Twenty-five years ago, if any wiki existed, it was a lyric from a Sheb Wooley song. Today, wiki technology shapes the way many of us access information. In the future, it may be the way people with intellectual disabilities tell their stories and manage their care.
In intellectual and disabilities service systems across the world, services are organized through documents that describe the individual’s needs and the supports provided to meet those needs. The power of writing and producing those documents tends to be in the hands of someone other than the person with a disability herself. Often, the stories told in these documents come from paid professionals and caregivers, with some input from family. Rarely does the story come from the individual with a disability.
The impacts of letting others tell your story can be dismal.
Take, for example, a frequent support need for adults with intellectual disabilities: dietary management. Some people with intellectual disabilities make poor choices around food (as do quite a few people without disabilities). When we tell the story of these poor food choices from a professional point of view, we tend to focus on the behaviors and potential negative outcomes from those behaviors.
As a result, we look for ways to control that behavior. We put someone in to supervise the person’s eating and do their shopping for them to ensure they have the “right” things to eat in their homes. Sometimes, we go to extremes of limiting access to food, even locking pantries and refrigerators to ensure the person with a disability cannot binge.
From the viewpoint of the person with a disability, the problem may look very different. Perhaps the real problem is being bored and lonely. Or perhaps they haven’t had any help finding an exercise program they enjoy. Or maybe none of the person’s caregivers cook like Mom did, so he’s always looking for something that tastes like it’s supposed to. Locking the fridge isn’t going to solve any of these problems.
The idea of wiki technology is that it allows multiple users to provide input to a website. Wikis for people with disabilities are designed with a similar premise – to allow a variety of individuals to contribute to the person’s story. But the person with disabilities is the webmaster.
With wiki technology, people with disabilities can use text, pictures, sound and video to tell the story of who they are, what is important to them and what they need to be successful. Rather than a bureaucratic document, the plan is an ever-evolving representation of the person with a disability, with input from anyone to whom that person chooses to give the power.
A wiki future for people with disabilities is not just a dream. A group in England has developed wikis for disability planning and is working to expand that technology to the U.S. and to Colorado. Soon the stories of individuals with disabilities may be back in their hands.
Tara Kiene is president/CEO of Community Connections, Inc.