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."  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.
"The arrival of a child with severe birth defects is always a tragedy for the parents, and often for other family members." 
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."  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. 
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. When are doctors are parents obliged to use them? When not?
2) The cost of health care is increasingly questioned. How are resources to be appointed? Who should be rationed?
3) What is to be done when the best ethical decision appears to be in conflict with the law, or where there is confusion as to how the law applies to a particular situation?
4) Who should decide for those unable to decide for themselves? Upon what criteria should the decisions be made?
5) Can the medical profession maintain its own standards, or do governments need to appoint regulatory bodies to safeguard the public? If needed, how would such bodies operate, and would they be effective?
6) How can ethical decisionmaking "keep up" with changing community attitudes?
In line with this the NH&MRC undertook a "study" of three gropus: 1) extremely low birth weight infants; 2) infants with spina bifida; and 3) the sick elderly. Let us examine the three studies entered into in the paper and relevant criticisms.
Entremely Low Birth Weight Infants
The NH&MRC notes that extremely low birth weight infants have an increased chance of death and disability and that neonatal intensive care is expensive, not only in terms of monetary values but stresses on parents and caregivers. It also notes that in this grouping "a few survivors will be entirely normal."  Disabled Peoples' International (Australia) agrees with this, however views the whole notion of "normal" as being problematic. Who may be identified as being normal? Is it the absence of disability or the presence of some form of characteristic viewed as "desirable"?
The NH&MRC makes a sketchy examination of two-called "clinical cases." In examining these, it ascribes unto the two cases probabilities of dying within several months. This is despite the fact that various social variables will ensure that individuals cases will not necessarily concur with previous statistics. The same may be said fo the likelihood of cerebral palsy, intellectual disability, and sensory impairment, which it is also gives in terms of percentages.
The NH&MRC notes that for either infant to be allowed to survive with what it calls "significant handicaps" there would be a large cost to the community. Unfortunately, it neglects to examine the potential lives of the two so-called "clinical cases" and the achievements that can and have been attained by people with severe disabilities, when the appropriate support structures are in place. In addition, the NH&MRC tends propriate support structures are in place. In addition, the NH&MRC tends to reflect dominant social attitudes when it talks of economic cost but neglects the multiplier effect which may be found in the generation of jobs and services through people with disabilities who survive.
Infants with Spina Bifida
In discussing the situation of infants with spina bifida, the NH&MRC holds that "severely affected children are at best wheelchair bound . . . ." Many members of Disabled Peoples' International (Australia) utilize wheel chairs to enhance and enable their mobility. We are not sure why utilizing a wheelchair is so inherently tragic, especially if it has a liberating effect. Here the NH&MRC displays a lack of knowledge of the situation of people with severe disabilities. This is also apparent in the use of terminology such as "intellectually handicapped" and "intellectually retarded." For some time now people with disabilities have been questioning such offensive terminology, preferring instead to talk of intellectually disabled or disadvantaged people.
In a value free way the NH&MRC advocates "non-intervention" for "severely affected children." It fails to provide an adequate definition of what this means despite referring to a particular case study and claiming that "she fulfills the criteria for non-intervention as she will not survive with less than severe handicaps." It would appear that the NH&MRC views non-intervention in this particular as involving withholding direct technological intervention of a medical nature as opposed to the withdrawal of nutrition and the possible utilization of sedation which has been reported in various cases.
It is quite clear that the NH&MRC has been influenced by the arguments of bioethicists such as Peter Singer and Helga Kuhse, especially in their underlying utilitarian approach to bioethical decision-making. However, Kuhse and Singer in their book Should the Baby Live?  persuasively question the distinction between killing and letting die. They rightly connect such a distinction with a very simplistic pespective of causation. For a result to occur there has to have been some form of "active" intervention. To this particular stance must be added some form of doctrine of intent. 
