An extraordinary public exchange of letters between two Canadians over the past six months has illuminated in a very personal way the profound issues posed by death and all that leads to it. Ian Brown, who writes for the Globe and Mail, has a disabled son, Walker. Jean Vanier is the founder of L’Arche, a world-wide organization that provides a refuge and life-long home for intellectually disabled people. In their latest exchange of letters Brown asked Vanier, “Are you fearful of death?” Vanier replied, “No, I cannot say I am”.
This letter brought to mind many issues that I struggled with in a speech I gave recently in Ottawa called, “Dying as the Last Great Act of Living”. In it I explored the impact that legalizing euthanasia might have on the possibility of our experiencing death as such an act.
Some of the issues I examined were our fear of mystery and uncertainty, the nature of the “human spirit”, what an ethics of respect for human potentiality and its fulfillment would require in our treatment of old or dying people, and the role of hope in our lives and death.
Fear of mystery and uncertainty
Traditionally, as Jean Vanier’s writings show is still true for him, we have dealt with mystery of death, through religion or spirituality. But, now, many of us are not religious.
Mystery always involves uncertainty, which makes us feel we don’t have control and, in the case of death, that causes intense fear and free floating anxiety. One way to deal with that fear is to try to take control by converting the mystery of death to the problem of death and seeking a technological solution. Euthanasia can be seen as such a response: death is viewed as a problem, not a mystery, and the proposed solution to that problem is a lethal injection.
Euthanasia allows people to feel that although they can’t avoid death, they can control its manner, time and place. It’s a terror reduction or terror control mechanism that operates at both the individual and societal level.
So if we believe legalizing euthanasia would be a very bad idea, we need to develop and communicate other ways to deal with our fear of death.
The human spirit
One such way is to enrich our experience of the “human spirit”. In both his actions and words Jean Vanier movingly and beautifully manifests and describes his experience of the “human spirit”. It’s a term I use in a religiously neutral sense, in that it can be accepted by people who are not religious and those who are, and, if religious, no matter what their religion.
By it I mean the intangible, immeasurable, numinous reality that all of us need access to in order to find meaning in life and to make life worth living; that deeply intuitive sense of relatedness or connectedness to all life, especially other people, to the world, and to the universe in which we live; the metaphysical – but not necessarily supernatural – reality which we need to experience to live fully human lives.
Vanier speaks repeatedly of the deep suffering caused by loneliness, which can be especially acute for old or terminally ill people – the latter often encounter “intense pre-mortem loneliness”. Loneliness is the opposite experience to that of the human spirit – it’s the feeling of disconnection from others and our world, a sense of profound isolation.
The human spirit is the means through which we can generate the feeling of belonging to something larger than ourselves, that is, transcendence – an experience values’ surveys show people are increasingly longing to encounter – and perhaps transformation. Vanier is a powerful example of living a life based on values that are the opposite of intense individualism and narcissism – both dominant features of our societies and entities that make the human spirit harder to find and experience.
A narcissist sees other people only in terms of how they can benefit him – that is, as instruments or objects. That approach leads to positions such as that taken by an Australian politician arguing for legalizing euthanasia. He justifies it in this way: “When you are past your 'best before' or 'use by' date, you should be checked out as quickly, cheaply and efficiently as possible”.
One could not imagine Vanier speaking of people as products to be checked out of the supermarket of life.
An ethics of human potentiality
The profound wisdom, humanity and humanness of Jean Vanier’s approach to disability show us the opportunities that disability provides to “become more human”, to experience the essence of our humanness and to share it with others. We need to learn from him how to approach old age and the disability that can entail, and death.
As is true for romanticizing disability, there is a grave danger in romanticizing death, which is not the same as respecting its mystery – the latter requires looking tough realities in the face and struggling to live with them and finding meaning in doing so. Vanier does not romanticize disability, but shows us how one can find hope, joy and love despite – or perhaps in part – because of it.
