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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

My views on disabled access – Faith Wright

As part of Cerebral Palsy Awareness Month, we have teamed up with Euan’s Guide to ask our content creators their views on disabled access.

Euan’s Guide is the disabled access review website where disabled people, their families, friends and carers can find and share the accessibility of venues around the UK and beyond. The website shares thousands of experiences and is the go-to tool for many disabled people. Euan’s Guide believe in making the world more accessible one review at a time. Thousands of people use Euan’s Guide every month to find and share disabled access information. Euan’s Guide recently published their Disabled Access Review where 6,000 people gave their views on disabled access. The review found that 91% of disabled people try to find disabled access information before visiting a new place.

My views on disabled access – Faith Wright.

What do you do beforehand to prepare for an accessible day out with your friends and family?

We try to do as much research about the venue or place as we can beforehand. Usually look for information on the websites etc if there is any sometimes we have to phone or email. Then determine if my manual or electric chair is best. Make sure I have straws!!

What information do you look for from a venue before visiting?

If they have wheelchair access or if there is stairs etc so I know if I can get in and if so which chair is most suitable. What the accessible toilets are like.

How do you feel if you know that someone with similar access requirements has visited the venue before?

Definitely puts me at ease a little and means I’m more comfortable/likely to go if I know what to expect or if I’ve heard positive feedback

How does this help you to feel more confident or prepared to go out with your friends and family?

Because I then know what to expect and have a better understanding of what obstacles I might face and how to avoid or prepare for them.

What is the most important piece of information for you when you visit a venue for the first time with your friends or family? The most important thing is if the venue actually accessible to me.

What do you think venues could do to improve your experience as someone with Cerebral Palsy? Educate themselves on what accessibly actually means and how everyone may need something different. If a problem is reported with the accessibility then they should take the time to learn, research and do better!

What is the number one thing that you would like people and venues to be aware of about cerebral palsy to help them improve their disabled access and disability awareness? We want to be treated like everyone else we are just customers like everyone else. Having access issues can really make us feel like we don’t matter and are invisible and that really affects us when we are trying to have a nice day. So please try to be patient and kind and accommodating where possible.

You can find out more about Euan’s Guide, read some access reviews or even write your own review on their website here – Euan’s Guide – Disabled Access Reviews (euansguide.com)

Read more results of the Euan’s Guide Access Survey –https://www.euansguide.com/get-involved/access-survey/

My views on disabled access – Christina MacLean

As part of Cerebral Palsy Awareness Month, we have teamed up with Euan’s Guide to ask our content creators their views on disabled access.

My views on disabled access – Christina MacLean.

What do you do beforehand to prepare for an accessible day out with your friends and family?

Travelling can be quite overwhelming and I tend to stress myself out as I struggle with the hustle and bustle. When I moved for college and university, my mum and sister would do a “test journey” with me. This would include them travelling from my flat to university for example so I could get used to the route. This made it a little easier when I had to travel on my own.

What information do you look for from a venue before visiting?

I am a young woman with mixed cerebral palsy and talipes (club foot). I also suffer from chronic migraines and trigeminal neuralgia. I do not require any walking aids but can sometimes be clumsy especially when I am tired. When going to a concert or theatre for example, I will check the layout of the venue online before booking tickets. I can sometimes find stairs difficult especially if they are steep as they may be a tripping hazard. I sometimes also check where the toilets are. I struggled at university when I did not get shown around as I did not know where the toilets were.

How do you feel if you know that someone with similar access requirements has visited the venue before?

Unfortunately, I have not been to a venue that I’ve known another person with cerebral palsy has been to. However, this would make me feel comfortable if I did.

How does this help you to feel more confident or prepared to go out with your friends and family?

I would say I am always apprehensive when going to a venue. It all depends how I feel on the day, what time I have to be there and if I need to travel. My family and friends are patient and understand that I might be feeling stressed. When I am with my friends we may get an uber together to make travelling less of a worry. My family and friends sometimes discuss a plan of what we need to do on the day, for example, get the bus, grab a coffee, go around the shops, have lunch and go to the venue. I find a routine to be extremely helpful and if it is planned out in advance I find going to a venue a bit easier.

What is the most important piece of information for you when you visit a venue for the first time with your friends or family?

I know this sounds a bit silly – but if the floor is level. Some flooring I find difficult to walk on. How steep the stairs are and where the toilets are.

What do you think venues could do to improve your experience as someone with Cerebral Palsy?

When I was at university it would have been helpful to receive a tour of the buildings I needed to attend. This would make me feel comfortable and less worried when starting.

What is the number one thing that you would like people and venues to be aware of about cerebral palsy to help them improve their disabled access and disability awareness?

That not all disabilities are visible and that we may all require different accessibility.

You can find out more about Euan’s Guide, read some access reviews or even write your own review on their website here – Euan’s Guide – Disabled Access Reviews (euansguide.com)

Read more results of the Euan’s Guide Access Survey –https://www.euansguide.com/get-involved/access-survey/