The Sick Elderly
In talking of the so-called "sick elderly," the NH&MRC notes that "there is a tendency in our Society to 'put away' our frail elderly into nursing home. . . . Negative social attitudes to ageing may sometimes result in less sensitive care, and lowered expectations regarding quality of life." 
It is significant that while the NH&MRC noted the problem of inappropriate instituonalization of the elderly, it neglected to consider the existing inappropriate instituonalization of people with severe disabilities and the negative impact this has upon the quality of life for people with the sorts of severe disabilities considered by the NH&MRC.
It is not proposed to discuss this particular section of the paper in further detail, due to the vast scope of this topic.
The NH&MRC proposes that various rights of "patients" may be identified. Among other things it notes that people have the "right to be treated in his/her best interests," but fails adequately to address the question of who decides about these best interests. It also identifies" the right to life" but qualifies this by saying that there should be a "dignified life." It also proposes "equal rights for all children and adults," yet in its preceding discussion it clearly views that some people have less of an equal right to life than others, based upon how worthless their life is seen to be by the NH&MRC.
The NH&MRC then goes on to identify various rights which may be ascribed unto physicians. Unfortunately, however, it never talks in terms of the duty and obligation that one would expect of such health care professionals.
The document is clearly inadequate as a "discussion paper" since it fails adequately to discuss many of the complex issues dealing with the ethics of limiting life-sustaining treatment. Further, the information base of this paper lacks the empowered perspective of people with disabilities and older people. It is also apparent that this discussion paper was informed very much by the perspective of medical practitioners whose forte is not necessarily bioethical discourse.
It is interesting that since the NH&MRC's discussion paper was released in November 1988 there have been several critical responses to it. For example, the Australian Catholic Bishops Conference produced an in-depth and highly critical response.  Another response entitled "Lives of Great Value"  was written by a collection of organizations which included people with severe disabilities and their families and caregivers. Let us examine this paper briefly.
The paper "Lives of Great Value" rightly points out that the NH&MRC paper assumes that disability in itself makes life to be low in quality and value and therefore in many respects can justify a decision that an infant should die. It also notes that people with disabilities can lead very high quality lives, not only in terms of themselves, but also in their impact upon Society and those with whom they interact.
A particularly important point is made when "Lives of Great Value" notes that:
where a life appears to be miserable, a fundamental question is whether the life is inherently miserable, or whether the apparent misery is the result of a lack of adequate support services for the person. If, as is more likely, the issue is one of inadequate support services, the answer is clearly to demand that those services be provided. 
This valuable response also notes that it is particularly difficult to assess the possible future quality of life of an infant with a disability. As "Lives of Great Value" cites a pediatrician, "it is impossible for anyone to make a pronouncement with any degree of certainty of the future functions and abilities of children born with Down's Syndrome." 
It is interesting that the NH&MRC released its so-called discussion paper, yet has failed to make any form of widely circulated public response to the criticisms which it has already received. There are many areas in which its paper is clearly inadequate, and there would have been merit in the NH&MRC publishing a corrected discussion paper which truly took into account the wide range of community opinions and utilized a more complete survey of the relevant bioethical literature.
Two Case Studies
Bioethical literature dealing with disability issues abounds with so-called "case studies," including those offered in the NH&MRC's paper and in such influential volumes as Robert Weir's Selective Non-Treatment of Handicapped Newborns.  Weir's book covers the full range of perspective as to whether or not babies with severe disabilities would be better off dead, ranging from those which advocate so-called active euthanasia to those which subscribe to an absolute sanctity of life doctrine. 
Often case studies are written and presented in a way which reflects the fact that they are written mostly be able-bodied people who lack the perspective of living with a disability in handicapping social situations. This perspective can have a valuable input into bioethical discourse. A relatively rare perspective from the point of view of someone with a disability is provided by Alison Davis. 
