The Four Walls of My Freedom (3 page)

Driving while sobbing isn't easy, especially on a rainy day. But I managed to arrive at Emergency before Nicholas. I waited, imagining him on a stretcher, eyes rolled back with horribly jerking limbs.

I heard him before I saw him. The ambulance attendant held him out to me, explaining over his wails that he had woken up halfway to the hospital and screamed like a banshee ever since. Oh, here was my boy, he was all right. He was himself. I hadn't realized how frightened I had been that a seizure, something I knew nothing about, would somehow lobotomize him and render him unrecognizable. I thought that seizures inevitably caused more brain damage. I held him tightly, breathing deeply with relief at his wholeness.

Although the
EEG
test looked normal, the neurologist said, yes, it was probably a seizure. It might happen again today, in a month or never again. If you insist on medication, she said, it is Phenobarbital, but it slows learning development. I thanked her very much for the information and went home without a prescription. Years went by before I could hear a telephone ring without my heart pounding.

The next day, I brought Nicholas to school myself and stayed with him. My jaw was still set against this school and the diagnosis for Nick's learning that it represented. But I sat in this sunny, quiet room listening to Beethoven. Only two other children were in class: one in a hammock swinging gently and the other stacking blocks on his wheelchair tray, his teacher whispering encouragement. I had to admit that this was the perfect place for Nicholas to gently begin his schooling. I was determined that a mainstream classroom was his future, but for now, the Cumberland Hub would keep him safe and soothed.

After a year of quiet caring in that sunny, warm room with its woven hammock for gentle “sing and swing” therapy, I began to explore preschool options in my neighbourhood. After the seizure, I had decided the bus was unsafe for Nick, and the Cumberland Hub was more than half an hour from home, which meant I was spending two hours a day driving. I was thrilled when Nicholas was accepted as an exceptional student at a local church preschool. But I hadn't realized that in transferring Nick to his new preschool, he would lose all his therapies. If physio, speech or occupational therapies were going to be part of his weekly routine, I would have to book these appointments at the hospital treatment centre. Mainstream school and therapies didn't mix, I was told. The trade-off to have Nick in the mainstream translated into a terribly punishing schedule for us both.

Fighting to streamline services at one location was my first political battle and my first victory. Eventually, Nicholas would stay at school after hours two days a week for occupational and physiotherapies. Therapists would train the school staff how to engage Nicholas with his classroom and its contents. They came with ideas and equipment that made it possible for Nick to paint, play with blocks and use the outdoor playground. Nicholas was happiest watching the boisterous activity of his classmates. His report identified a principal strength as “smiles a lot.” I was annoyed at how patronizing this sounded with its inference that passivity and simple-mindedness constituted academic achievement.

But fatigue and a nagging sensation of mild nausea distracted me from my usual ire. I was pregnant. Jim and I had been trying for another child, and the previous year I had experienced the sadness of a “missed abortion” — our embryo had died in utero. But this baby was meant to be and nine months later, our Natalie was born, a sister for Nicholas. A few moments after her appearance in the operating room, the doctors placed Natalie on the steel table to wash her. Lying on her stomach, she pushed up with her arms, lifting her upper body off the table. Natalie was only a few minutes old and already she could perform a move that Nicholas could only imagine! Mothering a healthy baby was a revelation to me. With each of Natalie's milestones, the extent of Nicholas' differences was revealed in harsh light. With her first steps, I cheered and cried tears of amazement and pride mingled with sadness for Nick's loss.

But babies have a way of seducing those who care for them and Natalie firmly established her personhood almost immediately. I was more nervous than a first-time mother, thinking I was incapable of sensing what a “normal” baby might need or want. Soon I knew her hungry cry from her painful ones. I knew her frustration with confinement — suddenly the world had shifted to make room for another kind of future for our family.

Amartya Sen and
the Capability Approach

In many ways, the peripatetic lifestyle of diplomacy has been good for our family. As a young couple, our first posting was to Moscow in 1978. Living with limited freedoms there taught us the value of resilience and creativity when faced with oppression. Later, a second posting in Washington, DC, was memorable for career-building and weekends at the East Coast seaside with friends. But when Nicholas and Natalie arrived in our family, the idea of packing up seemed daunting, yet I was determined to try. London beckoned and four years in England proved to us that not only could we travel, but we could also thrive in a foreign land. We returned to Ottawa and lived quietly for ten years. Then in 2006, Jim told me that the prime minister had asked him to be high commissioner in London, and I was thrilled. I play-acted thinking about the offer, and then shouted “Yes!” as we laughed and hugged each other and the children. On August 27, 2006, we arrived in London and moved in to No. 3 Grosvenor Square, the official residence of the Canadian high commissioner.

