Care of vulnerable people

Your committee has a most important task, for it is said that we will be judged as a society by how we treat our most vulnerable members. It is wise to listen to, and learn from them, even as we serve them.

For the past 46 years I have lived with people intellectual disabilities. I have listened to them and learned from them. These beautiful men and women have much to teach us about vulnerability, about caring, and about the ways of the heart. As individuals and as a population, they have a lived history of suffering, of being rejected and hidden away; away from the mainstream, away from power, away from belonging. Their obvious physical impairments, their openness of heart and their cry of need for relationship have gently invited me to reflect on my own impairments, fear of openness and need for relationship. They have been my teachers in the school of the wise and tender heart.

What I have learned from them, in their humility and their humiliations, is that we are all vulnerable people. Each one of us is important, especially the weakest among us. In our vulnerability we are easily hurt¸ and we have elaborate systems of self protection which keep us from being open with each other. We need each other, and yet we are deeply afraid of this need. Our fear estranges us from our own weakness, and keeps us from exercising the fullness of our humanity in caring for each other, individually and as a society.

I have just celebrated my 82nd birthday. As well as a sense of deep gratitude for my life, there are losses. Over the past two years I have significantly curtailed my long distance travel. I grow tired more easily, and need to nap with regularity. However I experience great joy as those whom I have welcomed over the years, now care for me. They have spared me for the last decade from doing the dishes! More recently theyobserve my physical fatigue, patting me on the head with great tenderness saying: "Poor old man". My vulnerability is cherished by them, as theirs has been by me, and this helps me to welcome mine in its newest incarnation, old age with its joys but also with its various indignities.

Each of us is fragile, with deep needs for both love and a sense of belonging. We begin and end our lives vulnerable and dependent, requiring others to care for us. Throughout our lives there are other moments of fragility and dependence. In our states of dependence, our need cries out for attention and care. If this need is well received, it calls forth the powers of love in others, and creates unity around us, the gifts of the vulnerable to our world. If our cry and our need are unmet, we remain alone and in anguish.

The vulnerable people whom your committee is called to reflect about caring for, are often in a precarious state, mentally or physically or both. They are often in anguish. The old, those living with illness and perhaps near death, those in depression and with a sense of despair, those living with disabilities; these are all people living in a most fragile state. The danger in our culture of productivity and achievement is that we easily dismiss and ignore as unproductive the gifts and the beauty of our most vulnerable members, and we do so at our own peril, dehumanizing ourselves.

In 1973 in our little community we welcomed Janine, then age 40. Janine was physically very fragile; she had epilepsy, she was hemiplegic, she was fat, and she had diabetes. Janine was furious! She came to us having suffered forty years of humiliation; she had never been to school, she had been hidden away from others 24/7, and had lived a constant betrayal of her personhood. She would scream and scream, her screaming saying to us: "Won't anyone ever see me as person? A person with needs and desires, hopes and dreams?" What Janine needed from us was of course that her physical needs be competently attended to. Beyond that however what she most desperately needed from us was for people to get to know her, to respect her, and to reveal to her, beyond her obvious disability, her beauty as a human being. This revelation occurred gradually, not through therapy, but through sustained and loving friendships, wherein Janine could find her place, and be lifted out of her prison of loneliness and despair. Gradually Janine blossomed. Equally important, we were transformed by her need for us. In her cry we recognized our own anguish, and our own need for recognition and love. We also recognized, faced with our individual limitations and her overwhelming needs, the necessity of our being united in caring for her.

If this need is well received, it calls forth the powers of love in others, and creates unity around us, the gifts of the vulnerable to our world. If our cry and our need are unmet, we remain alone and in anguish.

Of course we must also be competent professionals, clear about our skills and limits and willing to consult widely about those we serve. However, there is grave danger here that our competence becomes the goal, serving excellence rather than people. When faced with the vulnerability or anguish of another, the forces of anguish within us can be awakened. Without proper support, we quickly protect our own vulnerable humanity. We have many wonderful and creative ways to do this, as many ways as there are people. We may use the compulsion to work to meet the unending need for service, putting the accomplishment of the work above the person cared for. We of course need to be clear about our boundaries. However, citing the need for maintaining professional boundaries, we can eternally hide ourselves behind professional distance, losing the necessary mutuality that is both the soil and fruit of humane service.

