The Four Walls of My Freedom Read online

  In the trial stages of Tyze, one of the first sites was created for an elderly gentleman who needed support, but lived far away from his family. Charles was eighty-seven when his health took a turn. His children called often, but felt keenly the miles between their far-flung homes and the quiet Scottish town where their dad lived alone. It was his son John who suggested Tyze. At first, his sisters didn’t like the idea. They didn’t use email much and were uncomfortable with how sites like Facebook made peoples’ lives so public. But John assured them that Tyze was private and simple to use.

  In less than a week, Tyze had proved its usefulness. Sitting on the other side of the world, it was a powerful thing to read a note from the osteopath who had treated Charles that morning. The woman who cleaned Charles’ house also posted. The daily stories that came through Tyze from Scotland drew a picture for the family of Charles’ diminishing coping skills. Within days, the sisters were converted. “It’s almost as good as being there with Dad when we get your posts,” one of them wrote.

  The site became a global bulletin board where contact numbers were posted along with a calendar of appointments and visits. John and his sisters especially liked the way the site forged connections between them and the professionals paid to treat their dad. The osteopath became an important ally while John and his sisters navigated an unfamiliar health-care system in a foreign country. And for the professionals working with Charles, connection with the family brought them closer to this retired banker and much-loved father.

  Everyone needs care at some point in their life. The roots of Tyze are in the disability community, but its helpful benefits are already being felt around the globe with seniors, single mothers and anyone else who needs extra help to be safe, healthy and happy. We use Tyze with Nicholas to coordinate the myriad of care staff who work in our home 24/7. Every participant on the program has been invited by the administrator (in our case, that’s me). Because the system was designed to accommodate highly personal information, it is completely secure. Tyze has a story facility that we use to update information about the online college course that Nicholas is currently doing. Medical appointments and transportation arrangements can be found in the calendar page, but so can special social events or hockey games. When a new medication is started, an alert goes out to all staff and if side effects are a worry, the prescribing physician is added to the network list until the situation stabilizes. The melding of formal supports (doctors, therapists, social workers, etc.) with informal supports (such as grandmothers, aunts, cousins) is the critical element in what makes Tyze helpful for us.

  Long-term care in the community, if it is to be good care, must have excellent lines of communication between all parties. But somehow, up until now, communication has been stymied on account of misplaced notions of what defines a professional — in a home setting, the medical model of doctor/patient relations actually hinders good care. Anyone who has tried to navigate effective communications with doctors on behalf of an aging parent with diminishing capacities will know this. Loving family members have had their credibility questioned by virtue of being “emotionally involved.” This archaic view that concerns of daily living are somehow separate from professional concerns is dealt a fatal blow by Tyze. With legions of families fulfilling the complex care needs of their relatives in their homes, a two-way, open, honest and mutually respectful dialogue must be enabled between people with long-term care needs, their families and the professionals who seek to support them. Caring for our parents has the potential to be the catalyst for transforming our society into a more caring and profitable society.

  CHAPTER SIX

  I Am Loved,

  Therefore I Am

  Whenever our family moves to a new country, or when Nicholas’ age provokes a change in the government departments that serve his needs, we encounter the same frustrating wrangling. Social services representatives sit across the table from their counterparts from the Ministry of Health. When asked who will pay for Nick’s care in the community, each points to the other and says, “It’s you!” It never fails to shock me that Nicholas is persona non grata, at least as far as governments are concerned.

  Where do dependent and vulnerable people belong in our society and why should anyone care about, much less pay for, their good life? If people with disabilities and their families are a case study in dependency issues and capability for our society, what factors constitute the measures for wellbeing?

