Cerebral Palsy Scotland volunteer Marion shares her personal reasons for supporting World Cerebral Palsy Day on 6 October. 

Hello everyone. As we are coming up to World Cerebral Palsy Day 2021, I thought I would write a blog about why I think World CP Day is important for me.

This year, World Cerebral Palsy Day’s theme is “Millions of Reasons”, so what are my reasons to celebrate the day?

To raise awareness

It is very important for me to feel like cerebral palsy is recognised world-wide as a disability which affects so many people in different ways.  For me, especially lately, when I feel lonely, I often wonder if there is enough knowledge about cerebral palsy out there.

It will also be helpful for me to link up with other people with cerebral palsy at the Cerebral Palsy Scotland online conference, especially this year due to the pandemic and the lockdowns, as we have not been meeting up with many people with cerebral palsy to share ideas.

To drive a sense of community, and to reflect

World CP Day also makes you feel you are not alone dealing with the everyday challenges of having cerebral palsy. For me, this will be the most important issue of the day.

It’s also a chance for us all to think about our bodies, and how the last year affected you physically, due to not getting enough physio or even activities like swimming or going to the gym.

To celebrate achievements

World CP Day is a time to remember that, even with cerebral palsy, I have done so much. For example, working as a volunteer advocacy worker, volunteering at Cerebral Palsy Scotland, and being employed as a blogger. I’m also a wheelchair dancer and have attended wheelchair dance competitions in Blackpool. Plus, I was even brave enough to go on a zipwire at Calvert Trust, Kielder! These activities must be celebrated.

World CP Day is also a time to celebrate how far Cerebral Palsy Scotland has come over the years in developing their Adult Services, and I don’t just mean physio, speech and language therapy and OT, but all the other services they have provided for me, including help with mental health. Throughout the lockdown period they offered a weekly zoom session where you could talk to other people about relevant topics. And for people with communication aids, there is an AAC group where I had so much fun using my talker, especially one Christmas time, with the help of the speech therapist as we made up a song using our talkers.

What are your reasons for supporting World CP Day?

I  hope you will all be able to celebrate World Cerebral Palsy Day in your own way and I’m sure you will have many personal reasons to celebrate the day. HAPPY WORLD CP DAY WHEN IT COMES!

Cerebral Palsy Scotland volunteer Bernie shines a spotlight on World Cerebral Palsy Day, explaining what it is and how you can get involved.

The time has come around again where the world prepares to celebrate Cerebral Palsy. In my latest blog, I will explain why this day is important, tell you what this year’s theme is about and mention how I plan to mark the day.

As many people will already know, World Cerebral Palsy Day happens on the 6th of October, every year. It is a day for raising awareness and getting information out there about the disability in support of the 17 million people who have Cerebral Palsy around the world. There are many different ways to get involved and show that you support World CP Day.

In recent years, we have seen people taking to social media and sharing their CP experience. World CP Day is a brilliant opportunity to get information out to people about what the disability means and more importantly that CP doesn’t stop anyone from achieving wonderful things in life.

Millions of Reasons

This year’s theme from the organisers of World CP Day is called ‘Millions Of Reasons’ which aims to encourage people to share their own reason for marking World CP Day as well as telling their CP story.

Here are ways that you can share your reason:

• Share your reason for marking World CP Day on social media to reach out to your followers. Tag @worldcpday and use the hashtags #MillionsOfReasons and #WorldCerebralPalsyDay. Please tag us too – we are @CpScotland on Twitter, @Cerebralpalsyscotland on Facebook and @cpscotland on Instagram – and we can share your post to our followers!
• Put your reason on the map by going to the ‘Word Cerebral Palsy Day’ website and adding why you are marking the day
• Wear something green for the day and if you are asked why by someone, tell them the reason

This is such an important date in the calendar for everyone who either lives with CP or supports someone who has CP; it is a good chance to highlight what support services are available too.

Personally, this annual day is always top of my list – I feel very strongly about World CP Day as I live with the disability. In support of the day, I’m hoping to share my reason by making a video using my speech device while getting the point across that living with CP can be challenging but it doesn’t stop me from doing what I set out to do. The video will be posted on my own social media accounts so look out for it on October 6th.

Get involved!

We at Cerebral Palsy Scotland would like to know what everyone is planning on doing to celebrate World CP Day and what your reason is for supporting the day.