A doctor told me of visiting a colleague in a hospital. The patient was herself a doctor and most importantly a young mother. She had been acutely ill, was in the intensive care unit for 14 days, and had almost died. She was then transferred to the general ward, where she was terrified that she would die, leaving her young children motherless. For 2 weeks someone had been at her side every minute, but now a nurse came by intermittently, taking her blood pressure and pulse only every few hours instead of continuously. The patient had young children and became terrified that she would die, leaving them without a mother. When her friend and colleague visited her, she sat on the bed, took the patient's hand in hers and gently asked "How are you?" "This is the first time someone has touched me in a nonmedical and humane way since I arrived in the hospital 3 weeks ago". Some of the ways we must interact with vulnerable people, listening for their fears, touching them with tenderness, are not very complicated, though obviously others are much more so.

What then is it we need to provide for those whom we ask to care for vulnerable populations? What training and support do they require? Firstly, we need to cultivate a culture of care where the importance of each person, care givers and recipients, is the primary value. Their histories, medical and personal, are important here, as the relationship begins. We need to know a little bit about the people we are treating; who they are, what are their likes and dislikes, their hopes and dreams. The wellbeing of each individual should be upheld, over efficiency, scheduling, meetings or even standards of excellence, and to do so requires a shift in focus from the job-to-be-done to the-wellbeing-of-the-person-served. The needs of the most fragile individual should be given priority, and this in itself will foster unity and transformation.

I am reminded of the young woman who took a job as a personal care worker in an old people's home. There one of her clients was an elderly woman who was alone in the world, dishevelled, without visitors or friends. She appeared unremarkable and was easy to forget. Her food was often served and eaten cold, as nobody thought to offer it to her while still warm. In many ways the old woman seemed invisible. Then one day the younger care worker noticed her and struck up a conversation. The following day the same interaction, and gradually the young worker found herself in a friendship with the elderly woman. Most importantly, the younger woman found herself transformed by this friendship with the old woman. Not only did the old lady look forward to the visits of the younger woman, but the latter began to find new meaning in her job and new happiness in her perception of herself. The relationship with the older woman revealed to the younger a part of herself she had not previously welcomed.

We need to encourage caregivers to enter into appropriate but real relationships with those they serve, relationships which both validate the client and transform the caregiver.

We need to encourage caregivers to enter into appropriate but real relationships with those they serve, relationships which both validate the client and transform the caregiver. We must help carers to recognize and welcome their own weakness. We need to create places of safety where caregivers can share with each other the anguish which rises up within from time to time, evoked by a client's anguish. They need also to be able to share together their feelings of helplessness, inability, anger, frustration, violence and grief. These feelings are within each of us, and sharing them constructively as a group will encourage growth towards unity and maturity in the individual and within the group, and will help to prevent burnout.

Once I was invited to talk to military officers in training, and not sure how exactly I could advise them, I showed them a short movie about l'Arche, the community where I live. The movie talked about welcoming our own weaknesses, and the beauty of human frailty. Afterwards I ate lunch with the generals who had invited me to speak, and I felt a little embarrassed by the content of my talk. "Do not apologize", said the senior General. "Why do soldiers torture their prisoners? It happens when they have not understood their own limits or welcomed their own weakness."

Let us look for ways, in the care of our vulnerable populations, that we can welcome, honour and celebrate weakness, theirs and our own. Let us give our most vulnerable members a central place in our hospitals, care plans, old peoples' homes, nursing homes, psychiatric facilities, and in our own homes.

Let us acknowledge that this task is profoundly counter cultural in a society based on competition and the need to win, so let us be prepared for the struggle this implies, individually and as a society. Let our professionalism also model openness to and welcome of vulnerability, in ourselves and others. In this way we will humanize our services and ourselves, and our communities will be enriched.

Thank you.