  Many parents will identify with me when I talk about Nicholas’ contribution to the quality of my life, especially to my spiritual wellbeing. I am a better person for loving him and caring for him. But certainly I cannot say that because I have cared for my son, and consequently increased capacities for selflessness in myself by virtue of attending to his needs, that either of us would wish to claim that as his contribution to life in general. The idea of identifying care needs as a contribution because it makes the carer a better person is dealt with by the theologian and father of a child with severe disabilities, David A. Pailin: “Those who are looking for a reason to justify caring have not understood that love is a self-justifying and all-sufficient ground for certain types of behaviour. Those who remain puzzled by love (and even cynical about references to it) should therefore consider whether the contributory worth notion of value has blinded them to what is good in itself.”10 Pailin maintains that worth is received, not rooted in what a person can do or give. Pailin aligns the worth of people with severe disabilities with that of our worth in God’s eyes. And, he points out, God doesn’t assign worth on the basis of ability. The recognition and embodiment of unconditional love is enough.11

  The hierarchy of the disability rights movement (paraplegics at the top and mental health and severe learning disabilities at the bottom) reflects society’s comfort with the goodness of purposive and participatory action. A person with no ability to participate in this realm simply embodies need. But if a person has no capacity for purposive action, then it follows that they must be exempt from judgement. It is enough for that person simply to receive love.

  Some activists in the disability movement defend the worth of those with cognitive disabilities by pointing to the “contribution of being.” But that stance is rooted in what positive effects might be experienced by an able- bodied person while spending time with someone who seems unresponsive. “I love spending time with my aunt who has advanced Alzheimer’s disease because we just sit together. I have a busy job and she helps to slow me down” is one story I heard to back up this theory.

  But, what if this aunt had no visitors who enjoyed sitting with her? Does this woman’s worth diminish the longer she lives without her capacity for reason? What if all her relatives were killed in an accident and there was no one left who remembered this elderly woman before the onset of her disease? In the case of the severest forms of disability, it may be too difficult to imagine an individual ever having capacity. How do we rate the worth of such souls? The theological anthropologist Hans Reinders expands on the idea of received love as the scorecard for worthiness. “The gift that profoundly disabled human beings have received is the gift of being, which is derived from the freedom of judgement. No entrance tickets are needed, no exams have to be passed. …The gift of being is not an abstraction; it is the gift of being what you are.”12

  As well, American philosopher Eva Feder Kittay, who commented on Sen’s work earlier in this book, is the mother of Sesha, a young woman with severe cognitive disabilities, and she is leading the charge amongst her colleagues for a consensus of human worth that includes her daughter. Dr. Kittay needs to be strong for a long and tough fight.

  However, in his book The Ethics of Killing: Problems at the Margins of Life, bio-ethicist Jeff McMahan refers to people with severe cognitive disabilities as having the moral value of a chimp.13 In other places, he maintains that they have psychological capacities equivalent to those of a dog. Dr. McMahan is a professor of philosophy and ethics at Pr
inceton University. His colleague at the Princeton University Center for Human Values, Dr. Peter Singer, offers samples of highly intelligent animal life to prove that severely cognitively impaired humans have less moral worth than some pigs. Drs. McMahan and Singer are well-known animal rights activists who want to throw light on the inconsistency of ethics that would sanction the slaughter of animals for food, yet protect and prolong the lives of people with inferior intellectual capacity to some nonhumans.

  Consider this exchange with Eva Kittay, Peter Singer and Jeff McMahan at a 2008 Conference at Stony Brook University:

  Peter Singer (directed at Eva Kittay) : You’ve said a couple of times and you said it again in response to the last question that you think that Jeff [McMahan] doesn’t have the empirical stuff right, and you also said that in response to my comparison between humans and nonhuman animals. You put up Jeff’s comments [in which McMahan puts forward a list of comparisons between “radically cognitively impaired” humans and nonhuman animals and then says] and so on and so forth. …Then you said that “we can’t wave our hands and then say and so on, because there is so much more to what it is to be human.” You’ve said that a couple of times. So I am just wanting to ask you: Well, can you tell us some of these morally significant psychological capacities in which you think that human beings, and let’s talk about real ones, so the ones who are “profoundly mentally retarded,” to use that term, in which they are superior to…you sort of said, maybe chimpanzees and great apes are different…so let’s say in which they are superior to pigs or dogs or animals of that sort. (Eva Kittay responds by shaking her head.) It’s a factual question. You can’t just shake your head. You have to put up or stop saying that.

