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How I look after mental and physical health as a disabled teenager – Melissa Cassidy

As part of Cerebral Palsy Awareness month, Melissa shares how she looks after her mental and physical wellbeing as a disabled teen.

Melissa is a young author and disability activist who has cerebral palsy. 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

How I look after mental and physical health

Being disabled and attending mainstream school can be a lot for me sometimes and despite being a relatively happy person, I have times where I drop the ball on making sure I stay healthy. So I thought it might be helpful to share some of the things I do to keep myself both physically and mentally well.

When it comes to physical health when you have cerebral palsy it’s often hard to find the balance between doing enough activity to keep your muscles strong and taking enough rest so you don’t burn out. I find this difficult as someone who loves learning, working, sports and essentially most creative or physical activities. I’m constantly working on projects like my blog, or my social media and sometimes I forget that everything I do costs me energy. So recently I’ve been working on striking this balance by accepting the fact that sometimes I need to just say no to things; saying no to going out, to going to my usual clubs, and sometimes saying no to opportunities. Being able to understand and accept my limitations has been really valuable because it allows me to conserve energy for things I really care about and want to do.

Another thing I do to take care of my physical health is making sure I divide my time equally between being in a wheelchair and walking around. Since I spend most of my day at school in a wheelchair, I generally avoid my wheelchair outside of school. I’m extremely fortunate to be a ambulant wheelchair user and I often try to take advantage of that by picking and choosing when I’m in my chair and when I’m up and about.

I have found my mental health is much harder to take care of as a teenager with cerebral palsy. I have an amazing support network around me which makes life easier but I find that often having a physical disability takes a toll on how I manage my thoughts and feelings. As I previously referenced, my energy is really limited and this can make it hard sometimes to process everything going on which becomes stressful. I think because CP is so physical, people don’t consider the impact it has on our mental states. This as well as the social challenges and physical difficulties adds up and can ultimately be quite draining. But there are things that I have found that really help like trying to openly communicate how I feel to someone close to me just to get it out there, or taking hours out my day to just sit and watch TV and switch off. It sounds like common sense but I think people often don’t understand or downplay the mental side of being disabled.

Whether you’re disabled yourself, a parent or carer of someone disabled or even just know a disabled person, it’s important to understand how their mental and physical health may be impacted by different things and strive to be more accommodating of this.

Tags: Advice Information and Support, Cerebral Palsy, Education, Physical Disabilities, Support for Young Adults

Navigating my way through college – Ciara McCarthy

As part of Cerebral Palsy Awareness month, Ciara shares her helpful guide to help you through your time at college.

Hello, my name is Ciara McCarthy, and I am a college student with cerebral palsy, autism, and profound hearing loss. For a cerebral palsy month, I compiled tips to help guide you through your time at college as someone with cerebral palsy.

I began at college in the autumn of 2022, and these are things I found helpful in navigating my way through college.

Attend the Open Days of the college you’re going to.

  • It can be helpful to familiarise the surroundings and to communicate with lecturers and support staff. Often these open days have useful information about the course you’re attending, and you can ask questions

Get to know student advisors or support staff who will help you through college.

  • They can reassure you about your anxieties or support needs. Their job is to support you throughout your course. If you have specific accommodations, they ensure that you have them. The earlier you reach out to them, the quicker your Disabled Student Allowance can be processed.

Ask for a tour around the college.

  • This helped me visualise where the nearest lifts and classes were. You can get tours on open days; however, the person that supports you can have a personal one so that you feel more comfortable attending college.

Sit with people in the class.

  • As someone bullied for having cerebral palsy, it can be scary talking to new people all over again. Still, I have met incredible friends in my class; sometimes, overcoming your anxieties can help.

Join Societies.

  • Societies are a fantastic way to make friends outside of class. There are various interest-based and community-based societies. I joined the disabled students’ network, and it’s so much fun.

Don’t be embarrassed to use mobility aids.

  • If they help you, then use them as they are designed to support you. Please don’t focus on anyone else; it’s what supports you and keeps you safe.

Contact your guidance or support teacher if you’re scared about transitioning from secondary school to college. You deserve to have a smooth and safe transition tailored to your needs.

This is my personal experience at college, and it will not apply to everyone, but I hope this gives you some reassurance for your journey to college.

Tags: Advice Information and Support, Cerebral Palsy, Education, Support for Young Adults

Policy and campaign update

During the past few months, we have been busy keeping the needs of people with cerebral palsy at the forefront of the minds of statutory service providers and policy makers.

