A cursory reading of the list reveals the simple fact that Nussbaum did not consider people with disabilities in her thinking. But she is a great philosopher and although she recognizes that people with disabilities may very well never be capable of attaining the minimum standard of functioning, Nussbaum recognizes that this poses a philosophical problem of their right to be. If practical reasoning is at the heart of being human, where does this leave our sons and daughters with cognitive disabilities? People like Eva Kittay’s daughter Sesha have been persecuted, shunned or even murdered; indeed, inclusion and equality are very contemporary concepts. Disability activists have criticized Nussbaum’s early work that positions people with severe cognitive disabilities outside an ethical framework for freedom and fairness that works for everyone else. But her more recent work shows a change of heart. In Frontiers of Justice, Nussbaum attempts to reconcile her list of ten basic capabilities (that she developed as a response to Sen’s approach, which is far less prescriptive) with a theory of justice for people with severe disabilities.16
As examples, she uses the lives of three young people: her own nephew, Arthur, who has Asperger and Tourette syndromes; philosopher Eva Feder Kittay’s daughter, Sesha, who has cerebral palsy and a severe cognitive delay; and the writer and intellectual Michael Berube’s son, Jamie, who has Down syndrome. She describes the personalities, talents and abilities of these three young people and concludes that they may never become functionally able to repay society for the resources that they consume. If society provided the appropriately assistive training and supports to Arthur and Jamie, they might eventually be employed. However, Sesha is more limited in the range of her potential productive contribution to society, even with increased support. Nussbaum examines whether Sesha is “a different form of life altogether, or do we say that she will never be able to have a flourishing human life, despite our best efforts.”17 Nussbaum concludes that in a just society, Sesha would not have been born with disabilities; scientific advancements would have removed her handicaps. So, Sesha is excluded from Martha Nussbaum’s Capability Approach because she will never attain adequate functional ability to be “human.”
Kittay may be a great philosopher, but she is also a mother. She retaliates by describing her daughter’s life as “richly human and full of dignity.” She continues: “We need to work hard to see that her life is not tragic.”18 Over the years, I have met many other parents of children with disabilities. Not one of these parents sees their child as tragic or would wish them to be seen as such. Nicholas, Sesha, Jamie and Arthur are adored for being their essential selves. They are celebrated for living their lives richly in the face of daily struggles. This is not tragic; it is a call for understanding about the role of love in families and the need for community support.
CHAPTER EIGHT
Some Mother’s Child
A friend who is a priest in the Church of England once remarked that “God’s gift to us is being. Our gift to God is becoming.” This idea rings true in the context of Reinders’, Pailin’s and Kittay’s ideas. The essential worth of another is received love: God’s love, a mother’s love, a father’s love, a sibling’s love — it doesn’t matter. This love is the great equalizer. It is the core of our humanity and our humaneness. It is no coincidence that the worst insults in most languages are against one’s mother. The fundamental insult is not against an individual’s mother per se, but against the idea of received love from someone whose love is unequivocal. An insult against one’s mother can be interpreted as completely dehumanizing — that this person is not worth loving, such that his essential relationship of love and basic trust can be made dirty and worthless.
There is a sense of inertia associated with the idea of being, whereas action is linked to becoming. In being, there are no expectations of doing because the key is receiving love, not giving it. In becoming, there is implied potential, action and choice. It is within this space that human flourishing depends on freedom to exercise abilities, which is why Sen’s ideas are so fundamental to understanding how people living in circumstances of deprivation can better their lives. But it is in this sense of being and receiving love that we experience being fully human. If we accept this idea of being as right and true, and if we accept that human flourishing requires freedom to exercise capability in order to reach individual potential, we can begin to think about a system of fairness and equality that includes everyone, even those who lack capacity for reason or purposive action.
A few years ago, I happened upon the obituary of a woman who had had many children and grandchildren. I recall being struck by the words, written by a grandchild and suffused with love: “Although there were so many in our family, she made each of us feel known and loved.” In knowing and loving someone, there is a suggestion of unconditional acceptance made personal, and a steadfast loyalty. This woman must have been a wonderful listener. To me, this is a description of an ideal mother or grandmother.
To understand how this understanding of mothers’ love must inform our compassionate acts, it is important to look at how to care for those deemed least worthy of receiving that love. Helen Prejean, the nun depicted in the book and film Dead Man Walking, is one example of offering the most challenging compassion. Even our worst criminals are “some mother’s son.” Nothing in this story suggests that crimes committed by these men should not be punishable by society and the law. But there is a clear recognition that human contact with at least one compassionate listener is important even for the most hardened criminals who are facing the death penalty.
