The Four Walls of My Freedom (15 page)

We distinguish work from leisure activity (that we
want
to do because we enjoy it) and from other activities in the private realm of life — personal grooming, child care, homemaking.

In modern, industrialized societies, perhaps the most common understanding of the essential characteristic of work is that it is something for which we get paid. This idea is associated with activity in the public world, which is dominated by men and separated from those private worlds of family and personal relationships where women predominate. There may be exchanges in households and friendships, but they are not monetary. Even activity in the public sphere, such as volunteering and community service, is not work if it isn't paid. Any activity we do for pay, wherever it is found, even if we enjoy it, must, by definition, be work.

But any effort we make, even if it is arduous, skilled and recognized as useful — perhaps essential — is still not recognized as work if it is not paid.
38

Daniels talks about housewives in a slightly less-than-contemporary North American context. But her observations still ring true, especially about contemporary women who assume a full-time caring role. The work of caring has no monetary value, and therefore no moral force or dignity in the public consciousness. Governments have always capitalized on this conception of care that is not “work” to protect their shrinking social care budgets. Market prices affect our definitions of what is work and what is not. Twenty years ago, giving someone a bottle of formula via a stomach tube was a nursing task — today anyone in a family can perform this job, no university degree required and no pay received.

However, consider what is required to bring an elderly relative with dementia to the shopping mall. Can it be called work? Of course it can, but it doesn't have to be paid to be recognized as valuable. There are other kinds of work involved in giving good care.
39
There are qualities that describe a kind person, a good mother, or a good friend, but these same qualities are also central to good care for vulnerable people. Maintaining this height of alertness and level of emotional giving is tiring. A different definition of work is called for if parents like me are to be protected from exploitation, be rewarded for our contributions, and have a hope of retirement from our duties.

The physical and emotional toil of dependency work has something to do with love, but it should never be taken as an extension of it. The extent to which a carer has to become “transparent” in order to provide good care, acutely listening and watching for signs of need or distress, cannot and should not be sustained without reward and rest. Assuming that a more appropriate definition of invisible work will evolve based on the sheer numbers of citizens involved in giving care, what kinds of rewards can society offer? Every individual is likely to seek a personal answer to that question. Certainly, some will want cash compensation either in the form of pension benefits or direct payment. For others, the rewards of familial affection will be satisfactory recompense. But the public knowledge that persons who give care must be allowed to choose
a
reward is the idea I wish to put forward. A person coerced into giving care without regard for their own health, fitness, aspirations or talents is a recipe for bad care with dangerous implications for all concerned.

But, rewards given by the state in the form of payments are hardly ever without strings attached. Funds must be spent on this, but not that. Every expense must be fully accountable on a “worthy” expenditure. A family who receives government assistance to buy food might find itself in hot water if they choose to purchase a Christmas tree instead of a turkey during the holidays.

I am sure that in the case of putting money and power into the hands of individual families, many tax-paying citizens would wring their collective hands at the thought of letting mothers run amok in malls with government funds. My response would be that there will always be a few people who behave badly in the public and private domains. But in a democracy, we do not construct a single public policy based on the poor judgement of a few misguided Canadians. Most parents do their best to nurture their children. It's just that in some cases, it takes a village.

Eva Feder Kittay envisions a new ethic for long-term care by nudging us towards a new conception of equality. She writes: “By viewing our relations to others as nested dependencies, we start to frame equality in terms of our interconnections…for the disabled and their caregivers alike. Each gets to be seen as some mother's child.”
40
To position interconnectedness as central to or synonymous with equality is the very core ethic critical to ensuring capability achievement for me and every other member of my family. We are all some mother's child.

Being Well

How could anyone possibly measure the extent to which someone has a life that they value and have reason to value? The Capability Approach is a wonderful idea, but it is notoriously difficult to pin down and quantify. Many have tried. Martha Nussbaum wrote her list of ten capabilities. The
UN
's Human Development Index is an attempt to give form and substance to the approach as a policy tool. And those who study the area of wellbeing in populations have made significant inroads in quantifying the messy business of individual freedom, potential and happiness.

