The concept of “vulnerability” is ubiquitous in discussions of euthanasia, assisted suicide, and other ending-of-life practices that have a disproportionate and discriminatory impact on old, ill and disabled people, as well as BIPoC and other disadvantaged groups. This article draws on the work of Dr. Catherine Frazee, Professor Emerita at Ryerson University who has moved the understanding of vulnerability from a “personal attribute” to a more equitable view, equivalent to the social model of disability. The article then proposes an additional step, toward understanding the political aspects of vulnerability, comparable to the Disability Justice model, proposed by the Sins Invalid group of Black, Indigenous and queer disabled activists in 2016. My hope is this will facilitate a clearer understanding of the disability rights-based opposition to euthanasia, assisted suicide, and similarly-coercive ending-of-life policies and practices. This article builds on a presentation given at a conference sponsored by the Euthanasia Prevention Coalition on January 23, 2021. A footnoted version of this article is available upon request
In its 2015 decision in Carter v. Attorney General, the Supreme Court of Canada said society should “protect vulnerable persons from being induced to commit suicide at a time of weakness.” Yet, the decision did not define who are vulnerable people, what makes a person vulnerable, nor what it means for a person to be vulnerable. The words “vulnerable” and “vulnerability” occur 33 times in the Carter decision. Most often it appears in the phrase “the vulnerable” or “the socially vulnerable” where it creates a mass noun that objectifies and dehumanizes the people it describes; this occurs 13 times. This is comparable to the common usage of phrases like “the blind” and “the deaf” which disability activists have criticized for decades. It’s noteworthy that the word “vulnerable” occurs twice in the preamble of the medical assistance in dying law (Bill C-14) but nowhere in the body of the statute.
The definition of “vulnerability” is comparable to that of “disability” in that both are evolving from individual-focused concepts to ideas that reflect a political consciousness through a three-step process. The medical model of disability and the traditional view of vulnerability describe a personal attribute. Both concepts then moved to a more equitable interpretation, which begins to take into account the social and economic influences on vulnerability and disability. In the third step, both are moving toward a politicized view of the external forces that create disability and vulnerability, the importance of naming and struggling against these forces and the function disability and vulnerability serve for the dominant culture.
The medical model views disability as a deficiency of the individual, that must be cured or treated, in order for the person to have a successful and satisfying life. The traditional or personal attribute view of vulnerability is best captured by its dictionary definition, “(of a person) in need of special care, support, or protection because of age, disability, or risk of abuse or neglect.” Like the medical model of disability, the personal attribute view of vulnerability assigns responsibility to the individual without the means to control their circumstance. The person needs support and care, and cannot control their environment or ensure their own survival. Infants are the most obvious example of people whose personal attributes render them vulnerable.
Vulnerability as a personal attribute often places the individual within a group (such as elders, disabled, poor, refugees, LGBTQI, BIPoC, etc.), which is seen as different from – and assigned a lower social value than – the dominant group. Though membership in the group is not usually within the person’s control, people often try to avoid negative effects of discrimination by denying affiliation with the targeted population, such as by overcoming, closeting or passing as a member of the dominant group. “Vulnerability” has a negative connotation, and is associated with words like “weak” and “fragile.” Similarly, the expectation in a western, capitalist society is that maturity equates to independence.
A more equitable view, that takes into account the influence of social and economic factors, can be found in the social model of disability, and the writings of Catherine Frazee on vulnerability. The social model is reflected in the definition of disability included in the U.N. Convention on the Rights of Persons with Disabilities which views disability as the interaction between a person’s physical, sensory, cognitive or psychiatric limitations and barriers in the environment. An equitable view of vulnerability acknowledges that vulnerability is universal, everyone is vulnerable at different times, that humans mobilize material and psychological resources to promote resilience, and that these resources are linked to a person’s social and economic privilege.
The universality principle reminds us that all humans need care and support to survive and thrive, and everyone faces illness, hardship and setbacks in their lives, thus our level of vulnerability waxes and wanes over time. Another aspect of the universality of vulnerability is that everyone’s survival relies on the social contract, including infrastructure, supply chains, public services and utilities. Resilience in the face of vulnerability requires both material resources and social relationships. We rely on family, community, and social supports to maintain self-esteem, mental health, and protect against physical and psychological harm; inasmuch as it fosters social connection, “vulnerability” can be a good thing. Our ability to survive and be resilient in the face of difficulty is linked to the resources we can control or mobilize. Thus, as Catherine Frazee notes; “the infant born in Oshawa … [has] robust defenses, compared to the infant born simultaneously in Aleppo, Syria. … Vulnerability is as much a matter of context as it is of personal condition.”
