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French, Phillip; Kayess, Rosemary --- "Deadly Currents Beneath Calm Waters: Persons with Disability and the Right to Life in Australia" [2008] UNSWLRS 34

Last Updated: 12 November 2008

Deadly Currents Beneath Calm Waters: Persons with Disability and the Right to Life in Australia[1]

Phillip French, University of New South Wales
Rosemary Kayess, University of New South Wales

Citation

A shorter version of this article is published as P French and R Kayess, “Deadly Currents Beneath Calm Waters: Persons with Disability and the Right to Life in Australia” in L. Clements and J Read (eds) Disabled People and the Right to Life: The Protection and Violation of Disabled People’s Most Basic Human Rights, OUP, Routledge (forthcoming 2008).

Abstract

Australia has traditionally considered itself to be in the forefront of nations committed to the recognition and respect of human rights, including the right to life of all human beings. Australia has signed and ratified the International Covenant on Civil and Political Rights, which codifies the right to life in international law. Australia has also signed and ratified the Convention on the Rights of the Child, which codifies both the right to life, and a related right to survival and development, for all children and young persons. Additionally, Australia is a wealthy country with relatively well-developed health and social security systems, which include a wide range of specialist services targeted specifically to persons with disability and their families. Together, these factors would appear to provide a strong foundation for securing the rights to life and survival of Australians with disability. However, beneath these calm waters lie deadly currents.

This essay analyses the degree to which Australians with disability effectively enjoy the right to life, as it is understood in international law. We adopt an expansive understanding of the right to life that views the right to life as far more than an obligation on states to merely prevent and punish arbitrary deprivation of life, as important as this is. Instead, we argue that the right to life requires states to pursue a range of positive legal, social and economic measures to ensure that this right is fully realised, especially in a disability context. We argue that the rights to life and survival for persons with disability cannot be effectively secured without some transformation of traditional understandings of these rights, and we examine the potential for the Convention on the Rights of Persons with Disabilities to effect such a transformation.

1. INTRODUCTION

Australia has traditionally considered itself to be in the forefront of nations committed to the recognition and respect of human rights, including the right to life of all human beings.[2] Australia has signed and ratified the International Covenant on Civil and Political Rights (ICCPR), which codifies the right to life in international law.[3] Australia has also signed and ratified the Convention on the Rights of the Child (CRC), which codifies both the right to life, and a related right to survival and development, for all children and young persons.[4] Recently, Australia has actively participated in the development of, and has been among the first to sign, [5] the Convention on the Rights of Persons with Disabilities (CRPD), which again codifies the right to life, and extends the right of survival to situations of risk and humanitarian emergency for both children and adults, specifically referenced to persons with disability. By world standards, Australia also has in place relatively progressive and enabling domestic disability legislation and policy, which affirm the human rights of persons with disability, and promote their participation in society. Additionally, Australia is a wealthy country with relatively well-developed health and social security systems, which include a wide range of specialist services targeted specifically to persons with disability and their families. Together, these factors would appear to provide a strong foundation for securing the rights to life and survival of Australians with disability. However, beneath these calm waters lie deadly currents.

This essay analyses the degree to which Australians with disability effectively enjoy the right to life, as it is understood in international law. We adopt an expansive understanding of the right to life, noting the view of the Human Rights Committee[6] that ‘[t]he expression “inherent right to life” cannot be properly understood in a restrictive manner.’[7] This expansive understanding views the right to life as far more than an obligation on states to merely prevent and punish arbitrary deprivation of life, as important as this is. Instead, we argue that the right to life requires states to pursue a range of positive legal, social and economic measures to ensure that this right is fully realised, especially in a disability context. This approach will no doubt generate debate in relation to the delimitation of the right to life, as a civil and political right, from economic, social and cultural rights.[8] However, it is our contention that this distinction is artificial in a disability context[9] and is reflective of the disablism that infects traditional human rights paradigms. We argue that the rights to life and survival for persons with disability cannot be effectively secured without some transformation of traditional understandings of these rights, and we examine the potential for the CRPD to effect such a transformation. Our analysis uses as its basic framework the elements of the right to life enunciated in the ICCPR, as interpreted by the Human Rights Committee, supplemented, where applicable, by the additional elements of the right introduced by the CRC, and the CRPD. Our overall theoretical approach is based in a social relational understanding of impairment and disability – one that views the primary threats to the lives of persons with impairments as products of a hostile social environment rather than as immutable incidents of individual pathology.[10]