Until recently, I had not considered writing a book about our family life with Nicholas. I always believed that Nick's disability was an accident of nature and had no bearing on society in general. I knew from experience that when I began to talk to most people about my daily life, their eyes would glaze over and they would turn away, muttering excuses. Anyway, the disability community did not need another piece of misery porn or worse still, inspirational lit. But all that changed in 2008 during a casual conversation with Dr. Susan Hodgett of Ulster University in Belfast. Susan had nominated my husband, Jim, to receive an honorary doctorate from her university on account of his own and Canada's role in forging an enduring peace in Northern Ireland (Jim had worked on the peace process during our previous posting to the
UK
in the 1990s).

As Susan and I stood waiting for Jim to be capped and gowned, we chatted about my interest in learning lessons for disability and nonprofit work from those working in the area of development and extreme poverty. Susan breathed in and said quietly, “You should know about Amartya Sen.” As she began to describe Sen's ideas, I almost felt the earth shift underfoot. I realized that using Sen's ideas of human freedom and potential gave Nicholas' life and my own experience an important ethical connection to the rest of society. If his ideas could be harnessed as a language to speak about having the freedom to live a life of value
even for us
, then this had to be important to anyone who cared about fairness and justice in society generally. Suddenly, I saw that we were not just the victims of bad luck — rather we had something fundamental in common with the oppressed groups in Sen's research. Surely this was something worth exploring and writing about.

Amartya Sen won the Nobel Prize in 1998 for his work in combining the disciplines of economics and philosophy. He advocated dispensing with the usual measures of assessing poverty, such as household income and
GDP
, believing they offered insufficient insight into the real causes of human misery and injustice. He began to explore poverty through the lens of the choices or freedoms that individuals have within circumstances of deprivation. The key idea of the Capability Approach is that social arrangements should expand people's capabilities, or their freedom to promote whatever activities and lifestyle they value. Sen argues that the central concern of having a decent and valued life worth living is that of freedom. It is not money and it is not “accomplishments.” The approach examines the range of possibilities for human flourishing within a given set of circumstances, especially circumstances involving adversity.

An example that Sen often uses to illustrate his Capability Approach is that of two starving people. One is in the last stages of a hunger strike, the other a victim of a prolonged drought. Measured without benefit of Sen's approach, these two individuals appear identical. It is Sen's approach that offers us insight into their very different options or possible choices for action to alleviate their suffering. Sen calls this their “capability space.” In his Nobel Prize–winning autobiography, Sen wrote: “The approach explored sees individual advantage not merely as opulence or utility, but primarily in terms of the lives people manage to live and the freedom they have to choose the kind of life they have reason to value. The basic idea here is to pay attention to the actual ‘capabilities' that people end up having. These capabilities depend both on our physical and mental characteristics as well as on social opportunities and influences (and can thus serve as the basis not only of assessment of personal advantage, but also of efficiency and equity of social policies).”
1

Significantly, Sen uses the word
equity
rather than
equality
— an important distinction for those concerned with disability. The word
equality
applied to people with handicapping conditions has often led to abandonment, such as the child in a mainstream school with no support services because extra help would be
unequal
treatment. It seems to me that equity is a much more helpful aspiration — one that encompasses the recognition of capacity and resilience on the part of vulnerable individuals, as well as those who love and support them. This approach shifts attention away from the medical model of disability to a view of personal freedom and the choices that one has, given the effects of impairment on those available choices. Effectively, the disability experience is positioned alongside gender and age as just one aspect of human diversity.

For me, Sen's Capability Approach represents a lens through which I can assess the value of my life, and understand my choices in relation to programs, services and policies that have affected us throughout my son's life. Sen speaks of the “freedom to live the life you value and have reason to value.” I had a life mapped out for myself before Nicholas was born, a life that I imagined I valued. The circumstances of our family life with Nicholas forced me to reconsider my values and my reasons for holding those values. In his body of work, Sen is responding to the horror of extreme poverty and famine. I have never been hungry. I live in a beautiful home and in many regards have led a highly privileged adult life. Yet the questions that Sen's Capability Approach poses about human potential and the barriers to achieving it are the cornerstone of understanding the experience of our family. If Sen's idea of the capability to live a life worth living is dependent on one's physical and mental characteristics as well as one's social opportunities and influences, how could a family like ours possibly survive, much less thrive? My son's physical characteristics cause him to be completely dependent on others.

