On Saturday 22nd October Giving Voice society members supported the UCL Communication Clinic to raise awareness about the challenges of living with aphasia through the “Lost and Found” exhibit at the Bloomsbury Festival.
The Bloomsbury Festival is a creative celebration of art, culture and science which takes place each October with over 130 events held over five days. This year’s events were inspired by the theme LANGUAGE, and attracted up to 3000 people on the Saturday alone! At least 150 of them visited the “Lost and Found” exhibit. People came curious and open to conversations – perfect for Giving Voice volunteers to really engage with!
Our key points to communicate to people about aphasia were:
- It is a difficulty with language; which may affect ability to talk, understand, read, write, or calculate
- It affects each person differently to different degrees, and can affect any age group
- It does not affect intelligence
- It can be caused by stroke, brain injury, infection, progressive neurological conditions, or tumours
- The challenges of living with aphasia can lead to a rage of emotional reactions; including anxiety, depression, frustration, embarrassment, and isolation
- It affects more than 376,000 people (more than MS and Parkinsons combined), and is one of the most common communication difficulties
- Speech and language therapists are uniquely placed to provide assessment, diagnosis, treatment and support for people who have aphasia
Many people we spoke to had never heard about aphasia before, and often confused it with amnesia or Alzheimers. The “Lost and Found” exhibit gave visitors an interactive opportunity to explore the challenges of living with aphasia. People contributed a word they couldn’t live without to the “Lost Words” artwork, and thought about what it might be like not to be able to use those words. We were struck by how most words were positive in nature, and also how often the names of loved ones were at the front of people’s minds. People recorded themselves using Dragon Naturally Speaking software, and the output was projected as part of the “Writing allowed” activity. People reflected how frustrating it could be when what was projected was not what they thought they had said, and we were able to talk to them about how important it is to train people in using different communication strategies. Clients from the clinic with aphasia showed their artwork in
the “Finding a Voice” display, many pieces with complex themes and social commentary. Visitors reflected how poignant and intelligent the pieces were, and learnt how aphasia affects language but not intelligence. People were able to listen to recordings of people with different types of aphasia at the “Missing details” activity, and compare how this might affect their ability to describe the same picture – a kind of “spot the difference” visual representation of lost language.
When anonymously surveyed, most people said they would not feel comfortable interacting with someone with aphasia at a social event. We were really grateful for people’s honesty, but it underpinned for us just how socially isolating and challenging living with aphasia could be, and the need to keep working to help people become more confident and comfortable interacting with people who have speech, language and communication difficulties.
Before the event we held an optional drop-in training session for anyone who was keen but a bit nervous about the opportunity to communicate with people living with aphasia, or talk to people about the condition. This is because the Giving Voice society is made up of people from all different backgrounds and disciplines, and not just those training to be speech and language therapists. The Committee was so impressed by the number of people who had never done anything like this before who were willing to bravely give it a go! In the end we had seven willing volunteers in addition to six committee members – a massive thank you to all the volunteers; and to Caroline Newton and Carolyn Bruce from UCL who organised and ran the exhibit.
The “Lost Words” artwork that was created will be on display on Wednesday 2nd November from 5pm at Chandler House, where there will also be a reading and discussion from Lauren Marks, an author with aphasia. All are welcome!!!!
UCL Giving Voice Committee
Facebook: UCLU Giving Voice Society