Closer to home, I recall one story told to me by Vickie Cammack at PLAN. An elderly woman approached staff at PLAN in Vancouver with a difficult request. Her only daughter had received a life sentence in a forensic psychiatric facility and had already served some years. The elderly mother feared that with her own passing, her daughter would never have another visitor. The woman asked whether PLAN could find someone to visit her daughter and bring her favourite chocolate chip cookies once a month. The staff at PLAN agreed to try and a paid facilitator or “community connector” visited the daughter in prison once a month for one hour. Eleven monthly visits passed with not one word exchanged between the two women. The daughter refused to speak or acknowledge the facilitator at all. At the end of a year and on her twelfth visit, the facilitator said to the prisoner, “Your mum has asked me to visit you because she is worried that she is dying soon. After your mum dies, it’s possible you will never have another visitor. Today is my last visit with you, because I agreed with your mum that I would try for a year to help you. What would you like me to do next month?” The woman looked up from her lap for the first time in eleven months and said, “You can do what you want.” The PLAN facilitator arrived at the prison the next month with chocolate chip cookies. During their months of silence, the facilitator had passed the time by knitting. Eventually, the facilitator taught the prisoner to knit. In this special case, the facilitator dropped her paid role and rather than introducing her to an unpaid friend, became the prisoner’s friend herself. I recall telling this story to the board of directors at Lifetime Networks Ottawa, a PLAN affiliate organization that I helped to found. One of the directors was dismissive, remarking, “Well, if you go around saying that our charity helps murderers who are insane, we are never going to get any support in this town!” I believe that he missed the point.
The point of the story is the notion that the mother–daughter relationship is sacred to civil society. We must not allow anyone to be found unworthy of at least one caring relationship — even those who by all appearances do not deserve a speck of human kindness. Central to this understanding is that one-half of that particular relationship was a mother who was beside herself with grief and worry. PLAN trumpets safety and security through caring relationships. But this safety and security is for all who choose it, not just some.
Amartya Sen intentionally coined the term Capability Approach and not Capability Theory, to al
low for maximum flexibility in applying his thinking about human freedom. In the context of my family, I wanted to examine the extent to which we have enjoyed the “freedom to be” — an existence measured against a myriad of choices that other families take for granted.
By “being,” I mean participation in community life and public institutions for my family. It also implies acceptance in those spheres. But participation in community life is not easy or straightforward. Like all families, individual needs may pit themselves against the freedoms of another.
In order for Nicholas to have the freedom to pursue a life that he values, he must have twenty-four-hour nursing care. For many years, I performed that care myself. Now we have a team of paid staff around the clock. They allow Nicholas to pursue his interests and live a good life, but they also permit me to flourish as well. The help that we have now that Nicholas is twenty-one can be seen as reciprocity from the state to me, for having performed the first eighteen years of Nicholas’ care.
During Nicholas’ younger years, there was no one in my family who could have taken over my responsibilities, and I became worn out. We always relied on Jim’s work to sustain us, and in order for him to flourish in his career, he had to be unimpeded by the constraints of carrying out Nick’s physical care. Our Natalie’s freedom involved carving out a space for herself in the family, one that excluded her brother, whose needs, she felt (with some reason), always trumped her own. Balancing these fundamental but conflicting freedoms on behalf of my family has been my life’s work. And what of my own freedoms? How can a mother possibly demand a freedom to “be” in the face of so many competing interests? If looking at personal reality is like looking through a prism, perhaps I needed to turn the glass a little to capture a different view. Perhaps I needed to imagine a new set of preconditions for freedom.
CHAPTER NINE
Welcome to Holland
“So Brother Matthew locked the gate behind me, and I was enclosed in the four walls of my new freedom.”
— Thomas Merton, The Seven Storey Mountain, 1948
Over the years, I learned not to define my freedom to “be” as having anything to do with choice as an engine for happiness in my life. Besides, my own self-interest was so tied to the interests of my children that my sense of personal freedom to change was something of the past. When other mothers in my neighbourhood began to work part-time or took courses as their children grew, I began to work at accepting the inevitability of my unchanging role. Nick’s physical care was always going to be similar to that of a newborn. He required total care and always would. Any idea of exercising personal choice as a measure of my own self-worth had to die.
In 1996, we left England and returned to Ottawa. It was late August when we moved back into our house surrounded by a large lawn on two levels. Tall pine trees shaded the roof, and a mature hedge bordered the street in front and on the side, stretching around the corner. “The grass looks dead over there,” I said to Jim. He went over to investigate and, meaning to pluck out a few blades, found the turf lifting in his hand like a rug off the floor. It was an infestation of grubs that were attacking lawns throughout the city, consuming the roots of grass at an enormous rate. The first year we tried sprays and treatments, and the second year, when they came back, I decided to plant a garden. In a small section, I ripped up the dead grass, spread topsoil and spent hours searching garden nurseries for plants that could withstand both shade and the acidity of pine needles on the ground. I planted Japanese spurge around the base of the trees, as well as hostas, euonymus, ferns and tulip bulbs for the spring. I planted peonies where the late afternoon sun would shine. I was learning to be alone.
The following spring, a house on the next street was being bulldozed to make room for a new mansion to be constructed. I asked a member of the demolition team about the plants in the garden — would they be saved? “No, ma’am, the whole property’ll be bulldozed tomorrow.” I ran home for plant pots and a spade. I threw them into the back of our van and drove around the corner ready to rescue as many plant orphans as I could carry. This was a mature perennial garden, planted and tended carefully over many years. A bank of day lilies bordered the back wall of the empty house. A wide circular bed held bearded irises, tulips, daffodils and a good-sized rhododendron. Ferns blanketed the ground under a gigantic maple tree.
