The Film 'Boyhood': Reflections on Holding On and Letting Go

A date night with my husband Jim doesn't happen often.  We have fallen into our habits of cooking dinner together, followed by reading or watching a British television drama.  Sometimes, though, a movie or play catches my eye and I peek out of my turtleshell long enough to organize an escape from my comfy chair at home.

This week, we saw Richard Linklater's new film, 'Boyhood'.  I'd seen the word 'masterpiece' attached to the project, but it was the idea of a film being made about a boy growing up over twelve years that captivated me.  At first, Mason (Ellar Coltrane who plays the boy) is aged five and after 2 and half hours in a darkened theatre, he has matured to age 18.  Mason's compacted boyhood shows us ourselves and presents to us the richness of 'normal' family life.  For me, it was a powerful reminder that the entire moral universe is contained within the ordinary.

I am 59 years old.  Jim has retired from his demanding diplomatic career.  Over the past couple of years, we have learned hard lessons of trust as we tentatively put our son Nick's care into the hands of others.  Our daughter Natalie has moved to Delaware in order to pursue her studies.  Today, we are contemplating selling our family home in Ottawa in favour of a country lifestyle on the water about 20 minutes away.  As I look at our basement full of children's sleds, baby clothes and disorganized boxes of old photos, I reflect on the themes in 'Boyhood' and what they mean to me.  (Caution - there might be a few spoilers here.  You may wish to see the movie before you read this.)

Loving Relationships: Joy or Incarceration?

A young and beautiful Patricia Arquette (the single mother) explains to her impatient date that the babysitter has cancelled.  "Don't you think I WANT to go out sometimes?!" she wails.  "I have responsibilities!  I lived at home with my parents' rules and then I had babies... I have NEVER been able to just go out!!" Next, we see this young mother with her children snuggled into bed together (her date has given up and left) as she reads a storybook infused with an intimate, secret code of affection.

My book is called "The Four Walls of My Freedom" - the title comes from a quote by the American philosopher and Trappist monk, Thomas Merton.  In his diary, The Seven Story Mountain, Merton describes the moment that he entered a monastery to find spiritual enlightenment this way: "Brother Matthew locked the gate behind me and I was enclosed in the four walls of my new freedom."

Being 'responsible' for vulnerable loved ones certainly felt like a prison sometimes to me.  There were days that I felt furious and impotent with my inability to make personal choices or to act spontaneously... ever.  But I was always seduced again into laughter and optimism by the smell of my children's hair, the touch of their fingers on my arm or the whispers of their secrets in my ear.  These are ordinary ideas and experiences that mothers talk about all the time.  They are rarely examined in film, probably because we don't count them as important.  But, they are.

Holding On and Letting Go

Childhood. Adolescence. Adulthood.  Parenthood.  These life stages contain roles we constantly struggle to hold tight or to release.  The complicated transitions of growing up are closely examined in this film and made plain by symbols and metaphors.  As Patricia Arquette packs up her young children and drives away to a new (better) life in another city, the boy muses about their lonely collection of toys abandoned on the front lawn.  "They were not worth bringing with us, but they were too good to throw away."  The poignancy of the toddler's plastic basketball hoop left behind wasn't lost on me.  Boyhood is fleeting.

What are the meanings in our normal life transitions?  What objects can we keep to remind us of those meanings?  When we let go of our childhood mementos or our dependent relationships, what is left?  In her last scene as the mother, Patricia Arquette has broken free of her 'responsibilities' and her 'four walls'.  Her children have grown and gone.  But, what remains for her except old age and death, she wonders.

Normal is Noble

There was a scene in 'Boyhood' when Ethan Hawke (the actor who plays the birth father of the boy and his sister) lectures his teen daughter about contraception.  "Oh", I nodded, "here's the foreshadowing of an unwanted pregnancy drama."  But the girl didn't get pregnant.  Near the end of the film, the boy (now 18 years old) is driving down a highway on his way to a new life, apart from his family home.  "Right.  Get ready for the car crash." But it never came.  No, these are good (not great) kids living a normal life.  But here's the thing - normal isn't boring.  It's fascinating... riveting, even.  This film compels us to find the meaning in everyday life, specifically family life.

Recently, I had a conversation with a wise colleague in the social change movement, Vickie Cammack.  Vickie was telling me about an interview she gave for radio.  The host asked her what was required for people to survive and be happy now and into the future.  "Being intentional.  Intentional about our relationships and the way we live our lives," was Vickie's response.