Vanier’s approach to disabled people epitomizes respect for the mystery of life. In contrast, some people are using reprogenetic technoscience to convert the mystery of the passing on of life to our children to a controlled technological process, including by identifying and eliminating those who would be disabled. This approach causes not only a loss of respect for the mystery of life, but also, for the mystery of death.
In his life and work at L’Arche, Vanier shows the extraordinary flourishing of the human spirit that can occur when a certain kind of love – a truly unselfish, non-self-centred love – is made central to ordinary daily life. His radical, counter-contemporary-culture message is that we “non-disabled” people are the losers in refusing to accept disabled people and rejecting the unique gifts they have to offer us as individuals and societies.
Vanier’s writings gently show that among the many gifts disabled people can offer us are lessons in hope, optimism, kindness, empathy, compassion, generosity and hospitality, a sense of humour (balance), trust and courage. But, as he recognizes, to do that they must be treated justly; given every person’s right to the freedom to be themselves; and respected as members of our community. That requires us to accept the suffering, weakness and fragility we see in them, which means, as Vanier emphasizes, we must first accept those realities in relation to ourselves. Most of us find that an enormous challenge and flee.
The ethical tone of a society is not set by how it treats its strongest, most powerful members, but by how it treats those who are weakest, most vulnerable and in need. Jean Vanier’s life and work is testament to an amazing example in the latter respect.
His remarkable, uncommon “common humanity” shines through his words and deeds. We can learn from him how to enrich ourselves, others and our world through developing, experiencing and celebrating, to quote him, the “gifts of the heart” and putting into practice a “little sign of love in the world”.
So we must ask ourselves what are the “gifts of the heart” and what does putting into practice a “little sign of love in the world” require of us in how we treat people who are old and disabled or dying.
Hope is the oxygen of the human spirit; without it our spirit dies, with it we can overcome even seemingly insurmountable obstacles. Hope is generated by a sense of connection to the future. Ian Brown quotes “a still-lively 80-year-old [who] gave [him]… his formula for enthusiastically living in the world as you get older: 'Active engagement with the future,' he said. 'That's the secret.'” This old man is describing hope.
Even terminally ill people can have hope – what we can call “mini-hopes” – for instance, to stay alive long enough to see a grandchild born, to attend a daughter’s wedding, to see an old friend the next day or to see the sun rise and hear the birds’ dawn chorus.
Like hope, leaving a legacy also connects us to the future, one we will not see. Palliative care professionals try to help people to identify their legacy, their gifts to those who remain, because they know that can help them to die more peacefully. But those gifts must be accepted and valued by the receiver.
We must accept old or dying people’s gifts, especially those gifts that are of the essence of themselves, recognizing that they and the person who gives them are unique and precious, as are their lives or last days on earth.
In confirming the worth of these gifts we confirm the worth of the giver, and the old or dying person needs that confirmation. But often we refuse and for same reason that we reject disabled persons’ gifts. We are frightened: This person is not me and could not be me – that is, dis-identification is the way we deal with our fear.
It seems that all of us have a deep fear of dying alone. Might that be, in part, because, then, there is no one to receive our gifts and affirm the worth of our contribution to life?
And might we be able to deal with old age and death with greater equanimity, if we can experience a sense of gratitude for life and might the gifts we can leave help us to feel that? Another way to experience such gratitude is captured by one of my close friends, who talks about “saving up beautiful memories for when you are dying”. I think that’s a “gratitude in practice” response.
The challenge is to maintain death as the last great act of human life, a final human act through which we can still find meaning and, I suggest most importantly, pass meaning on to others.
In other words, in our dying, we need to be given the opportunity to leave a legacy of meaning. We are meaning seeking beings – that seeking is of the essence of our humanness. Euthanasia is a predictable response to a loss of meaning in relation to death and its practice would augment that loss. Even if we believe that doesn’t matter, we should be concerned, because our capacity to find meaning in life may well depend on our being able to find meaning in death.
Margaret Somerville is director of the Centre for Medicine, Ethics and Law at McGill University, and author of The Ethical Imagination: Journeys of the Human Spirit.