A first-time author learns a lot at an International Festival of Authors. For example, that a hospitality suite exists on the Penthouse Floor of our hotel. It's always open, serving coffee, fruit and biscuits all day. At night, multiple bottles of spirits, wine and beer appear for anyone who cares to relax with a drink. The view is fantastic and the conversation is even better.
One morning last week, I was sitting in the hospitality suite enjoying the morning newspaper with a cup of coffee. A middle-aged man sat down on the sofa opposite me and we began to chat. I asked him about his book and he asked me about mine. I told him about "The Four Walls of My Freedom" and about my family. He leaned forward and told me of his good friend in Washington State - a single mother with twin boys who suffer from a very rare, but catastrophic syndrome. The boys, aged six, are now blind and their physical function is degenerating quickly.
Washington State has a list of fundable conditions and these boys' syndrome isn't on the list. Their mother receives no help at all from government sources.
My new acquaintance mused, "When I'm not being an author, my real job is as a management consultant. In business school, we learned about how young companies grow and change. When a company is small, employees make 'cultural decisions' reached by an informal consensus based on knowledge of all parties concerned and the small business landscape. When businesses grow too large for anyone to have that knowledge, though, cultural decision is replaced by administrative decision making."
"My friend with twin boys", he said, "is a victim of administrative decision making."
I thought about my own experience in trying to persuade school boards, health authorities and social service providers that Nicholas' needs were complicated and compelling. I thought about the myriad of administrative decisions that transformed programmes and policies from helpful to unhelpful.
Over the last three years, I have done a great deal of research on Amartya Sen's Capability Approach. Sen won the Nobel Prize for Economics in 1998, largely for his revolutionary idea that measuring freedom, not money, will tell you about peoples' wellbeing, even those living in extreme poverty. The Capability Approach examines if and how people have the capability to have a life that they value and have reason to value. I felt an epiphany when I first heard about this approach, but I felt that Sen's idea gave tangible meaning in the context of my community and my country to our family experience with disability.
But, the idea of cultural vs administrative decision making may add another layer of understanding.
Was Sen trying to create mass cultural decision making for the world's poorest of the poor? Does the PLAN movement in Canada embody the inclination to dispense with administrative making in the lives of our children with disabilities?
And finally, does the business model once again have something important to teach those of us in the battlefield of everyday life that includes great challenges?