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Stories from the front line of cerebral palsy

Still from the film You've Got to be Ballsy

You’ve got to be Ballsy: Stories from the Front Line of Cerebral Palsy is a film that investigates the experiences of young people with cerebral palsy living in 2018.

The film was produced by Birds of Paradise (BOP), the only professional, disability-led theatre company in Scotland.

Presented by Jack Hunter, a young comedian with cerebral palsy, the film follows Jack as he speaks with a number of young people about the positive and negative ways that cerebral palsy has impacted on their lives.

BOP knows from its own research (Barriers) and from conversations with Cerebral Palsy Scotland that young disabled people and young people with cerebral palsy do not experience equality of access to the arts as audiences, participants or developing artists.  Neither do they have the opportunity to have time and space to explore issues of identity and perceptions around cerebral palsy outside service specific environments. This film helps detail some of the ways this actually manifests for people.

You’ve got to be Ballsy was funded by RS Macdonald Trust and supported by National Theatre of Scotland and Cerebral Palsy Scotland. It was made by Francisco M. Mallo.

Thanks to you I have my cheeky smiling boy back

Christmas appeal 2021

I’m Kirstie and I am mum to Mirren who is five and Fraser who will be four this month. Fraser was diagnosed with cerebral palsy just before his first birthday.

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

A passion for dance: interview with Eilidh McGrath

Interview with EIlidh McGrath

Cerebral Palsy Scotland volunteer Bernie Hunter interviews Eilidh Elizabeth Molly McGrath about society’s attitudes to disability and her passion for dance.

In recent weeks, I interviewed a young lady called Eilidh. Our paths have crossed as we both are part of a music and dance organisation – Paragon Music. I was really interested to find out more about Eilidh, her disability and challenges.

Eilidh McGrathEilidh has cerebral palsy which affects her mobility and speech. She has a number of different ways to communicate with people including using her own voice to say a couple of words, iPad technology, a laminated sheet with letters on it to enable her to spell out the word using her eyes, BSL and homemade sign language that her and her mum created. Eilidh uses a manual wheelchair to get about, she is able to self-propel for a short distance but as her right hand is slightly weaker than the left, she requires assistance to get about when outside.

I wanted to hear Eilidh’s thoughts on how society acts around disability- she explains that she feels that a lot of strangers still talk to her like she is a 2-year-old which is totally wrong. On the plus side, Eilidh does notice people speaking to her in a normal way and that is a big win. Another point that Eilidh made is that she finds young children staring at her and wants parents/guardians to seriously educate their kids about how to be when they see someone with a disability, and social skills come into this too.

As I said at the start of this blog, Eilidh attends a music and dance organisation. Paragon aims to make the arts accessible for everyone. 6 years ago, Eilidh came across the organisation- it was the Paragon M3 week at the Tramway, in Glasgow. The summer programme aims to reach out to young people who have additional support needs for the opportunity to learn music and dance. As soon as Eilidh got started at M3, she caught the dance bug and fell in love with the arts.

Eilidh McGrath ParagonHaving discovered a real passion for dance, Eilidh wanted to study Higher Dance at school. In 2019, she contacted the SQA (Scottish Qualifications Authority) to ask how she could do the course as she has cerebral palsy. They requested Eilidh to send in a video of her dancing and that is exactly what was done. Unfairly, from the video alone the SQA decided that Eilidh would never pass the dance course and the reason was that they couldn’t mark her posture, musically or focus. Eilidh was really upset about this, the fact that they never even gave her the chance to try the course.

Eilidh is an intelligent woman that doesn’t let her disability hold her back in life. She has many skills including speaking in different languages and enjoys dancing with Paragon. Dance was the main activity that Eilidh missed during the Covid-19 lockdown, it was a long 18 months but thankfully the M3 programme was able to continue online. But this way of working came with challenges too. Eilidh had to work with one of the Paragon mentors so they could assist her to communicate, as using an iPad wasn’t always possible when Eilidh was dancing.

Thank you to Eilidh for participating in this blog, I will leave you with this quote from the lady herself – “I may not go places on foot but that doesn’t mean I don’t go places!”

Milly MacKinnon | Centre Manager

Image of Milly MacKinnon

Milly had a successful 30 year career in IT, delivering and implementing projects for many companies including Capita and NHS Education Scotland.

In 2019, Milly moved to the charity sector as the operations manager for the Renfrewshire Foodbank, playing a key role in operations during the Covid-19 lockdown, ensuring services continued to run for the most vulnerable.

Joining Cerebral Palsy Scotland as the Centre Manager in September 2021. Milly looks after the day to day running of the centre, managing the administration team and providing support to the CEO.

In her spare time, Milly is very active with Girlguiding in Paisley having been a volunteer for over 20 years, running rainbow, brownie, guide and ranger units.

 

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