Thursday, March 31, 2016

Catherine Frazee - “The Vulnerable”: Who Are They?

This article was originally published by the virtual hospice on March 31, 2016.

By Catherine Frazee, OC, D.Litt., LLD. (Hon.)
Professor Emerita, School of Disability Studies, Ryerson University

We must protect the vulnerable, the Supreme Court told us in its landmark decision establishing a limited right to physician-hastened death in Canada. In my work with the federal External Panel appointed last year to facilitate a national consultation on physician-hastened death, there was wide agreement. On March 1, an impressively diverse coalition of advocacy, faith and medical organizations issued the Vulnerable Persons Standard, a clear articulation of what protections for vulnerable people should include.

There is very little argument that our new regulatory scheme for hastened death must build in safeguards to protect the vulnerable. But what exactly does this much-repeated phrase mean? Who is vulnerable, and why?

***

To be vulnerable, quite simply, is to be without defence.

For some persons – infants, toddlers, persons with extensive and severe impairments – vulnerability may be intrinsic to their condition of life. Without muscle to flee or resist, without words to request or refuse, without art or philosophy to reinvent or transcend, such persons are nearly fully at the mercy of others.

Yet even in these most seeming absolute expressions, vulnerability presents itself by degrees. The infant born in Oshawa in 2016 shows herself in fact to have robust defenses, compared to the infant born simultaneously in Aleppo, Syria. Likewise today’s toddler with Down syndrome from Kamloops is doubtless far less vulnerable than was her counterpart in Hadamar, at the peak of Nazi rule in 1941.

Vulnerability is as much a matter of context as it is of personal condition. In this way, for each and every one of us throughout life, vulnerability is situational, experienced when our defenses are stripped away.

Paradoxically, we are all vulnerable, yet many of us do not know vulnerability. For the most part, it remains an abstract notion about which we have little visceral sense. Without conscious attention to the mounting of protections, we have matured into adulthood and accrued the means to feed and clothe and shelter and keep safe our fragile and needy bodies. We acquired skills and knowledge, we built strength and savings and social networks, we found homes, jobs, love and meaning. And so we are not without defence – we have locks on our doors, clothes on our backs, food in our refrigerators, numbers on our speed dial.

Supporting these simple phases of our ‘independent’ adult development, are of course massive commitments of public investment and regulation – a veritable arsenal of defense to shield us from our human vulnerability: systems of health, education, job creation and public works. Most of us do not need to attend to our own vulnerability. When we adjust the thermostat, flush the toilet, place our garbage at the curb, the state takes over. When we purchase raw poultry, cross a busy intersection, install a new smoke detector, the state has our back.

If we are vulnerable but don’t know it, that is because the social contract is working in our favour. Only when our defenses fail – Walkerton comes to mind, or the Ice Storm of 1998 – do we experience the full force of our vulnerability and urgently scramble to our backup defenses: hospital emergency rooms for the sick, friends with woodstoves and generators for the cold and hungry. Again we find rescue, buoyed from the turbulent waters of crisis by our firm grip on the social determinants of health.


As the American legal scholar Martha Fineman explained in a 2008 essay for the Yale Journal of Law and Feminism, because “we are positioned differently within a web of economic and institutional relationships, our vulnerabilities range in magnitude and potential according to the quality and quantity of resources we possess or can command.” The power of vulnerability lies in its capacity to deepen the suffering of some, while remaining invisible to others.

If vulnerability is the experience of being without defence, it follows that people experience vulnerability when they are deprived of that which defends them – the resources that permit them to survive and flourish. At first thought, questions of flourishing may seem unrelated to the subject of hastening death when human suffering is enduring and intolerable. On the other hand, when we are better protected from vulnerability, we are less likely to suffer intolerably. That is not to say that our suffering is reduced, but rather that our tolerance for it is boosted.