2. THE RIGHT TO LIFE & PERSONS WITH DISABILITY

2.1 The traditional formulation

In the second half of the 20th century the United Nations formulated seven so-called “core” human rights treaties. Three of these treaties are universal in scope,[11] while the remaining four deal thematically with the human rights concerns of specific population groups.[12] None of these treaties deals expressly with the human rights of persons with disability, although the Convention on the Rights of the Child does incorporate both a general obligation[13] and a specific article[14] in relation to children with disability. Nevertheless, because these treaties are of general applicability within their respective purviews, they purport to apply to persons with disability on an equal basis with others. Until recently, this argument has prevailed over attempts within the international community to develop a disability specific human rights convention.[15]

However, in reality, existing human rights treaties have provided little effective protection of the human rights of persons with disability.[16] In part, this is because these treaties, both in their formulation and implementation, have not penetrated to the specific forms of human rights violation persons with disability experience. In this respect, a key limitation has been the traditional jurisprudential distinction and associated institutional segmentation[17] between civil and political rights and economic, social and cultural rights.[18] Latent within the traditional formulation of civil and political rights, of which the right to life is an example, has been an able-bodied right-bearer perceived as capable of life and survival merely under conditions of State non-interference with life and prohibition against arbitrary killing. This traditional ‘negative’[19] formulation of the right to life fails to encompass the positive measures – such as the provision of health and social services (economic and social rights) – that will often be required by persons with disability in order that they may effectively realise their rights to life and survival.

2.2 The Convention on the Rights of Persons with Disabilities

In December 2006, the United Nations adopted the CRPD. The General Assembly mandate under which the CRPD was developed called for proposals for a “comprehensive and integral international convention,”[20] and indeed, these concepts featured in its working title up until the final stages of negotiation.[21] The word ‘comprehensive’ signified an instruction to the drafting committee to take a holistic approach to the formulation of the convention incorporating social development, human rights and non-discrimination elements.[22] This has resulted in a “hybrid” convention, closer in typology to the Convention on the Rights of the Child, than to the earlier non-discrimination-based thematic conventions. The word ‘integral’ signified an intention for the CRPD to become a core constituent of international human rights law, rather than a subsidiary of existing law. Nevertheless, in the debates that gave rise to a mandate to develop the CRPD many delegations, including the Australian Government delegation, stressed that this new Convention was not to develop new human rights, nor was it to derogate from existing human rights. It was simply to elaborate and particularise existing human rights to the circumstances of persons with disability.[23]
Despite these provisos, the CRPD has modified and transformed traditional human rights concepts, including in relation to the right to life, in key respects. The CRPD does, in fact, contain entirely new formulations of human rights,[24] as well as highly disability-specific interpretations of existing human rights, which transform formerly essentially “negative” rights into “positive” State obligations.[26] In these and other respects, the convention blends civil and political rights with economic, social and cultural rights, not only within its overall structure, but also within its individual articles. It appears to abandon, in effect, the distinction between those rights that are subject to immediate versus progressive realisation.[27] The CRPD also integrates so-called third-generation rights and concepts, such the right to development[28] and international co-operation,[29] which are woven extensively through the fabric of its interpretive, substantive and implementation articles. Finally, the CRPD incorporates a number of other concepts and priorities from the field of social development, such as poverty reduction,[30] and an expansive new concept of social protection.[31] Broader discussion of these developments is beyond the scope of this chapter, but they are deliberately noted here for their implications for the way in which the rights to life and survival of persons with disability are now to be interpreted and understood.
The right to life in the CRPD is stated in the following terms:

