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)  

This social context operates in two ways - not only to make people with disability more likely to seek euthanasia as a solution, but also to make friends, family and physicians more willing to regard these ‘choices’ as rational ones.  Morris argues that “it seems to be relatively easy for the non-disabled world to judge that people who require physical assistance to such a high degree are making a rational decision when they say they want to die.” (Morris, 1996: 40)  The failure of the able-bodied community to challenge these choices confirms in people with disability that their life is indeed not worth living.

  Within this social context, silent acquiescence to the demand of people with disability to die is, arguably, not respect for autonomy, but rather an act of severe social neglect; a derogation of social responsibility.  

Euthanasia as a Social Response to Disability  

Disability evokes a range of responses in individuals and in society; yet, many writers argue that all of those varying responses are evoked by one basic response:  fear (Wendell, 1996; Hunt, 1966).  It is not just the fear of difference and the unknown, but the fear which arises because people with disability represent that which the able-bodied might one day become.  People with disability, by their very existence, defy the myth of perfection; they defy the disciplines of normality, which people without disability try so desperately to maintain.  In Paul Hunt’s words: “A deformed and paralysed body attacks everyone’s sense of well-being and invincibility” (Hunt, 1966: 155).  For Wendell, the result of this fear is a devaluation of the person with disability and the ‘Othering’ of him or her. (Wendell, 1992: 74)  

Historically, Western society has progressively developed  models to explain disability - for example, the religious model of disability, the medical/genetic model of disability, and the rights-based model of disability - yet within all of these models, the essence of disability remains the same - otherness (Clapton and Fitzgerald, 1997: 20)  This ‘otherness’, which remains intrinsic to all of them, sets the parameters for social response to disability.  

Fear of the ‘other’ seems in turn to elicit a number of secondary responses.  First, avoidance.  Second, the desire to control that which is different.  Third, violence and abuse of those who are different.  And, fourth, somewhat paradoxically, the response of empathy expressed as charity and pity - for by making others the objects of  sympathy, there remains a distance and the relationship which develops is not one of equals but one of the indebted to the benefactor.  The question then is: How might these responses manifest within the practice of euthanasia?  

According to Liz Crow, a feminist disability writer, the response of avoidance frequently manifests in practices such as: selective abortion, sterilisation, withholding treatment from newvborns with disability, infanticide and euthanasia or assisted suicide (Crow, 1996: 213).  Within the context of the euthanasia debate, this desire to avoid disability may play a significant role in advocating for the taking of another’s life, particularly in the many circumstances in which people with disability are unable to express their wishes and decisions are made through the agency of others.  Rather than embrace the condition of disability, and the person with the disability, it is sometimes simply easier to avoid confronting one’s own fears and to avoid finding the personal resources required to cross the self-constructed chasm of difference.  At times, then, elimination of the person may become the most effective means of avoidance.

The second response of control is closely linked to avoidance, for if avoidance is not possible, control of difference is the preferred option. Historically, this has been done through institutionalization of people with disability (by placing the difference within a confined and controllable space) and, medically, through attempts at ‘curing’ impairment.

Many writers point to the historical use of euthanasia as a form of social control in Nazi Germany and warn of the potential danger in that being used again as a means to control and eliminate people with disability (Gallagher, 1990; Wolfensberger, 1981; Morris, 1991).  There is often a reluctance to talk about genocide in the context of modern Western society; rather, there is a preference to isolate it historically to other times, other nations, and other societies.  Yet, as Ervin Staub, who has written extensively on genocide, points out genocide is usually only the end of a progression of earlier less harmful acts which make more harmful acts possible and acceptable.  He argues that “the motivation and psychological possibility [of genocide] evolve gradually”. (Staub, 1989: 7)   In relation to people with disability, this may mean that the very narrow psychological sentiment of control of people with disability which manifested first in instititutionalization (and its associated deprivations and abuses) may gain expression in a decidedly more permanent infringement of human liberties: the taking of life.