It’s worth noting that while the euthanasia law (Bill C-14) is supposed to exclude people who are subject to “external pressure” the statute doesn’t define the term. In the Truchon decision, Judge Christine Beaudoin followed the lead of the plaintiffs’ attorneys who implied that “external pressure” was limited to individual coercion or undue influence, whereas disability activists advocate a broader definition that takes into account socio-economic factors based in discrimination, such as lack of palliative and mental health care, forced institutionalization, and unmet needs for social supports.
In the past decade, disability rights activists who also experience racism, homophobia, transphobia, sexism and other forms of oppression have added a new model to our understanding of the role of disability in society, that of disability justice. This model embraces intersectional identities as well as environmental and economic justice. Members of the Sins Invalid collective developed the Disability Justice model which holds that “Social and political systems have created an ideal body/mind built upon the exclusion and elimination of a subjugated “other” from whom profits and status are extracted. Whereas all bodies are unique and essential, all bodies have strengths and needs that must be met. We are powerful not despite the complexities of our bodies, but because of them.” The disability justice model assumes that disability is a natural and normal part of the human experience (an idea articulated in the Platform Statement for the first Disability Pride event in Boston in 1990). It recognizes that the ideal of the “normal” human is a false construct developed as a means of social control, and that bodies that fall outside that norm have been controlled and exploited for the benefit of those in power.
A parallel way of looking at vulnerability focuses on how people are made vulnerable, based on their membership in an oppressed group, due to a personal attribute that may or may not contribute to their physical vulnerability. For example, refugees, people of colour, and indigenous people are made vulnerable by the discrimination they face, though their personal attribute (race, ethnicity or country of origin) does not necessarily contribute to their physical vulnerability. On the other hand, women, people with disabilities, children and elders are both singled out for discrimination, and their physical attributes (smaller size, difficulties getting around, less information due to sensory or cognitive limitations) contribute to their vulnerability as well. And while these physical limits can be mitigated by removing barriers, the fact that they often are not speaks volumes about the discriminatory origins of vulnerability.
People who are made vulnerable through discrimination generally have fewer options for mobilizing resources and developing the resiliency that will mitigate physical vulnerability. Discrimination and marginalization can also cause or aggravate physical vulnerability, through poverty, malnutrition, homelessness, violence, substance abuse, environmental damage and stress-related illness. Examples of created vulnerability include environmental racism and health disparities, hate crimes and domestic violence, institutional bias, the school-to-prison pipeline, and the liberalization of laws governing euthanasia and assisted suicide.
The idea that people are made vulnerable by the effects of discrimination has been advanced by racial justice activists such as Rashad Robinson, (Color of Change), who rejects the notion of vulnerability as a personal trait and calls systemic racism a form of attack. He advocates an organized response to the creation of vulnerability that calls out its systemic nature, names these attacks as aggression against the affected population, and encourages communities to collaborate to mitigate the effects and work against the players that profit from these practices. At a webinar on July 26, 2020, on the occasion of the 30th anniversary of the signing of the Americans with Disabilities Act, Mr. Robinson applied this same analysis to the “vulnerability” of disabled people.
The (r)evolutionary advances represented by the disability justice model and a political understanding of vulnerability, as well as Mr. Robinson’s recognition of the link between disability discrimination and racial injustice are important for several reasons. Shifting the view away from an individual problem and acknowledging its systemic nature places the responsibility for eliminating that oppression back on the society that causes it. It can also contribute to the understanding by other social justice movements of their own experience. For example, comprehension of the carceral system has deepened through examination of the practice of institutionalization of disabled and other non-conforming persons over the centuries. Doing so also raises disability rights to equal status with other social justice movements, removing the barriers of paternalism and “charity” that often prevent effective collaboration.
Vulnerability, autonomy and end of life care
As Catherine Frazee and many palliative care specialists have pointed out, “flourishing can and does occur in the final stages of terminal illness.” This flourishing requires that the person receive services and supports, such as palliative care, a guaranteed liveable income, self-directed home-based personal assistance, mental health and suicide prevention interventions, and spiritual- and peer counselling. Providing these supports produces better outcomes, such as improved quality of life, reduced pain and symptoms, less depression and longer life expectancy. Making such services available requires not only a financial commitment, but more importantly a fundamental philosophical shift away from the belief that drives the euthanasia movement; that disability equals suffering and it’s better to be dead than disabled.