States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.[32]

The article reflects the substantive transformation of existing rights concepts effected by the CRPD. The first limb of the article seeks to merely “reaffirm” that every human being has an inherent right to life. If left there, the article would arguably confine the operation of the right to its traditional ‘negative’ or ‘\’non-interference’ based formulation. However, the second limb of the article requires States to “take all necessary measures” to ensure the effective enjoyment of the right by persons with disability on an equal basis with others. The second limb transforms the right into a positive State obligation to secure the conditions under which persons with disability may effectively realise their rights to life and survival. Both on its face, and particularly when read in the context of the CRPD as a whole, this formulation to the right to life clearly adverts to action in the economic, social and cultural spheres. In this respect the CRPD solidifies and extends the Human Rights Committee’s formative jurisprudence on the positive dimension of the right to life, and elevates this jurisprudence to level of statute. The CRPD therefore has much greater potential to penetrate to social, economic and culturally based threats to the lives of persons with disability.[33]

Nevertheless, the CPRD is not without problems and limitations, and a number of the most prominent of these relate to the rights to life and survival. The Ad Hoc Committee which developed the text of the CRPD passed over proposals from disabled persons organisations to particularise the rights to life and survival in a way that would prevent (or at least regulate according to the principle of non-discrimination) genetic science that seeks to eliminate impairment-related human diversity, particularly where this science is directed at supporting pre-birth negative selection. It also declined to include proposals to impose an obligation on States to provide positive information and support to the prospective parents of a child with disability to counteract the prejudicial information and stereotypes that typically underpin a decision to terminate pregnancy on the basis of identified impairment.[34] The fact that the CRPD does not engage with these, and other, contemporary eugenic threats to the lives of persons with disability may come to be regarded as its greatest failing.

2.3 A paradigm shift?

The CRPD has been widely interpreted as embodying a ‘paradigm shift’ away from the medical and welfare models of disability to a social model of disability, in which the primary barriers to the enjoyment of human rights by persons with disability are located in the social environment rather than in individual pathology.[35] While it is clear that the social model of disability was very influential in the negotiation process, it is less clear that the final text of the CRPD authentically reflects the social model. One commentator has already argued that the CRPD transcends the social model, entrenching a human development model of disability rights.[36] Paradoxically, the ultimate penetration of the CRPD to the specific forms of human rights violations experienced by persons with disability, particularly in relation to the rights to life and survival, will in large part depend on the extent to which it is able to transcend the social model. In a legal context, the social model operates within a construct of formal equality – its action implication is the removal of barriers to enable equality of opportunity.[37] The social model is not associated theoretically with substantive equality, and therefore does not require the positive measures in the social, economic, and cultural spheres that may be necessary to achieve equality for persons with disability in fact. Indeed, it may even result in the eschewal of such measures as vestiges of the medical and welfare models. In this respect, whatever its transformative possibilities, the social model also has the potential to inadvertently reinforce the disablism of traditional human rights paradigms.

3. THE RIGHT TO LIFE IN AUSTRALIAN LAW

3.1 At common law

Article 6(1) of the ICCPR states that ‘every human being has an inherent right to life.’ These words are repeated in both Article 6 of the CRC and Article 10 of the CRPD. A number of commentators have suggested that the use of the adjective ‘inherent’ and the present tense ‘has’ reflect a belief by the framers in a superordinate natural law basis of the right, or alternatively or additionally, that the right to life formed part of customary international law prior to the formulation of the International Bill of Rights. According to this analysis, the right to life enunciated in Article 6(1) of the ICCPR is merely declaratory in nature.[38]