Our CEO, Stephanie Fraser, Chairs the Scottish Government’s National Advisory Committee for Neurological Conditions (NACNC). The committee is focused on ensuring Scottish Government implement the Framework for Action for Neurological Conditions which covers from 2020 – 2025. Cerebral Palsy Scotland has had some funding from this work to look at service provision for adults with CP through our CP Connect programme and this coming year we look forward to working with specific local areas (Health and Social Care Partnerships in Midlothian and in Clackmannanshire and Stirling) to develop this work further in a local setting. Scottish Government published a mid-term progress report on the implementation of the Framework in July: neurological-care-support-framework-action-2020-2025-midpoint-progress-report.pdf (www.gov.scot)

Cerebral Palsy Scotland are also members of the Cross Party Group for Disability in the Scottish Parliament: https://www.parliament.scot/get-involved/cross-party-groups/current-and-previous-cross-party-groups/2021/disability. At their latest meeting, MND Scotland presented the findings of their report on the housing needs for people with MND, some of which is also extremely relevant for people with CP.  You can read their report here: https://aaf1a18515da0e792f78-c27fdabe952dfc357fe25ebf5c8897ee.ssl.cf5.rackcdn.com/2256/MND-Scotland-No-Time-To-Lose-Housing-Report.pdf?v=1646301622000

The All Party Parliamentary Group (APPG) is forum for everyone across the UK to come together at Westminster.  The group’s purpose is to enable policy makers to better understand the challenges faced by individuals of all ages with cerebral palsy and their families. Importantly, it has been constituted to take a life-long approach. The group has already published three reports, the first on early years, the second on best practice in education, health and care, teaching and learning for children with CP schooling and most recently a report on removing barriers for adults. The group is currently calling for evidence with regard to transitioning from children’s to adult services and will meet again in September to discuss this.  To read these reports, you can find them here: https://connectpa.co.uk/appg-cerebral-palsy/

We were delighted to be involved in the Royal Society of Medicine’s conference on 7th July Medicine and Me: Time for a new approach to adults with cerebral palsy with UP – The Adult Cerebral Palsy Movement.  Speakers included contributions from Cerebral Palsy Scotland trustee, Dr Kirsty Colquhoun and CEO, Stephanie Fraser.  A copy of the event recording can be accessed here: https://vimeo.com/732291911/4db25bfc7d

 

As members of the Neurological Alliance of Scotland, Cerebral Palsy Scotland welcomed last month the publication of the first patient survey undertaken by the Neurological Alliances from across the UK.  The report (which can be read here: https://www.scottishneurological.org.uk/news-resources/) highlighted that 1 in 6 people across the UK are living with a neurological conditions and that at least half were continuing to experience delays to accessing appointments and services.  The publication of the survey coincided with Carers’ Week and a debate in the House of Lords on neurological conditions to which our CEO, Stephanie Fraser contributed: https://hansard.parliament.uk/Lords/2022-06-09/debates/B6CB63B1-B491-4A14-B4EF-E6D382CEF6E8/NeurologicalConditions. We look forward to building on this growing evidence to ensure improved data collection so that people with cerebral palsy become more visible to service providers.

Tags: Cerebral Palsy, cerebral palsy scotland

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

Apply for Better Start

Better Start is open to children with cerebral palsy age 2-14, with places funded by National Lottery Community Fund available for those living in the Greater Glasgow and Clyde health board area. This includes families from: East Dunbartonshire, East Renfrewshire, Glasgow City, Inverclyde, Renfrewshire and West Dunbartonshire.

We will be able to see a number of children from other areas if they are a strong fit for the programme, with support from other funders.

The project is fully-funded by the National Lottery Community Fund and others funders, so is free for families taking part.

What is Better Start?

Children and their families will work with our team of specialist therapists over the course of a number of sessions.

Therapists will support each child and their family to solve everyday problems – daily activities or things the child might find challenging because of their cerebral palsy.

Sessions will be personalised and tailored to suit each child’s individual needs, and those of the wider family and support network.

The aim is to ensure each child participating in Better Start becomes better connected and confident within their own family and school community, and feel more able to take control of their lives.

Sessions will also support families to help them know how best to support and enable their child to achieve to the best of their ability.

How can I apply for a place on Better Start?

Please get in touch to find out how you can get involved. Contact us on info@cpscot.org.uk or call 0141 352 5000.

Tags: Cerebral Palsy, Glasgow, Physiotherapy, Therapy

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