Let’s say you’ve had a stroke or you’ve been in a serious car accident. You are full of feelings, thoughts and questions, but you have no way to communicate. You want to tell your loved ones you’re the same person you’ve always been; it’s just you can’t move or speak in the same way. People assume you don’t understand anything they say, and you have no way to tell them you understand everything. Imagine the isolation.
Or imagine this: You can communicate with a computerized speech generating device, but it’s exponentially slower than typical speech. It takes extraordinary effort, but before you’ve had a chance to finish saying what’s on your mind with your communication device, the people around you get impatient, and walk away. You know they don’t intend to hurt your feelings, but when they walk away, you are left alone and hurting.
Or perhaps you’re a child, with an active, inquiring mind. You don’t speak, and you’re placed in a classroom with others who are unable to speak, and no one seems to know how to help any of you communicate. They have no idea about your abilities and capabilities. Can you imagine your despair? What do you do? Scream? Withdraw? Go to sleep?
There are an estimated 375,000 Canadians with limited or no speech. Many have conditions like cerebral palsy, MS or ALS, which prevent them from moving the muscles in their mouths which enable speech. Others have had strokes, or serious car accidents. Or they have autism, aphasia, throat or thyroid cancer, Alzheimer’s, dementia, or perhaps other conditions that are less common.
Each one is a human being who needs to speak and be heard, love and be loved, to belong, contribute and participate—just like anyone else. That means having access to services, supports and technology, as well as having education, community and employment opportunities. The situations above are real, and all too common. They are the stories which have inspired Kilometres for Communication, a national public education, awareness and fundraising campaign. Our goal is to empower the voices and enhance the lives of people who have limited or no speech, and to make accessibility and inclusion—for the more than 3 million Canadians with disabilities—a national priority.
Kerr is at the heart of what we’re doing. He’s an artist, activist and presenter who speaks with AAC—that’s short for Augmentative and Alternative Communication. Kerr knows from personal experience that the misconceptions about people without speech are as harmful as they are rampant. He knows about the lack of funding for communication devices and about the impossibly long waiting lists for AAC services, resulting in his living for years without a voice. He unfortunately also knows about the exclusion and isolation that result. What do we do to change this? Skye, Kerr’s proactive younger brother, came up with the best suggestion yet. His idea: cycle across Canada to meet with alternative communicators, raise awareness and funds. It was decided: from May through August, 2011, Skye cycled from coast to coast, accompanied by Kerr in a bike trailer for some parts of the journey. Skye’s and Kerr’s mother, Gail Fisher-Taylor, and dad, Burns Wattie, traveled on different wheels.
From B.C. to Newfoundland, we wheeled into communities large and small to meet with people who are communicating in all kinds of creative ways: by blinking, nodding or raising their eyes to indicate the word or letter they want, by using head pointers, switches or eye gazes on sensitive computers to speak or write. With the help of local and national media,Canadians heard the stories of people who speak with AAC. People who write plays and books, artists who paint with their index fingers, men and women who earn their master’s degrees one slow letter at a time. Social activists. Entrepreneurs. Filmmakers. And the people whose potential was never rewarded with opportunity. We asked each of them to tell their stories because our goal is for no one in Canada to ever again equate not being able to talk with not having anything to say.
As we traveled across the country we invited people to wheel, walk, run and cycle with us to help raise awareness and funds for vital AAC services, supports and technology. Everyone without speech deserves ready access to the AAC services and technology they need to communicate. The problem is that too many Canadians cannot easily access these services. Funding for communication devices is unavailable in a number of provinces, or else dependent on services which have long waiting lists.
We partnered with the Canadian Chapter of the International Society for Augmentative and Alternative Communication (ISAAC), an NGO in Special Consultative Status with the Economic and Social Council of the United Nations. Together we’re continuing to conduct a public education, information and awareness campaign to change provincial policies so that vital AAC services, supports and technology are consistently available in all provinces. We’re campaigning for the people who must have these services in order to fully participate in Canadian society, and our goal also is for accessibility and inclusion–for the more than 3 million Canadians with disabilities–to become a national priority.
The cycling journey is over, but there is a long way to travel on our journey to ensure voice, accessibility and inclusion. We are continuing to fundraise for important AAC supports, technology and opportunities. And we are networking so that many organizations can work together to empower voices and lives. If you’re an individual, organization, business, small group of friends, school, classroom, neighbourhood, service club, place of worship, or community, we invite you to participate.