Australian law does not appear to recognise or incorporate any natural law or customary basis to the right to life. In the only case that appears to have dealt with the issue, the Supreme Court of the Northern Territory declined to strike down an Act of Parliament of the Northern Territory that permitted active voluntary euthanasia.[39] In doing so, the majority rejected the plaintiff’s claim that the Parliament’s exercise of legislative power was constrained by an obligation to protect an inalienable right to life ‘deeply rooted in the Australian democratic system and common law.’ The Court held that in the absence of a constitutionally enshrined Bill of Rights the issue was ‘ethical, moral or political,’ rather than legal, and the Parliament has legislative power to abrogate any ‘fundamental rights, freedoms or immunities’ of its citizens.’[40]

3.2 International law and the Australian federation

Australia is a federation of six states. The Australian Constitution[41] contains a series of ‘enumerated powers,’ which circumscribe the limits of Commonwealth legislative competence. Those powers that are not enumerated remain within the legislative
competence of the States, which is plenary in nature, limited only by what is necessary for the ‘peace, order and good government’ of the individual state. Australia also has three self-governing territories, each of which also has plenary power; however, the source of their self-government is Commonwealth legislation rather than municipal constitutional power.[42] Most international human rights treaties, including the ICCPR, the CRC, and the CRPD, require State signatories to adopt legislative and other measures to give effect to the obligations they enunciate.[43] Section 51 (xxxix) of the Australian Constitution, the so-called ‘external affairs power,’ provides the Commonwealth Government with power to enter into international obligations and to pass domestic legislation to give effect to those obligations. It permits the Commonwealth to legislate in areas outside its other enumerated powers, and traditionally the province of State legislative competence, where it has entered into a relevant international obligation.

International law is binding upon Australia in its relationship with the community of nations. However, this does not mean that an international obligation entered into by the Australian Government, or recognised in customary international law, automatically becomes part of Australian municipal law. For that to occur, with very limited exceptions, Australian parliaments[44] must legislate to specifically incorporate the obligation.[45] In spite of its obligation to do so, Australia has not comprehensively enacted into municipal ‘hard law’ those international human rights treaties to which it is signatory.[46] Australia does not have a national bill of rights, and at the Commonwealth level, there remains significant political resistance to such a bill. As one senior judicial commentator has recently noted:

Putting it bluntly, we have so far largely ignored, or rejected, the relevance for our own legal system of the great change that came about in the protection of basic rights, following the Second World War and the creation of the United Nations.[47]

Particular human rights instruments are, however, attached as schedules to the Human Rights and Equal Opportunity Commission Act 1986 (Cth); an Act which constitutes the (Australian) Human Rights and Equal Opportunity Commission. This includes the ICCPR, the CRC, and the Declaration on the Rights of Mentally Retarded Persons (1971) and the Declaration on the Rights of the Disabled (1975). In the absence of direct incorporation of a specific obligation by other means, these obligations have an essentially ‘soft law,’ or policy status in municipal Australian law. The Human Rights and Equal Opportunity Commission has conciliation, public education and policy functions, but no determinative powers. It may receive a complaint in relation to breach of an international instrument incorporated as a schedule to its constituting Act alleged against a Commonwealth agency (but not against a State or Territory or non-State actor), but may only respond to it within its limited functions. If it is not capable of conciliation, apart from taking up the matter up in its general policy and education functions, the Commission’s only alternative is, through the Attorney-General, to refer the matter to Parliament for attention.[48]

Due to its federal character, and in the absence of any unifying national bill of rights, the task of assessing Australia’s compliance with its international obligations with respect to the rights to life and survival is a complex one, requiring examination of laws, policies and institutional arrangements that do not necessarily have a human rights focus, and which may be situated in different tiers of government, resulting in significant differences of approach and outcome across the country.

3.3 Australian disability and human rights law

The Australian government enacted disability services legislation in 1986[49] and non-discrimination legislation in the area of disability in 1992,[50] obviously well in advance of the CRPD. By world standards both are progressive, even visionary, pieces of legislation that assert the dignity, worth, and human rights of persons with disability. This legislation underpins Australia’s national action plan on disability, the Commonwealth Disability Strategy,[51] and the Disability Services Act 1986 also provides the underlying policy platform of the national specialist service delivery framework for persons with disability - the Commonwealth, State and Territory Disability Agreement.[52] Although this legislation does not deal directly with the right to life, it does bear upon the services and supports that are essential for persons with disability to effectively enjoy these rights, and the Disability Services Act, 1986 (Cth) places major emphasis on the right to personal development.