The response of violence and abuse naturally follows from the response of control, for control  (and the power imbalance which goes with it) frequently provides the opportunities for the expression of abuse and violence. 

Hunt expresses the types of subtle abuses which can arise from this culture of control:

In the hospitals and Homes I have lived in one rarely sees any physical cruelty; But I have experienced enough of other kinds of subtly corrupting behaviour.  There are administrators and matrons who have had people removed on slight pretexts, who try to break up ordinary friendships if they don’t approve of them.  There are the staff who bully those who can’t complain, who dictate what clothes people should wear, who switch the television off in the middle of a programme, and will take away ‘privileges’ (like getting up for the day) when they choose. (Hunt, 1966: 154)

However, the social response to violence and abuse, irrespective of which end of the continuum of violence it falls, has often been passive: denial, blame (of the victim), and privatization (a domestic matter).  The impassivity of social and legal institutions in the face of violence - for example, enforcement agencies, the courts, and legislators - by default supports the perpetrator.  Against this background, it is important to consider whether  the contextualizing of the practice of euthanasia itself within a medical setting  or within the language of care and compassion can actually civilize or normalize (by technologizing) violence against people with disability.

The fourth response to disability identified above was an empathetic response.  In some ways, this response has been a confusing one and a difficult one to critique for it seems to emanate from a position of beneficence.  Jenny Morris describes her gradual deconstruction of this position.

During the years following my accident, I have on countless occasions been told by both strangers and acquaintances how ‘wonderful’ they think I am.  It took a while to realise why this kind of remark provoked such anger in me.  After all, those who say it seem to think that they are praising me for struggling against the difficulties which physical disability brings.  When I eventually unpeeled the layers of patronising nonsense,  I realised that at the heart of such remarks lay the judgement that being disabled must be awful, indeed intolerable.  It is very undermining to recognise that people look at me and see an existence, an experience, which they would do everything to avoid for themselves. (Morris, 1991: 15)

Morris’ critique of the response of pity which she so often experienced reveals in those who feel that pity, an essential distaste for the condition of disability, an ‘othering’ of the person with disability.  Yet, that essential sentiment of ‘other’ is carefully wrapped inside an attempt to rise above these negative human traits by ‘doing good’ to the ‘other’.  It is an expression of an ongoing internal debate, but a debate which has ended only in a failure to transcend the fear of difference and integrate ideals with actions. 

This formula, however, creates considerable vulnerability for people with disability in relation to euthanasia, especially when one of the cornerstones of the debate has been an appeal to a very similar empathetic response, based in a concept of beneficence - the alleviation of pain and suffering.  However, for those who have failed to really reach out to a person with disability, but rather approach them from within a charity model, the desire to ‘do good to them’ from a distance is likely to make them feel more comfortable with either acceding to requests for euthanasia or, in the case of persons who lack capacity, making that decision for them.

Institutions of Social Control in the Lives of People with Disability - The Law and Medicine

Two social institutions - the law and medicine - play an extremely important role in the practice of euthanasia: the law in validating it and medicine in effecting it. These institutions have also played prominent roles in the lives of people with disability.  In assessing any cultural biases which either of these institutions may import to the euthanasia debate, it is important to understand the nature of the relationship of these institutions to people with disability, and to consider whether any inequities in this relationship are likely to be transposed to the euthanasia question.

Medicine is the site of euthanasia; the social institution chosen to effect it.  This, in and of itself gives the practice a certain social legitimacy moving it into a ‘civilized’ context.  This, taken in conjunction with the historical treatment of people with disability within the medical system means that the particular vulnerability of people with disability within that system must be taken into account when considering public policy on euthanasia.  Medicine defines disability as that which it cannot cure.  Yet, because the culture of medicine has little room for the notion of living with the incurable, and because medicine thus feels compelled to effect ‘cures’, the notion of ‘cure’ has been extended to incorporate elimination. 