Let us know by getting in touch via our social media channels and tagging us in your World CP Day posts – we are @CpScotland on Twitter, @Cerebralpalsyscotland on Facebook and @cpscotland on Instagram.

Bring on World Cerebral Palsy Day on October 6th and share Millions Of Reasons in support of CP!

In this blog, Barry shares his experience of using Headspace, a mindfulness and meditation app, and how he feels it has helped him in his day to day life.

My name is Barry Smith and I am 42 years old. Down to me having Cerebral Palsy what is a physical disability I use a power chair and I use a communication aid too. Sometimes in my life I get upset – we all do.

A few months ago I was talking to someone about how I was feeling. After the person heard, they told me about an app I could download that is called Headspace. You can download Headspace from the app store.

It asks you to do five mins or ten mins each day. For the first ten days it is free. After the first ten days people can pay for the app or go back to the start to do the first ten days again for free.

Outcome of doing this app

By using this app when you have something like Cerebral Palsy I personally feel it helps chill you out. In your head/body, by hearing this app it might stop some jumping movements – this supports my everyday life. Don’t worry if you find it hard to close your eyes when they tell you, just try to look at something when the app is on, and remember it is your time.

Cerebral Palsy Scotland volunteer Bernie Hunter examines how accessible groups have coped during Covid restrictions, and recommends three great accessible groups that you might like to try.

Things are looking a bit brighter this summer and we are on the road to activities restarting after being brought to a halt due to the pandemic. It has been a challenging time for accessible groups to find alternative ways of continuing to provide services. In this blog, I will explain what these obstacles were as well as suggesting groups that are suitable for people who have additional support needs.

In spring last year when the country went into lockdown due to Covid-19, a lot of services had to stop including accessible groups. There are a range of clubs that provide activities such as music, dance and art – not to mention the social aspect of people coming together, which is really important. Like everyone, organisers had to find a new way of keeping their groups going but they had to make sure that it was inclusive.

Many clubs had to accept that they couldn’t have a social environment during lockdown so they turned to the online video calling platform, Zoom. It was a totally different way of working for both organisations and participants which required learning but thankfully they found new ways that allowed them to continue services and people could participate in activities, safely at home.

Here are some accessible groups that are available for people who have additional support needs:

Paragon Music

Paragon is an inclusive music and dance organisation that creates an accessible pathway into the arts. Professional musicians and dancers bring people together to create music and dance, helping participants to learn new skills and perform in front of live audiences. During spring 2020, it was clear that the organisation was not going to be able to run music and dance workshops in person so they turned to Zoom. To begin with, it was a challenge as not everyone has musical instruments in their houses so Paragon had to provide instruments and equipment. Despite the difficulties they faced Paragon still managed to operate by running their workshops online and presenting a range of fantastic livestreams on YouTube.

The Glasgow based organisation is located in the CCA in Sauchiehall Street and is hoping to restart workshops in person in the next couple of months. Check out Paragon’s website for details.

I have observed that I dance more in one place mostly due to the fact that I no longer had a partner to assist me with moving my wheelchair- Eilidh McGrath (talking about dancing on Zoom in her bedroom)

PLUS

PLUS is a charity that supports children, young people and adults who have additional support needs along with their families. Working across the Forth Valley, they focus on breaking down barriers when it comes to social isolation that many young people can face, and even more so during the Covid-19 pandemic. PLUS provides a wide range of services from social events to community activities and specific groups such as after school events. One to one support is also available within family homes and out in the community, and the charity also offers support to families which happens via their parent & toddler and the parent support group.

Based in Stirling, the charity provides the service across the wider Forth Valley which includes Falkirk. People can join PLUS through a referral which can be made by families, health visitors, social work or education. The services that PLUS deliver can differ, depending on where people stay and this is due to funding in regions. PLUS members have to supply funding themselves which can be done through their own budget or from social work. You can get more information on the PLUS website.

Like many other charities, PLUS had to stop their services in March 2020 due to the Covid-19 pandemic which meant having to cut down to just three staff members. The charity was delighted to receive Covid-19 funding which allowed them to reopen with more staff in June 2021. There has been changes in the way PLUS works, ensuring everyone has confidence when attending the services, such as new safety measures. During lockdown, PLUS was providing online services via zoom. Activities such as signing, music & quiz sessions. As restrictions start to ease further, PLUS is now building up to restart larger groups and provide more services like they did before lockdown. There is a substantial waiting list with lots of referrals but the charity is hoping to reduce the list, over the coming months.