I felt so bittersweet peering into the house where children had been raised, holidays had been celebrated, families had argued. Tomorrow there would be nothing left to hold these memories and experiences. I dug as many plants as I could, filled the van three times over, and began the backbreaking digging to get every bush and flower into the ground before Nicholas came home from school at
3 p.m. So began my love affair with growing things. At first, some new plants died almost immediately. I began to pay more attention to the little cards in the pots at the garden centre, reading each carefully. I realized they were serious when they said “full sun.” For three years, my garden was my refuge. In the first days of spring, I would step into the half-frozen earth, scanning the ground for any green shoots. Even if they weren’t there in the morning, sometimes they would appear by the afternoon if the day was particularly warm.
I remember reading a film review in the newspaper. I never actually saw the film and I cannot even recall its name. But the reviewer’s words are still with me today. The film was about a convent somewhere in Europe. A young nun complained about having to wash dishes and scrub pots. The Mother Superior chastised her, saying, “There is meaning in those dishes, in the act of scrubbing.” As the reviewer said, the film was a testament to the idea that the extraordinary exists within the ordinary; that the entire moral universe can be found in the mundane tasks of everyday life. This sense of wholeness and connectedness is what I found in my garden.
Outside our front door in Ottawa, we had a black wrought-iron openwork light fixture. Each spring, a pair of tiny sparrowlike birds called redpolls came to nest in our lamp. The first year they came, all their bits of straw and string simply fell through the mesh onto the ground. Annoyed by the mess, we swept up and thought nothing more of it until one day, there on the ground lay two tiny, broken bright blue eggs. I wept a little, berating myself for not understanding their simple need to have a safe nest for their offspring.
The next year when we heard their distinctive chirps at the door, Jim cut some bits of cedar and created a floor on the base of the lamp. Nest building began in earnest, and soon there were four tiny eggs tucked up amongst downy roan feathers. That year, I watched as the mum kept her eggs warm and the father worried nearby. They eventually hatched into a noisy quartet of open beaks and soon enough they were ready to fly. I sat an entire day, watching in suspenseful anticipation as every redpoll in the area arrived on our pine tree to begin “training” with the youngsters. By turns, each bird would fly to the top of the lamp, perch there for a second and fly off to the nearby branch. The young birds had a tricky rite of passage: they had to fly inside the lamp and exit through a narrow passage at the top of the ironwork. By dusk, all the birds had left the nest and we could finally turn on the light and resume our life without our temporary tenants.
These birds living in my midst, nurtured by us and by the rest of the flock, gave me a certain antidote against loneliness. I had genuine curiosity about the life in my garden and most certainly, felt “some minute, divine spark inside me.” By this time I had given up on any idea of justice or natural order in the world. Contained in my garden, I thought, there is transcendence; there is grace. I began to think that peeling potatoes, raking leaves and mixing cakes were all a sort of prayer. I began to understand that to be free, I had to have an antidote to despair.
Theodore Zeldin writes about how some people have acquired immunity to loneliness in his book An Intimate History of Humanity.19 In fact, one of his themes is actually called “Loneliness as an Obstacle to Freedom,” which of course speaks directly to me, given that I am dis
cussing my family’s “Freedom to Be.” Being the mother of a child with multiple disabilities is, by definition, a very lonely life. Nicholas’ illness, mobility challenges and communication difficulties never made us top of the guest list at friends’ and neighbours’ homes. When his health deteriorated and pain became our constant enemy, we hardly ever spoke to anyone save health professionals. I had wonderful friends and an extraordinarily supportive family, but I found it impossible to share the gut-wrenching worry that seemed so exclusive to our little family. Zeldin talks about the fear of loneliness as being a great barrier to personal freedom. He observes that those who have overcome a fear of loneliness have done so through experiencing a solitary lifestyle, whether by choice or even by incarceration. But he also says, “The final form of immunisation has been achieved by thinking that the world is not just a vast, frightening wilderness, that some kind of order is discernible in it, and that the individual, however insignificant, contains echoes of that coherence. People who believe in some supernatural power have their loneliness mitigated by the sense that, despite all the misfortunes that overwhelm them, there is some minute divine spark inside them.”
Apparently I am not alone in my experience. In Reinders’ book, he quotes another mother of a son with multiple and severe disabilities:
For many, many years, I was confined to the house, alone and without the support of relatives or friends. My husband was at work all day and I was with Oliver and the other five children. This enforced seclusion was difficult for me; I had a restless, seeking spirit. Through Oliver I was held still. I was forced to embrace a silence and solitude where I could “prepare the way of the Lord.” Sorrow opened my heart and I “died.” I underwent this “death” unaware that it was a trial by fire from which I would rise renewed — more powerfully, more consciously alive.20
The Four Walls of My Freedom Page 6