In reviewing Kuhse and Singer's book Should the Baby Live? Davis provides a critique which is based upon her experience as a person with severe spina bifida. Her perspective is markedly different from Kuhse and Singer's and is relatively rare within the disabled population because she has had access to the education and life circumstances which have allowed her to provide an effective voice about various bioethical issues dealing with disability. As she writes about Kuhse and Singer's book:
I was born with severe spina bifida, and am confined to a wheelchair as a result. Despite my disability and the gloomy predictions made by doctors at my birth, I am now leading a very full, happy and satisfying life by any standards. I am most definitely glad to be alive. Yet, because handicapped people are now presumed by some doctors, philosophers and society in general to have the capacity only for being miserable and an economic burden on the community, most of those who would otherwise grow up to be like me are now aborted or "allowed to die" (such a comfortable euphemism) at birth. At least in this respect Kuhse and Singer are honest enough to admit that there is no eithical difference between actively killing a baby and "allowing" it to die by sedation and starvation. They would argue that both are permissible. I would say that both are wrong, because killing human beings is wrong. 
Certainly, it may be argued that Alison Davis's case is in many ways exceptional. She was granted access to the necessary resources and life situations, including the necessary support from her family, which allowed her to lead what many would view as a successful life. She goes on to observe in another of her writings:
If I lived in a society where being in a wheelchair was no more remarkable than wearing glasses and if the community was completely accepting and accessible, my disability would be an inconvenience and not much more than that. It is society which handicaps me, far more seriously and completely than the fact that I have spina bifida. 
In talking of infants with disabilities, it is difficult to discern their perspectives. A different situation exists when a person with a severe disability holds that he would be better off if he were allowed to die, or were allowed to take such actions as would directly lead to ending his life. It is interesting to note here that often proponents of various forms of euthanasia seem to view death as being a more desirable situation than living with some form of so-called disability. There is no doubt that this is based upon a commonsense notion as to the nature of death, or the absence of life. However, it is very difficult to know or even speculate upon the nature of the existence or non-existence which may be found in the state we call "death." 
Of course, some people with disabilities, especially people with an acquired disability, talk in terms of their being better off dead. This is a perspective which demands respect, given that it is made by a rational adult. Frederick Maynard, an American physician, raises a case study of a seventeen year old person with a high level of quadriplegia, who expressed his desire to die.  Maynard argues that this particular person had access to the necessary monetary resources, an active rehabilitation program in place, and a loving and supportive family. Yet, he chose to request his family to remove his ventilator, allowing him to die.
It is not proposed to enter into the bioethical arguments associated with the notion of a "right to die," yet the experiences of people such as the young man cited above are utilized by proponents of the euthanasia of certain newborns to point to the fact that later in life people with disabilities view their existence as hopeless and without enough meaning and worth. There are, however, several problems with his perspective.
First, it should be noted that there is a difference between someone who acquires a disability later in life and someone who has a disability from birth. A person born with a disability may perceive this as part of his or her "normal" situation, whereas a person with an acquired disability has to develop a new concept of self in relation to society.
Secondly, terminating the life of a child with a disability soon after its birth gives no effective means by which the person can effectively make an empowered choice as to whether or not he or she views life as a viable option.
There can be no doubt that there are various situations with regard to newborns with disabilities where treatment would be burdensome to a degree which most people would accept as being inhumane.
As Nicholas Tonti-Fillipini notes in responding to the Human Rights Commission's 1985 occasional paper Legal and Ethical Aspects of the Management of Newborns with Severe Disabilities,  the decision to treat severely disabled minors involves two major difficulties. The first of these is the extent to which their interests are adequately represented.
As Tonti-Fillipini obsserves, the relatives of an incompetent patient normally exercise proxy consent or refusal on the grounds that a particular course of action would serve the patient's interests in the best manner. However, with the situation of minors, they often have not been in the circumstances to express what they desire, and such a representative role is much more difficult.
Secondly, it should be noted that relatives are "often themselves not competent, adequate representatives of the patient. In the circumstances of newborns, in particular, the loss and grief of the parents affects competence, and in some cases a conflict of interests over-rides their representative role and hence disqualifies them." 
