Thank you.
I'm sorry to have missed many of the other presentations. They were very interesting, and I'm very grateful to be part of the conversation.
My name is Dr. Margaret Cottle. I am a palliative care physician and a clinical assistant professor at the UBC Faculty of Medicine. For almost 30 years I have devoted my practice solely to the care of patients with serious illnesses and to their loved ones, especially in home care settings. I have many years of first-hand experience with patients and families who are enduring exclusion and a diminished quality of life mainly due to the lack of will in our society to provide the necessary resources. I find this distressing, since we seem to find the funds for multi-million dollar contracts for sport and entertainment celebrities.
Canada is a signatory to the United Nations' Universal Declaration of Human Rights. The preamble begins:
Whereas recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world,
Article 25.1 states:
Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
At present, we in Canada fall far short of this very basic standard.
Loneliness, isolation, and vulnerability have been front and centre in my practice. A patient I will refer to as Joe is found in his home dehydrated, delirious, and combative. The open wound caused by his facial cancer is crawling with maggots. In the middle of a large, affluent city, he has no one to care for him. Even when family members are able to help, they are often stretched past the breaking point both physically and emotionally, and they face financial hardships and repercussions in their workplaces. We are scandalously tight-fisted, and do not provide enough sustainable support to the families who do this crucial work more cost-effectively and with deeper love than anyone hired to do so.
Frail senior citizens have many concerns in common with people in the disability community. Dr. Carol J. Gill of the Department of Disability and Human Development at the University of Illinois at Chicago, herself a polio survivor with significant motor and respiratory disabilities, has interesting insights into vulnerability. I commend to you for your review her two excellent articles. Although written for different contexts, they are extremely pertinent to our discussion. She points out that vulnerability is socially constructed rather then inherent in our physical or cognitive conditions. Her example is as follows:
All my life I've been told that I can't get into my neighbourhood restaurant because my legs won't take me up stairs. Now I know it's because the restaurant owner won't build a ramp.
She also notes that needing help is a “socially created indignity”.
She continues:
It is the way people with disabilities are treated and regarded socially that leads anyone to feel ashamed if they need help to use a toilet. It is the stigma of disability that strikes fear into the heart of individuals who can no longer live independently or appear “normal”. It is the economics and social arrangements of disability that transform ill people into family burdens or nursing home inmates.
She writes:
The public generally equates disability with suffering. Because I have physical limitations, need help from others, and use devices such as a wheelchair and ventilator, many observers perceive me as a sufferer. I do not draw the same conclusion. Ironically, their prejudgments cause me more suffering than my impairments do. Having suffering incorrectly attributed to us when we are simply living our lives differently is a quintessential disability experience.
Again, she writes:
We are, in fact, much more frightened by the doctors who are out to help us but who see our lives as burdensome and who know little about options that make life with disability valuable. We know that the misplaced pity and pessimism of such doctors is reinforced by the medical institutions surrounding them, the policies that guide them, the health care funding system that rewards them for holding costs down, and the prevailing culture that influences their thinking about disability.
She also says the following:
It is difficult for most people to believe that life with an extensive disability can be anything but suffering, and that suffering can be anything but dehumanizing. Perhaps, along with tolerance for imperfection, the public spirit has lost some of that down-to-earth courage in the face of human difficulties that carried previous generations through very hard times. I have also noticed how narrow the public imagination has become about what makes life valuable—so unimaginatively narrow that it cannot seem to encompass those two realities—disability and full humanity—simultaneously.
Here's one final quote from Dr. Gill:
Anyone at any age can benefit from measures to enhance her/his self-determination, including dignified professional assistance at home, respectful responses to one’s everyday preferences, companionship or privacy as desired, and reassurance that the changes of aging and illness do not reduce one’s humanity and worth.
My conclusion is this. Every person deserves to be respected and cared for not “as if” she or he were a member of the human family, but precisely because he or she “is already” a full member of the human family. I hope that we will dream big dreams, that we can envision a Canada where love and community support are extended to every member of the human family; where all our citizens enjoy freedom, justice, and peace; that every life will be acknowledged as one worth living; and that we count it a privilege, not a burden, to care for each other, even when it is difficult. Government programs cannot change hearts, but they can foster compassionate communities and facilitate systems of care that will support those who bring love into the lives of every citizen. I sincerely hope that you will find creative solutions that can be implemented without delay. The need is profound and urgent.
Thank you.