My foray into wellbeing and assessment happened quite by accident. During my lunch meeting with Professor Sen, he happened to ask me if I was acquainted with Sabina Alkire, a professor of economics at Oxford. I replied that I was aware of her work on human security and economics, but that we had never met. Sen picked up his phone, dialled Sabina, explained my project and passed the phone to me. She was warm and gracious on the call and offered any help and advice that I wanted. Later at home, I emailed to invite her to tea in London and she accepted a few weeks later. As I began to query her work, Sabina mentioned that she had been deeply involved in creating the National Happiness Index for Bhutan. Excited, I blurted, “Do you think you could create an index for my family?” She quickly agreed and we began to talk about the type of index that would work for us. Sabina already knew something about our family and we decided that a simple index measuring our functioning in daily life, together with a couple of indicators related to emotional and spiritual satisfaction, would be appropriate. It would also be short enough that Nicholas could complete it along with the rest of the family.

After our tea, I invited Sabina upstairs to meet Nicholas and show her the photos I planned to use as book illustrations. With a promise to write with an index, she gave me a hug and looked at her watch. “Oh, I'd better go!” she said. “I have a Bhutanese monk with me and I've left him in Oxford Street shopping. He's never been in the West before!”

“Is he alone?” I gasped, laughing. Sabina nodded and she hurried away to rescue her friend.

Several weeks later, the index arrived. A note from Sabina explained that I must decide on three time periods and ask each member of the family how they rated the domains, using a scale of zero (for extreme dissatisfaction) to five (extreme satisfaction). The domains that Sabina identified were:

• Health — energy and rest

• Health: Pain

• Health: Mobility

• Health — mental

• Family Relationships

• Friendship

• Community Support

• Beauty and Creativity

• Education and Learning

• Meaningful Work

• Play and Fun

• Inner Peace

• Spiritual State

• Harmony with Nature

• Self-direction

• Empowered to Act

As for the three time periods, I chose the years 2004, 2006 and 2009. The markers that I used to highlight 2004 were Nicholas' failed hip surgery, his uncontrolled pain and hospitalization in Montreal. The highlight of 2006 was our move to England and settling into life in the
UK
. By 2009 we felt truly established in London.
41

The survey results when our scores were averaged to represent the whole family unit were not surprising: 2004 was a very bad year, 2006 was novel and exciting and 2009 was our year of being quite settled and content (see Appendix A for an analysis of the index).

Much more interesting and surprising were the individual scores. Sabina suggested that I attempt to predict the scores of my husband and children. On the part of Nicholas, I predicted very low scores in all domains for the year 2004 and by and large, I was right. I recalled Natalie suffering a sort of malaise that year, with adolescent friendship problems in addition to the usual sources of adolescent angst. I also knew that she felt keenly the distress of her brother and her own helplessness to alleviate it. Her results mirrored my predictions.

I found Jim's results for 2004 astonishing! During that year, he was entirely engaged by the all-consuming nature of his position as political director of the Department of Foreign Affairs and yet, he reported higher levels of general wellbeing and happiness than in either 2006 or 2009. I could never have predicted that!

Jim's results for the year 2004 revealed fascinating truths about the inner workings and resilience of our family. That year, Jim was entirely immersed in serious matters of state — terrorists were striking on multiple fronts in the Western World and Canada had recently committed to sending troops to Afghanistan. All government files related to weapons of mass destruction, rogue states, G8 summits and international peacekeeping were Jim's files. When I looked at his index scores for the year 2004, I felt a sense of personal pride that I had managed to protect my husband so that he could provide for us. Figuratively speaking, if our family were swimming a marathon and Jim was the only person in the boat alongside, we couldn't have him in the water too. We needed at least
one of us
to be functioning and not drowning. Throughout the most difficult times in our family history, I tried to protect Jim from many of the sordid details. And selfishly, I wanted to keep up the pretense of order and normalcy when he came home from work late at night. He would come through the door, give me a kiss, remove his tie and sit down with me in front of the late night news, his dinner tray balanced on his lap.

The move to the
UK
in 2006 marked a turning point for all of us. Everyone was much happier. Nicholas reported extreme satisfaction in almost all domains. Interestingly though, he experienced relatively high unhappiness in the area of education and learning, even though he completed an online college course during that year. When queried, he replied that he missed the camaraderie of his school environment. Nick's other low score in the domain of spiritual state reflected his opinion that the domain itself was of little importance to him. Natalie reported a healthy improvement from her scores of 2004, but some shortfall from perfect satisfaction was the result of her struggle to make friends during her first year in a new country. My scores, although much improved since 2004, indicated that my recovery from a period of extreme unhappiness (or crisis) was slower than the children's — not an unusual phenomenon for any mother!