Within the field of genetics, in which genetic technology now has the capacity to identify impairments in vitro, but has not yet developed the capacity to ‘cure’ those impairments, the ‘therapeutic’ response has become elimination - the ‘therapeutic abortion’.  Within a medical culture which places little emphasis upon rehabilitative medicine (Wendell, 1996: 138), euthanasia is likely to become a ‘therapeutic’ response to impairments and conditions which cannot be ‘cured’ in the traditional sense. 

Wolf notes that the first three ‘patients’ of Dr Jack Kervorkian were women who had conditions which were not terminal, but which Western medicine cannot ‘cure’ (Wolf, 1996: 237-8)  The first, Janet Adkins was a 54 year-old woman who had recently been diagnosed with Alzheimer’s disease.  The second, Marjorie Wantz, was a 58 year-old woman who had severe pelvic pain, the source of which had not been diagnosed.  And the third, Sherry Miller, was a 43 year-old woman with multiple sclerosis (Wolf, 1996: 237-8).  Instead of challenging medicine to search deeper within its repertoire for responses, rather than cures, to chronic pain and suffering, euthanasia supports the current myth of control which is such an essential part of the medical identity.

While medicine provides the site for euthanasia, the social institution of the law provides its validity.  The relationship of the law to people with disability is a very different one from the relationship of medicine.  While the medical system has played an active role in defining and controlling disability, the legal system has regarded disability as largely invisible.   This is not surprising in that, like most socially and economically disadvantaged groups, their access to the legal system is severely curtailed by their lack of access to financial resources.  Consequently, the most likely intersection they are likely to have with the legal system is either as victims or as alleged offenders within the criminal justice system.

As the legal system has little exposure to the lives of people with disability, the system’s understanding of the vulnerability of people with disability is similarly limited. (Sobsey, 1994: 322)  In addition, this lack of exposure to issues around disability means that many of the social myths about  people with disability and value judgments about their worth and their appropriate place in society, which are part of the general community, are imported, without contestation, into the legal system.

When this basic ignorance is combined with the reductionist nature of legal thinking which individualizes, rather than socializes and contextualizes, legal dilemmas, the position of the person with disability within the legal system is one of extreme vulnerability and the legal system can actually be used, in a similar way to medicine, to legitimize abuses against people with disability.  Sobsey chronicles a number of cases in which acts of violence against people with disability, including rape and murder, have been trivialized by the legal system giving extremely low sentences which do not reflect the severity of the crime (Sobsey, 1996: xi)

There is already a body of case law developing around end-of-life decisions which seems to draw upon the language of the euthanasia debate, to justify the taking of life of people with disability, even without their consent.

In an English case, a doctor, was charged with the murder of a newborn baby, John Pearson, who was born with Down’s syndrome, but who was otherwise healthy.  Dr Arthur, complying with the parents' wishes ordered 'Nursing Care Only', prescribed a drug, DF 118, to be given at four-hourly intervals with no sustenance. Gunn and Smith, commenting on this and another similar case, conclude that:

It appears that the duty [to preserve the life of a child] owed by this limited class of persons [doctors and parents] to an abnormal newly-born child is different from and of a lower order than that owed to a normal child.  This was certainly assumed in Arthur, and at least in part, appears to be supported by Re B. (a minor) [1981] 1 W.L.R. 1421, CA.  (Gunn and Smith, 1985: 705)

What these cases reveal is a willingness upon the part of judges and juries to accept, with little critical assessment, the notion that the life of a person with disability is not worth living and that she or he is better off dead.  This means that, even if euthanasia is only made legal in respect of adults who possess the legal capacity to make their own decisions in this regard, such notions are likely to come into play in considering the culpability of those who take the lives of people with disability without their consent, but who rationalize their decision on quality of life grounds.

