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More than words

by Emma Tracey

As the UK year of communication gets under way, we find out what life is like in 2011 for two people who have no speaking voice and who use various forms of alternative communication every day.
Toby Churchill laughing
AAC, or augmentative and alternative communication, is the term used for any form of interaction which does not involve speaking. Solutions can be high-tech like text or symbol-based computer systems, low-tech, like an alphabet or picture chart, or no-tech, such as nodding, waving and other body language.
After Professor Stephen Hawking, Toby Churchill is probably the most well-known high tech text-based communication aid user in the UK. He lives in Cambridge with his second wife and their son. Toby was 21 years old and studying engineering at university in the 1960s when he lost all movement due to an attack of encephalitis. The infection also lost him his speaking voice.

“I was in hospital for a year after my illness. Gradually I regained enough voluntary movement to communicate laboriously. Someone would say ‘I’ll read out the alphabet, blink when I get to the letter you want’. Later I got my point across by pointing to a spelling-card. Then I graduated to a typewriter.”

When Toby began to get out and about in a wheelchair, he quickly realised that nothing had been invented which met his need to speak on the go.

“I started visiting universities to get an understanding of what to do and how. Cambridge University eventually built the first [Lightwriter] for me."
The first Lightwriter
The LightWriter was a portable typewriter with a screen, so that family and friends could read what Toby was saying.

Recognising that there were others in a similar position, he saw a business opportunity.

“People started asking ‘Wassat, where do I buy one, who do I make the cheque out to?’ The answer seemed simple: me.”

16 year old Beth Moulam has cerebral palsy and has been using various augmentative forms of communication since the age of five. She has some speech but says that even her parents find this difficult to understand. Typing everything out on specialised equipment like a Lightwriter is just one way of getting herself heard.
Beth Moulam
“I use anything and everything that I can to communicate, my eyes, facial expressions, gestures, body language, my own signs and pointing to visual props. Just like people who have their own voices really.”

The newest high-tech solutions have phone and email connectivity built in. Sometimes Beth finds that mainstream technologies can do the job just as well.

“I was on Facebook when a message popped up from my Australian friend Mel; she's also a communication aid user. We had a great conversation that lasted about 20 minutes. Nothing strange except we were sat side by side – Mel was staying for a month and using Facebook on her iPhone”

Beth and Mel took advantage of all sorts of alternative communication options during the visit. Though they were used to using technology to talk long distance, being in the same room felt a little different and they found themselves experimenting.

“We used lots of body language, shared the nearest communication aid, did air-writing and made a lot of noise. When we went out together, we also sent each other
texts”
A conversation between a member of the public and someone who uses a communication aid can take time, and as Beth has discovered, the public aren’t always patient.

“When I was in mainstream secondary school, people would not wait for me to finish saying what I wanted to say but jump in and assume. That was really frustrating.”
Toby Churchill believes that there are advantages to the more leisurely pace of AAC.

“I can't reply instantly to things, I have time to think about 'the bigger picture'. It's the same as emailing versus a heated argument.”

Long after Toby invented the first LightWriter, communication aids gained a synthetic voice.

Professor Stephen Hawking is known world wide for his robotic tones. So although the technology has improved and voices have been made to sound more human since he became a communication aid user, Prof Hawking has elected to hold on to his original machine. As a teenage girl, Beth is understandably a little more picky.

“I have had a few different voices over the years. It can be hard to get used to a new one, especially if the accent is very different. Sometimes it just hasn’t felt like me.

“I really like the communication aid I have now. The voice was very new when I got it but as different manufacturers use the same speech software, more and more female communication aid users sound like me. That’s sometimes annoying as anyone who speaks has their own voice and doesn’t have to share it with others."
Beth Moulam smiling in the sunlight
Each piece of equipment has to be optimised so that it’s owner can say their most commonly used words and phrases easily. Beth’s is based on predictive text.

“The first time I use a word I have to type it in to my communication aid, then it is always offered to me. This means [the in-built vocabulary] grows every day. It also offers me words I regularly use together which speeds things up.”
Although the aim is to be as spontaneous as possible when talking, Beth and Toby both have some commonly used phrases programmed in and ready to go at the touch of a button. Check out their top five below.

Toby’s stock phrases

“Would you please”
“Hello, how are you?”
“My name is Toby”
“What is your name?”
“Say that again”

Beth's stock phrases

She has shortcuts for these basics: “thank you" "yes please" "communication aid" "I like it" "I love it"

Her most regularly used full sentences are:

“Can I have a bath please”
“I am thirsty, I would like a drink of ....”
“What's for dinner”
“My name, address, car registration etc”
“I would like my steak rare please”

Beth is currently working towards her GCSEs at boarding school. She plans to stay in special education until after A-Levels, before studying occupational therapy at Uni. Then she has a career in mind.
“I want a job, my own home and eventually my own family. I will always need extra help with some tasks but this won’t stop me from following my dreams."

In the 30 years since he invented the Lightwriter, Toby has appeared on BBC One show Tomorrow’s World no less than three times. He sold his company, Toby Churchill, in 2007 and is now it’s president. Toby Churchill is the third oldest producer of communication aids in the world and the only communication aid manufacturer started by someone who is physically and speech disabled, a user himself, and one of the product designers.

Toby has made augmentative and alternative communication his “life’s work” and says that if it has opened up people’s lives then that’s “reet champion!"

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