The Disability Services Act 1986 (Cth) applies to generic and specialist services utilised by persons with disability and is underpinned by a set of principles and objectives that effectively operate as a charter of service user rights.[53] In the specialist service area these principles and objectives have been translated into a set of standards according to which services are regulated.[54] Services that fail to meet the relevant standards are ineligible for Commonwealth funding. However, these standards are not directly enforceable by persons with disability or their associates. They also operate in relation to discretionary and budget-capped programs, which are historically grossly under-funded, and subject to intense unmet demand. Many disability services are institutionally based and of poor quality, yet they have proved very resistant to change. In part, this is because government as both the principal contributor of funding and regulator of these services is subject to a conflict of interest that operates as a disincentive to the enforcement of standards (enforcement of standards may produce greater cost for government). Consequently, in spite of its aspirations, Australian disability services legislation has proved a relatively weak mechanism for securing the human rights of persons with disability, including some of the essential foundations for the realisation of the rights to life and survival.

The Disability Discrimination Act 1992 (Cth) prohibits discrimination on the ground of disability in enumerated areas, including in the provision of goods and services, which also have direct bearing on the rights to life and survival. The legislation has a number of major strengths, including a very broad definition of disability,[55] application to State and non-State entities, structural as well as individual complaint-based mechanisms to eliminate discrimination[56] and it is enforceable by persons with disability and their associates.[57] It is, however, framed within a formal equality model and focuses only on the elimination of unreasonable barriers to the participation of persons with disability in Australian society. Consequently, it has failed to penetrate to some specific human rights violations impacting on the rights of life and survival that can only be effectively addressed by positive measures designed to achieve substantial equality. For example, the legislation cannot compel government to provide specialist health or social services necessary for the survival of persons with disability, and it has very limited capacity to ensure that specialist services are delivered at a standard that would be acceptable to non-disabled persons.

4. THE DIMENSIONS OF THE RIGHT TO LIFE

4.1 Duty to prevent war

The Human Rights Committee has observed in its commentary on the right to life that “States have the supreme duty to prevent wars ...” arguing that “[e]very effort they make to avert the danger of war ... and to strengthen international peace and security would constitute the most important condition and guarantee for the safeguarding of the right to life.”[58] War has always been, and remains, one of the greatest causes of impairment and disability[59] and loss of life of persons with disability.[60] Multilateralism, particularly through the instrumentality of the United Nations, has been the principal means by which warfare has been contained and peace promoted in the period since the Second World War. It is therefore an essential foundation for the protection of life at the international level. Australia’s traditional commitment to multilateralism has been fractured by its recent participation in the United States led wars in Afghanistan and Iraq, contrary to the authority of the United Nations, [61] and its increasingly defiant and combative response to external scrutiny of its human rights record by United Nations experts, particularly in the areas of indigenous and refugee rights. The undermining of multilateralism and the authority of the United Nations by the Australian government and others has diminished the capacity of the international community to prevent and contain lethal warfare, with the inevitable devastating consequences of this for the protection of life.

4.2 The Death Penalty

The death penalty is a critical issue for persons with disability internationally, given the number who become entangled in the criminal justice system, often accused and convicted of the most serious crimes.[62] Article 6 of the ICCPR does not prevent States from maintaining the death penalty. However, it does limit the circumstances in which the death penalty may be applied to the most serious crimes, and probably also prevents the reintroduction of the death penalty following is abolition.[63] Article 37 of the CRC goes further, prohibiting the death penalty being carried out on children. Unfortunately, there was insufficient support in the Ad Hoc Committee for an equivalent provision to be included in the CRPD with respect to persons with disability, despite concerted advocacy for such a provision by Australian disabled persons organisations.

