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.