As part of Cerebral Palsy Awareness Month, Katherine Toomey shares her experiences of accessible camping at Badaguish Outdoor Centre.

In September last year a friend and I went camping in the Cairngorms near Aviemore. Aside from being abandoned when trying to return on the train on the Sunday because Scotrail hadn’t told us about planned strikes it was really quite good.

The campsite we stayed at was great and has a mixture of camping spots, wigwam pods and forest lodges which would also work with a disability. They are also investing in some pods that are wheelchair accessible for future. There are disabled loos and showers on site and kitchen areas guests can use which are wheelchair accessible. The staff are also super helpful which is a real plus. Check them out at https://badaguishoutdoorcentre.org

Nearby there are accessible trails into the woods which can also leave you back lead you back to Aviemore and other interesting places such as a little cafe we found near Glenmore. The Pine Martin Bar and Scran did decent food and camping supplies as well as having a disabled toilet and fairly interesting decor.

For those of you wondering how I managed paths in a manual wheelchair, I was lucky enough to be borrowing a power pack at the time and I took the detachable handle of my wheelchair which meant my friend could push me when the terrain was too steep or gritty underfoot to work with the power. Another question I get a lot when camping, especially as I don’t have a car, is how on earth I carry enough stuff to do a trip like that. Safe to say my wheelchair is pretty used to being deployed as a pack horse!

Having lived all my life as a wheelchair user, I am very aware that even in Britain it is hard to find a good, affordable and accessible holiday accommodation so I hope this blog gives you some food for thought.

Following on from her interview with dancer Eilidh Elizabeth Molly McGrath, volunteer Bernie Hunter meets frame runner and PLUS volunteer Harris Menshawi to find out more about his life and experiences living with cerebral palsy.

Recently, I interviewed a young man called Harris. During the COVID-19 lockdowns, Cerebral Palsy Scotland set up weekly zoom calls for people to keep in touch and we both attended virtually. I was really interested to find out more about Harris, his disability and obstacles.

Harris has cerebral palsy which affects his movement and speech. The right side of his body is particularly affected meaning his hand control and walking is challenging – it can make him feel really tired so sometimes, he will use a wheelchair or a buggy to get him around.

I wanted to get Harris’s thoughts on how people act around the subject of disability, he explains that society is usually pretty good. Harris is very independent and can go out on his own. If he has to ask someone for help – they are keen to give him a hand. Communication plays a big part. Being very sociable, Harris is happy to chat to people which helps break the ice.

We all have an activity that we like to do and going to the gym is a favourite of Harris’s. He enjoys going to a class once a week called RPM which gives him the opportunity to cycle. Harris is also a valued volunteer at the Forth Valley based charity, PLUS. This is an organisation that supports children and young people who have disabilities – providing activities such as bowling, games, theme days and playing the Wii. Volunteering once a week, Harris only used to work with teenagers but now he also supports the younger age group. During the pandemic, PLUS had to put their services on hold meaning that Harris couldn’t go volunteering and he admits that this was tough – he can’t wait until he can return.

Another activity that Harris enjoys to do is frame running, this is a three-wheeler bike, but it doesn’t have pedals which means that you can run with it. He can complete 60m to 1500m and feels that the longer the distance, the better – “it’s not about beating others, it’s about beating your best time”.

Harris is pleased that things are slowly returning to normal after the pandemic, even though it was a really bad situation for everyone to be in, he explains that he learnt to be patient, became closer to family and found new ways to keep in touch with friends while finding a love for nature.

Looking back, Harris attended college and studied a Media Degree. But he felt doubted by the head of the department as they didn’t think that he could be successful. Attending a meeting with his family and another college lecturer, Harris was told that he couldn’t do it and he should be part-time. Harris only missed getting the degree by three units. After this, the stress caused by the college and lack of support really had a negative effect on Harris, knocking his confidence and bringing sadness. He decided studying wasn’t for him. Unfortunately, he has found himself in similar situations, but he doesn’t reflect on them otherwise it would get him down and that is no way to move forward.

To end this blog on a bright note, Harris says that he tries to see the positive in life – if people can’t be nice then it is their problem and not his which is spot on. Harris is a good person and always tries his best – Thank you to Harris for participating in this blog, I will leave you with a quote from the man himself:

“Disability is not the end of the world it’s part of me, part of my life – it is thanks to my disability that I have great friends, do a great sport and I’m in a volunteer job I love.”

