The Four Walls of My Freedom (4 page)

Beginning to
Think Differently

I remember being a parent representative on a committee to restructure local services for families like mine. Nicholas was in nursery school at the time. All the heads of social and health-care facilities were at the table and I suggested that we offer direct payments to parents so that they could choose which services they wanted. The director of the children's rehabilitation centre looked at me, alarmed, and asked, “But what if they buy leather pants with the money?” I wondered aloud whether employers would voice the same worry about their workers' paycheques.

John Maynard Keynes once remarked, “Practical men, who believe themselves to be quite exempt from any intellectual influences, are usually the slaves of some defunct economist.”
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I would suggest that those who believe social change can be debated without consideration for its most vulnerable members are slaves to defunct philosophers.

Traditionally, economists have measured standard of living by the ability to buy a basket of commodities or by utility, understood as happiness. The Capability Approach focuses on the kind of life that people manage to lead and whether that life has value to the individual, from their perspective, not ours. This way of looking at the rich and poor of the world takes into account how some poor people can be happy and how those with monetary wealth may be miserable.

Sen's approach is particularly helpful in assessing the wellbeing of people with disabilities and their families, because their values, aspirations and circumstances are so different from the status quo. They may not be able to convert wealth into good living if there is no access to the outside world and its riches.

On the other hand, they may have very little of what is considered important by others, yet they are happy and healthy. Furthermore, people with disabilities are little known to the general public and as such, are likely to be misunderstood. When the Ontario government gave us a little money for respite care, often I didn't hire helpers, I hired a cleaning lady — especially when Nicholas was ill or in pain. I wanted to be with him and he wanted his mum. Sen is concerned more with a person's interests than his or her actions or behaviours.

Now that Nicholas is an adult, the extent to which he pursues interests and enjoys a life that he values is wholly dependent on the assistance of caregivers, together with technological support. Nicholas is reliant on technology to eat, breathe, speak and remain pain free. He is tube-fed by an electric pump and uses an oxygen-saturation monitor at night to alert the carer if he stops breathing. Nicholas has used a switch-operated speaking computer and has used adapted software to learn at school. Recently, by directing his helper on the computer, Nicholas completed an online IT course and he used that knowledge to become a seller on eBay. Nick's exploration of the Internet, with the help of his carers, has even allowed him to discover the experience of being able-bodied in virtual worlds.

Trying to imagine Nicholas' life without technology is difficult, but not impossible. Back in 1998 when Nicholas was ten, much of eastern Canada was declared to be in a state of emergency. Over the course of eleven days, almost 40 millimetres of freezing rain fell, crushing power lines and toppling the entire power grid serving Ottawa and Montreal. While the temperature dropped and we huddled beside our fireplace, the realization dawned on me that without electricity, I could not feed Nicholas. Nick is tube-fed and his pump is electric. His principal mode of communication at that time was a speaking computer, operated via head switches. Without power, Nicholas could not speak. Without heat in the house, he began to shiver. A natural disaster suddenly caused Nick to become much, much more disabled than I had ever known him to be. Luckily, a hotel unaffected by the power outage made room for Jim, me and both children as well as Goldie, our dog. We were all delighted to have an all-inclusive “adventure holiday.” Nicholas has a life that he values, and that value is almost wholly derived from assistive devices, including computer technology. Without electrical power, Nicholas cannot eat or speak. Even worse for him, he is completely cut off from the rest of the world. The ice storm was a lesson in dependency for everyone, especially the frail. Thank goodness for us, it lasted less than a week.

Left to his own devices, Nicholas would die of thirst and starvation. Left to the government, he would exist, but not flourish. With government support and the care of family and friends, Nick has a future as an active citizen whose contributions are valued by all those around him. The Capability Approach in the context of extreme poverty is very much about minimum levels of freedom or
operating space
within which a person can function and aspire to achieve goals. But Sen has deliberately been vague about how his approach might be implemented and assessed in the real world. I've decided to apply the principles in their broadest sense and in the comparative context of my own culture and neighbourhood. Sen advocates using his approach to expand capabilities by removing injustices. But his theories do not directly address the case of disability where physical and mental capacities vary so widely. So, in the context of my own family experience, I have decided to use the Capability Approach to expand the capability space of my family to its maximum, rather than to a minimum. I do so because that is the level I have come to expect as rightfully mine in Canada and the UK as an educated, middle-class person. So, for my family, “What is a good life?” followed by “How can we get one?” are good places to start.

