James Marsh (The Theory of Everything): Now Hear Me

Director of Oscar-winning film The Theory of Everything James Marsh gives his backing to the ‘Now Hear Me’ campaign in an address to a conference for AAC professionals in Glasgow in March 2015.

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Making time for a chat with Professor Stephen Hawking

Stephen Hawking

Linda Page, Speech and Language Therapy Service Lead for AAC with NHS Scotland, explains how renowned theoretical physicist, Professor Stephen Hawking, communicates using Alternative and Augmentative Communication (AAC), and how time is an important factor when having a successful conversation.

By sharing his passion for his work and bringing science to our homes through the medium of television and print, Professor Stephen Hawking has come to be known as one of the greatest thinkers of our time. He is also known for having one of the most instantly recognisable voices, through his use of AAC in the form of a voice output communication aid.

In a recent television appearance, Professor Hawking, who has Motor Neurone Disease, discussed artificial intelligence and his new communication system, which is described as being able to learn how the Professor thinks and suggest the words he might want to do next. This sounds magical, however, anyone who uses any method of AAC knows there is much more to it, and that time is key to any interaction.

I have often been asked about Professor Hawking and how he is able to express his views using AAC. Many people believe his voice output communication aid is powered by thought waves, but it is actually a much simpler process which takes time and practice to implement.

Using a process of scanning using a single switch and specialist software, Professor Hawking is able to select a letter, function key, predicated word or pre-stored phrase, allowing him to build up messages to be spoken or inserted into documents. The Professor has only very minimal movement and accesses a switch that is attached to his glasses using the movement of a muscle just below his eye. When we see him ‘speak’ on television, his communication looks instantaneous – but that is not what it is like in real life for the professor or for anyone who uses AAC. For each television appearance, Professor Hawking has spent a huge amount of time preparing what he is going to say ready for filming. We don’t see the time and effort he has had to put in, hence the fact that it looks instantaneous. Advancing technology has improved the AAC solutions that we can provide to children and adults with communication difficulties, however technology is not the whole story for someone who uses AAC. The role of the communication partner is crucial, which is why seeing Professor Hawking ‘speaking’ on television can be misleading.

Just recently I had a conversation with Barry, a gentleman who has used a Lightwriter voice output communication aid for many years, about what makes a good conversation for him. This was something he was keen to explore in depth in order to pass on some tips about being a good conversation partner to the people he meets and in the presentations he gives about his experiences as someone who uses AAC.

In our conversation Barry identified five top tips which help him have a good conversation:

  • Give me time to talk to you
  • Talk to me and not my support worker
  • Don’t finish my sentences for me
  • Don’t read the screen on my device – look at me
  • Don’t pretend to have understood me – be honest in our interaction

If we all follow these top tips we can all enjoy a good conversation with Barry, Professor Hawking, or anyone who uses AAC.

For more information about AAC visit Now Hear Me, Developed on behalf of NHS Education for Scotland (NES), Now Hear Me is a gateway to information and advice aimed at helping people understand the needs of individuals who may have difficulties as a result of impaired or no speech and who use Augmentative and Alternative communications (AAC).

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Rachel Monk: What it’s like to use AAC (Video)

Rachel Monk

We’ve produced a couple of videos to help us when we’re talking about the importance of AAC, what it means to people who use it and what other people can do to help them. Rachel put it so much better than we could ourselves and we’re really grateful to her for her support. We hope you enjoy her story as much as we did.

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Gavin Drysdale: What it’s like to use AAC (Video)

Gavin Drysdale

We’ve produced a couple of videos to help us when we’re talking about the importance of AAC, what it means to people who use it and what other people can do to help them. Gavin put it so much better than we could ourselves and we’re really grateful to him for his support. We hope you enjoy his story as much as we did.

Please share this video by viewing it on YouTube (click on the YouTube link in the top right) and choosing whatever sharing option works for you.

You can switch on captions by clicking on the (CC) icon on the video.

 
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Capability Scotland’s new digital campaign

AAC Device

Lauren Pluss from Capability Scotland explains why they launched their digital campaign Xpress Urself to help raise awareness about the different ways that people communicate.

Communication is at the heart of everything we do on a day to day basis. It’s how we form relationships, express decisions and pass on ideas – whether that’s saying what you want for dinner or sharing your dislike for the latest potential Christmas number one.

For some people communicating their thoughts and feelings can be a real challenge. Nearly 1 in 50 children in Scotland need help to communicate. Capability Scotland has dedicated speech and language therapists who work with children and adults to find suitable ways for people to express their views and opinions.

