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My life as an ambulatory wheelchair user – Mhairi McKendrick

As part of Cerebral Palsy Awareness Month, Mhairi shares her story of being an ambulatory wheelchair user and the stigma that she has faced.

My name is Mhairi McKendrick and I have been living with cerebral palsy for 23 years now. As it is Cerebral Palsy Awareness Month, I thought I would share my thoughts on the stigma and misconceptions around being an ambulatory wheelchair user. If you don’t already know the definition of an ambulatory wheelchair user is, from my understanding it is: Someone who can walk but cannot walk for long distances or needs support to do so.

When most people meet me, I am in my wheelchair, because I meet most new people in my life at college. This definitely changes their view of me as a member of the class, they don’t involve me as much as the other people in my class, I should mention that I am the only person in my class that uses walking aids or use a wheelchair. It could just be a personality clash, but I’m not so sure. It doesn’t help that I am quite introverted when in my everyday life.

The way they treat me just shows that the stigma of fear of the unknown is still rampant in today’s society. It kind of annoys me because I have done nothing to my knowledge to make them feel weird around me. Like when I drop something when I am sitting in my wheelchair, sometimes I can pick up the item by getting out of my wheelchair but most of the time I have very little to no energy to do this. When this happens I have to ask my classmates for help and I cannot help but think that they’re thinking ‘Why does she need help?? she can walk!’ but they never ask me why I need the help.

From family testimonials, I know that it took me until I was 3 years old to walk unaided for 100 meters. This was a massive relief for my parents and a big raspberry to the face for the doctor that told them I would probably never walk or talk independently. As you now know I can do both of those things. One of the biggest blessings that has helped me maintain my stamina during my childhood specifically week-long physio that I had access to from the age of 2 till I finished high school. Without them I would not have kept the amount of stamina that I have.

Throughout the pandemic and even then, I have definitely lost a lot of it through not having the motivation or opportunity to walk during that time. The biggest stigma I have faced as a part time wheelchair user is something I touched on earlier- the confusion over why some ambulatory people need wheelchairs. For me its 2 factors: pain and energy levels.

Sitting here and writing this article: my ankles ache, my lower back is throbbing and I think that if I try to stand up I may just fall over or severely stumble over my own feet. It could be a whole other reason that someone who can walk makes use of a wheelchair. It is up to us as a society to normalise every version of wheelchair using there is. Not all wheelchair users are paralysed. Not all people who use a wheelchair are unable to communicate.

Here are some statistics about Cerebral Palsy: 1 in 3 are unable to walk. About 40-50 percent of individuals with cerebral palsy are wheelchair users.

The energy used to move by a person with cerebral palsy is three to five times more than that of a person without cerebral palsy. I am extremely grateful for the opportunity I have had throughout my life. So that I gained the skill of walking and had access to a manual wheelchair so I could access the world.

Exploring the connection between cerebral palsy and anxiety – Guinni Baker

As part of Cerebral Palsy Awareness Month, Guinni shares her story of being an adult with cerebral palsy and experiencing anxiety.

So I’m an adult now and cerebral palsy hits differently than it did when I was a kid. There are no regular doctors’ visits or physio sessions – no one worries about growth-spurts and leg lengths any more. I don’t get called names in the playground, (not that I’m aware of anyhow.. though I did recently find a note in a social area that read ‘Ms Baker leans and walks.’ I’m a depute head teacher in a secondary school and you bet I do, wee yin! Thanks for noticing!), I’m pretty aware of what I can and can’t do and moderate as needs be. The children in school almost instinctively swirl round me on stairwells, ensuring I always have my trusty bannister to my right and family, friends and colleagues are amazingly supportive and understanding. What I find difficult can mean that someone else takes on a little bit more and its so appreciated. So many little points of assistance in familiar spaces with familiar faces which make you feel comfortable and – I don’t know how else to say it – normal.