A Plan for the Future

For me, the dawn of the millennium held more fears than just that of a possible
Y
2
K
disaster. Nicholas was almost twelve years old and had survived multiple near-death experiences. Clearly, my son was a survivor. So, the mantra of my worry, “What if he dies?” was slowly becoming “What if he lives?”

In 1999, I began to help my old friend Kathleen Jordan in her efforts to plan a safe and happy future for her son, Christopher. Chris Jordan is Nicholas' senior by almost fifteen years, and through him I had a glimpse of our family's future. I didn't like what I saw. Kathleen and her husband, Bill, still looked after Chris at home. They managed to cope with almost daily emergencies, even as they endured failing health themselves. By that time Kathleen had begun to organize parents in Ottawa, telling us about a revolutionary idea from Vancouver called
PLAN
. Together, we became convinced that this organization could save our lives and teach society how to be more caring in the bargain.

PLAN: AN IDEA IS BORN

In the late 1980s, a small group of people began meeting together in Vancouver, British Columbia, to think about futures that were not their own. Each of them had a son or daughter with a developmental disability, and together, they considered these sons and daughters. They considered their joys and their fears. They considered their dreams and their safety. They considered their places in the world. All of the parents bore well-earned scars from the political battles and guerilla actions they had fought to enable their children to receive the support they needed: schooling; housing, medical and psychological care; money. They knew the system well, could negotiate its highways and its alleys and its cul-de-sacs. But they were tired. And they were afraid, because they realized that advances in health care meant they would have to face a problem few people in history had ever faced. Their disabled children were likely to outlive them. Despite their hard-won expertise, their intricate knowledge of the agencies and organizations meant to serve the disabled community, they knew that, sooner or later, their children would be without their advocacy, cast adrift in an institutional world that could not protect them from the devastating personal and systemic loneliness that the parents feared the most.

In many ways the small group of parents had itself been born of loneliness. The group was the work of a peculiar synchronicity. Each member had suffered recent and profound loss: death, illness, divorce — disorienting chords that had left them bruised and battered individually, but also open to thinking about the world and working with each other in a new way.

And a new way of thinking and working was exactly what they sought. They sensed that the current model of providing for the disabled, the familiar twentieth-century concoction of institutional service and legal contest, provided few answers to their sons' and daughters' most meaningful questions and yearnings. And they knew that the nonprofits that worked within the disabled community were deeply embedded in this model, both mentally (“How else could we do this work?”) and financially, since they received most of their money from government agencies. In fact, group members had been intimately involved in many of these nonprofits, founding them, working for them, sitting on their boards. They knew a lot about governance and policy and legal and financial issues. They had a particular expertise in estate planning; several people in the group were involved in workshops that helped parents develop wills and trusts appropriate for supporting disabled offspring. But they all felt that the structures they had participated in and helped create were missing something vital.

Jack Collins was there. He says, “We all spent years building these nonprofit organizations that were supposed to be providing services to our children, but they did not really look at the needs of the person . . . [Our local association] didn't offer anything but programs which suited the needs of the association.” He talks about his daughter Pam: “Whenever we asked for something, they put her in a training program.” He pauses and stares at his hands. “They trained her to bake muffins once.”

Jack says that what the members of this small group shared, in addition to a particular family experience with disability, was “complete dissatisfaction with this system.” They wanted to create something entirely different, an organization, a movement, a way of understanding the world that would secure the futures of their children and others like them by acknowledging and responding to their deepest human needs, not simply their superficial predicaments.