While autonomy is based on free choice, there can be no free choice to die because created vulnerability means that the targets of assisted suicide and euthanasia don’t have a free choice in where and how they live. The targets of AS & E are people whose bodies and minds don’t fit the ideal, and who are exploited to profit those in power. That includes old, ill and disabled people who are objects of care (whether institutional or by for-profit home-care providers), among whom indigenous and people of colour are over-represented because of created vulnerability.
“Less well understood,” says Frazee “is the impact of the experience of sudden vulnerability upon persons who have enjoyed social and material privilege and security.” Or, as Diane Coleman, founder and president of Not Dead Yet has called them, the “worried, white, wealthy and well.” Catherine Frazee adds that, for these people vulnerability itself seems to constitute intolerable suffering, and dependence is inconceivable. This is borne out by statistics from all jurisdictions where death-hastening practices are legal; concerns about loss of independence and dignity top the list of reasons for AS & E requests, ranking higher than actual pain or symptom control. “The toilet, it turns out, is a tyrannical force in our adult lives,” says Frazee.
She adds that upon becoming disabled, people are exposed to discrimination in the form of external threats to self-esteem, where drooling and incontinence are stigmatized departures from what is expected of adult bodies, and she notes the frequency and tone of language about these conditions in news accounts and online comments on social media. She also cites the example of a physician who submitted testimony on the medical assistance in dying bill who referred to adult diapers in disparaging terms. Constant exposure to such negative messaging wears down resistance, reduces resilience, and creates susceptibility to inducements to assisted suicide and euthanasia. These inducements may be positive (the person will be honored for their courage or sacrifice) or negative (the person can avoid the loss of dignity and becoming a burden).
Becoming disabled also exposes people to internal threats to their self-esteem, in a process comparable to opening Pandora’s box. Throughout our lives, we are exposed to negative stereotypes of disability, be it pitiful Tiny Tim, the Villain whose evil is displayed as a scar or deformity, or the bitter, angry cripple who hates everyone, and himself most of all. When a person becomes disabled, this collection of negative images is moved from the unconscious to the conscious mind, and applied to their new status as a disabled person. This leads to a range of possible reactions. Some people “drink the Kool-aid,” accepting the poisoned stereotype of disability as a self-definition and decide their life is effectively over because they can no longer do X, Y or Z activity. Some people reject the disabled self, deny any association with disability, thus limiting their options as they are unwilling to use adaptive equipment or techniques (hearing aids, glasses, walkers, wheelchairs, etc.). A third reaction involves questioning the received stereotypes; the person decides the negative images are wrong, and adapts to their changed circumstance without any emotional baggage. This requires not only a healthy self-esteem, but also positive reinforcement, and may be difficult to achieve in the face of illness, loss of income and employment, changing social relationships and disability discrimination.
As an aside, it would be interesting to study whether there is a correlation between fear of loss of control connected to the onset of disability and childhood trauma.
The liberalization of assisted suicide and euthanasia laws has already changed the definition of who is “vulnerable” and altered the landscape in dangerous and unexpected ways. For example, in 2016, emergency room doctors in Québec had to be reminded by the College of Physicians that the standard of care for suicide attempts includes resuscitation, after medical staff did not attempt reanimation, apparently interpreting several such attempts as requests to die under the province’s euthanasia law. Increasingly, media reports are portraying safeguards to prevent abuse of euthanasia as unfair and unnecessary obstacles to obtaining euthanasia in an expeditious fashion. In a January, 2018 decision, an Ontario court stated that, without the College of Physicians and Surgeons of Ontario’s mandatory referral policy, there would be “a real risk of a deprivation of equitable access to health care, particularly on the part of the more vulnerable members of our society.” The created vulnerability in institutional settings has been exacerbated during the COVID-19 pandemic, leading to high infection and death rates. Frontline workers – largely underpaid and disempowered women and people of colour – are often forced to work without adequate personal protective equipment or transition between sick and non-infected residents without proper infection control procedures, thus spreading the virus among staff and residents.
While promoters of euthanasia and assisted suicide claim that they are providing an alternative to agonizing physical pain for dying people, the reality is that many people who request euthanasia are not near the end of life, and are not in intractable pain. Instead they are motivated by the fear of the loss of control and status caused not by disability itself, but by institutional barriers and ableism. Disability policy in industrialized societies is designed to restrict and devalue disabled lives. The solution is not for the state to step in to end disabled lives, but to change the discriminatory attitudes and policies that lead to euthanasia requests. This may be a more difficult and complex remedy, but a far more honest, just, and equitable one.