By Sue Tiffin
Last week we published a story about Barb Thibault, who was planning on attending the March of Dimes 2019 Aphasia Camp at Camp Wanakita this past weekend. Barb would be one of the many people enjoying a camp experience who lives with aphasia – a communication disability often the result of a stroke or brain injury that causes language impairment, affecting the way a person understands or uses language.
Barb spoke of her frustrations with communicating since her stroke, that when she was emotional she had to put more effort into speaking, and that although she understood what she wanted to say, physically getting the right words out in the way she wanted to wasn’t always possible. When we can communicate verbally with little conscious effort in speech planning, despite the complexity of coordinating messages to the brain and oral movements, it’s difficult to truly imagine just how isolating and exasperating it can be to struggle with speech.
But as challenging as that struggle is for Barb – “every day it’s a fight,” she said – she found it most jarring to encounter people who didn’t understand her disability or have patience in trying to better comprehend her communication. While Barb’s family has been steadfast in their support, comfortably using multi-modal communication including gestures and sign language as they speak, Barb said others, especially people working in the service industry, have not been understanding. Additionally, an ableist world resulted in barriers that could easily be solved with greater awareness and planning, including ensuring the cash register screen can be visually seen by those struggling to process auditory information.
Alison Mack, a speech-language pathologist who helps people, including Barb, regain as much of their communicative ability as possible post-stroke, said that although society has a greater awareness now than in the past of the need for accessibility and accommodation for people with physical disabilities, the same awareness and knowledge doesn’t exist for communication impairment.
“Community awareness and knowledge builds empathy within a community but also a public confidence to step forward rather than to step away from people dealing with communication issues,” she said. Rather than presume competence, some people might assume that because a person is struggling to say something, that they might not have something to say.
October is International AAC (augmentative and alternative communication) Awareness month, a campaign that was first launched by the International Society for Augmentative and Alternative Communication in 2007. It’s important for the general public to understand that people communicate in different ways, and essential that we learn more about complex communication needs.
American speech therapist Janice Light once said that communication is the essence of human life. We use it to request, and also ask questions, assert independence, tell stories, recall past experiences, express ideas, opinions, hopes and dreams, and connect with each other.
Know there are different ways to communicate. Just as you would ensure people in need have access to a wheelchair or eyeglasses, ensure they have access to a robust language system, like a communication device or app on an iPad. Be patient. If you don’t understand, say so. And as Barb pleaded, loud and clear, “Listen.”