The group, however, had little notion of what that something might be. So they talked with each other and they visited different programs. They opened, without mercy, their own assumptions and wounds. Funded by research and planning grants, they spent three years in deep inquiry, immersed in profoundly honest, occasionally contentious, dialogue with each other and with the world around them. Slowly, a fresh way of understanding the disabled community and the organizations meant to serve that community began to emerge. A fledgling model of a different kind of organization with a different way of seeing the world took shape. Like all fledglings, the model was damp and awkward and fuzzy in places. But in 1989, with a tiny office, and still only the vaguest idea of what it would all mean eventually, the Planned Lifetime Advocacy Network,
PLAN
, was born.
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Like all innovative, simple and brilliant ideas, this model of support began with an unexpected question. Rather than asking who would look after their sons and daughters, or who would pay for their care, these parents asked, “What IS a good life?” Their consensus was that a good life for people with disabilities is not very different from a good life for anyone else: friends and family, a place of one's own, financial security, choice and the ability to make a contribution to society are the key ingredients.

First and foremost in realizing these values or freedoms in the lives of people with disabilities is an understanding that caring relationships are the key to a good life. Furthermore, these wise parents recognized that people with disabilities often find it difficult to forge and sustain friendships. But caring relationships alone are not enough to sustain a good life — individual contributions must be enabled and valued in families and communities.

Finally,
PLAN
's model to support children with disabilities as they age is directed and financed by families. The portion that is not paid by families is raised through charitable fundraising, coupled with awareness training for the public about our children's civic contributions. Operational funds remain safe from cutbacks by steering clear of government funding — the family has total control of the entire process. The
PLAN
model is unique in the sense that it encompasses the aspirations of the whole family, not just the person with a disability.

I rely heavily on my friends to enrich my life, through good times and bad. My friends leave care packages at my door when I am ill, they pray for my elderly mother if she is hospitalized and they laugh with me over dinner. I want Nicholas to have that same kind of support after Jim and I are gone. I know that other friends or family members can never replace Jim and me in Nicholas' life, and I also know that Natalie cannot shoulder that responsibility alone. The letters in
PLAN
stand for Planned Lifetime Advocacy Networks. What do network members do?

In the early years of
PLAN
, the status quo for people requiring care in their community was to receive services and participate in programs funded by tax dollars. No one imagined that people with disabilities had anything to give back to society. But anyone who loves a vulnerable individual will be happy to list that person's gifts and contributions to family and the wider community. For anyone who has the capacity to act at all, a valued contribution gives meaning and confers value to that person's life. Contribution equals citizenship became a core value of the
PLAN
movement. At the Ottawa
PLAN
parent group (Lifetime Networks Ottawa), I organized a fundraising tour of beautiful private gardens in the city. Any activity that I undertook had to showcase our values. So each garden on the tour had a greeter (one of our children) who took tickets and welcomed the public. Nicholas performed this function at our own neighbourhood garden. Even though he had required some assistance, I noticed that everyone was careful to thank Nick for his helpful participation.

Over the past twenty years,
PLAN
network members have been acting in the best interests of a friend with a disability by:

• Monitoring the formal programs and services that our relatives receive
• Becoming effective advocates
• Serving as executors and trustees or as advisors
• Offering help and support in making important decisions
• Responding promptly and effectively to crisis
• Solving problems and handling the unexpected
• Carrying out the wishes of parents

All of these roles are shared and performed by a group of individuals who truly care for the person at the centre of the network. Network members are not paid, nor are they volunteers. They are friends. And
PLAN
exists to ensure that network members function together as
good
friends of the person at the heart of the network over his or her entire lifetime.

PLAN
offers families the tools for creating a future that includes enduring friendships as well as a financial plan to support a good life for their relative. Families pay for these services and leave money in their will to ensure the enduring integrity of their personal vision.

The values of the
PLAN
movement continue to inspire me; the founding families unwittingly went about identifying and creating the circumstances of human freedom for their children with disabilities. The
PLAN
model is very much a Capability Approach model — it is least restrictive, but most supportive. But at the moment, despite the efforts of those involved with advocating for measures to encourage active and caring citizenship, the issues relating to a good life for people with disabilities are of little interest to those unaffected by disabling conditions.

People may read in the papers about another tragic case of a parent who, being overwhelmed, takes the life of a son or daughter with disabilities. But they won't read this story and relate it to the care of their own aging parent. The fact is, in the years ahead, all people with a need for care in the community will be in competition for ever-scarcer resources from the public purse. And in a climate of limited resources for care, everyone needs friends.