A 74-year-old man named Stephen Hawking living with the devastating effects of ALS – ventilator-dependent, paralyzed and unable to speak – uses a single remaining muscle in his cheek to communicate, at the rate of one word per minute, his passions for cosmology and theoretical physics. A 22-year-old athlete named Terry Fox completes over 5000 km of a grueling pan-Canadian marathon before succumbing to the cancer he wants to spur researchers to beat. A 62-year-old artist named William Utermohlen is diagnosed with Alzheimer’s disease and paints persistently, producing a series of intimate portraits and self-portraits, until he can no longer hold the implements of his craft. A woman who shall remain anonymous, bears the unbearable grief of her son’s suicide yet returns quickly to her office job for the comforts of collegial normalcy.

Not one of these individuals, or others whose triumphs we may personally know, would hold themselves out as extraordinarily courageous or virtuous. To be sure, there is a thread of fortitude, a clarity of purpose running through each of these scenarios. But from that point forward these stories are propelled less by character than context as each individual, by circumstance and persuasion, manages to rally assets sufficient to endure great suffering.

The rallying of assets – both material and social – renders us resilient to the experience of vulnerability. When conditions are right, when our social determinants of health are intact, when we are valued and welcomed and supported, when we are permitted and empowered to do with our lives what we most desire, human beings have proven ourselves time and time again to be resilient. The power of vulnerability to divide us can only be restrained by building resilience among us.

***

Flourishing can and does occur in the final stages of terminal disease, at the most advanced states of irreversible decline, and among people who are desperately ill. Research has demonstrated, for example, that patients with terminal cancer who receive early palliative support and those who are cared for in their home environments report significantly improved quality of life, are burdened less by pain and other symptoms, experience less depression and have a longer life expectancy. On the other hand, evidence confirms that people with fewer resources at their command, people unable to marshal the assets that build resilience, are prone to experience the full force of their vulnerability when calamity strikes.

Less well understood, however, is the impact of the experience of sudden vulnerability upon persons who have enjoyed social and material privilege and security. Experience in Oregon and other jurisdictions with permissive approaches to physician-hastened death suggests that those who advocate for and actively pursue this option tend to cluster demographically in privileged social groups, prompting some to describe this group as “the three W’s: white, wealthy and well-educated.”

Should this matter, as we attempt to finely calibrate a system that protects the vulnerable from harm? Quite possibly, given what we know about how context shapes vulnerability.

For example, for persons who have enjoyed lifetimes of physical vigor and social privilege, the very prospect of experiencing one’s innate embodied vulnerability may itself constitute intolerable suffering. For many such persons, dependence is inconceivable, and vulnerability unthinkable. Data from Oregon confirms that “worries about loss of dignity and future losses of independence, quality of life, and self-care ability” were far more prevalent in motivating requests to die than were issues of actual pain or symptom control.

A catastrophic illness or injury radically alters the course of a life built upon the assumption of physical independence. The necessity for any form of intimate care is often experienced as a violation of personal dignity. Similarly, impairments which compromise self-management of bodily needs and functions may be experienced as shameful and degrading. The toilet, it turns out, is a tyrannical force in our adult lives.

On the other hand, for persons with lifelong or longstanding physical or cognitive impairments, particular forms of vulnerability find their way into the mechanics of the daily life. They may remain unpleasant, and may challenge our sense of dignity and integrity, but their significance diminishes over the course of lives that permit us to flourish – in meaningful work, connection to community, pursuit of pleasure and relationship. Our embodied vulnerabilities become tolerable, because we have found resiliency where it is needed to preserve self-regard and meaning in life.

Where these two distinct life experiences and worldviews collide is where policy choices must be made regarding safeguards for physician-hastened death. On the one hand, it is argued that providing unfettered access to those who find disablement undignified can simply be paired with safeguards to protect persons who do not share this view from being pressured to pursue a hastened death. This is a straightforward “individual choice” argument.

On the other hand, the assertion that such conditions as incontinence constitute an assault to dignity sufficiently grievous to warrant the pursuit of a hastened death may be more than a simple expression of personal choice. The frequency and intonation with which the words “diaper” and “drool” appear in the online comments sections of major media reports on the subject of assisted dying, should signal to us that certain iconic meanings are being invoked in support of authors’ arguments.

Having to wear diapers and drooling are highly stigmatized departures from what is expected of adult bodies. Those of us who deviate from these norms experience social shame and stigma that erodes resilience and increases vulnerability. The more deeply these stigmatized accounts are embedded in our discourse and social policy, the more deeply virulent social prejudice takes hold within our culture.