Greig has cerebral palsy and attends our Upper Springland service. He said:

“When I was young I found it very difficult to communicate. I would be with other children playing games but couldn’t spontaneously input into conversation. By the time I was given the opportunity to communicate the moment had passed which I found frustrating.”

Now, thanks to the support of our speech and language therapists and his own determination, Greig is able to communicate effectively with the use of his AAC device. Not only can he voice his opinions, needs and wishes, but his device also integrates with his computer, telephone and television enabling him to express himself in numerous different ways. From singing in ‘When Your Voice Is But a Whisper’ to helping to teach students at Dundee University about communication tools, the sky is the limit for Greig!

We support a number of people of all ages, like Greig, who use communication aids and symbol books to interact with the world around them.

Resources like www.nowhearme.co.uk are great at raising awareness and it’s a resource that is commonly used by the staff in our schools and services, including the staff at our Corseford School who have recently used the e-learning modules to help further their knowledge of AAC.

Throughout December we’ve been publishing a range of case studies from the people who use our services about the way they express themselves to help raise awareness, from poems to inspiring work with universities – there are lots of exciting stories to share.

For example, one of the students at Corseford was so enthused by learning Spanish that he asked for his device to be programmed with Spanish words. Now he is often heard greeting people along the school corridors and chatting to the staff at lunch time in Spanish!

At the other end of the spectrum, even being able to communicate a yes or no is really important and gives a person the power to take control over their lives. That’s why we’re calling on everyone to #XpressUrself.

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The vital importance of AAC – the professionals’ view

Young Boy, AAC User with teacher, laughing. In our last post we heard the thoughts of people who use AAC. This time, two professionals – one in education and the other in health – provide their compelling perspective on the importance of AAC and the benefits it can bring to the individuals they work with.

Elaine Jamieson is a principal teacher at a primary school in Glasgow:

“As a teacher working with children with multiple additional support needs I stumbled across AAC a number of years ago and haven’t looked back. Now I can’t imagine how I could ever have taught without using AAC. It’s an integral part of my daily teaching activities and actually always should have been –but for some reason I was oblivious to AAC (as I suspect many people still are).

“Supporting children to communicate using sign, symbols and/or high tech devices has become a real passion for me. It truly does make a difference to the children I work with. Imagine not being able to make yourself understood? Many of us have this experience when we travel to a different country. Think of the feelings you experience in that short snapshot of time, then consider what the impact would be if that was day after day, week after week, month after month. Thankfully, AAC strategies, and people who are willing to take some extra time with individuals who use AAC, can and do make a massive difference.

“The ability to communicate with others is something which I believe is fundamental to society. It’s an essential part of how we build relationships, how we think and learn. It has a massive impact on future life options. AAC is that important!”

Laorag Hunter is a speech and language therapist at a hospital in Dundee:

“After a stroke, ‘Eric’ had severe aphasia (difficulty understanding and using language). Living with his elderly mother, he made good progress with his communication and mobility, and was extremely determined to become independent. Over the years Eric gradually took on more responsibilities and now does more caring for his mother than she him. However, he was still frustrated with literacy tasks and various approaches to overcome this had little impact.

“Eric was not to be put off and asked us if any technology could be of help. With a loan iPad, he quickly gained independence using programs to compose and read emails, and is now using an iPad Mini of his own. Thanks to this, Eric has gained privacy, independence, and pride in new skills. His mum as also benefited through the peace of mind that Eric can manage better on his own.

“It’s important that those of us in speech and language therapy remember that technical solutions may be available today that were not an option a few years ago. We need to have an open-door policy to our service, supported by awareness-raising, so that people like Eric who may be long discharged from services are recognised and directed back to SLT for assessment.”

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Users of AAC & their stories

Eddie (right) and another person with aphasia with their ipads

This is the first post of our site’s blog, where we’ll be looking at various different aspects of AAC.

When we launched the site in October, we were supported brilliantly by various people who use AAC and who agreed to give us their views. Some of these featured in the media, but we wanted to bring together their stories here in full, since they express the importance of AAC far better than anyone else could.

We hope you find what they have to say useful and interesting.

Rachael Monk

Rachael, who has cerebral palsy, is 31 and from Dumfries and Galloway.

“My communication aid has made a huge difference to my quality of life. It allows me to convey my thoughts, feelings and opinions. I can voice concerns, make choices, tell jokes, and chat with friends, like anybody should be able to do. I attended college and obtained an A level in Fine Arts, I have given speeches at conferences, and I am able to speak up in important meetings. Without my communication aid, I would not be able to do any of this or express exactly what I wanted to say.”

