For cerebral palsy awareness month, Adam Baird writes about how volunteering at his local radio station has allowed him to develop his skills as a radio DJ as well as boosting his confidence.

“My name is Adam Baird and my passion is music and sports. When I saw a poster advertising volunteering opportunities at the local Hospital Radio station when I was 18, I went along to see if there was anything I could do for them. I spoke to them about my idea to have a show every Saturday with music mixed with sports news such as the half time and full time football scores.

“The Station Manager liked the idea and surprised me by saying I could do a weekly show every Saturday after some training!  I enjoy combining my favourite interests in a two hour show and have managed to do at least 40 shows each year for the past 21 years. I enjoy it just as much today as I did at the beginning.

“The radio station has now moved from Hospital Radio to an online station available for anyone to listen to. This means I don’t need to be so careful about what I am playing. On Hospital Radio, I had a list of songs that I thought might not be appropriate for my audience. Songs such as ‘I just died in your arms tonight’, ‘The first cut is the deepest’, ‘Beds are burning’ and ‘Achy Breaking Heart’ are good examples of songs that were on my blacklist!

“I had no idea it would be such a long term and rewarding experience for me when I volunteered. It has given me confidence and something for me to look forward to every week. I am so pleased that I had the courage to volunteer all those years ago. Hopefully  this article will encourage others to consider volunteering for something that becomes a big part of their life.”

Ann McIntyre’s son, Ewen, is 61 and has athetoid cerebral palsy. He lives at Capability Scotland’s Upper Springlands centre in Perth.

Ewen and Ann have had a long association with Cerebral Palsy Scotland, and with Dr. Karel and Mrs. Berta Bobath, the originators of the Bobath concept of therapy we practise at the centre. Ewen was first treated by Berta Bobath as a baby in the 1960s in London.

Below, Ann writes about a few of her memories of the Bobaths, and of how important this therapy has been for Ewen throughout his life.

“Our family’s first meeting was in August 1962 with Dr. and Mrs. Bobath in London when our son, Ewen had been diagnosed with cerebral palsy when he was just one year old.

“The following summer Ewen began benefitting from an annual series of treatments with Mrs. Bobath herself at their centre in London during 1963-1980, which coincided with our annual visits to the UK. At that time we lived in California, but in 1989 the three of us returned to live in our native Scotland so that Ewen could come to live at Capability Scotland’s Upper Springland centre.

“I remember another contact with the creative and delightfully outgoing Bobaths that was in approximately 1978.

“Mrs. Bobath was invited to lecture in Los Angeles on her unique method of treatment for people with cerebral palsy, so we were fortunate to have the charming couple stay over a weekend in our California home. Indeed, our son Ewen was on stage at the lecture hall with Mrs. Bobath for a short part of that important lecture, so she could demonstrate her treatment approach!

“Ewen has worked regularly with the therapists at Cerebral Palsy Scotland and we are very grateful that the charity is such a valuable and appreciated aid to people who have cerebral palsy. What an important gift this is.”

Rebecca Nicholson is the founder of Naked Brains – a consultancy that provides training to revolutionise how we perceive and deliver person-centred care. Naked Brains also offers other services too, including independent consultancy and advocacy. Here she explains how her own experiences have informed her career journey and work today.

 

I’m Rebecca I’ve got a story to tell.

A few years ago my life truly felt like

a living hell.

 

I was born with cerebral palsy. The education system made me believe that it may as well have been satan’s spell.

“You are a difficult child”.

“You aren’t very bright”.

“Your parents are making too much of you’re academic potential”, “you won’t amount to very much”.

Teachers at school are supposed to look after you..

instead they frighten the living daylights out of you…

leaving scars that take years to heal.

The words they say stick like glue believing what they say is the sum total of you.

I’m here to tell you that this simply not true.

You are enough.

You deserve choice and control.

You deserve to feel heard and empowered to live a life you love..

 

Naked Brains is here to help you.

Never lose hope. I’m here until you reach brighter days…

 

How I can help?

My Bespoke training programme revolutionises how we perceive and deliver person-centred care. As somebody who has a physical disability and uses a power wheelchair, I use a unique blend of personal experience, empathy and humour.

I discuss what values underpin person-centred practice illustrated through the stories straight from my heart (some may say from the horse’s mouth). You’ll laugh, cry and perhaps ponder concepts you may not have considered before.

Challenging your thoughts and beliefs about what it really means to care.