To speak disparagingly of diapers in a formal submission to a Parliamentary Committee, as one physician did earlier this month, is no small matter of unconventional etiquette. The social and cultural forces that would embolden one to speak of persons in vulnerable states with such contempt, demands that we reproach not the speaker, but the license we have given for insult and objectification.

To the extent that we embrace dignity and inclusion among our core constitutional values, we must attune our ears to consider how such speech may be heard by those who wear “adult diapers” while striving to flourish as human beings. Not only do such characterizations assault us to the core, but the recoiling they provoke both cheapens our lives and frays the fragile cords that link us to living worlds of community, whether we are at our prime or in our final days. To adults who wear diapers, it is not enough to say merely that “they are perfectly at liberty to choose to die how they wish”. What assurance can we offer that the physician who treats these adults at end-of-life will not stand at their bedside with horror – or revulsion – in his heart?

Of course there can be no such assurance. Already the cultural narrative that links diapers and drooling with worthlessness and degradation holds us firmly in its grip, and with each sanctioned utterance, persons who have some degree of difficulty with swallowing and incontinence and persons who will need to confront such difficulties if they wish to live a little longer, are rendered more and more vulnerable, our claims to dignity and worth more and more precarious.

Moreover, the service of those who care for persons who may drool or wear diapers – many of whom themselves are members of socially vulnerable groups – is stigmatized and devalued as well. When Gillian Bennett took her own life in British Columbia in 2014 to escape the unfolding of her Alzheimer’s diagnosis, she wrote:
“I can live or vegetate for perhaps ten years in hospital at Canada's expense, costing anywhere from $50,000 to $75,000 per year. That is only the beginning of the damage. Nurses, who thought they were embarked on a career that had great meaning, find themselves perpetually changing my diapers and reporting on the physical changes of an empty husk. It is ludicrous, wasteful and unfair.”
At the present time, we do not know how widely such views are held. We only know that they are held by some, and reported to many. We also know, as noted by the UN Commission on Social Determinants of Health, that biases, norms and values within society make people vulnerable to poor health outcomes.

These deep cultural dimensions of vulnerability reach well beyond the realm of ‘individual choice’, into the dark canyons of shame and stigma. Against this backdrop, our efforts to promote flourishing cannot eliminate suffering, but instead may, for some at least, immunize against despair as its natural endpoint.

"Protecting the vulnerable” requires having laws that do not render us defenseless, policies that do not diminish our resiliency and leadership that shapes itself around a vision of promoting flourishing for all Canadians. The Vulnerable Persons Standard is a good place to start.

1 comment:

CATHOLIC HOSPITALS HOLOCAUST said...

What chance did the sisters at St Joseph's Hospital in Bellingham Washington give my wife, Gloria Jean Brown, they drugged her and forced her to sign her own death warrant and had responders murder her. The Protestant Voice is deliberately being silenced on the issue we take as granted naturally by our God given right to choose life over death which our Declaration of Independence mentioned to form the basis of our Constitution, history should warn us, euthanasia is genocide designed to make north americans appear to have lost control of their own destinies for their alleged disobedience to rome, now suddenly the United States is bankrupt and our corporate catholic courts don't have land jurisdiction to punish Gloria's murderers, convenient for the sisters, while they are discrediting american women as abortionists, there is not enough money hidden away in the Vatican that could ever repay what rome has done to God for killing one of his special children. Francis knows cold blooded murder will permanently tarnish their false persona, protestants the world over are appalled at the roman hypocracy, you're truly a false religion with double speak and double effect, your false universities spew out sickness and false law, the beast our ancestors fled from to form a new republic escaping from centuries of roman and british tyrannical rule, both need to go back where you came from before there's another Nuremburg. The World has to always address tyrants, regardless of their gowns or gimmicks, but we and our families are free now to live and worship if we want in our own way, not forgetting to help others and show that God-fearing men and women can peacefully rebuild a new republic by following our founders dreams of natural and common law guaranteeing unlimited possibilities for all of mankind. bobby brown maclaren Talk Platelets