The Commonwealth and all Australian States have abolished the death penalty.[64] Australia has also acceded to the Second Optional Protocol to the ICCPR, which commits Australia to the abolition of the death penalty.[65] Historically, Australia has been prepared to take a strong stand against the death penalty internationally. For example, Australia annually co-sponsors a resolution of the United Nations Human Rights Commission that calls for all nations to abolish the death penalty.[66] However, most recently, Australia’s advocacy for the abolition of the death penalty has become somewhat equivocal, and its domestic adherence to international law concerning the death penalty has also been compromised. While Australia has opposed the death penalty being carried out on Australian citizens for drug-related offences by both the Singapore and Indonesian governments,[67] contrary to its international obligations[68] it has engaged in mutual assistance with Indonesian law enforcement agencies in bringing drug trafficking charges against Australian citizens, which if proven, attract the death penalty.[69] Additionally, the Australian Prime Minister, Foreign Minister, and Leader of the Opposition have in various statements each welcomed the imposition of the death penalty on Indonesian terrorists convicted of involvement in terrorist attacks in Bali that killed Australian citizens, and the Iraqi Court’s imposition of the death penalty on Sadam Hussein.[70] This has exposed the Australia to claims of hypocrisy in its stance on the death penalty, and severely undermined its capacity to exercise leadership on the issue within the Asia Pacific region, where fifteen States retain the death penalty, and where more than 80% of known death-penalty executions occur each year.[71]

4.3 Prohibition on intentional killing

Article 6(1) of the ICCPR operates essentially as a restraint on State interference with life, and as an obligation on States to prohibit homicide. This latter aspect of the right to life is incorporated into Australian criminal law. Under the Australian federal system, the criminal law is principally the responsibility of State and Territory governments, and consequently provisions vary somewhat across jurisdictions. [72] Intentional killing of another person attracts the strongest sanctions in Australian criminal law. A person who commits homicide may be sentenced to life imprisonment,[73] while a person who commits the lesser crime of manslaughter may also be sentenced to imprisonment for life in Queensland, South Australia and the Northern Territory and up to 26 years in other jurisdictions.[74]

Criminal penalties are generally not mandatory,[75] and the sentencing court has discretion to take into account matters that may aggravate or mitigate the offender’s culpability. In New South Wales, this discretion is constrained by statute. A sentencing officer may take into account as a matter aggravating the culpability of the offender, evidence that the crime was motivated by hatred for, or prejudice against, a group of people to which the offender believed the victim belonged, which includes persons living with a particular impairment or disability.[76]

The sentencing court may also take into account as an aggravating factor any special vulnerability of the victim, such as impairment and disability,[77] and any evidence that the offender abused a position of trust or authority in relation to the victim. This would be the case if, for example, the offender was responsible for the care and support of a victim living with impairment or disability.[78] In some other jurisdictions, the sentencing court may take into account as a matter aggravating the offender’s culpability any relevant personal circumstances of the victim. [79] This might also potentially include a victim’s impairment and disability. To some extent these represent positive measures to deter crimes against persons with disability, including those that threaten life. However, we are not aware of any reported case where these principles have been applied with their intended effect in relation to the intentional killing of a person with disability.[80]

The case of Jason Dawes

In 2003, Daniela Dawes suffocated her 10-year old autistic son, Jason, by holding her hand over his nose and mouth until he died. Ms Dawes then attempted suicide, but was discovered and revived. She was initially charged with murder, but the charge was subsequently reduced to manslaughter when the prosecution accepted that she was subject to severe depression at the time of the offence.[81] Ms Dawes entered a plea of guilty and was sentenced to a good behaviour bond for a period of 5 years.[82] There was a public outcry about the leniency of the sentence.[83] Although it had failed to seek a custodial sentence at first instance, the prosecution appealed, arguing that the seriousness of the offence required the imposition of a custodial sentence.

This was a complex and genuinely tragic case. As the Court of Criminal Appeal observed:[84]

This was not merely a case of a mother killing her severely disabled son, but of a mother suffering from major depression occasioned not only by the need to care for her son and the devotion she gave to that task, but overwhelmed by a number of other stressors all impacting upon her at about the same time ...

