Interrupted, Ignored, and Isolated (Fall 2021 Breaking Barriers)

This article is part of our Breaking Barriers Fall 2021. This installment features articles on people living with speech differences and the challenges they face, adaptations they have made, and the power of listening and being heard. If you'd like to read more stories from this issue, please subscribe to Breaking Barriers.

While the social isolation due to COVID-19 was a new experience for many people, for those of us with a complex communication disability, it wasn’t. We are regularly passed by without being talked to. We are routinely interrupted because we communicate differently. Because it takes us longer to communicate, people tend to walk away before we speak. 

I know this because I live with athetoid cerebral palsy, meaning my muscles never stop moving. This affects my ability to communicate with my mouth, so I communicate with an augmentative alternative communication device (AAC). AAC changed my life because it lets me express my thoughts. It gave me access to language, which gave me access to be in regular classes, which allowed me to graduate from Hope College. Yet my communication style still presents barriers for me. 

I am talked to slowly and loudly because I communicate differently. One person came up to a friend who was with me and asked her how many words I knew. She was so stunned by the question that she didn’t know what to say. This is a common problem for people who use AAC

This is also why many people who use AAC don’t feel comfortable in some large group settings. We struggle with social isolation, prompting many of us to stay home. I wish churches would be more welcoming; however, many don’t have the awareness needed to support or include an individual with a complex communication disability. 

At church, people don’t know how to engage me, and if they don’t know me, they don’t communicate with me. Since many don’t understand that it takes me longer to answer a question, they walk away before hearing my answer. Poor acoustics in churches also contribute to the problem, making it difficult to hear my AAC.  

This is why I have started a Bible study called Device Verses. It is open to people of all abilities, but it is especially for people who have a complex communication disability