Making oneself heard without talking

First published in Hamilton Spectator November 30, 2000

One of the profound gifts that God gave to man is the amazing capability of being understood by the spoken word. It is the way we share knowledge, dreams, hopes, desires, needs, thoughts, etc. What is life like for those of us who have this profound gift taken away? Using figures based on United States estimates (American Speech-Language- Hearing Association, 1991), there are over 200,000 individuals in Canada who are unable to use speech as their main form of communication. The reasons are many cerebral palsy, stroke, vehicle accidents, neurological diseases. Who are we? What do we do?

Having cerebral palsy since birth and having damage to the area of my brain that affects the speech musculature, I know the daily heartbreaks experienced by a nonspeaking human being. Yet, believe it or not, just because I can't use the "normal" channel of talking, doesn't at all mean that I don't have dreams, hopes and desires like everyone else. It does not mean that I am not a capable thinker, a capable person, a capable reader and writer. It does mean, however, that I will always have to use some form of augmentative and alternative communication (AAC). AAC is any form of communication other than the spoken word. And it does mean that others will have to take the time to understand what I am "saying" through learning how I communicate. AAC ranges from reading the words and/or the letters to which an individual points, to understanding how persons who are severely disabled indicate their "yes" and "no". (Sometimes their eyes look to one side for "yes" and the other side for "no". Sometimes it is a movement of a leg or an arm to say "yes" or "no".) Usually they have a communication board/display with them. Don't be afraid to ask them to use it! They are like you, they are human too.

Being an AAC user, means for me that I must accept my need for a different way of communicating and try to cope in the best way that I can. It means, that each time I go out my door, I must be prepared to be a teacher. It means that, with the support of others, I can have a very useful and meaningful lifestyle, even though I don't use the normal communication channel.

The autobiography of Christy Brown, My Left Foot (1954), gave a view of what it was like being a nonspeaking person. It showed the ongoing battle for anyone with a severe speech impairment. For Christy Brown, learning to spell gave him his communication breakthrough. His story acted as a spring board to the whole AAC field. There are now many types of AAC picture boards, Bliss boards, alphabet boards, high tech speech- output devices and computers mounted on wheelchairs. We need many different options to meet the many individual needs.

In my case, learning Blissymbolics at age twelve opened up my world. Before this, with hardly any literacy skills, my life was an ongoing battle trying to communicate with my family and others. Blissymbolics is a visual, meaning-based symbol language which provides the user with the capability to communicate in sentences using English syntax. Blissymbols are particularly suitable for use by individuals with cerebral palsy or by those who have had a stroke, who have difficulty using print, and who require a far wider and more complex vocabulary than can be provided with pictures. This comprehensive system allows the symbol user to express many of the complex and subtle relationships used in speech without requiring skill in manipulating letter sounds and letters. It also provides a language foundation for the reading and writing of print. I hope my writing to-day is a testimony to what "Bliss" did for me! You can learn more about Blissymbolics by visiting Blissymbolics Communication International's (BCI) website at: http://home.istar.ca/~bci (of which I am the webmaster).

Being nonspeaking affects my total style of life. Augmentative and alternative communication provides me and other nonspeaking persons with a way to "speak". But just as important, we need those who will "listen". We need acceptance and the dignity that comes with living as "normally" as possible. It is vital that we educate police, doctors, nurses, teachers and the general public as to how to relate and interact with any person with a severe speech impairment. Nobody is making a solo trip in this life. We who use AAC are even more aware of the interdependence that comes with community living.

Additional information