Category: Blog - Page 5 - Cerebral Palsy Scotland

Breaking down barriers to employment – Michael McEwan

As part of Cerebral Palsy Awareness Month, Michael shares his experiences of employment as an adult with cerebral palsy.

March is Cerebral Palsy month, an opportunity to raise awareness for those all ages with lived experience of Cerebral Palsy(CP) across Scotland, showing the diversity of the CP community and share what matters to us all.

Every day is about raising awareness of disability, when we talk about various disabilities it’s not just a label, it’s important to look at the person, not the disability and focus on ability.

One of my biggest passion is employment for those with disabilities, the sad reality is the gap is getting wider, we may be aware in families or community, those people who would love to get a job, but not given the same opportunities.

According to the National Office of Statistics report last year, there were 53.6 % with disabilities in employment, compared with 82.5% without disabilities.

In 2020 the employment rate was 53.4% so very little growth or development in four years, with existing barriers , employers should look beyond people disability, and look at what a candidate can bring to the job.

Because as we know all we have all got some kind of talent we just need a change to showcase and ok people may need a bit of support but we all need a bit of support one way or other.

I have experience of my struggle into employment, each time I met barriers, I was more determined to prove people wrong, many doubted I’d become a journalist but here I am, not the conventional route, but as freelancer I can make my own career, and still focus on my advocacy work.

My advice is never lose focus on what u want to do in life, from an early age wanted to be a journalist, was told by many people it’s not the job for me, twenty years on, that’s my chosen career and I love my job.

I often wonder if I didn’t have a disability then would my path have been shorter and easier, but then perhaps I wouldn’t have the same determination.

Society now is opening doors slightly for people with a disability, but when we talk about employment there are many barriers, I didn’t realise we would be talking about this in 2024, when I speak at different events , the story is the same.

In reading this article I would like employers to acknowledge the need for change, see people for their own merit and don’t just categorize them.

If you are an employer and would like to better support people with disabilities at work, please visit – Talking about disability – Supporting disabled people at work – Acas

Joseph’s journey: living with Dyskinetic Cerebral Palsy – Danielle McKay

As part of Cerebral Palsy Awareness month, Danielle shares her experiences as a parent of her son Joseph who has cerebral palsy.

Our son Joseph was diagnosed with dyskinetic cerebral palsy when he was four, he’s now 6. He loves going to football games and riding his bike and has the cheekiest outgoing personality.

There are many causes for cerebral palsy, in Joseph’s case his brain temporarily didn’t get enough oxygen (asphyxiation) during a difficult birth. An MRI confirmed permanent brain damage when he was a few days old.

Cerebral palsy can affect movement and muscles (e.g. tongue, lips and jaw) needed to produce speech. Joseph can verbally communicate most of the time but also uses others ways to communicate like sign language and symbol pictures as he’s not always understood. The biggest challenge is when Joseph is upset when he’s not understood, this can be really difficult when he becomes upset and frustrated. But his speech is becoming clearer ever day and has constant support from his speech therapist. Even his friends and school teacher love learning sign language too which makes Joseph feel even more included and boosts his self esteem.

Joseph has difficulties with fine motor control in his hands and can struggle to do certain tasks, like dress himself or open book pages but Joseph has a great occupational

therapist who always makes sure we’re doing activities and he is smashing his goals.

We were very lucky to attend Cerebral Palsy Scotland Fife Outreach programme for one week of intense therapy last year. It was the first time Joseph was able to use a fork and knife all by himself cutting up things. He looked at me with the biggest smile on his face. It was the best feeling. It highlighted the fact that he can achieve anything he put his mind to, the experts at Cerebral Palsy Scotland gave him all the tools and support he needed to achieve this. I really admire the passion the therapists at CP Scotland have, we felt so lucky to have this time with them. We learnt so much about Joseph we didn’t know before. Joseph called the therapy rooms the games room and couldn’t wait to go back.

Joseph is loving his local mainstream school and has the most amazing group of friends. He’s absolutely thriving and loving life. His friends are so supportive and understanding of Joseph. I feel it’s really important to talk to children about different disabilities and as a parent I would always welcome any questions that any adult or child had and encourage parents to speak to their children about disabilities. I would say to other adults not to be scared or feel judged, children are curious too and that’s okay! It’s okay to not know the answer, not even us as parents know the answer sometimes! Just being open and honest can be super helpful and we can all learn from each other.

It can sometimes feel lonely parenting a child with a disability and you can often wonder if you are making the right choices and stuck worrying about the future. Trying to be as open as possible and seeking support when you really need it I feel is important. ❤️

How my cats help me

In this blog, Barry talks about how important his pets are to him, the impact of losing his cat Ruby, and getting new kittens.

Who I am and why I am writing this

My name is Barry Smith, and I am 44 years old, I have cerebral palsy which is a physical disability. Down to having this, I am in a power wheelchair, and I use Lightwriter which is a communication aid. I live by myself. Four weeks ago I saw my nine-year-old cat was very ill so me and my Mum took her to the vet with one of my P.A.