But, even within the arena of the ‘autonomous’ decision, as was discussed earlier, legislators have been unable or unwilling to entertain the concept of social duress and its impact upon decisionmaking.  This unwillingness to examine context, turns such laws into stamps of approval for social neglect and “euthanasia becomes the socially accepted ‘solution’ to severe disability.” (Wendell, 1997: 159)

Alternative Frameworks for Approaching Euthanasia

While the failure of bioethics to attend to issues of culture leaves certain groups unprotected and vulnerable within the practice of euthanasia, this failure also precludes the inclusion of valuable perspectives in the euthanasia debate.  The insights of those who live with disability have the potential for substantially deepening social consideration of bioethical issues such as euthanasia.

As a contribution to a broad values framework and a process of values clarification, Hunt argues that people with disability play an important role in refocussing the values of society. “Our most important asset as disabled people in society [is] the uncomfortable, subversive position from which we act as a living reproach to any scale of values that puts attributes or possessions before the person.” (Hunt, 1966: 159)

Within the context of the euthanasia debate, this perspective challenges ethical judgements based in a quality of life ethic, where the quality of life judgement is made from a state of detached, rather than “participatory”, consciousness (Fitzgerald, 1995)  If those making the value judgments have not been able to merge their own lives with those of  the people whom they are judging, the subjective application of their judgements is likely to be flawed.

Lous Heshusius regards participatory consciousness to be essential for ethical dialogue.  In her view, this demands of the ‘ethicist’ a recognition of kinship and relationship with those about whom ethical judgements are being made (Heshusius, 1994).  This method of ethical inquiry in itself presents a challenge to the principles of autonomy upon which much of the euthanasia debate is based.

In itself disability challenges the broader society to recognize what many regard as an essential, but increasingly forgotten, aspect of the human condition: interdependence.  Wendell argues that both feminist ethical thinking and the perspective of disability is thus providing an alternative framework for approaching ethical issues; one which is more likely to lead to ethical conclusions which show a deeper concern for social fabric and individual wellbeing. 

Susan Wolf argues that a fuller autonomy can, in any case, only be achieved through interdependence.  She cites the feminist writer Jennifer Nedelsky who reflects, “If we ask ourselves what actually enables people to be autonomous, the answer is not isolation but relationships . . . that provide the support and guidance necessary for the development and experience of autonomy.” (Wolf, 1996: 300)  In the context of euthanasia, this demands that ethical judgements be made within a broader social context:  a consideration of the pressures upon an individual, of his or her social situation - of isolation or community.  Such considerations bring a greater ethical responsibility for the ‘ethicist’, as a participant, is obliged to respond to the social context of the request and cannot simply hide behind the principle of autonomy and allow people to ‘die with their rights on’.

This challenge to autonomy which is emerging from within the feminist discourse and, increasingly, from the disability perspective, is also echoed in value frameworks of indigenous cultures where an acknowledgment of community and interdependence is essential to ethical decision making.  Mackinolty observed that the Northern Territory euthanasia legislation, which was essentially designed to preserve individual autonomy, was for this very reason offensive to “Aboriginal ideas about civil society, which is collectivist in nature.”  Mackinolty reports that “many we spoke to were astounded that such a fundamental decision about life and death could, or should, be made without reference to the immediate family and extended relationships or others with ritual relationships to the person involved.” (Mackinolty, 1997: 70-71).

While it could be argued that sense of interconnectedness actually elicits the desire to ease pain and remove suffering by providing the option of euthanasia, the perspective of disability offers, however, a challenge to a deeper care which falls within a broader cosmological framework.  The care which calls for the taking of life as a response to suffering comes from a culture of control; a culture which is an essential part of the philosophical basis of modern Western medicine and most of modern Western society, too.

However, for those whose life is lived within a different cosmological framework where mystery is as real as Wall Street and where ‘cause’ is defined more broadly than ‘medical diagnosis’, pain and suffering take on different meaning.  And within this different meaning context, different responses to pain and suffering emerge.  Similarly, there are individuals, whose lived experience challenges the dominant world view of their own culture by presenting experience which defies the theory.  People with disability are frequently amongst these.  Yet, instead of listening to the wisdom which comes from these experiences, our society has a desire to cut short the experience before it defies our own worldview.  This process of confronting our inability to control everything, to surrendering to a force beyond ourselves, to being open to vulnerability and trusting of others’ responses to our vulnerability is, however, part of a deeper understanding which most of us are confronted with at some time in our lives, but also one which most of us seek avidly to avoid because it fails to fit with the Western liberal notion of self.