  Eva Kittay: [Y]ou asked me how is Sesha different from a — what did you say — a pig? And [when I first shook my head] you said, well, it’s a factual question, “put up or shut up.” The first thing I have to do when you ask me that question, is I have to get over…. a feeling of nausea. It’s not that I’m not able to answer it intellectually, it’s that I can’t even get to the point emotionally, where I can answer that question. (Pause) Most of the time. When I say you can’t just wave your hand and say “and so on,” it’s because there is so much to being human. There’s the touch, there’s the feel, there’s the hug, there’s the smile…there are so many ways of interacting. I don’t think you need philosophy for this. You need a very good writer. …This is why I just reject…[the]…idea that you [should] base moral standing on a list of cognitive capacities, or any kind of capacities. Because what it is to be human is not a bundle of capacities. It’s a way that you are, a way you are in the world, a way you are with another. And I could adore my pig; I could dote on my pig. It would be something entirely different. And if you can’t get that; if you can’t understand that, then I’m not sure exactly what it is that you want to hear from that I could tell you. …I’ll keep trying because I think this is very important.

  Jeff McMahan: Let me say something on behalf of Peter’s [Singer’s] point of view here. Peter has not said anything to deny the significance of a mother’s relations to her own child. Nothing as far as I can tell. The question here is a question about what moral demands there are on other people. And the fact that you, Eva, have a relation with your daughter doesn’t necessarily give other people the same set of reasons that you have to respond to your daughter in certain ways and to treat your daughter in certain ways. The question is: what is it about people like your daughter that makes moral demands on other people that nonhuman animals can make on any of us. That is the question that Peter is asking. He’s not denying that you have a special relation to your daughter and that that is very significant for you in your life, significant for her, and so on, and that that’s true of many other people. …You know, Peter and I didn’t come here to hurt anybody’s feelings. We’re here to try to understand things better. I’m trying very hard not to say anything offensive, something hurtful. I’m profoundly averse to making people miserable.

  Eva Kittay: I know you’re not trying to hurt anyone’s feelings. I know Peter isn’t trying to hurt anyone’s feelings. That’s not what it’s about. For me, it’s not what I’m experiencing, it’s what your writings mean for public policy. That’s what concerns me. And that’s not just about my daughter.14

  Peter Singer and Jeff McMahan have teamed up to defend the rights of animals at the expense of some people. Using intelligence as the criteria for moral significance, they attempt to illustrate how chimps or pigs (being more intelligent than some individuals) have more worth. It is this argument that forms the basis of their advocacy to stop animal testing, the eating of meat and a host of other reasons that humans have to kill animals. Most worrying about McMahan’s comments in this remarkable exchange is: “The question is what is it about people like your daughter that makes moral demands on other people that nonhuman animals can make on any of us.” In other words, why should anyone care about or help pay to support the life of someone like Kittay’s daughter, Sesha? As with most deeply disturbing conversations, Kittay has found the words to illuminate her argument only afterwards. “I now see how I must reply,” she wrote recently. She reminds us that Singer and McMahan acknowledged the special relationship that Kittay has with her daughter and that that relationship is more morally significant than any relationship she could have with an animal. In this concession, Singer and McMahan have ascribed personhood to Sesha. The care of children in our society is not simply a private matter — we have laws and policies that ensure there is a public duty to fund their good upbringing. The moral significance of the mother/child relationship is greater than the significance of our relationship to animals. “It takes a village to raise a child” takes on political meaning here. If Kittay is right, and I believe she is, looking after our most vulnerable citizens really IS a public concern. And we should care about this exchange of views, because the ideas of ethicists, even expressed in the faraway and rarefied settings of Ivy League universities, have a way of ending up in our own hearts and minds when we are asked about the rights and wrongs of difficult questions.

  CHAPTER SEVEN

  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 p
eople 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.15