Author Ian Brown in Halifax to talk about the 'Boy in the Moon'
Jon Tattrie | CBC News | Posted: October 25, 2016 2:48 PM | Last Updated: October 25, 2016
Writer pitches L'Arche-like community where people could visit to learn from people with disabilities
If you woke up today feeling unsuccessful in your life, perhaps you need to rethink what you mean by success.
Canadian writer Ian Brown thinks for many of us, that change could come by spending more time with people who have intellectual disabilities. He's in Halifax today to talk at the Canadian Association of Paediatric Health Centres conference and stopped by CBC Radio's Information Morning.
"One of the problems in the world is we're so aggressive," he said.
"Look at the American election. Everybody has got the answer, allegedly. Everybody is insisting their answer is better than everybody else's."
Living like L'Arche
His community would be modelled on L'Arche, a worldwide network of homes where people with intellectual disabilities live with the people who care for them.
"It's a community where the intellectually disabled and their caregivers are equals. The care is great, but the agenda is set—the tone of the community is created—as much by the disabled as it is by the caregivers.
"If they're going to watch a movie, they ask everybody," Brown said. "There is a sense that they make the community."
Brown's son Walker was born with a rare genetic condition known as Cardiofaciocutaneous (CFC) syndrome, which means the 20-year-old has a mind more similar to a toddler than to most adults. He lives in a group home and visits his parents twice a month. Brown wrote about his son in his book, The Boy in the Moon.
"The problem is when he comes home, I can't really have a relationship with him because he's too busy destroying the house, or doing things I can't control. I cannot go and live with him in his home, because it's a home for people like him," Brown said.
How to change your idea of success
In his talk, he'll outline his vision for a community like L'Arche, but which is set up to let people visit for a few days to learn from the people with intellectual disabilities.
"And the only thing you have to do is have breakfast, lunch and dinner around the table, because all of L'Arche is centred around the table," he said.
He gives an example from a recent visit Walker made to his parents. His mother left a bag out, and Walker tripped over it. He spent the rest of the day glancing at her and saying, "huh," before finally tapping her on the arm.
"Joanna realized that what had happened was she'd done this thing to him, and he'd held a grudge for the whole day, and that at the end of the day he forgave the grudge," Brown said.
Brown said he could have easily ignored the whole episode and chalked it up to Walker being Walker, but by thinking about it he saw his son's path to forgiveness.
It's about "seeing that he has a contribution to make. It completely changes what our idea of a successful life is."
Finding peace with who you are
People living with intellectual disabilities must live with fragility and uncertainty, he said, and find peace in accepting themselves as they are—not as they're "supposed" to be. Instead of marking Walker's success with outside goals—getting into a good school, or getting a prestigious job—he looks inside to learn about acceptance and forgiveness.
"Not just him, but myself included," Brown said. "It speaks to a greater equality—a liberating equality. I'd like to live more that way."
To do that, funding for people with intellectual disabilities would have to become more flexible, he said. Now, it's more top-down, where the government funds things for particular ends. He said many people would prefer to see a pool of money that could be used to care specifically for the individual.