October marked alternative and augmentative communication (AAC) awareness month. AAC includes all means of communication that a person may use besides talking. Low-tech methods include means of interaction like hand gestures, facial movements, or pointing, while more high-tech tools might include a speech generating device accessed through pointing or a joystick, eye-tracking, or even a brain-computer interface.
British physicist Stephen Hawking was long the most famous person associated with AAC, using an advanced computer system to generate sentences and speech. American actor Val Kilmer is another well-known person who has used AAC. Kilmer suffered irreparable damage to his voice due to throat cancer. However, in the latest installment of the Top Gun film franchise, artificial intelligence was used to “clone” the actor’s voice.
In 2006, 1.9 per cent of the Canadian population self-identified as having a speech disability. Unfortunately, this was the last time Statistics Canada identified speech disability within the Canadian census. That makes it difficult to gather more recent data of the number of people in Canada with impaired speech.
Need for more acceptance
Speech impairments can occur at a young age with disabilities such as cerebral palsy or autism spectrum disorder, but can also manifest later in life as a result of progressive disorders such as motor neuron disease, throat cancer, muscular dystrophy or strokes.
Increased acceptance of the use of AAC technologies in general society can enhance the quality of life for people with speech impairment by increasing autonomy, leading to more positive social interactions, better engagement in education and confidence in employment.
The Accessible Canada Act recognizes communication as a priority area, while the United Nations Convention on the Rights of Persons with Disabilities promotes the rights of autonomy, safety and social participation, and recognizes communication as a human right.
Tackling stigma
However, even if people have access to AAC technology, they can still face stigma and exclusion. Here are some things we can all do to be more inclusive of people with impaired speech:
Start with basic respect. Understand that cognition and lack of verbal speech are not correlated. Many people with speech impairments have no cognitive deficits at all and are just as intelligent as anyone else. They want others to be more patient and understanding of speech disabilities. In social situations, they might often be underestimated and treated as children even though they are capable and competent. Show them respect, even though they may sound different when they talk.
Pre-programmed sentences on a tablet or speech generating device do not suggest that the person is incapable of developing those ideas. They may have spent 20 minutes typing out those messages in an attempt to meet the fast-paced environment in which we all live.
Take time to listen. Individuals with speech impairment may need to type out phrases one letter at a time. Some may use a smartphone or iPad with a texting app, while others use an eye-tracking device or brain-computer interface to select letters using an on-screen keyboard. Be patient and wait for the person to speak.
As one occupational therapist noted, “[A problem] I often find some of my clients run into is not being given enough time to get their message written down. They’re composing it and the communication partner might not realize they need to give them a little extra time.” A conversation may require you to pause, ask a question and wait for an answer. Stop, think, be patient and understanding.
In addition, it’s important to realize that the use of some AAC technologies can be tiring. To use systems that rely on eye movements, for example, an individual must focus and is unable to use other means of communication such as emotional expression at the same time. Recognize that shorter conversations may be better. Perhaps try communicating by email or text. Let the person respond in their own time.
Be an advocate. People with speech impairments must always advocate for themselves. If you are planning a conference or hiring for a position, ask what accommodations might be beneficial rather than relying on the individual to request them. Provide advance notice of conversation topics or questions. Engage people with speech impairments in social events. If you see someone passing judgment, speak up.
Technology is improving, and maybe one day people with impaired speech will be able to communicate with the same ease as those without. But until then, being a friend to people with speech impairments means being patient and listening.
