Cerebral Palsy Scotland

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/

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.

My cerebral palsy is a part of me – Barry Smith

As part of cerebral palsy awareness month, Barry has written a poem titled “My Cerebral Palsy is a part of me”. 

My Cerebral Palsy is a part of me.

Many people who don’t know me might see me in my power wheelchair and feel sorry for me.

Thinking I don’t understand what they are saying to me and what I don’t like because I can’t walk, and many people can’t understand what I am saying to them.

Yellow sky lights up when I got my high text communication aid, that has speech output on it after I type into it what I want to say.

Cats and Dogs like getting patted on the head but I can’t stand it.

Eyes might look but people may not want to ask what is wrong with you. It is the wrong thing to do in my eyes, that aren’t green like my cat.

Run away, I can’t physically do but in my mind, I can be who I want to be.

I want people to see past my physical disability and see me for the person I am.

I can hit a ball with my wheelchair, which feels good too.

A happy day is when people see me for the person I am.

Love shows from my heart because I am so happy when people see me for who I am.

Love shows in my eyes, people can see this which is so nice for everyone too.

People may walk by me and feel sorry for me. I don’t like that because I am a person who is just like you too.

A great person, I am. No need to look at my physical disability.

Love and understanding are what I need in my life, which is a gift of life.

Yellow sunlight helps me in my life and make me feel so happy.

I open my eyes each morning and try my hardest to do what I can in my life.

See me as a person, for who I am.

An apple might be hard to eat, but living with Cerebral Palsy is the same – but so good too.

Barry Smith

Accessible adventure holidays at Calvert Trust Kielder

As part of cerebral palsy awareness month, Barry Smith has written a blog to let people know about the accessible holidays on offer at Calvert Trust Kielder.

Twenty minutes over the England border from Scotland is a bit which is called Kielder and it has the biggest man made loch in the U.K. As well, it has one of the best holidays for disabled people and their family, who is all ages.

In this story, I am going to tell you about all types of holidays you can have here.

I will start by talking about the little log cabins that sleeps up to six people which has anything you need for a disabled person so they can have a holiday with their family.

If you don’t want to stay in the main center and you’ve got support, there are small flats you can get with everything a disabled person might need, and bigger door ways so a wheelchair user can get access to everything they needed.

If you want to be a part of anything at Kielder, please let the main office know and they will try to plan it for you, and tell you where to meet the staff member to support you.

Now on to respite holidays which I know more about myself because I have been on them three times already and got one booked for this year. This holiday is for over 18s only who have 24-hour support and care. When the person books this they will be asked to fill in a care plan for them to let the care staff know what kind of support the person might need when they’re there, like if the person might need support to get up in the morning and getting washed and ready, don’t worry the care staff can do this for you. You also get three meals each day.

As well as that, you are doing two fun things each day, such as:

  • Swimming pool
  • Going out on golf buggies
  • Climbing wall
  • Abseiling
  • Going on a Move Boat
  • Canoes
  • Zip wire

As well a lot more things but I am not going to tell you so you can go and find out for yourself.

One more thing before I go, when you are booking the holiday they will ask, does the person need to be picked up and dropped off again after their break. If they do they can do it up to 50 miles. Some people like me go on the train.

For more information, visit Calvert Trust Kielder website.

Going to school with cerebral palsy – Melissa Cassidy

As part of Cerebral Palsy Awareness month, Melissa shares her experiences of education as a person with cerebral palsy.

Melissa is a young author and disability activist. Growing up, writing was the most effective way she could communicate. Melissa has her own blog called Buttons and Ramps which you can find here – https://buttonsandramps.wordpress.com

Going to school with cerebral palsy – Melissa Cassidy. 

School – the foundations of almost every modern life or at least somewhere parents can temporarily abandon their annoying children. Regardless of how you see it, everyone has a different experience of school. When you have a disability though it adds a whole new layer of physical, emotional and social challenges. I want to share my experience of education in the hope that it illuminates what going to school can look like when you have a disability.

Let’s start at the beginning: after a traumatic birth my parents are left with a (abnormally good looking) disabled baby and a future of uncertainty of what my life was going to be. They didn’t know where to send me to go to nursery until the health visitor suggests a special nursery conjoined with a school called Kelburn Park. My parents didn’t know too much about disability but decided to check it out as an option. My mum tells me that the first visit we had I came out with a beaming smile and begged her to let me go there. The nursery was perfect for me and I honestly don’t have one bad memory of it. My mum said it was quite scary at first as they collected the kids from their homes to take to nursery and she didn’t enjoy having to hand me over every morning which is ironic because she’d probably love a moment of peace like that nowadays. I was a really happy, outgoing child so at nursery I could often be found pretending to perform plays, writing stories and painting.

Special nursery was definitely the right place for me but things changed when I went into primary one at the special school. While I was having fun, my parents grew concerned that by Christmas in primary one I hadn’t really developed my reading skills and by the end of the year they made the tough choice to move me into mainstream school. While this wasn’t easy, they felt I needed the same level of education as my sister. Ultimately this was the right decision, although I was starting a year late I settled in really well. This kickstarted the phase of me realising that I was different to my peers which got me down for a few years and definitely affected the way I felt about myself but I was fortunate to be relatively included and accepted by my peers and definitely flourished at my primary school.

Then came Secondary school and this is where I really started struggling. The first year at Secondary school, I found it incredibly difficult to make friends as I watched most of my other friends find other friendship groups while I struggled to speak to people because I was so self-conscious. This also resulted in me having some resentment against my helpers at school because I just wanted to be “normal”.

Looking back, I wish I had had better role models and more confidence as my lack of confidence then has definitely had a ripple effect on where I am now. Eventually I had to let go of the internal desperation to be like everyone else and this is where I started forming better relationships with my assistants and even made a few friends. Forming that bond with my assistants especially my closest one whom I often refer to as “my second mother” was crucial to me getting my confidence back.

Another thing that had a huge impact on my confidence was the arrival of a new drama teacher, in the space of a month I went from silently loathing drama to confidently laughing and performing with my class. Once I felt that encouragement nothing stopped me and I actually ended up getting a drama qualification two years after.

What I’ve learned about going to mainstream school is that confidence in yourself is everything. I lost a lot of time in my life being self-conscious and not wanting to put myself out there when that is the only way you are going to thrive in a mainstream school. My family and I have all been through an incredibly transformative journey as I’ve gone through school but the opportunity to get that mainstream education has been entirely worth it.