When I’m at PLUS I feel happy it’s a great place to meet friends and have a laugh. We are like one big happy family when I’m working, I feel like I have a purpose to take care of the young people that I support -Harris Menshawi (PLUS volunteer)

Nordoff Robbins Scotland

Nordoff Robbins is a charity that provides music therapy sessions to people who are living with disabilities, people who are isolated or have life-shortening conditions. The charity creates an opportunity for people to go along to music sessions and try instruments, play with others and enjoy music. Nordoff Robbins work in partnership with a range of different organisations including schools, NHS and other charities.

The charity offers an Open Access service where people can make direct referrals in order to attend the music sessions- find out more information on the Nordoff Robbins website.

Nordoff Robbins has four centres across Scotland- Fife, Dundee, Edinburgh and Glasgow (currently closed to Covid-19 restrictions). The pandemic has had a big impact on the charity so Nordoff Robbins had to find a new way of providing music therapy to people. They have managed to continue a small service online using Zoom and Microsoft Teams.

I really enjoyed the music therapy sessions in school and online during lockdown. They were really fun and interactive and the people were so friendly! – Ryan Callaghan (Nordoff Robbins participant)

Cerebral Palsy Scotland volunteer Bernie Hunter writes about the impact that Covid-19 restrictions have had on disabled access to public spaces including pavements, shops, bars and supermarkets.

As the Covid-19 restrictions start to ease and things are becoming a bit more normal again I have been finding out about how the access world has changed slightly for people who use mobility aids, since the start of the Covid-19 rules. In this recent study, I will explain what the differences are when it comes to accessing places compared to pre-lockdown.

Over the past 16 months, life has looked a lot different for us all. We have had to get used to changes due to the pandemic. The restrictions were brought in to try and slow the spread of Covid-19 which was the right thing to do as everyone’s health has to come first. As the virus started to get under control, the hospitality industry was allowed to open but only to operate outdoors. This resulted in a lot of businesses having to set up tables and chairs outside their pubs and restaurants for customers. It was the only way that they could open. While this was all a better environment for people to be in, it wasn’t always the best set up for everyone.

People who use mobility aids have noticed a big access change when they are out and I’m not talking about places having disabled access – I’m actually talking about when someone in a wheelchair or a walker tries to go along a pavement. Most pubs have set up beer gardens right outside their venues which sometimes can mean that the table and chairs are directly on the pavement, not leaving enough space for mobility aid users to get by. Unfortunately, these changes have not been a plus for people with access needs. Although customers are apologetic (it isn’t anyone’s fault that there is obstructions) but this leaves the wheelchair or walker user feeling embarrassed that they have had to ask someone to move to let them past.

There has been changes in shops due to the social distancing requirement, some stores have made the aisles wider- this has benefited people who use wheelchairs as there is more room to get around the shop. This is a welcome change, but it isn’t like that in every store, some places have cut down floor space to allow social distancing to happen by putting up screens and barriers.

Parking has also been a problem for blue badge holders- the accessible parking bays are located near to the shops entrance but due to stores having to introduce a ‘queuing system’ and making sure social distancing was in place, a lot of shops blocked off their disabled bays to let more people queue. This left people with access needs with no choice but to park a bit away from shops.

Let’s talk a bit about how access has changed in eating places. One restaurant has unfortunately blocked off their accessible ramp and side entrance so that they can have a beer garden. This means people who use mobility aids don’t have suitable access into the restaurant. The venue has bought a portable ramp since, but it is very steep and dangerous… resulting in making customers nervous and requiring assistance to use it.

Considering the restrictions, everyone is more understanding that changes were needed to make places a safer place when Covid-19 appeared but we should remember that all of the world still must be inclusive. Everyone has a right to access, nobody should be faced with challenges when out and about.

In a recent Cerebral Palsy Scotland Twitter poll, we asked if people noticed a change in accessing places since the Covid-19 restrictions started- 60% said yes and 40% said no.

Thank you also to everyone who responded to our Facebook request and shared their own experiences of changes to access during Covid-19 restrictions – you made all the difference to this blog.