The Four Walls of My Freedom Read online

  In the future, groups representing seniors could be pitted against those championing people with disabilities, in a fierce competition for public funding earmarked for social care. Substitute decision-making, powers of attorney and other such agreements already exist to assign roles and responsibilities vis-à-vis choosing care options and medical decision-making. Families enter into financial agreements with government-subsidized nursing homes using pension and retirement-fund savings to cover costs. Sons, daughters and other family members continue to play an active role in the life of their vulnerable relative and often contribute towards extraordinary costs in a collaborative manner with extended family. No one would ever expect to give up their family roles and responsibilities in order to gain placement for an aging and ailing parent. And no son or daughter would be expected to give up their employment, savings or home to pay for a parent’s care.

  So, why do we expect this of young mothers and fathers of children with severe disabilities? Being a good mother means something different to everyone — for me it has always meant help from government in the form of access to long-term-care budgets for high levels of nursing care to keep Nicholas at home. But I know that there will come a time when he has to move into his own “place,” and that time is coming soon.

  When Nicholas is feeling well, and he often is, his disabilities seem invisible to me. Even though he is nonverbal, he has many meaningful sounds that only those closest to him understand, and we have long conversations on a wide range of topics. His language comprehension is almost perfect, although he has conceptual difficulties in some more abstract forms of reasoning. He has a wicked sense of humour and often has his helpers in helpless fits of laughter. So, although I am sometimes using cases of children who are more globally delayed than Nicholas here, I do that with the intention of underlining the ethics upon which our collective response to extreme dependency rests. It is worth picking apart the worst case scenarios of families like mine because these dramas force us to reckon with the moral fundamentals essential to inventing a social framework that will sustain us through good times and bad. One of the moral underpinnings that I require is the freedom to grow old without being my son’s caregiver 24/7. A retirement of sorts, a hope of not changing my son’s diapers when he is forty-five and I am past eighty is a moral “right” in my view. Neither is it acceptable for a young child to care for a disabled parent. The natural trajectory of giving care to another is a model for normal here, and our society should use it as a benchmark in policy-making.

  In the current dialectic on social inclusion, there is a lot of talk on the subject of reciprocity. “What goes around, comes around” is a phrase often heard. Notions of reciprocity in action have galvanized communities to trade services, such as delivering meals or retired people and taxi drivers befriending shut-ins by shuttling them to medical appointments. But reciprocity is also an ethical idea that underpins our caring for an elderly parent who gave us life and a decent upbringing.

  In our family’s case, is there any duty of reciprocity here and if so, to whom or what should I (as Nick’s primary caregiver) be looking for something in the way of payback for my son’s care? Who will repay me for the care I give to my son? Who will care for me and Jim when we are infirm? Obviously, it won’t be Nicholas. And Nick will most likely never be employed, so his life exists outside a social contract with the state. He will not pay taxes or contribute to a national pension plan. The case of children like Nicholas who are net consumers of social funds and who will never repay the state by becoming employed is one that poses the most basic of ethical dilemmas. In the context of shrinking national economies, hard questions have to be asked about the human worth of people who will never be employable. Sarah Palin’s infamous Facebook post suggesting that “Democrat death panels” might order the euthanasia of noncontributing, dependent citizens, played directly into the worst fears of an aging population. Of course this was transparent, politically motivated fear mongering, but it received some traction because people do fear the natural endgame of the current thinking on dependency. Policies, programs and services are all directed at achieving independence and self-reliance.

  But a hardline interpretation of those ethics leads people like Robert Latimer to be isolated in their attempt to bring up a totally dependent child without the help of friends, community or government resources. Such a stance does no favours for the state either, because the risk of catastrophic family breakdown is so high.

  So, how might our society begin to think about a fairer deal for supporting vulnerable citizens? Eva Feder Kittay coined the word doulia to describe a new paradigm for reciprocity for caregivers in the community. She describes doulia as an ethical principle that recognizes giving care as an important contribution to the overall good of society. “We can ask whether parents or kin who assume the role of caregiver should have claims on the larger society to support them in their efforts to provide care. If, for all the effort and care in raising a child with disabilities into adulthood, there is no payback (conventionally understood) to the society at large, can we still insist that there be a state interest in helping families with the additional burdens of caring for a developmentally disabled child? Is there a state interest in assuring families that their vulnerable child will be well cared for when the family is no longer able or willing to do so?”34 Kittay answers her own question with a resounding yes and that response is rooted firmly in her own mothering experience. She describes a concept of interdependency or “nested dependencies” that recognizes the inevitability of dependency as a fact of being human. It is via the idea of doulia that reciprocity can be realized through policy because the driving force is an equality that “our full functioning presumes our need for and ability to participate in relationships of dependency without sacrificing the needs of dependents or dependency workers.”35

  Carers’ organizations in the UK are acutely aware of how their constituents are often exploited. When the UK government produced a policy on disability titled “Putting People First,”36 the Princess Royal Trust for Carers published a response entitled “Putting People First—Without Putting Carers Second.”37 For someone like me whose charge is incapable of reciprocating care, this idea is a welcome lifeline. Here Kittay is advocating an ethical framework for governments to look after caregivers so that caregivers can carry out that care without sacrificing their own wellbeing. We know doulia as friends and family members who help a new mother by watching the older children and performing household chores so that the mother can give total care to her newborn. Implicit in this natural family tradition is the understanding that the mother is “owed” care because she is giving care to a much loved, highly vulnerable newborn. Her first priority is to give the best care possible to her beloved charge. But Nicholas is twenty-one years old, and his physical needs are still similar to those of a newborn. What forms of payment can I expect for my years of giving care? Should I have any claim to rest and retirement? And if so, who should provide it to me?

  The feminist scholar Arlene Kaplan Daniels coined the phrase invisible work to describe the many tasks that women perform in their families and communities. Picking apart our folk understanding of what constitutes “work,” Daniels wrote (in 1987):

  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.

  CHAPTER SIXTEEN

  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.