I wanted to talk about anxiety in this blog. It’s been a huge and, at times, pretty crippling part of my life. I had a complete breakdown around twenty years ago and had two awful years recovering from it. I didn’t even know what anxiety was at the time but I could barely function and genuinely felt I was losing my grip on life completely. Looking back now I can see that what happened then wasn’t isolated. But I had no knowledge or understanding – just fear.

I couldn’t do my hair as a teenager. It drove me crazy. I was 16 before I successful managed a ponytail and that’s still about the most I can do with it. The frustration and upset of that was out of all proportion to what I was trying to do but hours in front of the mirror and a hairbrush that got chucked across the room was not unusual. (Shout out to my two sisters who were always happy to save the day, the mirror and my sanity lol)

I recently had an adult assessment at Cerebral Palsy Scotland and asked them about the link between cp and anxiety. Was there one? The physiotherapist said that I have to work harder to get to the baseline of daily activities and over time that can cause stresses and anxiety. This really hit home for me. I don’t like change – never have but I started to wonder if this could go some way to explaining that? Staying in familiar circumstances means I don’t need to rev so hard to get by – in familiar places and surroundings I know what to do. I don’t need to wonder if I’m going to hit a wall; get stuck; can’t do it; need help in an unfamiliar place with unfamiliar people. That’s no way to go through life though and I do fight it as much as I can. I especially hate travel – that just seems to click all my cp buttons. I like being places though so every holiday planned is a love/hate/fear three act play. Never regretted going anywhere though!

I went through the worst of it before having my children – and I’m so glad I did. Having children is such a physical endeavour – in every way – and I found a lot of it painstaking! 52 poppers to change nappy / vest / baby grow. I wouldn’t bathe either of them as babies- my husband did it until they could sit up and don’t even start me on car seats and buggies!! My son, as a baby, would instinctively roll towards my dominant hand when I went to lift him from his cot. That always made me smile.

They are both now teenagers and help me in so many ways daily. My daughter stopped me from referring to my ‘bad hand’. She said I shouldn’t talk about it that way.

So now as an adult the challenges are different. I don’t want to restrict myself because I’m scared I can’t do something immediately and comfortably. No one ever said no when I asked for help and no one should ever feel too proud to ask for help when they need it – whether it’s carrying drinks back from the bar or talking about mental health – there’s always someone who will listen and move you on a little.

In the last year I’ve tried to take far more pride in what I can do rather than focus on what I can’t. I feel more connected to my body and I try to develop that connection in the gym and on walks so I can take pride in the progress I make (feeling wee, hard muscles on my cp side following my shaky efforts in the gym gives me total joy!). So for my final blog of CP Awareness Month I’m going to leave you with my top tips:

Develop what you can – maintain what you can. Move as much as you can.
Take help when you need it – don’t avoid experience and never make a decision based on fear
Talk about mental health. Saying you’re feeling anxious today should be as natural as saying ‘ you’re getting cold’.
Get in touch with CP Scotland. Their support, warmth, knowledge and kindness is amazing
And finally, always carry hand gel if bannisters are a necessity for you lol

Living as a person of colour with cerebral palsy – Ruthanne Miller

Hello, My name is Ruthanne Miller, I’m 26 years old and I am from London, I have Diplegia, cerebral palsy.

I also have chronic pain and as a person of colour in my personal experience when I tell medical professionals that I am in pain I feel like they do not understand my condition or severity, and they imply it’s in my head. This is because as I am diplegic but able to get to my local doctors without need of my chair, they see me as capable and express dismissive actions. In order to combat this I have utilised my PA’s to come with me to my appointments which helps express the gravity of the situation.

When not in pain I love to go to concerts with my friends. Sometimes it is hard to socialise, it can be a challenge to make new friends, my social group *SHINE* put an end to this and I’m excited to see them again. I like to bring awareness to cerebral palsy and other disabilities on social media as I believe awareness is key.