I felt wistful at the end of 'Boyhood'.  I felt that perhaps this boy and his family had not be intentional and that their way of moving through life was like a leaf being blown by the wind.  Perhaps that expectation that fate will take care of us is at the root of our collective contemporary discontent.  I'm convinced that Vickie is right - we need to be more intentional.  What would 'Boyhood' look like with that overlay?  I'm not sure, but the characters in this film are a testament to the old adage that you don't know what you've got till it's gone.

After the film, Jim and I went to a local diner for tacos and beer.  Brown paper was the tablecloth and a couple of crayons invited us to leave our mark.  Jim scribbled his name on the table as we waited for our order to arrive.  I wrote 'Donna' beside his name and drew a heart around us.  Between our names, I crayoned the number 37.  That's how long we've been married.

Have we let our lives waft along unnoticed?  Have we spent time wishing to be apart, free and somewhere else?  Yes, I think we have sometimes.  But we have sought meaning in our daily lives too, and we've found it there.  Like in a movie date with my husband and father of my children.  People like us who spend a great deal of time caring for the needs of others are natural miners for meaning in life.  We exist in 'the spaces in between'.

My Mom used to stand in my bedroom doorway, hands on hips and scan the jumble of clothes and books on the floor.  "What is the meaning of all this, young lady?" she would demand.  "I don't know", I would tell her now.  "But I'll watch Boyhood again and maybe I'll have the beginning of an answer."

Pregnant with Natalie in 1991.

London, 2010

The Ethics of Amelia's Transplant Story

I've been taking a break from blogging recently. Every so often, I begin to feel brittle and sore from the jostling of everyday life - I feel as if someone has removed the skin from my body. On the outside is flesh, nerve endings, sinew and muscle. If a dog pants near my leg, it hurts. I flinch if I brush by the kitchen counter. I think it's all the change in our family life, along with Christmas. And then there were the events of this week.

Last weekend, we were asleep at 12:30am when the telephone rang. It was Nick's nurse who reported that a beeping sound was issuing from his implanted pain pump. She had googled the pump and found that this particular sound indicates a 'critical alarm' - either the pump is dangerously low in medication or it's malfunctioned for some other reason. Either way, it means a trip to the Emergency Room. So, we spent the night there waiting while the doctors tried unsuccessfully to locate any information on the pump and what to do about this odd young man and his mysterious pump. In the morning, our own doctor came and refilled the pump with some medication to carry us over till Monday when a proper refill could be done. Medication errors happen and we are fortunate that they are very rare. All's well that ends well.

Fast forward to Thursday. When I arrived to visit Nicholas, I noticed in his chart a note about a swelling under his right arm. I lifted Nick's shirt and sure enough, there was a swollen ridge, red, hot and sore to the touch. The doctor had been called and when he arrived later (yes, our amazing GP does house calls for Nick!), he lanced the thing and dressed it. I felt so badly for poor Nick. But although he shouted and cursed during the procedure (fair enough!), he smiled and asked for a new playstation game when the whole thing was over. That's my boy - he's a great entrepreneur.

I feel recovered enough today to write down some thoughts about an internet story that is making the blood boil of every parent in the child neurology internet fora. A little girl called Amelia was turned down for a kidney transplant by physicians at the Children's Hospital of Philadelphia because she has a developmental delay. Apparently her quality of life came into question and the ethics department of the hospital could not sanction prolonging the life of someone so apparently diminished. A quick reading of my last post on this blog will tell you that I and others have recognized this pernicious trend in medical professionals to limit the treatment options for those with cognitive impairments and it's a trend I think is very, very dangerous. One comment on Amelia's family blog about the whole mess warned "this is the beginning of the death panels". I don't agree. This has nothing to do with such simple notions of widespread limits on treatment due to fiscal belt tightening. No, this is an issue to do with disability, particularly cognitive disability. There is a current trend in the medical profession and amongst bioethicists to downgrade the worth of a life lived with cognitive impairments. And those prejudices are playing out in transplant committees as evidenced by Amelia's story.

I will put my skin back on and start writing about this. Today.

Innovation and Ethics - Across Sectors

On the morning of June 6, 2011, I gave the festival keynote address at the FICCDAT conference in Toronto (the Festival of Conferences on Caregiving, Disability, Ageing and Technology). Here is my speech on INNOVATION AND ETHICS.