However, there can be little doubt that it was the perceived burden of caring for Jason, and the direct and indirect consequences of his impairment and disability on Ms Dawes, that resulted in the leniency of the sentence imposed. At first instance, the trial judge constructed Jason as suffering, dependent and incapable and as constituting an intolerable and unimaginable burden on Ms Dawes:

Jason was a profoundly handicapped autistic child suffering from ... [Jason’s autistic characteristics are then interrogated in detail]

The practical reality is that the care in terms of daily responsibility to feed, toilet, bathe, educate, entertain and love fell to his mother, this offender. There is no doubt that this was an unrelenting, tiring, frustrating and never-ending task that very few people have ever experienced or are even capable of fully comprehending.[85]

Jason was portrayed as a principal cause of Ms Dawes’ depression, and of other stressors to which Ms Dawes was subject, such as his father’s emotional breakdown, suicide ideation, and resort to alcohol (which in turn resulted in Ms Dawes’ being subject to domestic violence). Jason was also portrayed as the cause of the breakdown of his parents’ marriage and his parents’ loss of community ties as a result of their moving from a country town to the city in an effort to obtain services for him. The appellate Court specifically approved this construction of Jason by the trial judge.[86]

Both at first instance and on appeal, the courts appear to focus on Jason’s victim characteristics not as matters aggravating the seriousness of the offence, even though the relevant provisions are formally adverted to,[87] but as matters mitigating its seriousness.[88] Neither court does so in any explicit way, but their detailed interrogation of Jason’s impairment and disability-related characteristics and behaviour, and the impact of this on Ms Dawes, her husband and daughter, can lead to no other conclusion. This discussion does not resolve into any definitive statement about Jason’s value or humanness, but its effect is to construct him as demonic ‘other,’ and by implication, to offer a degree of excuse for his killing. This is particularly evident from the District Court’s specific reliance on evidence such as the following passage from Ms Dawes’ husband’s statement:

He was getting older. He had started to grow pubic hair. We began to ask ourselves how we were going to shave his face, and we were concerned that he may start masturbating in public. Daniela (sic) and I were frightened, concerned and stressed by Jason getting older and the things that went along with this.[89]

In Australia, the ‘principles’ or ‘purposes’ of sentencing vary in detail across jurisdictions, but are generally directed to: punishment of the offender; general deterrence of members of the community from committing similar crimes; specific deterrence of the offender from committing crime; denunciation of the conduct of the offender; and, recognition of the harm done to the victim and the community.[90] In the Dawes case, the District Court at first instance determined that general and specific deterrence ought to be given ‘very little weight.’ It also determined that:

[i]n all the circumstances of this case, [Ms Dawes’] moral culpability was very low. Accordingly, the need to denounce her conduct and make her accountable for her actions does not have the significance it might otherwise have had.[91]

The explicit factors relied upon by the Court in reaching these determinations were Ms Dawes’ mental illness and consequent diminished responsibility for the offence, and her frank admissions and early plea of guilty.[92] However, implicitly, Jason’s victim characteristics also appear to have also strongly influenced the Court’s approach. These determinations were criticised by the Court of Criminal Appeal for their failure to give appropriate weight to the objective seriousness of the offence, the ‘courts’ responsibility to uphold the sanctity of human life,’ to ‘denounc[e] the conduct of the offender, mak[e] the offender accountable for her actions and ensur[e] adequate punishment for the offence.’ The appeal court concluded that the judge at first instance allowed these factors to be outweighed by the [respondent’s] ‘strong subjective case,’ and thus fell into error. However, the appeal was, in effect, unsuccessful.[93] While the majority held that the trial judge had erred in not imposing a custodial sentence, it nevertheless exercised its discretion to dismiss the appeal having regard to the principle of double jeopardy, the Crown’s failure to seek a custodial sentence at first instance, and Ms Dawes’ progress in rehabilitation since the sentence was first imposed.[94]

