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. ❤️

. 

What does independence mean to me? – Melissa Cassidy

As part of cerebral palsy awareness month, Melissa Cassidy has written a blog about independence and what it means to her. 

What does independence mean to me?

As you grow up with a disability there’s always increasing questions that arise in yourself and from others about how independent you are going to be in life. There’s always the assumption that you as a disabled person don’t have the same desire as others to be independent which can often be quite harmful and discouraging. I think this belief comes from the idea that most disabled people lack ambition – for most people this couldn’t be further from the truth.

Independence is a very personal concept and no two people will have the same definition of independence. For example, when I was seven years old I thought independence was being able to get dressed myself, when I was twelve I thought being able to take showers and baths myself was independence and now I see it as being in control of my week and doing things like studying and writing. I’ve learned through this that independence is subjective. Personally I’m very ambitious so often I can inflate my definition of independence which can become overwhelming; I think this is because I’m lucky in the abilities that I do have and as a result of this I push myself. Overall though, you can’t define independence or say who is or isn’t independent.

If we want to use the arbitrary scale of independence though – I’d say I am fairly independent. I’ve had my house adapted to allow me to do essentially all my personal care myself which I’m really thankful for. I go out with friends myself and I can use public transport safely. Keep in mind that I’m 17 now so all this has been gradually worked towards and nothing has come easy. I am still working on learning kitchen skills though and currently this is what I think would limit me from moving out (a huge personal goal). I also can’t do my own hair which is why I’ve kept it short for most of my teenage life although I have started growing it out in determination to find a solution. Sometimes I find it difficult to accept that I need help because I am so desperate to be prepared for adult life.

There’s also very much a social pressure to be independent when you’re disabled. It’s almost like people see those who manage the stereotypical definition of “independence” and are disabled as better than those who don’t which is pretty absurd. I often get asked a lot nowadays questions like “how will you get a job?” Or “how will you live alone?” And while these aren’t asked with bad intentions I think it’s quite rude firstly to assume that everyone must follow these paths and secondly to assume that disabled people can’t achieve these things. Judging people based on they’re “independence” is also really hypocritical in the sense that if a disabled person can’t dress themselves they’re seen as not “independent” but if an able-bodied person breaks their arm and can’t dress themselves we don’t suddenly think if them differently or imagine their lives differently.

Ultimately independence as a disabled person is about achieving the goals you set for yourself as opposed to living up to a societal standard of what you should be doing. It doesn’t change who you are because in my opinion a person is what they can do, not what they can’t.

My cerebral palsy is a part of me – Barry Smith

As part of cerebral palsy awareness month, Barry has written a poem titled “My Cerebral Palsy is a part of me”. 

My Cerebral Palsy is a part of me.

Many people who don’t know me might see me in my power wheelchair and feel sorry for me.

Thinking I don’t understand what they are saying to me and what I don’t like because I can’t walk, and many people can’t understand what I am saying to them.

Yellow sky lights up when I got my high text communication aid, that has speech output on it after I type into it what I want to say.

Cats and Dogs like getting patted on the head but I can’t stand it.

Eyes might look but people may not want to ask what is wrong with you. It is the wrong thing to do in my eyes, that aren’t green like my cat.

Run away, I can’t physically do but in my mind, I can be who I want to be.

I want people to see past my physical disability and see me for the person I am.

I can hit a ball with my wheelchair, which feels good too.

A happy day is when people see me for the person I am.

Love shows from my heart because I am so happy when people see me for who I am.

Love shows in my eyes, people can see this which is so nice for everyone too.

People may walk by me and feel sorry for me. I don’t like that because I am a person who is just like you too.

A great person, I am. No need to look at my physical disability.

Love and understanding are what I need in my life, which is a gift of life.

Yellow sunlight helps me in my life and make me feel so happy.

I open my eyes each morning and try my hardest to do what I can in my life.

See me as a person, for who I am.

An apple might be hard to eat, but living with Cerebral Palsy is the same – but so good too.

Barry Smith

Going to school with cerebral palsy – Melissa Cassidy

As part of Cerebral Palsy Awareness month, Melissa shares her experiences of education as a person with cerebral palsy.

Melissa is a young author and disability activist. Growing up, writing was the most effective way she could communicate. Melissa has her own blog called Buttons and Ramps which you can find here – https://buttonsandramps.wordpress.com

Going to school with cerebral palsy – Melissa Cassidy. 

School – the foundations of almost every modern life or at least somewhere parents can temporarily abandon their annoying children. Regardless of how you see it, everyone has a different experience of school. When you have a disability though it adds a whole new layer of physical, emotional and social challenges. I want to share my experience of education in the hope that it illuminates what going to school can look like when you have a disability.

Let’s start at the beginning: after a traumatic birth my parents are left with a (abnormally good looking) disabled baby and a future of uncertainty of what my life was going to be. They didn’t know where to send me to go to nursery until the health visitor suggests a special nursery conjoined with a school called Kelburn Park. My parents didn’t know too much about disability but decided to check it out as an option. My mum tells me that the first visit we had I came out with a beaming smile and begged her to let me go there. The nursery was perfect for me and I honestly don’t have one bad memory of it. My mum said it was quite scary at first as they collected the kids from their homes to take to nursery and she didn’t enjoy having to hand me over every morning which is ironic because she’d probably love a moment of peace like that nowadays. I was a really happy, outgoing child so at nursery I could often be found pretending to perform plays, writing stories and painting.

Special nursery was definitely the right place for me but things changed when I went into primary one at the special school. While I was having fun, my parents grew concerned that by Christmas in primary one I hadn’t really developed my reading skills and by the end of the year they made the tough choice to move me into mainstream school. While this wasn’t easy, they felt I needed the same level of education as my sister. Ultimately this was the right decision, although I was starting a year late I settled in really well. This kickstarted the phase of me realising that I was different to my peers which got me down for a few years and definitely affected the way I felt about myself but I was fortunate to be relatively included and accepted by my peers and definitely flourished at my primary school.

Then came Secondary school and this is where I really started struggling. The first year at Secondary school, I found it incredibly difficult to make friends as I watched most of my other friends find other friendship groups while I struggled to speak to people because I was so self-conscious. This also resulted in me having some resentment against my helpers at school because I just wanted to be “normal”.

Looking back, I wish I had had better role models and more confidence as my lack of confidence then has definitely had a ripple effect on where I am now. Eventually I had to let go of the internal desperation to be like everyone else and this is where I started forming better relationships with my assistants and even made a few friends. Forming that bond with my assistants especially my closest one whom I often refer to as “my second mother” was crucial to me getting my confidence back.

Another thing that had a huge impact on my confidence was the arrival of a new drama teacher, in the space of a month I went from silently loathing drama to confidently laughing and performing with my class. Once I felt that encouragement nothing stopped me and I actually ended up getting a drama qualification two years after.

What I’ve learned about going to mainstream school is that confidence in yourself is everything. I lost a lot of time in my life being self-conscious and not wanting to put myself out there when that is the only way you are going to thrive in a mainstream school. My family and I have all been through an incredibly transformative journey as I’ve gone through school but the opportunity to get that mainstream education has been entirely worth it.