Cerebral Palsy Scotland

Support and advice for parent carers

June 5-11 is Carers’ Week. As a parent carer, feeling supported and having someone you can ask questions of, get advice from, or just vent your frustrations to, is so important.

If you’re a parent carer of a child or adult with cerebral palsy, here are some places to get support and advice:

  • Your local Carer centre will be able to support you in lots of different ways and maybe can put you in touch with local parent carers.
  • Our Cerebral Palsy Support Coordinator is a listening ear, advising people with cerebral palsy and their families about services and organisations that can support them. To get in touch with her, please contact us.
  • Our Support directory lists lots of organisations and services available in Scotland that can support you and your family.

More information and resources are also available on the Carers’ Week website.

My experience with accessible train travel

In this blog, Barry writes about his recent train trips, and his experiences of the new system for accessing ramps when you’re travelling by train.

My name is Barry Smith and I have cerebral palsy, which means I am physically disabled and I am in a power wheelchair.

Some disabled people might think they can go on a train no more because they heard the personnel who work at their train station can’t get the train ramps out anymore.

Now, the person who takes the tickets on the train gets the ramp out. I think this works better because the personnel who work on the train know which stop the disabled person wants on and off at. This means the personnel who work in the train office can get on with their job.

In the last six weeks, I have been on a train three times, here where I am being and then finding out. First, I went from Irvine to Glasgow with the ramps and it all went well, then I went back to Irvine on the train which were a great day. I book the trains ramp to do this two days before, which is great times, then I went to Ayr on the train then back to, which was a nice day out as well.

Four weeks later I went from Irvine to Glasgow then a wheel around to Queen Street to get a train onto Edinburgh W to get the Newscastle train – all the ramps were booked to let me get on and off each train with my power wheelchair at the right stop, everyone were there at the right time for each train to get me on and off in time.

My plan went so well and I met the man off the train who took me to where I going for a respite holiday for a week. After I was on my holiday I went back for the train – everything was booked like before to get me back home again.

More information on accessible travel with Scotrail can be found on their website. 

Straight Talking group – my journey with Dundee University

The University of Dundee has a long history of research into Augmentative and Alternative Communication (AAC) – ways to support communication for those who have difficulties using speech.

AAC user Alan McGregor writes about he got involved with Dundee University and their Straight Talking expert user group.

I first got involved with Dundee University in around 1986 when my speech therapist asked Dr Norman Alm from the computing department at the university if he would like to help me in school with my new speech device which was a Vois135. Dr Alm helped me with storing different words and phrases and where they were saved in the vois135 for me to find and use.

We grew to be good friends over this time and in 1989 I asked if I could help out with him working on Augmentative and Alternative Communication (AAC) at the University. The first project we worked on was software called Floorgrabber which we started from scratch which was used on an early Apple Desktop and a laptop computer. We took this software to the United States, Australia and Japan in the early 90s to demonstrate how it worked with me giving talks to Speech and Language Therapists and AAC users. I mostly talked about my swimming career and the work we were doing at the university.

In 1990 with the university team we travelled to Stockholm, Sweden. At this time I think there were only two or three AAC users working with Dr Alm at the university and we attended the International Society for Augmentative and Alternative Communication (ISAAC) conference. This was an eye opening experience for me, seeing all of these AAC users in one place, all using different hardware and software to enable them to speak. Not to mention all of the AAC specialists, Speech and Language therapists, software and hardware engineers and doctors, all in one place, all with same aim… to help people to talk.

Over the years I continued to help out with the University, giving talks, testing software, developing ideas and attending conferences. In 2010, Professor Annalu Waller started the Straight Talking Group. This helped us to attract some more AAC users to work with the University which gave us a larger range of experiences and ideas to work with.

Around that time, Professor Waller started the Straight Talking Group working on a new project. Annalu asked the group if we would be interested in doing sessions with student doctors which would involve giving a short presentation and meeting with them in small groups to encourage them to ask us questions and have conversations with us about our experiences in hospitals and local practices. The purpose of these sessions was to help the students understand what difficulties they might face when they treat or diagnose a non verbal communicator. Members of the group were able to retell stories about communication aids being locked away for safe keeping, not getting meals and not being spoken to directly, the doctors would speak to the parents and carers. These sessions give the students a bit of experience at communication for when they later may have to help someone else who does not talk. I feel that these sessions can be very helpful for the students and we all hope that it is of some benefit to others like us. We still do these sessions every year with 2nd year and 4th year medical students.