The outcome of seeing the vet

When we saw the vet she saw Ruby were ill. The vet told me there were two things we could do, which are send her for blood tests or put her to sleep, she was at the vet the week before with the same thing. I asked the vet what would you do if you were me. She told me I would personally put it to sleep because she was in so much pain, As soon as I heard this I asked the vet can you do it today. I loved her so much I didn’t want her to be in any pain but could I have a few minutes to say goodbye to her. The vet were happy to do this for me. When I had a few minutes with my sweet Ruby I thanked her for being my cat and told her to go off to the sky without any pain but felt so sad. The vet asked do I want her pawprint. I said yes please and she then asked do I want her ashes back in a little cat vase I said yes please because she would be coming home with me.

Saying to to Ruby my cat and how I felt

When the vet came back into the room and my mum petted Ruby I were heart break because I knew I wouldn’t be able to pet her again. The vet put it in to send her to sleep. I were so upset and I cried which isn’t like me but I knew she had a happy life. As soon I came out of the vet I knew I wanted a little kitten but I knew I needed time to get my head around what happened to my little Ruby. As soon I got home I knew I wanted a little kitten.

Twelve days later

I got a 8 week kitten, but this time it was a little boy who was a black and white kitten, same as Ruby. As soon as I saw him I loved him but I had no name for him for five days, because I wanted a name I could say and people could understand what I was saying without me using my communication aid all the time. The next few days I play with him and I work out how I can give feed myself.

I personally remember feeling like I won the lottery because I felt so happy, but I still miss little Ruby. Then I thought to myself what do you think Ruby would tell me to do she would think “Standing by your boy kitten and give him all the love you gave me over 9 years.” Just then I said a name so everyone could understand what I was saying what was Leaon, I like that name so I called him Leaon and I can say it Leaon and I love him so much. A few days later I made up my mind to get one more. At first I was going to get a boy but got a girl and call her Amy. Now my family is my kittens and I love them so much although Ruby will always be in my heart.

Edward Stanton leaves a lasting impact

Leaving a gift in your will can have a life-changing impact for people with cerebral palsy in Scotland and their families.

We are grateful to Edward Stanton, who decided to leave a legacy to Cerebral Palsy Scotland in his will. Below, Edward’s friend Peter writes about Edward and what motivated him to donate in support of people with cerebral palsy.

I’d like to tell you about Edward Stanton, a man I am proud to have called my friend. Born in 1939 he was diagnosed soon after with cerebral palsy. In keeping with the times he was considered uneducable so did not attend mainstream school.

Worse still, at the age of seven he was removed from his family in Glasgow to Caldwell House near Lugton in Renfrewshire and later to Lennox Castle Hospital, Lennoxtown. Deliberately placed out of sight it took a lot of effort using public transport for his family to visit. That determination was shared by Edward and reflected in his irrepressible spirit and the opportunities that he took to enhance his prospects and those of others.

Edward stayed in Lennox Castle until he moved back to live with his family in 1967. A life-long Celtic fan, let’s just say that was a very good year. Gradually he built up his own way of living and took on the family tenancy.

To say Edward embraced life with both hands would be an understatement. His sense of fun meant he was always up for an escapade, the hairier the better. At the same time he was a powerful advocate for others and as opportunities arose for him to access support to live in the way he wanted so he encouraged and educated others on how do so too. Through rights based campaign work, direct action and group advocacy he enthused and emboldened others. He took part in training events with nursing and social work staff and students not to mention regular letters to Scottish Ministers and local councillors. His persistence and determination to find a way was clear.

Edward used his story to encourage others. He had several versions of his biography and he didn’t let his lack of formal education get in the way. He typed out a version of his story on computer using one finger, words, dictated to him letter by letter by letter. During a difficult time at work I asked him how he managed to get through all those years in institutional care. His reply “I just had to believe that one day it would
be better” embodies all those qualities.

Edward died in July 2021 having taken ill when watching his beloved Celtic. He asked in his will that a donation be made to Cerebral Palsy Scotland. I am pleased to be able to carry out his wishes in a tribute to his sense of generosity and justice.

Find out more about leaving a gift in your Will to Cerebral Palsy Scotland or making a donation in memory of a loved one.

My experience with accessible train travel

In this blog, Barry writes about his recent train trips, and his experiences of the new system for accessing ramps when you’re travelling by train.

My name is Barry Smith and I have cerebral palsy, which means I am physically disabled and I am in a power wheelchair.

Some disabled people might think they can go on a train no more because they heard the personnel who work at their train station can’t get the train ramps out anymore.

Now, the person who takes the tickets on the train gets the ramp out. I think this works better because the personnel who work on the train know which stop the disabled person wants on and off at. This means the personnel who work in the train office can get on with their job.

In the last six weeks, I have been on a train three times, here where I am being and then finding out. First, I went from Irvine to Glasgow with the ramps and it all went well, then I went back to Irvine on the train which were a great day. I book the trains ramp to do this two days before, which is great times, then I went to Ayr on the train then back to, which was a nice day out as well.

Four weeks later I went from Irvine to Glasgow then a wheel around to Queen Street to get a train onto Edinburgh W to get the Newscastle train – all the ramps were booked to let me get on and off each train with my power wheelchair at the right stop, everyone were there at the right time for each train to get me on and off in time.

My plan went so well and I met the man off the train who took me to where I going for a respite holiday for a week. After I was on my holiday I went back for the train – everything was booked like before to get me back home again.

More information on accessible travel with Scotrail can be found on their website.