Disabled Peoples' International (Australia) agrees with Tonti-Fillipini when he argues that:
Consent to treatment, however, is not a sufficient justification for treatment . . . the decision to treat must also be justified according to the validity of its purposes and whether or not the burden of treatment is proportionate to the probable affects on the patient's condition.
Where treatment is prolonged or is likely to be required for the rest of the patient's life, the burden of treatment is a large factor and may not be justified on the basis that it will maintain the life of the patient. That treatment cannot improve the patient's condition to a level at which some degree of human personality can be experienced is indicative of its relatively ineffectual nature; the burden of the treatment may not be justified and mere palliative care aimed at relieving distressing symptoms may be all that is warranted.
This decision, like all medical decisions, must be based on the effectiveness and burdensomeness of the available treatment options. It is not a decision about the worth of the patient nor should it implicitly deny the patient's protected status. 
Personal Care and Support Services
Perhaps one of the most disturbing aspects of the NH&MRC discussion paper is its lack of attention to the alternative ways in which people with disabilities may be cared for and in which their quality of life may be improved compared with today's situation. There appears to be an implicit acceptance of the existing inadequate level of support services of people with severe disabilities. This lack of support leads to various low quality of life situations which needlessly handicap people with disabilities. One example of this is the institutionalization of people with disabilities.
For some time now the disability movement in Australia has been calling for the provision of appropriate consumer controlled services for people with disabilities which would allow for the deinstitutionalization of people with disabilities. The provision of attendant care and/or personal care for people with disabilities is one way in which the quality of life of people with disabilities can be enhanced. Also the costs of institutionalization to Society may be reduced as it is currently often the only viable option for people with disabilities. The provision of attendant care enables such personal care tasks as toileting, meal preparation, getting to bed, getting up, bathing/showering, and being helped with the use of a respirator, etc. In other words, the "basic" tasks which help a person to survive while living in the community.
The provision of attendant care has actually been established to be less expensive than the cost of a bed in an institution. For example, Stephen Gianni of the Attendant Care Coaliation in Victoria argues that a bed in an institution costs $38,000-$110,000 a year, whereas attendant care costs an average of $23,000 a year. 
In purely economic terms it is possible to substantially reduce some of the
costs associated with sustaining the lives of people with disabilities while facilitating a greater quality of life than is presently enjoyued by both people with disabilities and their caregivers/families. The provision of other appropriate support services to enable living in the community would complement such schemes. The NH&MRC needed to examine these sorts of options and issues if its so-called discussion paper was in any way to be called informed.
In many respects the approach of the NH&MRC, which tacitly, if not overtly, supports the abolition of various forms of disability, is related to current and previous moves to screen and abort foetuses which are deemed to have a probability of having certain disabling conditions. In all of these cases a major premise appears to be that disability is an inherent tragedy, as opposed to the existence of handicapping social conditions.
We are whole people, not defective collections of body parts, intellect, and genes which are inherently less capable and worthy of life than so-called able-bodied people. Further, we challenge the moves to screen out disability as thye serve to reinforce the negative image of people with disabilities prevalent in today's Society. Such moves are indicative of a Society which accepts only those who conform to narrow norms of personhood.
It is particular tragedy that people should feel that there is so little social support and assistance, and that disability is so appalling, that they should seek an abortion lest they raise a "defective" child. Indeed, we question a social system which is prepared to fund the elimination and screening of people with disabilities, yet is not prepared adequately to fund the personal care and education services we need to lead autonomous, happy, and successful lives in the community.
