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Say Aphasia is a Brighton based charity currently offering drop-in groups across England and Wales and was set up over seven years ago. It is the only aphasia charity set up by people with aphasia for people with aphasia. Colin Lyall, founder of Say Aphasia and all of the peer leaders for our drop-in groups are living with aphasia. This really challenged our thinking as an organisation because we had to consider how to adapt all our processes, and all forms of communication used by our peer leaders, and it is constantly evolving. Every single form of communication which those of us who do not have aphasia do on autopilot, has to be altered to suit the needs of each peer leader individually. For example feeding back about their group in a meeting. Each peer leader helps us to understand the ‘communication ramps’ we need to put in place to support their participation.
We believed from the beginning that it was essential to have peer leaders who have aphasia because they are the people with the lived experience and are in the best position to support our group members learning to live with aphasia, offering encouragement and hope. They truly understand the aphasia journey. For the peer leaders themselves, it is often their first work role since acquiring aphasia and helps them to acquire new skills and develop confidence; potentially opening up opportunities in other areas of their lives.
What is aphasia?
Aphasia occurs as a result of an injury to the brain such as a stroke. It affects access to language, resulting in difficulties following conversations, speaking, reading and writing. People's language can be affected to different degrees so not everyone's aphasia looks the same. For everyone who has aphasia however, it is lifelong and means that the person living with aphasia, their friends and family will need to adjust to a new way of communicating. Aphasia frequently results in loss of employment and a reduced social network, leading to isolation for the person living with aphasia. Aphasia is not uncommon, affecting in excess of 350,000 people in the UK, however the majority of the population have never heard of it.
What does Say Aphasia do?
Our fifteen drop-in groups provide a safe, relaxed space for people living with aphasia to meet other people who also have aphasia and to try out different ways of communicating with people who understand. The charity and the groups offer a sense of community for people living with aphasia. Showing that there is hope, while developing people's confidence, reducing isolation and improving well-being.
Given how few people know what aphasia is or how to adapt their communication when talking to someone who has aphasia, another important aspect of the charity’s work is to raise public awareness and understanding. The more people who understand aphasia, will make it easier for those living with it to do the everyday things we take for granted, such as ordering a coffee or buying a bus ticket.