Nick's scores for 2009 came as quite a surprise. My predicted scores for him in most domains were quite high — I thought he was happy. I mistook his high scores in the area of play and fun for a high level of general wellbeing. But his low scores, especially in the areas of friendship, family relationships and meaningful work made me feel sad. I queried him about family relationships and he said that of course he missed all our relatives back in Canada, but he also had a complaint about our immediate family. He expressed a sense of frustration that Jim's interaction hadn't changed much over the past few years. Nicholas said that although he had grown into a mature man, his father still addressed him as a teenager. These results prompted a meeting between father and son where both had the opportunity to elaborate on their feelings about evolving relationships.

In Nicholas' case, some of his high unhappiness scores reflected the real lack of opportunity he experiences due to his disability. This applies to the domains of harmony with nature as well as beauty and creativity. In 2006, Nick was more satisfied in these areas, but when I asked him about that, he reported that everything seemed better in 2006 because moving to England was so much fun and exciting.

As a result of the index, I was able to chat with him at length about some ways in which we might change his lifestyle to make him happier. We talked about how to find at least one activity every day that would involve learning and meaningful work. Nicholas indicated that he enjoyed doing the index because his parents and helpers could now help him pursue more fulfilling activities. Nick's wellbeing remains a work in progress.

The index that we used helped everyone in my family to better understand how we felt about our life opportunities, choices and actions over time. But should such a tool, or a more elaborate version of it, be used by governments to inform policy-making? The Hon. Roy Romanow and others at the Canadian Institute of Wellbeing believe it should. A Canadian index exists, and efforts are underway to develop a composite index — a single number that moves up or down (like the
TSX
or the
DOW
Jones Industrial), offering a snapshot of whether or not the overall quality of life for Canadians is going up or down. According to the institute's website:

The Canadian Index of Wellbeing (CIW) is a new way of measuring wellbeing that goes beyond narrow economic measures like GDP. It will provide unique insights into the quality of life of Canadians — overall, and in specific areas that matter: our standard of living, our health, the quality of our environment, our education and skill levels, the way we use our time, the vitality of our communities, our participation in the democratic process, and the state of our leisure and culture. In short, the CIW is the only national index that measures wellbeing in Canada across a wide spectrum of domains.

The CIW goes beyond conventional silos and shines a spotlight on the interconnections among these important areas: for example, how changes in income and education are linked to changes in health.

The
CIW
is a robust information tool, one that policy shapers, decision-makers, media, community organizations and the person on the street will be able to use to get the latest trend information in an easily understandable format.
42

The Canadian index includes four broad categories of wellbeing for assessment: living standards, healthy populations, community vitality and democratic engagement. For example, the following headline indicators fall within the Community Vitality Domain: belonging to community, participation in group activities, volunteering, number of close relatives, providing assistance to others, experience of discrimination, trust, walking alone after dark, violent crime and poverty crime. The indicators are a perfectly good set of subject areas for determining whether an individual, group or population feel relatively safe in the context of their community relationships. But in my family's case, the case of a life with disability, these indicators do not have the potential to tell the “real story.” In 2004, for example, the worst year for me and Nick, our scores in many of these indicators would have been high — belying the misery we actually experienced. The story they do not tell is the lack of freedom that we experienced to do anything we wanted due to the oppression of pain and illness. Because I was trying to manage more or less on my own, there was no shortage of caring on my part. I still managed to volunteer at my children's schools that year. My extended family did their best to be supportive. My score in the caring for others category would have been off the scale. Perhaps what this scale lacks is an indicator that inquires whether one has the capability to do something unplanned for fun. Ever. If Mr. Romanow and others at the Canadian Institute of Wellbeing would like to know how many people are affected negatively by disability (and this includes caregivers), a question about spontaneous outings might be a good place to start. And the informational tools for policy-making that encompass the real concerns of those with care needs should be front and centre when it comes to sourcing innovative solutions to serving the needs of an aging population.