Mary Johnson, an American with a disability, raises various questions regarding recent developments in the potential of screening for the cystic fibrosis gene, as recently reported in the New England Journal of Medicine. (24) She notes that few in Society see that abortion for genetic reasons is in any way problematic and notes that the discussion should be focused upon the thinking that prompts a woman or a couple to make specific decisions "based on cultural assumptions that have been shaped by discriminatory practices and attitudes against disabled people." (25) She goes on to observe that:
[A] decision to abort based on the fact that the child is going to have specific individual characteristics, such as mental retardation, or in the case of cystic fibrosis, says that those characteristics take precedence over the living itself, that they are so important and so negative, that they overpower any positive qualities there might be in being alive. Do we have the right to make those kinds of judgments for our children .... Don't we have an obligation to work to create a society in which things like cystic fibrosis are conditions to be treated, not feared? (26)
In terms of both decisions to abort foetuses and those decisions to withdraw life-sustaining treatment from many neonates with disabilities, much of the decisionmaking does not necessarily deal with the "right to choose." Rather, it deals with our Society's reluctance to accept people with disabilities as full and whole people who are not necessarily condenmed to a defective and substandard life.
Toward a More Tolerant Society
Why then is it that disability is not accepted as a legitimate condition for a person? Certainly, it needs to be remembered that the incidence of disability in Western societies appears to be growing. This is partly because of the inherently disabling life-styles and conditions which have been accepted by Society. Surely we should be aiming at a Society which is more tolerant of those who deviate from what are quite narrow norms associated with health and success.
In many respects, a desire to remove people with disabilities from our midst will impoverish Society. This is particularly the case, given the aging of Australian Society and the increased incidence of disabling conditions which can coincide with older age. Why must those of us with diabilities endure a very real stigma associated with being "defective" which is often far worse a pain that any physical discomfort associated with some disabilities? In other words, our less than tolerant Society serves to handicap us far more than our disabilities.
Who is it that shapes the agenda and dominant stereotypes which view people with disabilities as being inherently inferior and sub-standard and with worthless lives? Of course, it is those who are most powerful in Society and control the necessary resources who do this. They often lack any direct experience of disability, and even if they have direct experience, the access they have to necessary monetary resources means that they often escape the handicapping aspects of life which people with disabilities with less money face.
One of the ways in which we have reached such a status quo which is less than tolerant of people with disabilities is through our education system. Because of the handicapping policies utilized by government] and Society in general, people with disabilities have less access to tertiary education, and especially to professional training, than many other people in Society. This is reflected by the lack of people with disabilities proceeding to training as medical practitioners.
Hence, the world view which can go with a person's direct experience of disability is lacking in much of the approach developed by the medical profession toward disability. This is reflected in the attitudes found in the NH&MRC's report. Indeed, as mentioned previously to participate effectivity in the complex bioethical debates associated with disability issues, one needs access to a high level of education. This is difficult when even to survive from day to day is difficult for people with disabilities, let alone attempting higher education without the necessary support structures. It is no wonder that there is very little in the bioethical literature associated with disability which is written by people with disabilities.
One of the major questions posed by the NH&MRC in its discussion paper deals with the question of the appropriate allocation of finite health care resources. Unfortunately, it failed to address such important questions adequately in its paper as well as the role of social institutions such as the law and professions in allocating and determining the availability of resources. Perhaps most important is the NH&MRC's lack of questioning and critical appraisal of the current situations which cause such low quality of life for many people with disabilities and the frail aged in our Society.
For example, the NH&MRC could have chosen to address the critical issues associated with the provision of adequate resources for research which seeks to improve the lot of people with disabilities, increasing their quality of life and the contribution they can make to Society. Its disregard for such questions may well, in part, reflect the dominant approach in Society, informed by the biomedical model, which sees disability in terms of some form of failure by medicine to right deviancy deemed to lie within an individual.
To its credit, the National Health and Medical Research Council has slightly more adequately addressed issues of health care resource allocation in its "Discussion Paper on Ethics and Resource Allocation in Health Care." (27) Of course, it should be noted that many people with disabilities do not see themselves as fitting within the health care paradigm and certainly do not desire the needles control by professional medical interests which can occur in making resource allocation decisions.