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.

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 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.

Having 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!”

Andy Tomlinson writes for us about the physical and emotional journey he went on that led to him completing the Berlin marathon earlier this month.

It took me 38 years to get to the finish line of the Berlin. A decade ago it was a journey that was impossible to imagine. Maybe a prisoner of my own thoughts and social anxiety I found solace in my own company and a games console; a sterile environment where I had control of what was allowed in my world.

Maybe in some ways I was hiding from myself. A boy divided, not sure of who he is. A boy – bearing in mind I’m 28 at this time – held captive by his cerebral palsy.

4:18:45 I crossed the finish line in Berlin. I was hoping for a sub-four but, a combination of a slight injury three weeks before the marathon, the outrageous heat and humidity, and possibly the fact I’ve not quite worked out a strategy to both hold and intake the energy I require to take into account my increased muscle tone and my unique running gait. Two years previously I would have been happy with five hours, maybe 5:30, but as it turns out I am quite competitive with myself.

A far cry from 10 years ago when I had a bilateral fracture of my femoral hip. Lucky for me the fracture was on my left side affected by hemiplegic cerebral palsy, which in this case also meant that my brain did not receive any pain signals from my fracture. I lay on the street not being able to move, thinking I had a dead leg.

I don’t know why but from the hospital bed came up with idea of climbing Kilimanjaro, then the Great Wall, then from that I found myself completing a marathon in the purple vest of Bella Road Runners.

Fast forward ten years. I’m exhausted, sitting on the curb head bowed looking down the road, looking at fellow runners stumbling over the finish line being sick, and sitting in a heap. Only a few hours later, they’re walking around Berlin and its seemingly infinite number of stairs, grinning ear to ear showing off their medals, a token of their own struggles and sacrifice. We ran as individuals but also together, feeding off each other’s stories.

Why do I put my body through so much? Kilimanjaro was a two peak 12 day hike, the marathon was three months training where accumulation of fatigue builds and builds in the hope you can run 26.2 miles under four hours – and I’m disabled.

One reason is maybe my relationship with CP? I don’t know, once upon a time I thought it was something to hide from, then to fight against, but as I’ve got older I think I’ve went through a process of reconciliation. I learn more about myself with every km I hike, run or shuffle.

It just so happens that sport or physical activity is the mediator of my sometimes strained relationship with myself, a disabled person with cerebral palsy. Maybe that’s why Berlin was the perfect place to complete my first marathon. A city once divided from itself by a wall of cold concrete. The Berlin Marathon crosses where once the wall physically stood on multiple occasions. Like acting out an elaborate metaphor, the reason I ran Berlin marathon was to bring down the walls within my mind, like the journey Bob Geldolf undertook in the Pink Floyd movie “The Wall”.

Often maybe I’m detached from how I feel, paralysed by my ability to see every “What if…” scenario and have been guilty of being like The Watcher from Marvel comics, and thus world passes me by.

That is when I’m not participating in sport. Everyone has a unique language, mine has its roots in endurance. I like the idea of planning a four hour race or two week hike – it’s an endeavour both me as a person, and more so a person with CP, cherishes. My muscle tone relaxes, I can hear the crowds cheering and the jazz band playing as I navigate Berlin, I can see the Bundestag, the boats taking tourists a ride through Berlin’s waterways. I can marvel at the Berlin Dome and full 355 feet of the radio tower in Alexanderplatz. Running alongside people from all over the world, Italy, Mexico and Peru, connected by 26.2 miles of flat road, sun and my inevitable sunburn. I connect with people along a journey that’s shared by 20,000 to 40,000 whether running or lining the streets. After a year of pandemic induced isolation. We experience the joy of shared exuberance, of heading towards the finish line together.

As I run both my cerebral palsy and I become one and the same. Reconciled shuffling the same journey, marathon is like a microcosm of life – everyone is heading in the same direction even amongst our various differing stories.

However the most important reason why I’m a marathon runner with cerebral palsy and indeed like trekking, is that it highlights the importance of community in increasing accessibility. People build walls and take down barriers. I’m a CP runner so I can run with people on their own journey. Well for 26.2 miles at least.