Simon Stevens Talks at the Toby Churchill Ltd Open Day, Nov 2010
Our Open Day on Wednesday 10th November 2010 was enjoyed by many visitors and staff alike.
Simon Stevens gave an inspiring talk about his personal history; living with Cerebral Palsy, overcoming communication challenges and his virtual nightclub on Secondlife.
For those who could not make the day, here is Simon Stevens' talk in text format...
Good Afternoon Everyone and as you should already know, my name is Simon Stevens and I am going to spend 15 minutes or so talking to you. I would firstly like to thank Toby Churchill for asking me to speak at this event.
In my talk, I am going to firstly tell you a bit about myself, followed by my personal history of using communication aids and my experiences of using a communication aid. Then I am going to talk about my virtual nightclub called Wheelies, which is based in Secondlife. And I will finish with some general comments and observations and then your questions if we have any time.
So who am I? That is what I ask myself in the mirror each morning! I am 36 and I live in Coventry in my own flat along with my live in German Volunteer. I had cerebral palsy since birth and since January 2009, I had acute neuropathy, which is a nerve virus which has left me with chronic pain issues. As a result of my impairments, I employ personal assistants who support me with all aspects of my life. I work full time, and a bit more, as a self employed disability consultant, trainer, and activist, as well as anything else I can get paid to do. Over the last 15 years I have worked with local and national government, universities and large companies like eBay and Royal Mail on a whole range of projects.
It may be hard to believe but I have only had a Lightwriter for just over a year, but over the last 30 years or so, I have used a number of devices for communication, even if it has not always been formally recognised or designed for this purpose. I have enclosed here a small selection of the many devices I have used over the years. The first device was my first so-called portable device and it was called a micro-writer. I had to press a combination of the 6 keys for different letters, which was an interesting toy for a 10 year old boy! Since then I have progressed from lightweight laptops like the Z88 to the Palmtops of Psion and the keyboard based mobiles of Nokia. My current mobile, the Nokia N900, is a million times more powerful than my first computer and it has enough gadgets to even impress James Bond’s Q! Before my Lightwriter, most of these devices simply allowed me to prepare text in specific situations like showing taxi drivers where I wanted to go.
A few years ago, I realised as I was getting older and realising talking was very tiring for me, I decided it was time for me to consider getting a proper device which met my needs and the Lightwriter SL40 certainly looked like it was going to meet my needs. I clearly did not have the resources to buy one directly myself so I had to battle with my local health authority to obtain one, and so in late 2009, I became a proud owner of my own SL40!
It should be made clear that as someone who had always consider my own voice as my main method of communication, I certainly do not use my device all the time but there are specific situations where my device is invaluable in making my life more easy by making me more understandable. These include when I have new staff or volunteers supporting me or when I go away on my own.
Despite needing full time support for my everyday life, it can be stressful managing staff and volunteers every single day, and I feel it is healthy for me to have time on my own and so I like to go on holiday on my own. I am prepared to compromise on parts of my life, like having a shower or wearing socks, so I can have that period to mentally recover. This is when my Lightwriter comes into its own, making the whole holiday experience far easier and enables me to achieve far more. In Benidorm last December, I was able to fight the local council’s policies which stopped me swimming in their pool without a helper despite being a very good swimmer. In Lanzarote this April, I was able to arrange to try both snorkelling and windsurfing, and haggle a good price! My device is also very useful for the unplanned visitor like the police or researcher at home when I am on my own.
It was not until I had my device did I realised how much I simplified my speech to ensure I could be understood and it is a wonderful feeling to realise for the first time in my life I can say whatever I want to whoever I want when I want without being reliant on people who may not always be brave enough to repeat what I say, and often with good reason!
One area of my life I do not need a communication aid is in my virtual side as I am able to use text chat with my wheelchair using avatar, Simon Walsh, as I chat, meet and very often dance with people around the world. I use Secondlife, a virtual world with 15 million users, wheRE anyone can meet, shop, dance, live, work, play, learn, teach, go sailing, use a jet ski and even go sky diving from 10,000 feet! I have used and been a resident of Secondlife for over 4 years and I have found it life changing.
One of the things I first did in Secondlife is start a nightclub. I had what I considered the crazy idea of making it a disability themed club, as a bit of fun at the time. As I was one of the first full time wheelchair users in Secondlife, it also made sense to called the club Wheelies. You can see the club in action on my stand, so I will not explain it here much and I will just say the club is currently situated on my own virtual paradise island called Llamdos. This beautiful island is home to Wheelies and my ‘Understand’ training and conference centre.
Wheelies has been on this island since July and over the last 4 years Wheelies has experienced many changes with highlights and some difficulties including being destroyed by an terrorist attack. The club has had much media attention and it has been featured on Canadian News, Newsweek International and the BBC World Service. Its greatest achievement was in 2008, when it received an award from Gordon Brown, when he was prime minister! As well as being a fun place and somewhere where anyone and everyone can feel safe, I think it is also a great place to show what opportunities people with significant impairments can now have in having a powerful and professional voice that allows myself and others to interact with others on an equal basis when our contributions can be recognised and celebrated. Without today’s technology, I certainly would not be able to do a fraction of what I can do and I indeed do!
So in concluding my talk, I would like to make the first observation that the technology many people take for granted makes a big difference for many disabled people. Without my Lightwriter or Secondlife, I certainly would not have the opportunities I have now to tell the world what I want to say in the way I want to say it. But it is important for myself and others not to become over dependent on one form of technology and it is important I consider my Lightwriter as just one of many tools I have in my procession to enable me to communicate, including my own voice. In this way of thinking, I can understand how I am empowered rather then made dependent with the devices I use.
I believe we are just beginning to understand the potential of virtual environments and indeed the benefits they have and will have for disabled people. It is still a case of watching this space as you heard about Secondlife first here! And so in summary, I would have to say that in terms of technology, it is certainly an exciting time to be disabled, and I leave you to think to will there any be a time when Secondlife is built into a future Lightwriter?
Thank you for listening and I hope you enjoyed my talk. If you have any questions now and we have time, I am happy to answer them now, or you can talk with me afterwards.
Thank you to Simon Stevens for providing his speech in text format.
You can find more about Simon Stevens on his website here.
