There is a clear difference between helping a person with an intellectual disability to stay alive and helping them to live. That mindset has driven the career of Michael Kendrick, a sought-after writer, public speaker, service evaluator, and consultant on the topic of helping people to live meaningful lives. “The overall process is really one of imagining ‘better…’” he says, “you can always have a lifestyle, but is it a lifestyle that’s really personally fulfilling?”
Kendrick, who has been part of Canada’s community living movement, at all levels of government, since the 1970’s, thinks a large barrier to having people live good lives is the amount of time spent on ‘custodial’ work, rather than working to help them reach their full potential. He believes that, even though many resources are dedicated to assisting people with intellectual disabilities, support workers aren’t sure how to best use those resources, so they fall back into mostly housekeeping-style roles. “There’s nothing wrong with going for coffee [with someone with an intellectual disability], but it’s not what you’d call a lifestyle development breakthrough.”
In other words, many of these people need those who support them to think outside the box. They are often stuck in what Kendrick terms ‘the tyranny of routine.’ They don’t know how to do more. “A frequent complaint of people with disabilities is just how bored they are with their lives…The person with the disability is often a hostage to the control and influence of others, so you really want to create a condition where the person can be much more directing of their own life, and a force in their own life…” Kendrick points out. Engaging the supported person in things they enjoy and excel at can increase their quality-of-life.
Two obstacles that Kendrick deems noteworthy are the challenge of opening the person’s mind and communicating with them and the importance of continuity of support. How can support workers and families help create more satisfying lives? “I think it begins, first of all,” he offers, “with trying to understand the person, rather than trying to fit them with some kind of program.” In other words, one size does not fit all, and efforts to find them careers and opportunities to participate in the community should be flexible, adapting to their particular interests and needs.
Of course, understanding what these passions are can be difficult with some people with intellectual disabilities. Some have difficulty saying what they really mean, while others can’t speak at all. For the former, Kendrick stresses the importance of really getting to know them, which will help family members or support workers read between the lines. When the person does not speak, he says that it’s essential to keep an eye on their conduct and reactions.
Another barrier in creating good lives for people relates to how staff members come and go out of a supported person’s life so often that progress becomes slow. In Ontario, many people get one planning session a year, and the people implementing the plan may be different from those who made it. Kendrick spoke to this, saying that, in such situations, “…there’s no continuity of effort, and so you’re not really building very much, because everybody comes in and goes back to square one.”
He points to the bureaucracy many community agencies force. Since people ‘tag out’ so often, “There’s no capacity to take the plan and have people build on it and follow through on it. If you did have that, you’d have much more chance of breaking new ground.”
As these big life changes cannot be immediate, and since agency staff are often only involved for a short time, Kendrick extols the value of communities in helping someone with an intellectual disability to reach their potential. Unlike organizations, members of someone’s community (or ‘circle’) can be involved in their lives for much longer. Friends and family, with help from the person with an intellectual disability themselves, can create a flexible plan that changes as needed, rather than being addressed at a once-a-year meeting. “They don’t need the permission of the system to go ahead and get a life,” he suggests. “They just go do it.”
Agencies often have trouble being so adaptable since, in addition to not meeting as frequently, employees must divide their loyalties between the person they support and the organization they work for. Community members have no such conflicting interests. However, cautions Kendrick, this is not to say that agencies have no place at the table, as “…the role of services is to come to the party, but not to dictate what the party is.”
One of the strongest ways to inspire people, though, is to simply expose them to others who have come from a similar situation and succeeded. Kendrick gave the example of a hypothetical man who gets a paid job after being unemployed for 25 years. He would serve as inspiration for someone else currently going through such a trying time. “Even the example that you can direct your own life can be quite inspiring,” Kendrick states, in closing. “People need positive reinforcement that this isn’t a fool’s errand—that you actually can do this.”
– Daniel Share-Strom