In the spring, I interviewed a woman called Kirsty who I have known for several years. We first met at an inclusive dance group with the organization Paragon Music, and we have kept in touch regularly since. I thought it would be good to hear from Kirsty and her experiences of living with a disability.

Kirsty has cerebral palsy which affects her mobility, speech and she also has some learning difficulties including long term memory loss, reading and writing. Walking and communication can be challenging at times which means that Kirsty finds getting from A to B hard by herself. She uses a walking frame to support her to walk but explains she can’t walk unaided. Kirsty has one personal assistant who supports her for a certain amount of hours during the week, they help her to keep track of everything as her CP also has an impact on her day-to-day life and organization skills. Kirsty has a very supportive family who are always there whenever they are needed to help her – she lives a very busy life but just needs a bit of assistance from time to time.

I was interested to get Kirsty’s thoughts on how society acts around disability – she explains that most people are overly nice because she is disabled which is annoying sometimes. She has noticed a difference in people’s attitude since before covid. Pre pandemic it seemed people were getting a better understanding of disability, but Kirsty says she feels that it has gone back the way which is interesting. There is improvement that she is noticing but still a long way to go as people assume that CP affects everyone in the same way which isn’t true at all and finally, people always see somebody who is disabled and expect them to be in the para-athletics which is frustrating as you just want to live a normal life.

Kirsty works five hours a week at H1 Healthcare as a data analyst, she got chatting to a woman who works there at a ‘Bobath Ball’ and went for the job interview a week later which was successful. Kirsty loves to help others in any way that she can and volunteers at the Royal Hospital for Children in Glasgow. Her role involves interacting with the kids and keeping them occupied while they are attending the outpatients waiting area – this lets Kirsty use her childcare qualifications too but unfortunately her volunteering is still on hold due to covid.

Kirsty lives an active life; she enjoys attending an art club once a week and has an interest in sport- she is part of red star athletics and a Paralympic futures academy where she trains to throw the discus and the cub. Fitness comes into it as Kirsty goes to the gym and swims too, so it is a full package. Out-with these activities, she has a love for baking, cheering on Glasgow city football club and going on trips away to the Scottish islands.

Kirsty has recently moved into her own accommodation, so I was really interested to hear about how she was doing – this was a big move for Kirsty, she was very anxious and nervous but also excited at the prospect of getting her own flat. At the beginning she explains how she was unsure of her surroundings as she is someone who gets lost easily so she got support from her personal assistant to learn how to get around using public transport etc.

Like everyone it takes time for you to settle into a new area and this was the same for Kirsty – she is now familiar with her neighbors and has met new friends. Everything about having your own house was on Kirsty’s mind especially paying bills on time but she was glad she was able to get assistance with this. The transition was different from what Kirsty expected as unfortunately she wasn’t living at her family home before she got her flat due to a house fire – so this made her moving experience easier. She is delighted with her own place, and it means a lot to call it her own home.

Thank you to Kirsty for participating in this blog, I will leave you with a quote from the woman herself “Don’t give up, live life to the fullest every day!”.

A Blog Post by Bernie Hunter

Volunteers’ Week runs every year between 1-7 June. It’s a time to recognise and thank volunteers for all they contribute to the voluntary and wider sectors, communities, and society as a whole.

Here’s one of our volunteers, Bernie Hunter, explaining why she volunteers for us at Cerebral Palsy Scotland.

“I started volunteering for Cerebral Palsy Scotland in 2017 but 22 years earlier in 1995, I was actually one of the first babies to attend Cerebral Palsy Scotland for therapy as I have CP so I have known about the charity for all my life.

“In my younger years, the charity really supported me so when I got older – I wanted to give something back.

“Pre-pandemic, I was in the centre every week at Cerebral Palsy Scotland. I enjoyed being in an office environment and having face-to-face communication with the fundraising team. Sometimes I would help out at bucket collections plus doing my own fundraising events for Cerebral Palsy Scotland.

“Like everyone else, I had to find a new way of working when Covid hit but I’m glad to say that it hasn’t stopped me from volunteering.

“I write blogs about everything relating to Cerebral Palsy, design images & videos for social media, fundraise, look for articles about CP and have recently started to interview other people who live with CP – giving them opportunities to share their experiences.

“It is a joy to volunteer for Cerebral Palsy Scotland – very rewarding. This is much more than volunteering to me.”

In this blog, volunteer Marion Burns gives her thoughts and reactions to ‘Jordi’s Letters’, a new documentary about a man living with cerebral palsy who uses a cardboard letter board to communicate.

In this blog I will tell you about an amazing and moving film I went to see in the Glasgow Film Theatre called ‘Jordi’s Letters‘.

My friend told me about this film. I thought that sounds very interesting, so I booked tickets.

When I went in the empty cinema with a handful of people, a Spanish man was speaking about the film as he was involved in the making of ‘Jordi’s Letters’. He is taking the film around Scotland.

As the film was filmed in Spain, the whole film is in Spanish so it has subtitles, however, these were not hard to follow.

At first I thought when the film started it might be very difficult to watch because of my circumstances at the moment,  but how wrong I was, I loved it from the start to the finish. The film just started with a hand pointing to letters and you hear someone speaking in the background and I felt it was a very powerful start.

‘Jordi Letters’ is a documentary about a man who is in his fifties, lives with cerebral palsy and has no verbal communication so he uses a very simplified letters card for his communication. The director of ‘Jordi Letters’, Maider Fernández Iriarte, talked to Jordi using his alphabet board which he spelt out every single word to her.

He was in a care home during the week to give his family a break as his parents were getting older.

Jordi told Maider that in the past he heard God in his head, but it had stopped and therefore he would like to go to Lourdes. You see him going through the Grotto in Lourdes and praying in church.

After being in Lourdes he felt as if he had God back in his life.

During the making of ‘Jordi’s Letters’ Jordi and Maider Fernández Iriarte became friends and she phoned him on his birthday. That was a nice scene in the film and after filming they are still good friends.

Many of the things in ‘Jordi’s Letters’ remind me of myself and my family, the way it showed you Jordi going through the Grotto brought back a memory of Dad and me walking through it with me out of my wheelchair, with Dad supporting me.

During the film I thought of many of my friends who would have enjoyed it .

If it ever came back to Glasgow again I would jump at the chance to see it for a second time!

(and I am not telling you how the film ends!)

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.”