The group continues to work on software development ideas, some of our suggestions are offered to computing students to work on as projects for their courses. We have in the past been approached by software companies to do user testing and feedback. The software testing and idea development is my personal favourite part of it all, I love to see an idea we have come up with turned into a reality.

There is a lot of talk around Artificial intelligence and how AI can help with AAC, I had proposed a software idea in the past which would use AI/speech recognition to “hear” the conversation and offer real time suggestions to enable an AAC user to join in with the conversation much quicker. This is an area which I hope can be developed by some very clever people to help us communicate much faster than we can right now.

At the moment the group is working towards a mentoring qualification which ties in to the sessions we are doing with the student doctors as we have a mentoring role with them. In the future I hope we can also use the mentoring qualification to help other non verbal communicators to build confidence and realise their potential.

More information about how to get involved with the Straight Talking Group can be found https://aac.dundee.ac.uk/stg/

Read our latest news and stories

Our spring newsletter is packed with stories about how your support is helping children and adults with cerebral palsy in Scotland reach their full potential, as well as all the latest news from Cerebral Palsy Scotland.

“Without Cerebral Palsy Scotland the world would be a much more challenging place”

In this edition, Zoe shares her experiences of accessing specialist therapy at Cerebral Palsy Scotland. She talks about how the team here have really helped her physically and mentally since she had two hip replacement operations.

“I definitely learned things I would never have thought of doing”

We also hear from Kerin. Her daughter Mirren came to outreach sessions that our therapy team ran in Dumfries late last year. Kerin was able to learn skills to help support Mirren develop her standing and use her right side to play with toys.

March is cerebral palsy awareness month and our newsletter also updates you on our social media campaign to raise the voices of people with cerebral palsy in Scotland. There’s also a round-up of our latest campaigning and policy work, as well as upcoming fundraising events you can get involved with.

Read spring newsletter

What does independence mean to me? – Melissa Cassidy

As part of cerebral palsy awareness month, Melissa Cassidy has written a blog about independence and what it means to her. 

What does independence mean to me?

As you grow up with a disability there’s always increasing questions that arise in yourself and from others about how independent you are going to be in life. There’s always the assumption that you as a disabled person don’t have the same desire as others to be independent which can often be quite harmful and discouraging. I think this belief comes from the idea that most disabled people lack ambition – for most people this couldn’t be further from the truth.

Independence is a very personal concept and no two people will have the same definition of independence. For example, when I was seven years old I thought independence was being able to get dressed myself, when I was twelve I thought being able to take showers and baths myself was independence and now I see it as being in control of my week and doing things like studying and writing. I’ve learned through this that independence is subjective. Personally I’m very ambitious so often I can inflate my definition of independence which can become overwhelming; I think this is because I’m lucky in the abilities that I do have and as a result of this I push myself. Overall though, you can’t define independence or say who is or isn’t independent.

If we want to use the arbitrary scale of independence though – I’d say I am fairly independent. I’ve had my house adapted to allow me to do essentially all my personal care myself which I’m really thankful for. I go out with friends myself and I can use public transport safely. Keep in mind that I’m 17 now so all this has been gradually worked towards and nothing has come easy. I am still working on learning kitchen skills though and currently this is what I think would limit me from moving out (a huge personal goal). I also can’t do my own hair which is why I’ve kept it short for most of my teenage life although I have started growing it out in determination to find a solution. Sometimes I find it difficult to accept that I need help because I am so desperate to be prepared for adult life.

There’s also very much a social pressure to be independent when you’re disabled. It’s almost like people see those who manage the stereotypical definition of “independence” and are disabled as better than those who don’t which is pretty absurd. I often get asked a lot nowadays questions like “how will you get a job?” Or “how will you live alone?” And while these aren’t asked with bad intentions I think it’s quite rude firstly to assume that everyone must follow these paths and secondly to assume that disabled people can’t achieve these things. Judging people based on they’re “independence” is also really hypocritical in the sense that if a disabled person can’t dress themselves they’re seen as not “independent” but if an able-bodied person breaks their arm and can’t dress themselves we don’t suddenly think if them differently or imagine their lives differently.

Ultimately independence as a disabled person is about achieving the goals you set for yourself as opposed to living up to a societal standard of what you should be doing. It doesn’t change who you are because in my opinion a person is what they can do, not what they can’t.