Although Amartya Sen has focused on issues relating to poverty and justice, he has also spoken about disability. At a World Bank Conference on Disability in 2004, he lamented the failure of theories of justice to address the issue of disability adequately. In his keynote speech at that conference, Sen explored the relationship of wealth, disability, freedom and justice:

Wealth or income is not something we value for its own sake. A person with severe disability need not really be judged to be more advantaged than an able-bodied person, even if he or she has a higher level of income or wealth than the thoroughly fit person. We have to examine the overall capability that any person has to lead the kind of life she has reason to want to lead, and this requires that attention be paid to her personal characteristics (and this includes her disabilities, if any) as well as to her income and other resources, since both can influence her actual capabilities. To ground a theory of justice on the informational foundation of opulence and income distribution would be a confusion of ends and means: income and opulence are things that we seek “for the sake of something else,” as Aristotle put it.
2

Here, Sen is distinguishing between “earning handicaps” and “conversion handicaps,” or how one is able to convert money into good living. Giving someone with disabilities a million dollars doesn't give them a good life if the money stays in the bank and the individual sits at home unable to convert his riches into enjoyable living. It is easy to see why, for people with disabilities, this line of thinking is extremely helpful in understanding the injustices that plague them. But Sen does not limit his definition of a conversion handicap to finances. He also points out that social facilities are a “common good,” which are often not accessible to people with disabling conditions. Community centres, schools and churches may exist, but if someone like Nicholas cannot get into these buildings, they will hardly contribute to his wellbeing. For people who require care, it is their loved ones who naturally take it upon themselves to mediate a deal for turning community resources into good living.

My own experience tells me that converting money into fulfillment requires imagination and self-discipline. Money squandered, like any gift, can lead to misery (as in the case of gambling addicts). But the same could be said of disability. That particular fact of life can be converted into a positive force that reveals the best in human qualities, such as determination, resilience, creativity and compassion. It is a serious misconception to believe that money automatically translates to good living, or that disability converts to misery. Mark Oakley, our priest and old friend, put it best: “It is not circumstances that make or destroy a life. Anyone who has survived the death of a lover, the loss of a position, the end of a dream, the enmity of a friend knows that. …It is the way we live each of the circumstances of life, the humdrum as well as the extraordinary, the daily as well as the defining moments, that defines the quality of our lives. Each of us has the latitude to live life either well or poorly. Ironically enough, it is a matter of decision. And that decision is ours.”

The American philosopher Eva Feder Kittay has spent most of her professional life writing about what it means to mother her daughter, Sesha. Sesha is now a grown woman and because of a severe developmental disability and cerebral palsy is completely reliant on others. Kittay weighs in on Sen's ideas and how they might affect families such as mine. In thinking about equality, she identifies the fact that all people are not alike with the same abilities as a starting point. In her discussion of Sen's ideas, she explains: “What we want to insure, claims Sen, is not merely that everyone has access to the same goods with fair equality of opportunity, but that we equalize each person's capability to function freely.”
3
This is true equity wherein individuals are free to convert
all
the aspects of their lives into good (or bad) living. If Sen's ideas of freedom, capability and justice had been taken as both a means and an end to disability policy, programs and services, how would Nicholas' early years have been different?

More than two years after my first conversation with Susan Hodgett at the University of Ulster, I managed to make contact with Amartya Sen of Trinity College, Cambridge. With the assistance of generous, well-placed friends and a fair amount of tenacity on my part, I had managed to organize the hottest date of my life. I needed to ask Professor Sen if my application of his Capability Approach for disability in a developed world setting was valid. I wondered whether proposing the idea of a maximum capability set (especially in the area of education) was appropriate. After all, this approach was originally conceived in order to understand minimum levels of capability in the case of people living in circumstances of extreme poverty.

On January 21, 2010, I found myself boarding the train from London to Cambridge. The train was nearly empty, so I spread my papers out on the table opposite my seat. I looked at them and wondered if my meeting with this Nobel Prizewinner would result in my manuscript being left in a Trinity College wastebasket. I arrived early and found what I thought was the correct waiting room. I attempted to compose myself by pretending to read my notes. I moved to the bottom of the stairway that seemed to lead into an upstairs dining room. Suddenly from a lower hall, Professor Sen appeared. We climbed the stairs as he explained the dining arrangements and the menu. Being unfamiliar with academia, let alone casual conversations with Nobel Prizewinners, I wondered if we would have a chance to discuss my book at all. Other academics sat at the long tables and we took our places amongst them. As Professor Sen chatted amicably to others at the table, I smiled nervously and listened. Finally, we finished our dessert and Sen suggested that we retire to the reading room to discuss my project. We found two armchairs by the fire and breathlessly, I asked my questions — was the Capability Approach a valid lens for my family experience? Yes. “It would be a shame if the approach had nothing to offer anyone living above a subsistence level,” he said. Could I apply the approach in an effort to include maximum levels of opportunity and choice? Yes, definitely. I asked his advice on how to present complex ideas in a coherent way for general audiences without losing authenticity. “Ah,” he replied. “Generally I find that readers are generous. If you express a fact or opinion, they will assume you've done the work. Don't worry so much.” I left Trinity that day feeling relieved and resolved. After my conversation with Professor Sen, I was sure that the capability framework would present disability as just one aspect of human complexity in a world where we all interact differently with our physical, economic, social and cultural environments. This was a belief that I considered to be true and a value that I will always hold precious.