My name is Donna Thomson and I am a mother, an author and the wife of the Canadian High Commissioner to the UK. This is my family – my daughter Natalie is 19 and a student at the University of Toronto. My son Nicholas is 22 and is disabled with cerebral palsy. Until Nicholas was 18, I provided him with almost all of his nursing care. Since coming to London in 2006 though, we have professional nurses 24/7 in our home and this sudden change in my own circumstances allowed me to reflect on what it means to offer care to a loved one who is completely dependent.
And Nicholas IS dependent. He has low vision, is non-verbal, is tube fed, and he has no functional control over any part of his body. To borrow a banking term, Nick looks like the embodiment of deficit. But those who see him that way would be wrong.
Because they would not know that Nicholas is a high school graduate with a city wide award for academic perseverance. They would not know that he has completed three courses on the Open University or that he is a top rated seller on E-Bay. They wouldn’t know that he has an ice hockey blog called “The Hockey Ambassador” or that he has a Canadian Registered Disability Savings Plan with a very healthy balance. They would not see that Nicholas is a great asset to our family, his friends and his country.
Recently, I heard the British authority on innovation Charles Leadbeater say “our vantage point determines everything we see”. That thought stayed with me and helps to explain how I began to think differently about my life and that of my family. I began to see assets where previously, I had seen deficits.
Of course experiences can rearrange our vantage points, but so can ideas. The idea that changed my vantage point was something called “The Capability Approach”. Amartya Sen won the Nobel Prize for Economics and the Capability Approach is his great idea for rearranging the vantage point when looking at extreme poverty. He decided that household income and GDP were poor indicators of human and even economic wellbeing. Rather, he proposes that we need to examine whether people have a life that they value and have reason to value. Money is just one factor in a good life, but there are others equally valuable – such as loving relationships and whether or not someone has the resources to convert money into good living, as in the case of disability or old age. Looking at the entire range of possibilities for flourishing within circumstances of adversity was what won Sen the Nobel prize. He positions the idea of freedom at the heart of his definition of a decent human life.
Looking carefully at one’s circumstances and IMAGINING possibilities is the key here. Nicholas has lessons in this department for anyone willing to listen. He is no Pollyanna and there isn’t an ounce of sentimentality or technicolour dreaming in his decision to maintain a positive vantage point. Nicholas used his acceptance speech at the Spirit of the Capital Youth Award for Academic Perseverance to share his secrets of success:
“I thought that I would share with you my secrets of perseverance. Talking about pain or ongoing challenge is very boring to me. I would choose having fun and learning at school over sitting home and complaining any day. I will never give up school because, frankly, I am just too curious and excited to find out what is going to happen next in each of my classes. Some people call this approach having a positive attitude; I call it wanting to express my opinions. I have opinions in my personal life, my school, my community and my country. And if I want people to hear my opinions, I know I have to be involved. I know how to find information about my interests, and how to use that information. I AM NEVER BORED! My advice to other students is to keep trying, even if it takes a long time to achieve academically. The world is far more interesting if you know something about it. At times we all may face some difficulties, but it is important to remember to never give up, and never give in. Thank you all, and good luck.” For good measure, Nicholas insisted on including the lyrics to the theme song of the Liverpool Football Club in place of a bio in the awards program; “You’ll Never Walk Alone”.
A lot of parents of children with disabilities will be familiar with a story written by Emily Perl Kingsley titled “Welcome to Holland”. Kingsley was a writer for Sesame Street and she is also the mother of a young man with down syndrome. She described the experience of parenting a child with disability this way: imagine that you plan a trip to Italy. You have read all the guidebooks, learned Italian and reserved all your hotels and tours. During the flight, the pilot announces that the plane has been rerouted to Holland. You land there with no reservations, no language or guidebooks. But slowly, you discover the beauty and unique qualities of Holland. You discover tulips and Rembrandt. There will be those who land in Holland and never leave the airport – they stand in queues, endlessly trying to get back to Italy. But those people will not innovate and flourish because they lack the imagination to apply the capability approach.