Recently, I heard the British social innovator Charles Leadbeater say “Your vantage point determines everything you see”. Let me begin by telling you about my vantage point.
My name is Donna Thomson and I am a mother and an author. This is my family – my daughter Natalie is 19 and a student at the University of Toronto. My husband, Jim Wright, is the High Commissioner for Canada in the United Kingdom. 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. Thanks to innovations such as a computerised spinal cord pain pump, gastrostomy feeding tube, oxygen saturation monitors together with the loving care of our family, Nicholas has survived. But the social innovation required to sustain Nick in the community has not kept pace with the medical breakthroughs that keep him alive. Nicholas is so high-tech and high maintenance now, that no existing policy, programme or service can easily meet his needs. My vantage point has led me to reflect on how we might nurture innovation across the sectors of science, community and family.
Nicholas is representative of the first generation of people with disabilities who will outlive their predicted lifespan. Many members of this cohort will even outlive their parents.
But it’s not only people with disabilities who are surviving – the average life expectancy in Canada is climbing. Babies born today can expect to live nearly 81 years. My mother who lives in Montreal is 89. Of course at that age, she has health problems – in fact she was in the hospital last week, but thankfully, she is better now and home again in her apartment.
The theme of this conference is "Living Longer and Living Better". I believe that we can do that if we change our collective vantage point.
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 in 1998 and the Capability Approach is his great idea for rearranging the economist’s 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 to imagine, to choose and to act at the heart of his definition of a decent human life.
Through the generosity of the Printing House Charitable Office and McArthur and Company Publishing, you will find a copy of my book “The Four Walls of My Freedom” in your FICCDAT conference pack. When Nicholas was growing up and battling the effects of severe cerebral palsy, I believed that our struggles with Nick’s disability were private and of no concern or interest to anyone outside our family and friends. But Amartya Sen’s Capability Approach offered me a lens to evaluate my family experience with adversity so that it had relevance to anyone concerned with freedom, active citizenship and caring societies. The research and reflections for my book led me to the conclusion that innovations, policies, programmes and services for those with care needs should be designed according to the principles of “least restrictive and most supportive”.
So, in the context of my family experience, what does an innovation for our community designed on the principle of “least restrictive, most supportive”, look like? Well, I think it looks like an Ipad application. Nicholas uses a communication app called Proloquo2Go.
This is an app that was designed by someone with expertise in both computer programming and speech language pathology. But apps are designed to be whatever the user wants them to be.
The programme is totally customisable, which is least restrictive. But it has open source information sharing about its infinite number of uses and malleability which is most supportive. Inventors of Ipad applications often have no clear idea how their programmes will be used. The developer devolves creative ownership to the user so that ongoing problem solving can occur in a way that is highly responsive and personalised. In social care terms, I do not want a day programme for my son that runs only on Wednesday mornings, for example. Nicholas is bedridden, so couldn't access the programme anyway. For us, personal budgets or care vouchers would offer the flexible benefits of an "app".
Fundamental change, or radical innovation, nearly always necessitates the turning upside-down of power relationships. The idea of the consumer as co-collaborator is radical in itself. The former Shell scenario planner, now turned social innovator, Adam Kahane, wrote a book called “Love and Power”. Kahane defines power as the drive toward self-realization. And he defines love as the drive toward unity. Deep change, he maintains, calls for a balance of these two forces because systems based on just one of those forces alone will result in stagnation. And this carries the risk of the overall failure to respond to the chaotic changes that are the natural fallout of human relationships.
The impetus required to reinvent the most deeply embedded habits is called for when the results of ineffective systems are a great enough irritant to the majority, that a general consensus to throw in the towel ensues.
This happened in Anchorage Alaska when Dr. Doug Eby and his colleagues became so frustrated with the poor outcomes of traditional western medicine that they invented an entirely new blueprint for delivering healthcare.
The NUKA Model of Care was born out of the realization that the “owner/users”, as their patients are called, held a good deal of the power for achieving decent health outcomes. Particularly in the case of chronic care, it is often patients who decide whether or not to fill a prescription or to take a full course of medical treatment. The NUKA model of care retained a traditional model of ICU care, because in that setting, patients need systems to take over. But Dr. Eby describes the design of traditional health care delivery for chronic conditions as akin to throwing a stone at a target on the wall. In the messy business of dealing with people, he says, it is not a stone you are throwing at the target, but a bird. No matter how hard you throw that bird at the target, it still may veer off in another direction before it hits the wall. Systems that are rooted in the respect for freedom, yet offer support for our failings or changed trajectories, will result in better outcomes.
So says Dr. Eby and he has the empirical data to prove it.
Thirty years ago, a group of aging parents from Vancouver began to worry about who would love and care for their adult children with disabilities after the parents died. These mothers and fathers 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 ALONE could be relied upon to love and care for their children. This realisation proved to be a watershed. Now, they had a blank slate with no rigid assumptions in their future planning. They changed their vantage point. They asked “What IS a good life?” This 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. Everyone in the group agreed that their children would be safe with a circle of friends and family who truly loved and cared for them. 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.
The network would also assume the advocacy and monitoring role that normally falls to parents.
Groups representing the interests of those with issues related to aging, homelessness, addictions, teen pregnancy, and mental illness began to take notice. They replicated the model of personal support networks for their vulnerable populations. 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. Isolation is a well documented negative health determinant. Current demographic trends mean that most people today live far away from their extended families. Many people are not acquainted with their neighbours. But those who participate in supporting a vulnerable individual as part of a small group reported feeling happier themselves. They were less isolated and enjoyed a greater sense of meaning in their lives.
Canada is experiencing a climate of reduced budgets and increasing costs in health and social care. At the same time, public servants face a daily imperative for accountability, transparency and results-based management.
I am married to a public servant, so I can attest to that. But fiscal pressure can sometimes provide the impetus for change.
PLAN is a model that provides an opportunity to shift from patient centred care to network centred care - a shift that front line professionals are beginning to realise holds potential to ease pressure on their budgets, by coordinating support for a vulnerable individual in the community. Accountability and transparency are natural outcomes of support networks which consist of people who share objectives that affect someone they love.
In these examples of transformational change, the protagonists followed similar steps. They set aside their assumptions about the status quo and prepared themselves to imagine something different - something better. They rearranged their vantage point in order to generate a new set of fundamental objectives. They aligned with others who shared a vested interest in working to a common purpose. And every participant was considered an equal co-creator, regardless of professional qualification. The umbrella organisation had ultimate responsibility for outcomes, but collaborated with users right up to the management level.
In business terms, all these approaches including the Capability Approach apply the principles of cultural decision-making rather than administrative decision-making.
These models build in the capacity to bend rules in a way that is responsive to the messy and fluid requirements of those living with challenging circumstances. These models build in authentic collaborative relationships across the spectrum of provider and end user because the authors understand the concept of interdependency.
My family uses a wide range of services and innovations. I passionately WANT to collaborate with professionals involved in both my son's and my mother's care. And I am not unique in this regard.
Family members who provide complex care to a loved one develop a myriad of skills and a wealth of knowledge. We want the freedom to use our knowledge and skills LIKE an app - in ways that will give us a life that we value and have reason to value. We want access to innovators so that we can customize our care and support on a continual basis. If we are the bird and we collaborate closely with the person tossing us toward an agreed target on the wall, believe me, we will fly toward that target and we will land there every time if we possibly can.
Most of us here at the FICCDAT Conference represent cultures and societies that do not suffer from widespread extreme poverty.
But that doesn’t mean we don’t have important lessons to learn from the slums of India, the favelas of Brazil or the economists who seek to create better lives for those who are very poor. Necessity is the mother of invention. And the worldwide recession, combined with the demographics of aging and an explosion of technological innovation, provide us the seeds of real, positive change if choose to sow them. And that vantage point is full of hope and possibility.
It is my vantage point. I wish you all a wonderful FICCDAT conference.