This reductionist and mechanistic notion of self, which is unable to make meaning of pain and limitation, prevents us from developing a culture of living with pain and suffering (Wendell, 1996: 109, 137), just as it prevents us from developing a culture of living with death (Illich, 1977: 207-210).  Yet, there is a cost and a huge cost - for no matter how hard we try, the reality never seems to fit the myth of control and at some point each of us, as our life experience defies that myth, are ‘shamed’ by society for this open defiance of the dominant paradigm.  In Wendell’s words, we are given an ultimatum:  Get well or die (Wendell, 1996: 105).

Conclusion

The test of the validity of any public policy must be its impact upon the most vulnerable people in society.  Euthanasia is a public policy practice which is irrevocable and which is fatal.  For this reason, it deserves thorough scrutiny from the perspective of  the most vulnerable.

In this chapter, it has been argued that that perspective has not been applied adequately to the euthanasia debate.  Instead, the cultural biases which exist in every other social context have operated to frame the debate within the context of the dominant social paradigm.  Certain unconscious assumptions have been made about the presumed identity of the ‘generic patient’ who is at the centre of this ethical discourse - he is autonomous, middle-class, white and male.  This stereotyping is subconsciously affirmed by the identity of some of the most prominent advocates of  the practice of voluntary euthanasia:  Derek Humphrey, Timothy Quill and Jack Kervorkian in the United States; Peter Singer and Phillip Nietschke in Australia.  All of these prominent, high-profile, euthanasia advocates belong to just that dominant paradigm - they are white, able-bodied, middle-class, professional males. 

It has been argued that when the identity of that generic patient is altered to include ‘variables’ such as disability, gender, race, and economic status, the lie of the land changes and the boundaries and essential constituents of the debate shift.  Then, arguments based on care and compassion effected through the elimination of pain and suffering need to be extended to a consideration of the way in which cultural stereotypes of disability define the levels of pain and suffering which are intolerable to life - the life not worth living.  When we acknowledge vulnerability, then arguments based on the principle of autonomy must be extended to incorporate the concept of social, not just personal, duress - a broadening of understanding to incorporate the social context in which decisions are taken.

It has also been argued that by socially contextualizing this debate, a responsibility arises to attend to the inequalities which cause individuals with disability to choose, or have chosen for them, death over life.  According to Wolf, “Were we actually to fix those other problems, we have no idea what demand would remain for thoese more drastic practices and in what category of patients.” (Wolf, 1996b: 306)  This calls for a more participatory approach, not based in sympathy and pity, but based in conscious relationship.

It is argued  that this broadened cultural analysis actually calls for not only a re-conceptualizing of the euthanasia debate, but also a re-prioritising of it.  When for so many marginalized groups of people, the ‘right to live’ is not yet firmly entrenched, it is questionable whether it is yet the time to debate the ‘right to die’.  The priority given to the debate is itself an expression of the cultural bias inherent in it.

When the health and lives of people with disability are compromised by institutional care, chemical abuse and violence (Sobsey, 1994); when Aboriginal Australians live, on average, 20 years less than white Australians (Mackinolty, 1997); and when in some countries of the world more than three in every ten children born die before they are five (New Internationalist, 1997: 31), the concept of a ‘right to die’ reveals itself as a privilege of a certain section of society who have moved on from their struggle for the ‘right to live’ without attending to the vast majority of the world’s citizens who are still fighting for this most basic human right. 

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Endnotes:  

1          The Rights of the Terminally Act 1995 (NT) was overturned by the Euthanasia Laws Act 1997 enacted by the Australian Commonwealth Government.