My approach is never to engage in a culture of blame but instead encourage people to be open to challenge their own misconceptions. I encourage self reflection in a way that promotes compassion and kindness towards oneself. This is when we see the ripples of change as we put humanity back into care. Our practice transforms and changes the world of the people we support.

Independent consultancy/  advocacy.

Recruitment, support, and advice.

 

Be part of the “clean thinking” revolution.

Rebecca Nicholson – bec.nakedbrains@gmail.com

In this blog, Barry talks about his decision to start accessing Self Directed Support (SDS) and how it has helped him live independently.

My name is Barry Smith, and I am 43 years old, I have a physical disability which is cerebral palsy. Because I have this, I use a power chair as well as a Lightwriter what let people understand what I am saying to them.

When I am not able to do something for myself, I try to think of a different way to do it. Like I find it hard to type on my computer with my fingers – because of this I have a big keyboard with an overlay over it, so I don’t hit the wrong letters, then I use my big toe to type. Now I am going to tell you what I use for my mouse – a joy stick.

Before getting Self Directed Support

In 2006 I got my own house. Up to 2016 I used a support office that I liked at the time, down to being new to getting support in my house. But one thing I didn’t like at the support office was that they could send anyone – that upset me because the person might not know how to speak to someone who uses a communication aid.

Starting Self Directed Support

In 2016 I asked if I could go down the road to get a Personal Assistant (PA) to work for me. How do they help me to get what I need for life support? Just like if I need a hand to make a phone call to fix something in my house, I don’t have to worry about if the person can understand me because I have my own PAs who work for me.

By using my own PAs, for me they are my hands – I am saying this down to they do things that I can’t do for myself or am not able to do for myself.

In my eyes when anyone need support care setup they should be told about SDS because it is people’s right to know all the right support information and asked what road they want to go down.

During lockdown

In March 2020 you all know we all got told to stay at home, but I couldn’t let my PAs stay off work because they are my hands, doing things that I can’t do for myself. But I am there to ask them to support me with things I am not able to do for myself, like making me something to eat and feeding me with it. And do my housework for me as well as getting me ready as well as talking to me because I don’t go out. Because of it one of my PAs put out a tent for me at my back door which gave me a bit of head space, because they know I couldn’t go out, by doing this I stop wanting to go out.

My support with SDS now

Now I start going out a little bit more, but I try to stay away from catching Covid 19.

I would personally say to anyone who is thinking getting support, go down the SDS because you can teach your PA what you need and tell them what your outlook in life is.

Before I end my little talk I would like to make people aware you can use a communication aid when they are on SDS.

 

We all know how important it is to raise awareness, whether it is a cause or a disability and there are many ways to make your voice heard.

Let’s turn to cerebral palsy – there are still a lot of people who don’t know what the disability is or how it affects individuals who live with it. Society is getting better at understanding disability but there is more to be done and throughout this blog – I will be talking about how a school marked cerebral palsy awareness day and about how raising awareness in education settings can make a difference.

Earlier this year, Debbie got in touch with us at Cerebral Palsy Scotland to let us know what she had done to mark national cerebral palsy awareness day on 25 March 2022. Debbie lives with cerebral palsy and attends Millburn Academy in Inverness – Debbie was keen on getting her school on board to help raise awareness about her disability – setting out ideas and plans herself for the day.

Debbie, along with the support of her school, put so much work and thought into the project by making posters with information about the disability and how it affects people including sharing facts. They created a presentation about what cerebral palsy is with a brief explanation using bright colours and images. On the information sheet, there were different links to websites relating to cerebral palsy teenagers including a YouTube clip which fully explains the different aspects of the disability.

All these creations made a difference for the school pupils, helping them to understand what CP is and everyone came together to support the awareness day. The pupils were asked to come into school in non-uniform and to wear green on the day – the colour of cerebral palsy awareness. The presentation was sent out to all the classes and a message went out over the schools tannoy.

We were delighted to hear about this awareness day which was organised by Debbie and as a cerebral palsy charity, a big well done to everyone who put the effort into marking the day – a heartfelt thank you to Debbie and everyone at Millburn Academy.

Cerebral Palsy Scotland welcomes anyone to raise awareness of cerebral palsy. The more people who know of it, the better. We would encourage education settings especially primary and secondary schools to get in touch to find out what they can do like Millburn Academy to raise awareness and educate young people about CP and disability in general. It is very important that pupils understand different things relating to the subject around disability and we can support you to use the right resources.

Get in touch here: getinvolved@cpscot.org.uk

Blog written by Bernie Hunter, Cerebral Palsy Scotland volunteer