Lives of Inestimable Value: Life Worthy of Life: A Response to the National Health and Medical Research Council's 'Discussion Paper on the Ethics of Limiting Life-Sustaining Treatment.' (Australia)

Article excerpt

Disabled People' International (Australia) only recently became aware of National Health and Medical Research Council's (NH&MRC) "Discussion the Ethics of Limiting Life-Sustaining Treatment." [1] Disabled Peoples' International (Australia) has never before entered into the biothetical debate concerning disability issues. This is partly because of the contentious issues that are involved. More importantly, however, the members of Disabled Peoples' International (Australia) are people with disabilities.

People with disabilities are some of the poorest and most disadvantaged members of Society. Hence, it is particularly difficult for people with disabilities to gain success to the resources necessary to undertake the tertiary education which is often the hallmark of success in the bioethical arena.

It is also difficult even for full-time commentators in the bioethical arena to gain control of the material in this area and to keep up to date, let alone the vast majority of our members who are still striving for access to basic human requirements associated with such areas as personal and attendant care requirements.

Major Thesis

"The arrival of a child with severe birth defects is always a tragedy for the parents, and often for other family members." [2]

This quotation from Bailey's recent book Human Rights: Australia in an International Context is fairly indicative of dominant social attitudes which see disability as involving an inherent tragedy, rather than seeing the tragedy lying in the handicapping situations which people with disabilities face in Society. It is kust a perspective which is to be found within the National Health and Medical Research Council's "Discussion Paper on the Ethics of Limiting Life-Sustaining Treatment."

The NH&MRC's paper is ndicative of the attitudes of decision-makers who seek to eliminate many forms of disability, especially those which have a genetic basis, are commonly labeled as "severe," and are held to cost Society great sums of money. Such is the thrust of publicly funded research, of some learned bioethical theorists, and of proponents of genetic disease registration, screening, and abolition.

The central thesis that Disabled Peoples' International (Australian) has in responding to the NH&MRC paper is that having a disability is not inherently tragic; rather it is the handicapping social policies and practices which are the tragedy. It is the lack of provision of necessary personal care services which provides the tragedy to be found within the incidence of disability in the community.

Disabled Peoples' International (Australia) holds "disability has too long ben viewed as a problem for the individual and has not been seen in terms of the relationship of that individual and his/her environment." [3] Accordingly, the following definitions, which have been adopted globally by Disabled Peoples' International, are utilized within this paper and will be seen to be crucial to our response:

"Disability" is a functional limitation within the individual caused by

physical, intellectual, emotional or sensory impairments.

"Handicap" is a loss or limitation of opportunity to take part in the life of the community on an equal with others due to physical and social barriers. [4]


The NH&MRC's "Discussion Paper on the Ethics of Limiting Life-Sustaining Treatment" notes that "good ethical decisions can only be made by knowing the needs, expectations and reasonable judgments of the community at large." Disabled Peoples' International (Australia) agrees with this perspective. However, it holds that the perspectives of the community at large, and specially the perspectives of people with disabilities, were not fully taken into account in the preparation of the NH&MRC's document.

In its "Discussion Paper on the Ethics of Limiting Life-Sustaining Treatment" the NH&MRC asks the following questions:

1) New technologies allow maintenance of life (as distinct from health) where previously this has not been possible. …


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