So how do some people turn the losing hand that life has dealt them into a winning hand? Well, Temple Grandin, for example, uses her autistic way of seeing the world to design more efficient and humane cattle slaughter facilities, because she knows how cattle see and how they feel.
Of course, the Grameen Bank is an example of innovation with roots in adversity.
When Nicholas was five years old, we were living in St. John’s Wood. I was searching for a mainstream school and each one I approached had the same reaction, “I am sure your son’s needs would be much better met at another, special school.” I knew that Robinsfield Infant School at the top of our High Street was not wheelchair accessible, so it was only after I had exhausted all other options that I picked up the telephone and said to the head teacher, “I suppose there’s no way you’d want my son”. “Want him! He’s in! Our school NEEDS your son!” This school principal knew that other children would have a lot to learn from Nick – empathy, patience, enriched communication skills, tolerance and kindness. The worst behaved children in the class were given special responsibility for helping Nick with his work and teachers began to understand that Nick’s need for assistance combined with his winning personality had a positive, productive effect on the class in many, many ways.
Thirty years ago, when a group of aging parents from Vancouver, Canada began to worry about who would love and care for their adult children with disabilities after the parents died, they felt desperate at first. Knowing that their offspring were part of the first generation of children with disabilities who would likely outlive their parents, this group decided to do something very radical. They gave up on the idea that government could help in any way. After so many years of applying for more funding to look after their children without success or any guarantee that services would last for the lifetime of their sons and daughters, these parents hit a wall. But once they gave up on the government and had a blank slate with no assumptions of any other players in their future planning, they asked themselves a question that was the spark for innovative solutions. They asked “What IS a good life?” The group decided that the key to a good life was loving relationships. The next task was to build an organization that could broker, sustain and coordinate loving relationships that would endure for their children’s lifetime. Planned Lifetime Advocacy Networks, or PLAN, was born. Personal support networks consisting of family, friends, neighbours and community members were organized to offer a natural kind of love, friendship and constancy to vulnerable adults. Eventually, groups and families representing the interests of those with issues such as aging, homelessness, addictions, teen pregnancy, mental illness and many other root causes of vulnerability took notice and replicated the model of personal support networks. And the unanticipated positive outcomes didn’t stop there. Social scientists and contemporary anthropologists were noticing a disturbing trend of isolation and loneliness in healthy populations. Current demographic trends mean that most people today live far from their extended families and many people are not acquainted with their neighbours. But those participating in supporting a vulnerable individual as part of a small group, reported feeling happier, less isolated and more a part of their community.
In all of these examples, the protagonists followed the same steps. They stopped expecting resolutions for intractable problems from traditional (but unresponsive) providers. They asked a different question about fundamental objectives. They aligned with others who shared the same objectives. They kept the vulnerable person and their wellbeing at the heart of every action and decision undertaken by the group.
My story is one of adversity as well as blessings. But that’s life. My intention was to write about my family in a way that allows the reader to put themselves into the storyline, reflect on what it means to be a caring citizen in a democracy today and how to live in a way that is most deeply human.
The innovation consultant and former Shell scenario planner Adam Kahane wrote a book called Love and Power. He describes Power as the drive toward self realization and love as the drive toward unity. Kahane maintains that to solve big problems, you need both love and power. Taken together with the capability approach, this idea led me to decide that a guiding principle for any decision making regarding vulnerable people and their care should be “least restrictive and most supportive”. So, for example, elderly people should have as much freedom as we can possibly offer them to do whatever they like, but when they fail, fall or need help, we need to be there with assistance. This gives the individual the opportunity to achieve power and the community provides love.
I hope that today, I have offered some ideas that may be relevant to everyone’s individual circumstances. And I wish you all well in achieving your own capabilities without ever sacrificing your personal freedom, love or power.