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Our experience of therapy with Mrs Berta Bobath

Ewen and family

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

Dr Karel and Mrs Berta Bobath (copyright Phil Weedon)
Dr Karel and Mrs Berta Bobath (copyright Phil Weedon)

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.

Ewen as a young boy being treated by Berta Bobath
Ewen as a young boy being treated by Berta Bobath

“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.

Ewen at Upper Springland
Ewen at Upper Springland

“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.”

Be part of the “clean thinking” revolution – Rebecca Nicholson

Rebecca Nicholson smiles at camera. She is sitting in a powerchair. Her canine partner Gregg sits by her side.

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

How and why I started getting Self Directed Support

Image of Barry smiling at the camera

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.

 

Raising cerebral palsy awareness in education

Debbie Spears from Millburn Academy with a friend

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 and her friend smiling at the camera

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

 

An interview with Jack Hunter by Jack Hunter

Hello Cerebral Palsy Scotland readers! I hope you are well. My name is Jack Hunter and I’m going interview myself. No, I really am. I’m sitting here writing this at my laptop. I am speaking to you now from the past.

But before I start, I want to thank CP Scotland for their support and this opportunity to promote my new play One of Two, which is premiering at Summerhall, as part of this year’s Edinburgh Festival Fringe.

Ok let’s start:

Hello Jack.

Hello. Good to see you.

What is your connection with CP Scotland?

I am very happy to continue my association with CP Scotland.  And in fact, it goes a long way back. My twin sister Bec and I both have CP, and we used to come all the way down from Inverness to the centre to receive specialist physiotherapy treatment. Of course, that’s when it was known as Bobath Scotland. I still remember going to the centre, when I was wee.  One time In order to measure my gate, the team put dozens of little light bulbs on my body. It kinda looked like a motion capture suit, in a fantasy film. It was so cool! The centre does some fantastic work.

In 2019, I spoke at, what I believe was, the final Bobath Scotland Conference, with the Artistic Director of Birds of Paradise Theatre Company (BOP), Robert Softely Gale – who also has CP. We were speaking about a documentary they had produced in parallel with their 2018 Fringe smash hit My Left Right Foot – The Musical. The film was called You’ve Got to be Ballsy: Stories from the Frontline of Cerebral Palsy and the idea was for me to interview an array of young people with CP, to give them a platform to share their experiences of what being a young disabled person is really like. It was a real privilege to speak with all the people who contributed: artists; swimmers; actors; musicians – and Bec… But you know, I’ve heard all her stuff before… She won’t be happy with that. No, that’s not true. I think for both of us it was a revelatory experience. In fact, if anything it brought us closer.

Through the conversations I had, the aim of the film was to give disabled people, an underepresented group across society, a public platform, to spotlight  discrimination and abelism.. In addition, the filmed participants challenged prevalent  misconceptions about disability. I’m really proud of the film for this reason; as it enabled the  individual voices of young disabled people to be heard. It’s one thing to raise awareness regarding the challenges disabled people face, It’s other to accept the expersonce of every disabled person is diffrent.

Very insightful Jack. Now tell me what is One of Two, what is it about?

One of Two is an autobiographical play that tells my shared story, with Bec, of two twins growing up with Cerebral Palsy. It’s a comedy drama, with shades of light and dark, as well as a lot of lunacy.

On the face of it, we find a very sad Jack (AKA me) alone in his flat, struggling to come to terms with the end of a relationship. He’s trapped in his grotty wee bathroom with a Star Wars inspired “Darth Tater” Mr Potato Head. What’s not funny about that? A revelation occurs to Jack (It’s funny talking about yourself in the third person. You can tell I’ve got the appropriate amount of distance from it now) that he has always needed to be paired with someone else. A friend. A partner. A twin…

Ultimately, the audience will go down the rabbit hole, or perhaps more aptly the toilet pan, with Jack through his shared past with Bec, past on a journey of self-discovery. Creating the show has been a lot of firsts for me. It’s my first ever professional writing credit and it will be my first ever acting job at the fringe – I’ve been living in Edinburgh for nearly ten years, so it’s about time really.

None of this could be possible without the support of a few organisations. Firstly, a big thank you to Summerhall for awarding me the Mary Dick Award. I’m buzzing to be part of their fringe programme. I’m incredibly grateful to Birds of Paradise Theatre Company for their support as producers. I’m excited that Robert Softley Gale is coming on board as director too! I’m sure we’ll have a lot of fun.

I hope that’s enticed you into coming along.

Well… I’ll definitely be there. Why did you want to tell this story?

My relationship with my sister has had an everlasting influence on me and has undoubtedly shaped me as a person. So, in order to understand where I stand in the world, I wanted to unpack this unique relationship.

