Many of us fear being trapped in our bodies in old age, unable to communicate.
For some people, that's a reality long before they're old.
An amazing initiative has been changing that reality — and people's lives. But now the provincial government has eliminated its modest support for the program.
Giving the gift of communication to people with disabilities isn't a priority.
The name is a little dull - Communication Assistance for Youth and Adults, or CAYA.
But the work is astonishing. It combines advanced technology, therapy and ingenuity. The results are life changing.
Imagine being 29, and suffering from a spinal cord injury or illness that meant you couldn't speak or sign or communicate. When doctors asked about pain, you couldn't answer. You couldn't ask for something you badly wanted or tell someone how much you cared.
CAYA changes that. The speech pathologists work with clients to find the best way to communicate. The tech people identify the best communication device. There's training and support.
Imagine that gift for you or someone you care about.
The CAYA website has some wonderful client stories. People freed from the prison of their bodies to work and share life. You should read them. It's heartening and humbling to see the enthusiastic embrace of life from people dealing with such big challenges.
Like Melissa Yaretz of Sicamous. She's 19. She has struggled to survive physically. But she was an academic star in high school, thanks to advanced communications technology.
"Without a communication system there would have been no grades and no proof that I am all that I am." Yaretz wrote. "I would have just sat in the back of the room looking cute. Cute only works for so long. Without communication, to the rest of the world I am just a woman in a wheelchair with a severe disability, who is dependent for everything."
Or Andrea Paterson of Abbotsford. Her Lightwriter voice communication device gives her a voice and allowed her to move into a group home.
"I use my Lightwriter to help the staff at my new group home know what I like to do, to eat, or how I am feeling," Paterson says. "Once when I was sick I wrote 'I want to go home.' I love to have fun and to tease the staff and the Lightwriter helps me do that. I love it here!"
Government revenues are down and costs must be balanced against benefits.
But cutting a small amount of funding that produced huge changes in people's lives betrays the values most of us live by.
Since 1989, SET - Special Education Technology B.C. - has been working to help school-age children communicate. In 2005, CAYA was created to extend the effort to adults, with government support.
Two years ago, then education minister Shirley Bond and income assistance minister Claude Richmond announced a $500,000 grant for CAYA. "Our government wants every British Columbian to achieve their very best, both in school and in life," said Bond.
"I know that CAYA will continue to make a tremendous difference in the lives of those with severe communication disabilities," Richmond said.
But now the government has eliminated funding. A disabled person with a chance of employment or a volunteer role can apply to CAYA, which will dip into the money it has left to help.
Otherwise, disabled people are apparently not worth the money it would take to allow them to communicate.
Rich Coleman, the minister responsible, said government recognizes the program's effectiveness and how lives have been changed.
"However, the economic downturn has placed significant pressure on our programs and we are no longer able to provide funding to the CAYA project," Coleman wrote. (MLAs, beyond having forgone a one-per-cent wage increase, haven't cut their wages or benefits.)
Last word to Melissa Yaretz.
"What about Love? I too desire love from life and all that it can mean. How can someone love me if they don't know me? How can they know me if they don't understand me? To be able to communicate all my thoughts and feelings allows others to know all of me inside and out. As I desire an equal place in life, I also desire the same of love."
Sorry, the government says. Too expensive. Go away.