Bioethics, Disability and Death

Bioethics, Disability and Death:

Uncovering Cultural Bias in the Euthanasia Debate

Jennifer Fitzgerald

Paulo Freire describes a “culture of silence” amongst the oppressed and dispossessed which perpetuates their oppression (Freire, 1993). Their oppression, he argues, saps them of both the vitality and the critical awareness to respond to their situation. They remain “submerged” within that oppression, lacking in the resources, the vigour and the vocabulary to expose it (Freire, 1993; 12).

While this “culture of silence” amongst the oppressed means that the oppressed cannot speak about their oppression, there is a different “culture of silence” which exists amongst the oppressors which ensures that they will not speak about the vulnerability and marginalization of significant groups of people within the community. Our laws, our policies, and our ethical judgments are thus formulated within that culture of silence; within a framework which often fails to adequately acknowledge and understand the inequalities which stratify our society. Within this culture of silence, important voices are not heard.

The field of bioethics is no exception to this. Feminist analysis has begun to reveal some of the cultural biases of both science and the ethical discourse of science, bioethics (Spanier, 1995; Wolf, 1996a). Susan Wolf, in a compelling critique of the euthanasia debate, argues that we approach that question, and other bioethical questions, from the viewpoint of the ‘generic patient’ - “a patient with no gender, race, or insurance status” (Wolf, 1996b: 282).

Accordingly, Wolf argues that when considering the question of euthanasia, we need to consider the social context of the practice for “it would be implausible to maintain that medicine is somehow exempt from broader social dynamics. The question, then, is whether we want to bless deaths driven by those dynamics” (Wolf, 1996b: 294).

Uncovering the Identity of the ‘Generic Patient’

Rather than the generic patient which Wolf refers to being simply a patient without identity, it is arguable that that patient, in fact, has a presumed identity. Feminist philosopher, Susan Wendell, argues that we have constructed a ‘paradigm of humanity’ based upon one particular identity - the healthy, able-bodied, ‘ideally shaped’, young but adult, white, male (Wendell, 1996: 39). To this list, we might also add: autonomous - for most bioethical debate is based upon the concept of the individual in isolation, rather than the individual in community. It is this paradigm which ethical discourse frequently enlists.

As the debate over the legalization of voluntary euthanasia in the Northern Territory in Australia unfolded, it became increasingly apparent that it was indeed taking place around a ‘generic patient’ with just this presumed identity. Although 22% of the Northern Territory population are indigenous Australians, their identity was largely ignored in the debate leading up to the enactment of the Rights of the Terminally Ill Act 1995 (NT). Indeed, it was not until after the legislation was enacted and an education programme undertaken to inform Aboriginal people of the nature and content of the legislation that their concerns and views began to be heard (Mackinolty, 1997: 68). Chips Mackinolty, who undertook that education programme in the Northern Territory, argues that:

[T]he ‘debate’ over euthanasia legislation has not come to grips with the reality of the jurisdiction in which it has been enacted - one in which such a high percentage of the population has such a radically different world view from the general population. The ‘debate’ has concerned itself entirely with either Western ethical/moral arguments, or arguments of the ‘rights’ of the Northern Territory to make legislation for itself without interference from the Commonwealth . . . Both lines of argument centre solely on a Western world view; both ignore Aboriginal world views. (Mackinolty, 1997: 71)

As Mackinolty talked with Aboriginal people (around 900 people from 100 aboriginal communities around the Northern Territory), he uncovered a very different cultural perspective on euthanasia which had hitherto been entirely absent from the debate. Different voices were being heard and those voices revealed much broader implications of the legislation than had been previously considered.

His discussions revealed overwhelming opposition to the legislation. “Of 900 participants, only two, in private comments, expressed views supportive of the legislation.” (Mackinolty, 1997: 68) The clear message he received was that the legislation was against Aboriginal Law, that “the Government had broken Aboriginal Law by legislating to sanction such killings, and [that] this [was] seen as a threat to Aboriginal people and Aboriginal Law.” (Mackinolty, 1997: 70). The unpredicted social implications which became apparent were the likelihood of an increased reluctance amongst Aboriginal people to access health services out of fear of euthanasia and, consequently, a feeling amongst both Aboriginal and non-Aboriginal health workers that their positions would be difficult to maintain and that their standing in the community would be jeopardized by working within clinics which were legally entitled to practise euthanasia (Mackinolty, 1997).