Policies and decisions dealing with resource allocation must explicitly recognize that resource allocation decisions implicitly involve socially derived values. For example, many decisions about the provision or withdrawal of life-sustaining treatment are held by some medical practitioners to involve medical decisions. In reality, that which is shrouded in the mystique of a scientific and professional model reflects values (for example, in economic and ethical terms) about who should live and who should die and the life experiences and biases of decision-makers. As commentators in the history and philosophy of science and related disciplines have noted, science and medicine are inherently value laden.
To its credit, the NH&MRC paper argues that ethics committees can have a valuable role "but should never determine and direct what is done in any situation." (28)
Pinches makes a timely warning in discussing the new popularity of medical ethics, observing that with the rise of specialization we may see increased power resting in the hands of professional ethicists who are called on to make decisions in this area. (29) As he notes:
[T]he 'expert model' is particularly well-suited to medicine where the body of working knowledge is large, esoteric, and rapidly expanding. And so the rise of the medical ethicist can be easily fitted within this trend. He [sic] being understood as the individual who, with his [sic] specialized training, has privileged control over the subject matter of ethical problems in medicine. (30)
Other commentators echo the criticisms of the potential role of ethics committees.  It is unfortunate that the NH&MRC does not appear to have given sufficient consideration to the problems associated with ethics committees. For example, it argues that "such committees don't have legal authority, but there may be value in spreading the burden of responsibility among (presumably) capable and respected professional." (32) Inevitably, we have already seen and would see the domination of such committees by medical professional interests, whose members are not necessarily well versed in bioethical matters since this is not their primary training. Indeed, we need to ask, "Who selects the ethics committee?" Certainly, existing ethics committees are not necessarily representative of a wide range of community values. Consumer representation is more likely to be token than empowered.
It also needs to be remembered that because of the professional domination of ethics committees and the lack of access to the professions by the more disadvantaged in Society, the interests and perspectives of people with disabilities are often lacking on such committees. Indeed, even if a token person with a disability were appointed to such an ethics committee, it is a common refrain of consumer representatives on such medical dominated committees that it is very difficult to have an empowered and effective voice given the overwhelming ideological commitment of many of the rest of the members.
Kevin Andrews also makes a few pertinent criticisms of the role of ethics committees in the Australian context. (33) He notes that there is some confusion in Australia about the role of such committees and identifies two important issues. First, he notes the role of an ethics committee will inherently involve some form of conflict and that many commentators have suggested that there is "neither guarantee of better decisions nor justification for committee involvement in clinical decisionmaking." (34) He also notes that Guardianship and Administration Boards in Australia can provide an independent legal mechanism towards the resolution of disputes about appropriate treatment decisions without needing to burden ethics committees with such matters.
Secondly, he observes that the role of ethics committees in Australia has been subject to the political debate concerning the proper regulation and review of medical practices, particularly those involving research projects. The NH&MRC's development of ethics committees was primarily designed to review research projects for which there was an application for federal funding. They are similar to the American Institutional Review Boards, not their hospital ethics committees. As he clearly states:
... there is considerable potential for conflict between a body charged on the one hand with the review and policing of medical science in a institution and on the other hand the development of policy, the promotion of education and the provision of a forum for formal and informal discussion about issues of ethical concern by staff and others. (35)
As Hiram Canton (36) documents, in many respects the NH&MRC, and especially its Medical Research Ethics Committee (MREC), has exercised and does exercise formidable control over the medical ethical arena in Australia. Canton documents how the MREC has successfully fought to retain its de facto power through such things as successfully intervening to influence the role and agenda of the National Bioethics Consultative Committee. (37) Entrace to NH&MRC committees is carefully guarded and perpetuates narrow ideological commitments in the name of science which are not necessarily in the interests of less powerful groups such as people with disabilities.