Rachael and her carer Lisa

Rachael and her carer Lisa

 

 

 

 

 

 

 

Gavin Drysdale

Gavin, who is 13 and from Ayrshire, has motor difficulties. He competes in the relatively new, but fast-growing, international disability sport of RaceRunning and competed at the IWAS Junior World Games at Stoke Mandeville in August 2014, winning the 100m, 200m, 400m and 800m races in new world record times. Gavin was also a baton bearer for the Commonwealth Games in Glasgow.

“I first got an AAC device when I was about four and straight away it benefited me massively. It enabled me to interact with my class mates at school right from Primary One. It allows me to communicate on a daily basis with people who don’t know the Makaton sign language that I use.

“If I didn’t have my AAC device, I wouldn’t be able to chat to other people or get my ideas and views across, and I would feel isolated and lost. It has taken a while for people to realise that I do need extra time to get across what I want to say, but I am getting there.”

Gavin with one of his teachers

Gavin with one of his teachers

 

 

 

 

 

 

 

Euan Macdonald

Euan, from Edinburgh, was 29 years old when he was diagnosed with motor neurone disease (MND) in 2003. He and his father helped to establish the Euan Macdonald Centre for MND research at the University of Edinburgh. He also founded the award-winning Euan’s Guide, a website with impartial, user-generated accessibility reviews and recommendations for venues.

“Communication is an absolute necessity. For me it is the difference between having quality of life and not. My communication device allows me to lead a normal life – I can email, send text messages, use the internet, use Skype and Facebook, and of course I can hold conversations. Unfortunately not everyone can get the communication device they need, particularly for those needing to use eye gaze technology like I do. I hope this campaign can help change that.”

Euan with his sister Kiki

Euan with his sister Kiki

 

 

 

 

 

 

 

 

 

Alex Macdonald

Alex, who is 16 and is from Hawick, has an undiagnosed syndrome and is on the autistic spectrum. He has always had no speech. Alex attends a special school in Newcastle (Percy Hedley). His experience of AAC has included simple sign language, communication books, specific speech aid devices and now tablets. Although he has had learning difficulties he does not have the same physical issues that many other users of AAC have.

“People don’t understand me unless I use my iPad or Windows tablets, but I also like using them because I can play games, look up YouTube and do other things that help me socialise with friends and others. It would really help me if there was wider acceptance of this as a method of communication with people allowing me to take the time that I need to ‘speak’. Tablets can’t make up completely for the voice that I don’t have but they are very much part of my life and how I interact with the world around me.”

Alex’s mum Gillie said: “We just don’t know why Alex can’t speak but in actual fact he is a very good communicator and will be very inventive in order to get his message across! This highlights the need for a total communication approach for someone with AAC needs rather than thinking that one device can replace a voice, as it doesn’t and never will. The fact that he is fully mobile has often been an issue too, because many AAC devices are designed for wheelchair mounting and don’t reflect the needs of a teenage boy, although the advent of tablets has helped to overcome that.”

Alex and his sister Christianne

Alex and his sister Christianne

 

 

 

 

 

 

 

Eddie Gasowski

Eddie, who is 65 and from Dundee, has aphasia caused by a stroke. At the time of his stroke, 16 years ago, he was a principal teacher of Technical Subjects in a secondary school. Eddie has many roles in life: husband, father, gardener, runner, fundraiser, furniture maker, baker, photographer, befriender, research participant and campaigner to break down barriers for people with communication disabilities. For a number of years after his stroke Eddie undertook voluntary work at the school where he had been a teacher, for which he received a volunteer award, and also in the Mackinnon Centre in Broughty Ferry.

Eddie’s wife Alison Gasowska said: “For many years Eddie used a low-tech communication book along with little bits of speech, gestures and other non-verbal signals to get his message across. Three years ago he was introduced to an iPad and it has transformed his ability to communicate. He still lives a very active life and the device makes it easier for him to do everything from ordering a coffee to raising money for charity.”

Eddie (right) and another person with aphasia with their ipads

Eddie (right) and another person with aphasia with their ipads

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Ways to Communicate – an Introduction to Augmentative and Alternative Communication

Augmentative & Alternative Communication Using a series of ‘stickman’ animations coupled with video and narration, this video explores different ways of communicating and introduces you to the AAC superhero who can help overcome barriers to communication. Simply click on the play button in the middle of the video to start.
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