The Four Walls of My Freedom (6 page)

Worthy of Dignity

If she ever met him, I wonder what the American philosopher Martha Nussbaum would make of Nicholas. I wonder if she would see him as worthy of sympathy, but not respect.

When Nussbaum began to work with Sen on Capability matters, she decided that Sen's ideas needed fleshing out for the real world. So, she devised a list of ten essential capabilities that, if reached to a minimum level, constituted the ingredients of a decent life — a life worth living. Nussbaum calls these minimum core social entitlements for a decent life the “Central Human Capabilities.”

1.
Life.
Being able to live to the end of a human life of normal length; not dying prematurely, or before one's life is so reduced as to be not worth living.

2.
Bodily Health.
Being able to have good health, including reproductive health; to be adequately nourished; to have adequate shelter.

3.
Bodily Integrity.
Being able to move freely from place to place; to be secure against violent assault, including sexual assault and domestic violence, having opportunities for sexual satisfaction and for choice matters of reproduction.

4.
Senses, Imagination and Thought.
Being able to use the senses, to imagine, think, and reason — and to do these things in a “truly human” way, a way informed and cultivated by an adequate education, including, but by no means limited to, literacy and basic mathematical and scientific training. Being able to use imagination and thought in connection with experiencing and producing works and events of one's own choice, religious, literary, musical, and so forth. Being able to use one's mind in ways protected by guarantees of freedom of expression with respect to both political and artistic speech, and freedom of religious exercise. Being able to have pleasurable experiences and to avoid nonbeneficial pain.

5.
Emotions.
Being able to have attachments to things and people outside ourselves; to love those who love and care for us, to grieve at their absence; in general, to love, to grieve, to experience longing, gratitude and justified anger. Not having one's emotional development blighted by fear and anxiety. (Supporting this capability means supporting forms of human association that can be shown to be crucial in their development.)

6.
Practical Reason.
Being able to form a conception of the good and to engage in critical reflection about the planning of one's life. (This entails protection for the liberty of conscience and religious observance.)

7.
Affiliation.
A. Being able to live with and toward others, to recognize and show concern for other human beings, to engage in various forms of social interaction; to be able to imagine the situation of another. (Protecting this capability means protecting institutions that constitute and nourish such forms of affiliation, and also protecting the freedom of assembly and political speech.)
B. Having the social bases of self-respect and nonhumiliation; being able to be treated as a dignified being whose worth is equal to that of others. This entails provisions of nondiscrimination on the basis of race, sex, sexual orientation, ethnicity, case, religion, national origin.

8.
Other Species.
Being able to live with concern for and in relation to animals, plants and the world of nature.

9.
Play.
Being able to laugh, to play, to enjoy recreational activities.

10.
Control Over One's Environment.
A.
Political.
Being able to participate effectively in political choices that govern one's life; having the right of political participation, protections of free speech and association.
B.
Material.
Being able to hold property (both land and movable goods), and having property rights on an equal basis with others; having the right to seek employment on an equal basis with others; having the freedom from unwarranted search and seizure. In work, being able to work as a human being, exercising practical reason and entering into meaningful relationships of mutual recognition with other workers.
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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.
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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.”
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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.”
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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.

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 allow 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.