Yet, these valuable insights into the implications of the legislation for the health of indigenous Australians in the Northern Territory, a group which comprises almost one-quarter of the Northern Territory population and who already have a life expectancy 20 years less than non-Aboriginal Australians (Mackinolty, 1997: 7), were heard only after the legislation had been enacted.1

In a similar way, Susan Wolf has critiqued the failure, in the euthanasia debate in the United States, to explore the implications of euthanasia from a gender perspective (Wolf, 1996b). She argues that gender and social context have a significant impact upon both a woman’s decision to choose euthanasia and upon a physician’s willingness to accede to her request. She argues that cultural realities such as poverty, depression and poor health care, as well as cultural stereotypes such as the stereotype of the woman as self-sacrificing, influence both women’s willingness to seek euthanasia as a solution and society’s willingness to accept it as a solution (Wolf, 1996b: 306).

As the debate over legalized euthanasia grows in intensity in many parts of the Western world, these critiques highlight the increasing need to seek to uncover cultural bias within the debate, to seek to reveal and consider the impact of vulnerability, and to listen to the voices of the silent. Without considering these perspectives, it is difficult to place any trust in the justness of any ethical position advocated.

Thus, it is increasingly important to ask: Which voices are missing from the debate? and, What might their perspective add - not only to our understanding of the social impact of the legalization of euthanasia upon vulnerable and marginalized people, but also to a deepening of our understanding of the ethical dilemma itself by assisting us to assess the validity of arguments offered in that debate from a different perspective.

People with Disability - The ‘Other’ of the ‘Other’

There are many perspectives missing from the euthanasia debate - women, indigenous people, ethnic minorities, the poor, people of colour, the Third World, and the perspective of people with disability. These are the perspectives of those who have been constructed as ‘Other’, as falling outside the ‘paradigm of humanity’. When the perspectives of even those marginalized groups who are articulate and more visible within society are excluded from the euthanasia debate, it is not surprising that the perspective of people with disability has been absent, for the culture of negative silence has been strong amongst people with disability.

For people with disability, their history is largely a history of negative silence. The lives of people with disability have not only been constructed as ‘Other’, but frequently as ‘the Other’ of ‘the Other’. People with disability are marginalized even by those who are themselves marginalized. A number of feminists, for whom disability is an integral part of their lives, have highlighted the lack of understanding amongst feminists of disability issues and have challenged the feminist movement to embrace a deeper understanding of disability, incorporating the needs and concerns of women with disability into its discourse (Wendell, 1996; Morris, 1996; Hillyer, 1993).

It has also been suggested that the extent to which people with disability have been constructed as separate from the rest of society, even from other minority groups, has meant that many parallels which could be drawn with the struggles of other marginalized and minority groups have not been made. Dick Sobsey, a Canadian writer and activist who has written extensively on violence and disability, argues that the movements to combat violence against women, elder abuse, and other forms of family violence “have never been fully integrated” with efforts to challenge institutional violence against people with disability (Sobsey, 1994: 13).

It is hardly surprising then that, within the mainstream of society, amongst decision makers and legislators, the disability perspective has not been one which has been given great prominence. Nor is it surprising that this perspective has not featured prominently in the ethical discourse around euthanasia.

Incorporating the Perspective of Disability into the Euthanasia Debate

For people with disability, their disability frequently dominates their lives. This is not simply because of the impact of the impairment itself (the organic disability), but also because of the way in which society responds to disability (the social view of disability). The social treatment of people with disability has, historically, been dominated by responses of fear, rejection, isolation, segregation, abuse and control. The social position of people with disability has been location on the peripheries - usually, with limited access to financial resources and dislocation from social and emotional supports.

There is, therefore, a real need to incorporate this understanding of the lived experience of people with disability into any discussion of euthanasia. In this chapter, it is argued that this perspective will reveal, first, significant contextual factors associated with the cultural stereotyping of disability which encourage people with disability and, vicariously, their families and carers, to take recourse to euthanasia; as well as making physicians more likely to accede to their requests. Second, it is argued that society’s historical responses to disability, which have largely been driven by fear and which have included responses such as segregation, isolation and abuse, are likely to find expression within the practice of euthanasia. Third, it is argued that some of the social institutions - such as the law and medicine - which have traditionally played an important role in controlling the lives of people with disability and in providing legitimacy to responses to disability which are not humanitarianly defensible, are likely to find an extension of those roles through the practice of euthanasia.

It is also argued that the lived experience of people with disability taken in conjunction with other alternative ethical frameworks, such as feminist ethics, provides a significant challenge to the arguments which have been used to support the legalization of euthanasia - the pursuit of autonomy and the elimination of pain and suffering. However, these arguments are often heavily laden with judgements about the quality of life of people with disability and with stereotypes of disability which result in the valuing of some lives over others based on the notion of ‘lives not worth living’.

