Kelowna resident Shelley DeCoste has the kind of butterflies one only gets when a major change is in the wind.
As others get out to play a round of golf or game of baseball on the first weekend of June, DeCoste will stand up in front of a room full of people and launch her campaign to change the word “disability” to “diversability.”
“Everyone focuses on the ‘dis,’ on the things we can’t do,” she explained. “But people have all different abilities and I want that to be what’s understood.”
DeCoste has cerebral palsy, which she acquired when her oxygen supply was temporarily blocked at birth. It has left her with some physical and cognitive differences she might otherwise have missed; but she describes it more as a nuisance.
CP doesn’t change how she understands the world, she says, though it impacts her ability to communicate at the speed others might find customary.
” It’s more something that just pisses me off. Just because I might seem awkward, doesn’t mean I can’t participate in the community and work. I clue in in my own time,” she explains.
People with diversabilities do not want to be coddled or looked after, she adds.
“We want to work. Even if it’s just for a couple of hours in a day, we want to feel like we contribute.”
When someone is labelled as having a disability, it is easy to discount his or her contribution and potential; yet the particular abilities DeCoste possesses are very valuable.
Her paid employment sees her translate government documents so people with developmental disabilities can understand the policies and procedures and forms needed to run their lives. She is able to identify areas that might be problematic for others to read, then rearrange the wording so it makes sense to the people it affects.
As DeCoste explains it, when one ability is limited, it often creates a new ability. Someone who is missing their sight, for example, might experience a more acute sense of smell. Someone who cannot walk, might have a heightened level of dexterity in their upper body. Dropping the word “disabled” refocuses society on abilities, so these special assets can have value.
But there’s an even better argument for using “diversabilities.”
“I’m also trying to get everybody moving away from when we were institutionalized,” DeCoste says.
The world disabled is associated with the period when people were removed from their homes, labelled as handicapped and institutionalized, at times into abusive living conditions. The struggle to build inclusive communities has been compared to what the American civil rights movement did for race relations as it tries to reinstate some of the basic human rights everyone in a democratic society is supposed to enjoy.
B.C. was the first province in Canada to end institutionalization and has introduced proactive legal measures to enforce the changes, according to Faith Bodnar, B.C. Association for Community Living executive director.
Last year, the City of New Westminster held the first demolition ceremony in the country, tearing down the centre block of Woodlands School, one of the largest institutions in the province.
New legislation has also made it possible for those with diversabilities to secure a personal board of directors, or a miniboard, that operates like a non-profit society to ensure those who struggle to communicate still have their rights protected and needs met.
“People with developmental disabilities have really pushed the movement in how we talk,” said Bodnar.
Through powerful self-advocacy in the 1980s, associations termed as working for the “mentally retarded” or “handicapped” changed to titles termed “community living” in effort to encourage a more equitable, inclusive approach.
One of the more proactive annual conferences in the community living movement is held by the BCACL annually.
DeCoste will use it for her campaign launch, taking her drive to see “diversability” named Word of the Year to 400 delegates gathering in Penticton this weekend.
“It’s people who bare the label who show us the way,” said Bodnar. “That, for me, is the legacy of being privileged enough to be a part of the community living movement…Without them, we get off course too fast. And we don’t have to look back very far to think about what we can do better, how we can do more.”
A group in Europe has already created a campaign to see “diversability” included in the Oxford English Dictionary.