Much of the NH&MRC's thrust appears to be to retain its power base and, in the case of bioethics, strenuously to protect its role in self-regulation of the medical profession and allied activities. Very often, pronouncements of the NH&MRC are accepted as de facto standards without any legislative base. Hence, the more public and community represented debate associated with legislation is avoided. This is despite the fact that the NH&MRC is publicly funded and distributes money for research which can be highly controversial and geared in ways that many in the community, upon serious debate, may not necessarily desire. Disabled Peoples' International (Australia) calls for an end to such self-regulation and the establishment of legislative measures which require effective and empowered community involvement and debate. This would, of course, include the use of the empowered perspectives of people with disabilities.
Contrary to the NH&MRC paper, severe disability does not necessarily mean a tragic existence. Rather, it is inadequate and inappropriate support services which handicap people with disabilities and serve to create a low quality of life. With appropriate support, people with disabilities can go on to lead happy and productive lives pursuing their choice of life-style. This is in marked contrast to the stereotype of an institutionalized person with a disability who lacks dignity and exists on welfare.
Disabled Peoples' International (Australia) asserts that people with disabilities are whole people, not defective collections of body parts and genes. We challenge moves to abolish people with disabilities, because they serve to reinforce the negative image of people with disabilities and are indicative of a Society which accepts only those who conform to narrow norms of personhood.
We also challenge a system which is prepared to fund the elimination and screening of people with disabilities, yet is not prepared adequately to fund the personal care, education, and support services we need to lead autonomous, happy, and successful lives in the community. Such a system perpetuates dependence on welfare, holding that people with disabilities are expensive, yet is prepared to spend thousands of millions of dollars on weapons systems to kill. This is one example of the horrific values which dominates public spending decisions and which the NH&MRC has failed to question or address in its so-called discussion paper.
Disabled Peoples' International (Australia) calls for the withdrawal of the NH&MRC's "Discussion Paper on the Ethics of Limiting Life-Sustaining Treatment." Further, it calls for the empowered involvement of people with disabilities in bioethical decisionmaking and debating. This should be within the broader thrust of a bioethical debate which truly reflects community attitudes. We affirm the inherent worthiness of the lives of all people regardless of their ability and/or disability.
(*) Prepared for Disabled Peoples' International (Australia), P.O. Box 713, Fyshwick Act 2609, Australia, Phone: (06) 2391911, Fax: (06) 2391989, by Christopher Newell, B.A., M.A. (Hons.) Copyright: This document may be copied in any format for the purposes of education and/or discussion of the issues raised in this paper. It would be appreciated if accrediation could be given to the author and Disabled Peoples' International (Australia).
Disabled Peoples' International (Australia)
The Australian Branch of Disabled Peoples' International is a policy development medium for people with disabilities across the country and is also an information and advocacy organization. It was formed in 1983 to act as a national focus for individuals and state affiliates of Disabled Peoples' International (Australia). Through our international network we are associated with similar groups in some ninety-seven other countries, and have nongovernment consultative status with the United Nations.
Disabled Peoples' International (Australia) has three main functions:
1. To conduct research into, and lobby about, various aspects of disability and the provision of benefits and services for people with disabilities;
2. To select and support representatives of the disabled community to sit on various public and private boards of management, advisory bodies, and public enquiries;
3. To inform people with disabilities and the community at large of the latest developments in services, benefits, and aids and equipment, through seminars, public discussions, and the use of various forms of media and publications.
Disabled Peoples' International (Australia) is the only multidiagnostic organization in Australia that is both managed by people with disabilities and accoutable to individuals with the full range of physical, sensory, intellectual, and/or psychiatric disabilities. As a result, our association is seen as "The Voice of Australians with Disabilities." We enjoy wide ranging support from and consultation by various state governments and the commonwealth government are recognized by the major nongovernment organizations serving the needs of people with disabilities.
(1) NATIONAL HEALTH & MEDICAL RESEARCH COUNCIL, DISCUSSION PAPER ON THE ETHICS OF LIMITING LIFE-SUSTAINING TREATMENT (1988) [hereinafter NH&MRC PAPER].
(2) T. BAILEY, HUMAN RIGHTS: AUSTRALIAN IN AN INTERNATIONAL CONTEXT 257 (1990).
