SAVES is not affiliated with Exit International / Dr Philip Nitschke and opposes the public availability of a 'peaceful pill'.

During the World Federation of Right to Die Societies Conference in Boston, (Sep 1-3 2000) demonstrations were held nearby by 'Not Dead Yet', a group of people living with disabilities. They were expressing a fear that the legalisation of voluntary euthanasia would leave them vulnerable. This has signaled the need for greater understanding of this fear by advocates for humane law reform, through an exchange of views with people living with disability in our own society.

It is important to acknowledge the different ways in which the experience of disability may lead to feelings of vulnerability and fear of legislative change. A claim has been made that the trend towards legal acceptance of voluntary euthanasia has a specific impact upon the lives of people with disability, for their decisions may be influenced to an extent by the way they perceive their disability. This in turn may be a reflection of the way in which society understands and projects disability. (1)

One commentator maintains that 'a society will devalue those who are perceived as embodying the opposite of what it values'. (2) Given the nature of contemporary society, such values appear to be influenced by materialism, and an environment in which 'difference and diversity become less acceptable as we strive to attain the perfect and uniform product.' (3). It is therefore feasible to suggest that, within this climate, the social circumstances are created whereby people with disabilities may too easily feel that their lives are not worth living.

For instance, what would normally be considered autonomous decision making, such as exercising choice when life becomes intolerable, may on occasion represent an over-riding of the will to live. Yet addressing the injustices promoting compromised decision making, is no easy task. The historical experience of entrenched deprivation by many people living with disability, at both the personal and financial level, cannot be ignored. Understanding and acknowledgment of this reality by others may at least be a start.

However we all face the possibility of living with varying degrees of disability in our lives, including the outcome of trauma, but would still assume the right to make our own decisions should life, for any reason, become an intolerable burden with no acceptable remedy. To assert instead that individual members of a particular group cannot make personal decisions on ethically or socially controversial issues sets a worrying precedent. It also assumes that all individuals share the imputed characteristics, values and vulnerabilities of that group. (4)

Never- the- less for some people with disability there is a real tension here; between feelings of fear and vulnerability on the one hand, and the need for, and right to self-determination on the other. This tension itself becomes yet one more obstacle to be overcome. Society's challenge then is to help ameliorate this situation while acknowledging and responding to those with a vested interest in the debate on voluntary euthanasia.

These include patients who want help to end their suffering, health professionals who respond, those who seek the security of legalised voluntary euthanasia but have no immediate personal stake in the issue, and those who are currently healthy but wish to choose their own time of death. There are people who feel at risk, people who are not competent to make their own decisions, and of course, society as a whole. (5)

Arguably society as a whole has a responsibility to give particular attention to the needs of the incurably ill who are suffering and seek voluntary euthanasia as an option. It must also ensure protection of people who feel at risk of others making decisions for them by pressure or coercion, as well as for those people unable to make their own decisions.

In addressing these problems the claim that it is just too difficult to legislate for voluntary euthanasia provides no solution. There are many difficult decisions to be faced by our legislators and these cannot be abdicated. What must be considered however in respect of those who feel at risk, is to place the onus on those proposing legislative reform to prove that there are adequate safeguards and mechanisms of accountability. (6) To achieve this requires open and honest dialogue between the different parties in a climate of mutual respect, with a view to augmenting and enhancing legislation; not vetoing it. Solutions may then be promoted without imposing moral decisions made by people living outside the experience of another's suffering.

What may be of assistance when considering legislation is a statement of values and principles that the legislation intends to implement, articulation of appropriate procedures and accountability, the needs of different stakeholders, safe-guards and sanctions. It is important to have laws to effectively deal with the complexity of needs in this debate, and this requires careful thinking about how to make legislation work for all. (7)

Dialogue between legislators and people living with disability must therefore be initiated and fostered as a first step to mutual understanding, respect and support to this end.

Julia Anaf

References:

1. Fitzgerald, J. 1996, 'Legalizing Euthanasia: Its implications for People with Disabilities', Australian Disability Review, vol 2 pp 15-27
2. Wolfensberger, W. (1992) The New Genocide of Handicapped and Afflicted People, Syracuse, NY cited in Allister, J. (1996) 'Values in end-of-life-decision making: some implications for people with disability', Australian Disability Review, vol 2, pp 45-53
3. Allister, J. ibid
4. Brown R (Senator), Senate Legal and Constitutional Legislation Committee (1996), 'Consideration of Legislation Referred to the Committee', Euthanasia Laws Bill 1996, p 175
5. Wansbrough, A. (1996) 'On the horns of a dilemma - how can we take seriously different stakeholders in the euthanasia debate?', Australian Disability Review, vol 2, pp 15-27
6. ibid
7. ibid