In the future I would like to work with children with disabilities, as one of my most fond memories is enjoying time with my teaching assistant and them helping me in my starting steps to life. Towards this goal I have completed my level one Maths and English at college and will soon start my level 2. I used to see revising as an obstacle but as I have set a goal That I WANT I know that I can get it done which makes studying and growing somewhat fun.

As a black person there are certain stereotypes you have no choice but to overcome such as, “Your strong don’t talk about how you feel” this one is a very self-destructive and mentally draining.

Another thing they say is … “You have no choice but to outperform everyone else if you want to even slightly stand out” this gives you a feeling of no self-worth and makes it hard to appreciate yourself and your achievements. I make it my duty to surround myself around positive people, which in this day and age is like a needle in a haystack – so I’m thankful for who I have.

I think that more education should be taught in schools about all disabilities not even just cerebral palsy and the fact that not all disabilities are visible. In the future, I hope to see a more inclusive society and better understanding of what Cerebral Palsy is in adults, I can’t wait to see this day.

How I followed my dreams and started my own business

I’m Jack, I’m 28 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 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 which 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.

A vice clamp and jig that Jack made to help him with a number of things.

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 six 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, I won the Prince’s Trust Young Achiever of the Year award at the Pride of Scotland Awards held in Edinburgh. I also done 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’.

Two adaptations made by Jack for creating his work, called 'third hands' — Two adaptations made by Jack for creating his work, called ‘third hands’

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.

I am still involved with the Prince’s Trust and would not be in the position that I am in if I hadn’t got involved with them.

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 and to 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.

You can follow Jack on Facebook via Salvaged Metal Art and through his motivational speaker page where he shares lots of content regarding cerebral palsy, epilepsy, motivational quotes and work/life balance.

Challenges are being faced by the cerebral palsy community in social care and Self-Directed Support

Between December 2023 – January 2024 we asked the cerebral palsy community in Scotland to share their experiences of social care and Self-Directed Support through completing a survey.

It was clear that many are facing a range of challenges when they access social care services and Self-Directed Support.

Read the full Survey summary

Key findings from the survey include:

Many adults with cerebral palsy (33% of respondents) are relying on family and unpaid carers to support them.

Half (50%) of respondents were dissatisfied with their experience of being assessed for social care, while 35% were satisfied.

There were a variety of reasons given for feeling dissatisfied with the assessment process, including that it was seen as too slow, overly intrusive and inflexible. Some carers felt unfairly judged by professionals who were assessing, and some people with cerebral palsy also felt misunderstood.

Half (50%) of respondents felt that their care package doesn’t meet their needs, while 31% felt that it does.

Reasons given by respondents for feeling that a care package didn’t meet their needs included not being awarded enough hours of care, being too limited in what they were allowed to spend the award on, and not having the right services in the community to access using the award.

Recruiting enough – or any – paid carers is the biggest concern amongst respondents

Specific challenges mentioned relating to recruitment included having a support budget that couldn’t be spent as staff couldn’t be recruited, the difficulty of recruiting staff when a person is awarded a small number of hours of care per week, and frequently changing staff teams impacting on care.

Most people feel that their paid carers have the right knowledge and skills to do the job.

Commenting on the survey findings, Stephanie Fraser, CEO of Cerebral Palsy Scotland said,

“The findings from our survey echo very clearly what we have been hearing anecdotally for some time now from the cerebral palsy community in Scotland.

“As national discussions continue on health and social care and the proposed new National Care Service, we have already been sharing these findings with ministers and officials from the Scottish Government.

“Good social care services are fundamental to allowing those that need it to meet their basic needs, access day-to-day life, and maintain their physical and mental health. We can see the system isn’t working for many people with cerebral palsy, that a large number are still relying on family and unpaid carers to support them, and that the lack of paid carers is causing huge challenges in an already imperfect system. This is unacceptable.

“We will continue to ensure that the voices and experiences of people with cerebral palsy, their families and carers are heard at the national level, and to make the case for urgent change and improvement within these vital services.”

Read the full Survey summary