Without being too cerebral… the play focuses on the disparity of  Bec’s and I’s experience of growing up with CP.  As young kids  our early years were near identical; however as we grew older, key differences have arisen throughout our lives.

You should know that I have a mild manifestation of CP (I walk with a limp as my left leg is shorter than the right), whereas Bec has a slightly more pronounced manifestation (she is a full time wheelchair user).

None of this should matter as people should be able to live their life regardless of their impairment but society has disabled us to varying degrees, Bec more so than me.  I wrote this play because I wanted to investigate this disparity of experience; the inequity of experience between disabled and non-disabled people, but also within the disabled community itself. For instance, Bec and I’s experience within secondary and further education was vastly different. This primarily came down to contrasting attitudes of how educational professionals and fellow students perceived us and our abilities. I think the  play boldly examines the partial failings of our education system and the methods of how it supports young disabled people.

Although the play has a strong theme of disability, it’s also a coming-of-age story, and I hope will have universal appeal with a wide audience, beyond being pigeonholed as a “disabled” story. I know “coming of age” is a bit of a cliché. A bit generic.  A bit bland. But I don’t think it is a style of story often explored from a disabled perspective Bec and I have faced a few barriers throughout our lives; and I think as a society we often are conditioned to not talk about how this impacts our own mental health or self-worth. And at times we are hindered by and urged to adhere to idealistic societal expectations. But in the words of Fleetwood Mac: “you can go your own way…”.

I assume the play will be seen by a predominantly non disabled audience. My hope is that the play will not only raise awareness of the societal barriers that disabled people face, but to provoke the audience into reflecting upon their own perceptions of disability. This is in now way to  alienate the audience. The world, now more than ever, is so polarised. In my mind you’re not going to instigate change by demonsing anyone. I want to bring the audience  with me and keep them on side. How do I do that, you ask? Jokes. Lots of Jokes…..

Wow, how thought provoking!

Why, Thank you.

Why should people come see the show?

First of all, I should say that technically it’s a one man show. On the surface, that doesn’t sound very unique. One person shows are ten a penny at the Fringe. However, Bec will be with me, not in spirit, but through the wonders of multimedia. Voice over, projection and what not. So, she will have a presence. We will converse. And a jolly time will be had by all.

The play has an interesting blend of performative styles. Obviously, it’s theatre. There’s no getting away from that. But that’s not bad in the slightest. It means you can fit in a lot of styles. Not to say that it’s slapdash, you understand. It’s been honed, crafted, and mushed together into a smooth theatrical pulp. The key ingredients are: a slice of silliness, a sprinkle of stand up, and a slurp of spoken word. So hopefully, there’s something for everyone, unless you want interpretive dance. I can’t help you in that department.

However, I do feel that the main selling point of this play is the story. I believe it is truly unique.

What’s your relationship with Bec like?

Oh, we’re incredibly close.  We don’t see each other as much as we used to, what with Bec living in Inverness and me living in Edinburgh. She has a great phrase “It’s a relationship that doesn’t require maintenance” which I think is so true. We can go ages without seeing each other, but the closeness is still the same. I think if you have that shared lived experience, you will always have a tight bond. But we definitely don’t agree on everything.

Having Bec involved in One of Two is incredibly Important to me. Both her and I care immensely about supporting disability rights and raising awareness. Whether it’s through my creative work, or through Bec’s disability training sessions with Naked Brains Consultancy. We want to instigate discussion and social change.

Are there, in your mind, any misconceptions that surround disability?

I think there are probably a fair few floating around. However, I think maybe the biggest dual misconception held by non-disabled people, is that disabled people are either inspiring or destitute. Inspiring because somehow we have defied the odds stacked against us to obtain a ‘normal lifestyle’: job; home; family. That kind of thing. Or we’re destitute, as those that have been disabled by society are left without support and slip through the cracks, leaving them with nothing.

This contrast in views, in my mind, is clearly down to a lack of socio-economic provision to support disabled people, but is also due to a lack of awareness across society. I hope that One of Two can shed some light on this gross inequality.

Thank you, Jack.

You’re welcome.

And finally, when and where can we see One of Two?

One of Two is at Summerhall in Edinburgh, from the 3rd – 28th of August, at 11:45am. The venue has level access, there is audio description and captions at every performance, we are doing four BSL interpreted performances, and one performance will be Relaxed.

If you want any more information, you can follow me on Twitter and Instagram @jack_hunter95, and you can find out full details on the Birds of Paradise website.

Come along, It’s going to be a blast.

Thank you for taking the time to interview with me, Jack.

You’re so welcome.

 

Tags: Cerebral Palsy, cerebral palsy scotland

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