I have a tendency to swipe my arms due to my involuntary movements and it was hard for me to get a good grip on the joystick. Everything came to a halt because of Covid being in the way.

In 2022 I had a referral to see if there was another method I could use for driving my power chair. My bioengineer suggested I use head switching and I was really up for trialing it out.

A couple of months later my powerchair journey started all over again but this time my head was doing the driving. I was really getting on well with the head switches but they were clicking all the time when I was eating or drinking or doing an activity. I looked into head arrays which has three separate bits of the headrest and the headrest was a lot softer to lay my head on.

The day had finally arrived when the headset was put on to my wheelchair. I absolutely loved it, I was getting on really well with it until one day the right driving pad decided to break and it started to drive on its own which was really scary because I had no control over where the chair was going. Oh no. Alarm bells started to ring and I had a feeling this product wasn’t compatible with my involuntary movements.

Fast forward three headrests later I decided to revert back to my original clicky switches as I had lost the trust of the head arrays. I felt more comfortable. However, that was short lived as on holiday the power chair went back to its old ways of not stopping when I wanted it to.

Now I feel like history is repeating itself as I have had to replace several forward switches due to my strength and my involuntary movements. I’ve now gained a fourth switch which I can access via my chin, this is my emergency stop as I felt it was necessary for when the chair decides to do it’s own thing.

After having several meetings with my bioengineer, we have decided to part ways on the existing buttons and replace them with enclosed proximity switches which I hope helps my situation going forward. I will keep you all posted on my progress.

Interested in joining the new Glasgow AAC Group?

Image of two men and one woman. All are wheelchair users and AAC users.

Hi, my name is Fraser Somerville,  I’m 21, I’m from Glasgow, I have Athetoid Cerebral Palsy and I am the founder of the Glasgow AAC Group.

Why I started the Glasgow AAC Group

My reasonings behind starting an AAC group is because I don’t come across many people who use some form of AAC. Another reason is I was attending the Straight Talking group in Dundee and I really enjoyed it. However, it was getting a bit too much for me because I had to travel two hours there and two hours back.

Setting up the AAC Group

In order for me to start this AAC group I had to contact SCTCI who is the communication aid team for Scotland. I got in touch with them as they have the knowledge of who uses AAC across Glasgow. From there I had to secure a venue, I reached out to Tesco at Silverburn to see if I could use their community hub but unfortunately it didn’t work out as there was barriers I had to overcome before securing the room.

Then I had a light bulb moment to contact the founder of Include Me 2, Paul Mcilvenny, I explained I wanted to start my own AAC group and I asked him did he have anywhere that was available. I was delighted when he said I could use their building at Cardonald which is called The Hub.

I made up a flyer using Canva – luckily I had some experiences from past courses I have attended. Included in the flyer was that it is an adult only group and it runs every fourth Thursday, the reason being is that I wanted to interact with people who are on my wavelength and I could relate to. This flyer got sent to the SCTCI team and they displayed it in their office. A few days after this, I was emailed by a few people who said they were interested in joining the AAC group and I was overjoyed by this.

The first session

The day had finally arrived after a lot of organising, I was very nervous in case nobody showed up but luckily three other AAC users came. We sat round the table and got to know one and other. At the end of the session we played a game called two truths and a lie which was real fun. It was very refreshing to interact with people who use a communication aid like myself. My aim for this group is to gain friendships and be involved in the community to give the public an insight on how to communicate with users of different types of AAC.

Interested? Join in!

The Glasgow AAC User Group is for adults only and runs on the last Thursday of every month between 1.30-3.30pm at the Cardonald Hub, 25 Lammermoor Avenue, Glasgow, G52 3BE.

If anyone is interested in joining this AAC group, please contact Fraser via email: aacgroupglasgow@outlook.com

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