Cultural Stereotypes of Disability - The Life Not Worth Living

The cultural stereotype of the ‘life not worth living’ is a very powerful one in relation to people with disability. Susan Wendell argues that this concept “lies at the heart of much theorizing about abortion, euthanasia, and health care reform, putting the welfare and security, and the social acceptance of people with disabilities in jeopardy.” (Wendell, 1996: 151) It is certainly a notion which fits very comfortably with the theoretical justification for euthanasia of elimination of pain and suffering.

Yet, it is important to consider how much of that assessment of the life not worth living comes from our own cultural stereotypes of the valued life. Wendell writes of the ‘disciplines of normality’ - those disciplines which “require us to meet physical standards, to objectify our bodies, and to control them” (Wendell, 1996: 88). The less closely we are able to conform to these disciplines of normality, that is, the less closely our bodies align with this norm, the more uncomfortable is our position within society. These norms become associated with our value judgments of worth - our own and each others’ value. And we enforce these judgments upon each other.

Often these judgments are made from an ‘objective’ distance, by those who currently enjoy close alignment with these notions of normality. One striking example of this is an experience which a colleague of mine had while attending a forum on euthanasia. The participants broke into small groups and one of the participants in his group, a middle aged woman who enjoyed health and mobility, expressed forcefully that, in the event that she were unable to bathe herself and attend to her personal needs, she would regard her life to be of such poor quality that she would want the ‘right’ to die. Yet this ‘tragedy’ which she described was the daily landscape of life for my colleague. Yet, strangely, he was not asserting the same right as she, nor did he conceive of his life in the terms in which she had portrayed it.

A woman with disability who lives with a degenerative disease, Julie Reiskin, describes eloquently the subjectivity of her quality of life. She describes a base line which she had drawn beyond which she did not wish to live. She also describes that as she moved closer to that line, the line kept moving.

Three years ago my line lay at not being able to run. Then it moved to not being able to climb the stairs. It moved again, to: not being able to walk, then to: not being able to drive . . . Seeing as how I am writing this and I can no longer do any of these things, it’s clear I’ve changed my line again. (Reiskin, 1992)

Yet, the increasing willingness of society generally to make ‘objective’ assessments of value of life, assessments which are often supported by utilitarian thinking and economic rationalism, makes it even harder for people with disability to hold onto their subjective assessments. Feminist disability writer and activist, Jenny Morris, claims that the readiness of the more able-bodied (or the less disabled) to make judgments about those with disability (or those with greater disability) undermines the lives of the latter group (Morris, 1991: 58).

Social Duress

Wolf argues that the discourse of autonomy has created a very mechanical approach to the euthanasia question which is, essentially, expressed in this equation: eligible rights bearer + assertion of right = death (euthanasia); or disease + demand = death (Wolf, 1996b: 298). This mechanical approach to autonomy leaves little room for a deeper ethical discourse. It precludes an investigation into the social context of the decision to seek euthanasia and it allows legal safeguards to be content with a consideration only of whether personal duress has been present, but does not, as Wendell points out, call upon legislatures to demand an absence of social duress in ‘autonomous’ decisions (Wendell, 1996: 159).

This social duress, in relation to people with disability, might take a number of forms. It may be related to the negative stereotyping of disability which eventually erodes the self-perception of a person with disability so that she or he comes to believe the message constantly being heard: that a life lived with disability is a life not worth living; a life which is burdensome to others. Thus, the autonomous decision becomes culturally coloured by the stereotypes of disability.

There are other social pressures which make euthanasia appear an attractive option. Lack of resources and supports, along with the isolation and exclusion many people with disability experience compound the intensity of their experience of disability, so much so that euthanasia becomes the most attractive option available.

All these things override the intrinsic will of a person with disability to live. An 'autonomous decision' then becomes not an expression of powerful autonomy, but of an over-ridden will to live. Cal Montgomery argues that, as a person with disability living in our current social climate, he is unwilling to trust his own autonomy because he is acutely aware of the social factors operating which would encourage him to ‘choose’ death.

I do not trust my own autonomy in the current atmosphere because I am very aware of what it takes to push me to despair and of the likelihood that these things will happen . . . It is not my disability that is causing this despair; it is a combination of my disability and the environment I live in - an environment which could be changed. And while I support having as wide a range of choices for people as are possible without harming people, I do not think that setting it up so that large numbers of people with disabilities are likely to perceive their only choices as death or the financial ruin of their families, or death or uncontrolled (but not uncontrollable) pain, or death or incarceration in a nursing home or other institution, or death or the exhaustion of loved ones and the increasing straining of relations between them [is really given them ‘choices’]. In theory it should never come down to options like these. In practice it does. And as society increasingly sees death as the dignified option in each of these pairs, the balance is tipped. There is pressure to die.” (Montgomery, 1997: 25)