(3) Policy Statement of Disabled Peoples' International (Australia).
(5) NH&MRC PAPER, supra note 1, at 2.
(6) H. KUHSE & P. SINGER, SHOULD THE BABY LIVE? THE PROBLEM OF HANDICAPPED INFANTS (1985).
(7) Id. at 80-86; see also Warnock, Book Review, Putting a Value on Human Life, NEW SCIENTIST, Sept. 19, 1985, at 51 (reviewing H. KUHSE, supra note 6).
(8) NH&MRC Paper, supra note 1, at 5.
(9) AUSTRALIAN CATHOLIC BISHOPS CONFERENCE, SUBMISSION TO THE NATIONAL HEALTH & MEDICAL RESEARCH COUNCIL ON THE DISCUSSION PAPER ON THE ETHICS OF LIMITING LIFE SUSTAINING TREATMENT (September 1989).
(10) REDFERN LEGAL CENTER, LIVES OF GREAT VALUE (Oct. 31, 1989) (a response to the NH&MRC'S PAPER).
(11) Id. at 3.
(12) Id. at 4.
(13) R. WEIR, SELECTIVE TO NON-TREATMENT OF HANDICAPPED NEWBORNS (1984).
(14) The sanctity of life doctrine referred to here differs slightly from the definition used by Helga Kuhse. For example, in discussing her thesis regarding the sanctity of life doctrine, Kuhse notes various (often theistic) perspectives provided by theologians and philosophers which ascribe infinite value unto the lives of babies and to human life in general. H. KUHSE, THE SANCTITY OF LIFE DOCTRINE IN MEDICINE (1987). See also, R. WEIR, supra note 13, at 150-51.
(15) Davis, Yes, the Baby Should Live, NEW SCIENTIST, Oct. 31, 1985, at 54.
(16) Id. at 54.
(17) A. DAVIS, FROM WHERE I SIT (1989).
(18) This raises various epistemological questions which are beyond the scope of this paper given the wide ranging questions raised here.
(19) F. Maynard, Ethical Theory: Medical Care and Life and Death Issues (paper presented at Independent Living and Post-Polio Conference, in St. Louis, Mo. (June 1989)).
(20) N. Tonti-Fillipini, Legal and Ethical Principles and the Management of Minors with Severe Disabilities (1985) (an unpublished paper by hospital ethicist at St. Vincent's Bioethics Centre, Fitzroy, Australia, critiquing Human Rights Commission, Occasional Paper No. 10, Legal and Ethical Aspects of the Management of the Newborns with Severe Disabilities (Aug. 1985)).
(21) Id. at 26.
(22) Id. at 26-27.
(23) S. GIANNI, ATTENDANT CARE COALITION OF VICTORIA, WHAT'S THIS ATTENDANCE CARE? 11 (1989).
(24) Johnson, Aborting Defective Foetuses--What Will It Do? LINK DISABILITY J., Aug./Sept. 1990, at 14 (reprinted from DISABILITY RAG).
(27) HEALTH CARE COMMISSION, DISCUSSION PAPER ON ETHICS AND RESOURCE ALLOCATION IN HEALTH CARE (May 1990) (adopted by NH&MRC).
(28) NH&MRC PAPER, supra note 1, at 16.
(29) Pinches, On the New Popularity of Medical Ethics, INT'L J. APPLIED PHIL., 1988, AT 37, 37-42.
(30) Id at 37.
(31) Fleetwood, Giving Answers or Raising Questions? The Problematic Role of Institutional Ethics Committees, 15 J. MED. ETHICS 137 (1989).
(32) NH&MRC PAPER, supra note 1, at 16.
(33) Andrews, 8 ST. VINCENT'S BIOETHICS NEWSLETTER 4 (1990).
(34) iD. AT 7.
(36) TRENDS IN BIOMEDICAL REGULATION (H. Canton ed. 1990)).
(37) Id. at 73.…