Helen McFarlane, Programme Director of Allied Health Professions at NHS Education for Scotland, explains how a new campaign is aiming to improve the quality of life for people of all ages who have problems speaking.
The ability to communicate is a fundamental human right. But, for many, being heard can be hard to achieve, creating a barrier to education, work, relationships and independence. It can also affect their opportunities to help themselves and work with others to bring about social change.
As a speech and language therapist myself, this is something I’ve seen many times. But there are solutions available. Augmentative and alternative communication, as it’s known, comes in various forms. There are simple approaches such as picture communication books and gestures, and hi-tech software such as text or other input-to-speech programmes (with Professor Stephen Hawking probably the best known user of such equipment).
It’s estimated that there are 26,500 people in Scotland who require AAC, resulting from lifelong conditions such as cerebral palsy or autism or as a result of an acquired condition such as dementia, motor neurone disease, stroke or head injury.
For many of these people, AAC has incredible potential to improve their quality of life, allowing them to express themselves, be more independent and, importantly, enabling them to communicate with the people who love them. But there are no magic fixes. Different systems will work best for different people. What matters most is the support of the wider community and taking time to listen.
Eddie Gasowski (65) from Dundee is one of many users of AAC that I have had the pleasure of working with as part of my role. Like many elderly users of AAC, Eddie has aphasia caused by a stroke.
At the time of his stroke 16 years ago, Eddie was a principal teacher in a secondary school, and for a number of years after his stroke he continued his profession as a volunteer teaching Home Economics for which he received a volunteer award. He enjoys 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.
Speaking of his experience of AAC he said: “For many years I used a low-tech communication book along with little bits of speech, gestures and other non-verbal signals to get my message across. Three years ago I was introduced to an iPad and it has transformed my ability to communicate. I still live a very active life and my device makes it easier for me to do everything from ordering a coffee to raising money for charity.”
Communication extends to all aspects of our lives. Civic participation and being able to contribute to political discussions – such as the debates during, and now after, the referendum across Scotland – are part of all our human rights. Our aim is that people who use AAC can be as active in that debate as all other participants and will have their right to speak supported by others.
We want everyone to be confident in speaking to people who use AAC, addressing them directly (not just their carer) and being patient. Anyone could face losing their speech and all most people in that situation want is to be treated as others themselves would want to be treated.
That’s why we’ve launched a new website and campaign at www.nowhearme.co.uk. It aims to raise awareness among health, education and care professionals and direct them to resources that will help them. But we also want to reach others, including community and private organisations and businesses, to let them know help exists if they need it in how they can best support people who use AAC to get the most from these organisations too.