Welcome to my blog

This site is for anyone interested in the interplay between family, community connectedness, policy, ethics and culture.

I am the mother of two children – Nicholas (22) and Natalie (18). Nicholas has severe cerebral palsy and lives at home with 24 hour care. Natalie is a student of Diaspora and Trans-national studies at Trinity College, University of Toronto. My husband, Jim Wright, is Canada’s High Commission to the UK and so currently, we live in London.

Here’s a picture of us at home!

For most of Nicholas’ life, I looked after him myself. But now that he has full-time care at home, I have the opportunity to reflect on our family experience and what it may mean to the rest of society. It is the big questions that interest me. For example, I wonder if, when presented with a tax bill that includes some of the costs of my son’s care, a taxpayer in another province will ask “Why should I care? Why should I pay?”

To that taxpayer, I want to answer that to give and receive care is good for all of society. It is a life-enhancing activity. And I want to explore the wider consequences of saying, “I don’t care and I won’t pay”.

Reflecting on my personal experience has prompted me to ask myself, “What do I want my family to be? What do I want my community and my country to be? What is the relationship between someone who is not perceived as contributing to the economy and the state?”

These questions do not only relate to disability – they relate to mothers and children, the chronically unemployed, the aged AND people with disabilities. They relate to anyone in the community who is vulnerable to social exclusion and in need of extra help from someone else to thrive. By my informal estimate, that could very well be close to half the population.

I hope that readers of my blog will be keen to comment! People like Amartya Sen, John Ralston Saul, Jean Vanier, and Al Etmanski have already created the sparks to ignite a national discussion. I hope that my reflections can stoke the fire and that all may gather round it to share stories and ideas of belonging here.