AAC - A User’s Perspective, by Barry Smith: ISAAC 2010
My name is Barry Smith and I am 31 years old. I have travelled from Ayrshire in Scotland — a long journey. I am delighted to be here and want to tell you, not about my journey by air and road, but about my personal journey as an AAC user.
I am a long term AAC user as I have Cerebral Palsy which makes my speech hard to understand. I have been using different types of AAC for most of my life. I started off using a low tech system called Bliss and I now use a Lightwriter SL40. This is the story of my journey incorporating life changing events such as leaving school, attending college, moving from care into my own house and becoming independent. More recently I have experienced the challenge and enjoyment of talking at Communication Matters in United Kingdom. None of these things would have been possible for me without my Lightwriter.
My first experience using augmentative communication was at the age of about 3 years I old when my speech therapist tried to introduce me to using signs. This wasn’t any good as my hands were too jumpy because of my disability. Next, I was introduced to Bliss when I was about 3 years old and was able to use this very well to help me communicate. Using Bliss was a good experience for me, however I felt it had some limitations and as I got older I felt that it made me talk in a child like way.
After I left school I moved back home to Ayrshire and met Linda Page, a Speech and Language Therapist from NHS Ayrshire and Arran. Following an assessment, we agreed that a Lightwriter SL35 would be the most suitable communication aid for me. I liked it because it was small. Shortly after I got my Lightwriter, I started my course at Motherwell College. It felt good using the Lightwriter — it made a difference to me that people weren’t standing over me reading what I was saying which is what happens when you use a low tech system.
The next change for me was that my Lightwriter was mounted onto my wheelchair — the type of mounting system was very important to me as I need to be independent in getting in and out of my chair myself I didn’t want my Lightwriter mounted to begin with as I thought this would stop me getting in and out of my wheelchair myself and then or immediately being able to get going with my lightwriter in place. However, we looked at different mounting ideas and came up with one that I could swing away myself, so staying independent. Being independent is very important to me.
I used this SL35 Lightwriter for years and loved it.
After I left Motherwell College I did different things with my life before moved into Red Cross House in Irvine. One day one the support worker told me she has a new job, working with a new project what was coming into Red Cross. It was called Gateways project for people whom were I6 to 26 years old. It’s aimed to help people identify what they wanted to achieve in life. I asked if could I take part in this being 22 at that time?
After being part of this project for a year I was out with a support worker from gateway when we saw notes about a course which was called Partners and police making for people who have a physical disability. I signed up for this. With Gateways support I was able to get a place - I was thrilled as there were only 40 places for people from all over Scotland. The course was held over a number of days across a year. I got a lot out of this including networker support and person centred planning.
I was able to learn new skills, make contacts and move towards making my life better. I think that taking part in these groups would have been so much more difficult without a voice out-put device. In fact, without my Lightwriter, I don’t think I would have been able to take part in the project.
All through this time, my goal was to get my own home.
Eventually I achieved my goal and moved into my own home - there were problems along the way over adaptations to the house and my mum had to stay with me for 3 months until all of that was sorted out. I also had some problems with local youths. This was not a nice time for me, my first experience of living alone. However, Again, technology came to my aid and I was able to get help with my alert button and, most importantly tell family and the police about what had happened using my Lightwriter. The police were very helpful and I even made the local papers which let the public know the problems I was having. When the newspapers came out, everyone knew my name - it was like I had been on Big Brother!
Once I was settled and living independently in my own home, I needed a new challenge and decided that sharing my experiences as an AAC user by talking at a conference was the next goal I wanted to achieve. So, in 2008, I submitted an abstract to Communication Matters to speak at the conference. My abstract was accepted, and Linda and I contacted Toby Churchill Ltd to ask for their help. I was thrilled when Toby Churchill Ltd agreed to support me to attend the Communication Matters Conference in the United Kingdom. This was another huge step for me.
I gave a presentation about my life using my Lightwriter SL35. Attending the conference was a fantastic experience for me. It also was my first chance to see the new model of Lightwriter — the SL40. I got the chance to try it for a few hours and what I loved about it was that I could send a text message for the very first time in my life to my mum. As well as being able to text, I thought it looked quite cool. I also realized that the improved word prediction system was really going to speed up my communication — this is obviously very important to me. The speech was also better as were a number of other features. I was in two minds about handing it back after I had a shot of the SL 40 and thought I might just run away with it I liked it so much!
After the conference, I explained to Linda all about the new features on the Lightwriter. Things went quiet for a while, but in February 2009 Linda came to visit me with a surprise package. She had applied for funding for the Lightwriter SL40 to her manager and the funding request was successful. Here was my new Lightwriter — the first thing I did was send my mum another text message!
Mum was so happy because a couple of years ago after I had moved in to my new house she wanted to buy me a mobile phone but we realized I couldn’t hold it. Mum feels it has given her peace of mind that I can now text to make contact with someone if I have a problem when I am out and about. This new Lightwriter has really taken my independence and confidence up a level. Once when I was out alone in my power chair, I toppled over. I had no way of getting help — now with my Lightwriter SL40 I could text someone to get me help.
My next goal was to present again at Communication Matters — but this time using my new Lightwriter. I was delighted when I was accepted to give a presentation again. I approached Toby Churchill Ltd for a second time for sponsorship to attend Communication Matters and once again they funded my attendance at the conference in full. Getting to Communication Matters for the second time really inspired me to go international! As soon as I came back from Communication Matters last year, I knew I wanted to attend this conference.
I enjoy giving talks and hope this helps people understand more about what it is like to be an AAC user. We need people to remember to pay attention to what we say and give us more time to communicate. It would be good to see more AAC users on television which would definitely raise awareness even further.
In order to see more AAC users on TV, we need to make sure more people with communication problems are given the access to AAC systems. That of course requires the funding to buy the systems and to maintain them. Also that support is provided by speech and language therapists to the AAC users to help them learn to use their systems.
In what we are told is a time of financial cuts, certainly within Scotland and the United Kingdom, it is a worry that getting an AAC system will become even harder. In Scotland, there was a campaign launched to draw attention to the inconsistent funding of AAC systems. Some people in some areas, like me in Ayrshire, have been able to get an AAC system. But in other areas it is much harder to get funding. Many professionals and AAC users were all involved in one way or another in drawing attention to this issue. Some wrote to their local member of the Scottish Parliament and a group visited the parliament to meet MSP’s and government ministers. A Working Group was set up by the Government, and this has produced it’s report. Our hope is that this will improve access to AAC for people in Scotland with communication impairments. My goal is certainly to keep on highlighting the difference that access to my Lightwriter has been the key to my independence.
Before I end my talk I would liked to say thank you to a few people who have helped me be here this week.
John Hicks from Toby Churchill Limited. Toby Churchill have sponsored my attendance for the last 2 years at Communication Matters and again contributed financially to help me attend this conference.
I would like to say a huge thank you to the committee of Augmentative Communication in Practise Scotland who through their large amount of financial support made my dream of attending this conference a reality. Without them stepping in, I would not be here today.
To Grace and Derek my support workers for gave up their time to be with me this week.
Helen Jean from the Independent Living Fund for sort out the support costs.
To Linda page Speech and Language Therapist for all her hard work, and lastly to you for coming to my talk.
Thank you,
We have uploaded some photos onto the Toby Churchill Facebook page here.