The case of Matthew Sutton

In another recent case, the parents of Matthew Sutton, a 28-year-old man with severe multiple impairments, pleaded guilty to his manslaughter,[95] after initially reporting to police that they had found him dead in his bed. They each were sentenced to a good behaviour bond for a period of 5 years. [96] Matthew’s parents submitted to the Court that Matthew’s murder was precipitated by the necessity of surgery to correct chronic ear pain and prevent meningitis. This would have resulted in his total hearing loss for a period of at least three months, and a significant risk of permanent hearing loss. Faced with this risk, Matthew’s parents claim to have formed the view that he would not have had ‘quality of life,’ and that he should be spared further ‘suffering’ by euthanasia.[97]

As it did with Jason in the Dawes case, the court undertakes an extensive interrogation of the nature and degree of Matthew’s impairment and disability, and the perceived impact of this on his parents. It also reviews the abuse and neglect Matthew experienced in supported accommodation. Matthew is constructed as a suffering, living tragedy, as other than human, and as a source of profound grief, shame and burden to his parents. The court explicitly approves of the following passage of expert testimony submitted on behalf of the parents by a treating psychiatrist:

This poor woman has suffered the terrible and indescribable horror of having a son who had the most serious deprivation of senses imaginable and then having the remaining senses having to be removed. She and her husband fully realised the horror this meant for their son with a mental age of 3 years. Both she and her husband have been stressed to the limit ... It seems that she was of the opinion that they were not acting to kill their son but the primary aim was to stop the suffering that he had had at the hands of fate, genetics and the NSW government instrumentalities.[98]

Matthew is portrayed as the cause of both his parents’ depressive illnesses, stress disorders and suicide ideation, their relationship difficulties, their social withdrawal, and his father’s alcoholism. Matthew’s victim characteristics, and the position of trust and authority occupied by his parents, are not dealt with as matters aggravating the offence. Again, the Court appears to treat these as factors mitigating, and as even excusing, the offence.

In its discussion of how the statutory sentencing principles are to be applied in the case, the Supreme Court[99] concluded in relation to the principle of general deterrence:

Nobody in the community suffering under the burden that weighed on the offenders is likely to give consideration to sentences imposed on others and thereby be deterred from committing similar offences.[100]

Predictably, in response to the Supreme Court’s decision, Australia’s leading euthanasia advocate immediately contradicted this view, claiming that the case demonstrated that ‘not all taking of human life is bad,’ and that the case would encourage others to make similar ‘courageous’ decisions.[101] He and others claimed the case should never have been prosecuted.[102]

In relation to the role of the criminal justice system in denouncing the conduct of the offenders, the Court concluded:

[36] ... Their criminal conduct may be summarised thus. The law entrusted them with the responsibility to care for a severely disabled and vulnerable person. ... the offenders decided that the only thing they could do was protect Matthew from a future life without sensation by bringing his life to an end. They decided to breach their trust because they loved him and could not bear to contemplate his suffering any more.
...
[38] It seems to me that nothing that the Court can do by way of sentence can add to the offenders’ suffering. The need for further punishment is spent.[103]

In light of these and other similar passages in its judgement, it is difficult to resist the impression that the Court certainly empathised with, and even implicitly approved, of Mr and Mrs Sutton’s conduct.

The Dawes and Sutton cases would thus appear to provide strong evidence of a significant disparity between even the limited text of the criminal law in relation to prohibition of homicide and the reality of its application with respect to persons with disability in Australia. The sentencing outcomes in these cases are not reflective of the inherent dignity and value of Jason and Matthew’s lives, or of their equality with others. The courts in both cases are obviously deeply repelled by Jason and Matthew’s impairment and disability, acquiesce or collude in their construction as other than human, and appear to strongly identify with those responsible for depriving them of life. Implicitly, the courts appear to consider Jason and Matthew’s impairment and disability a powerful excuse, if not complete justification, for their homicide. In Sutton particularly, the Supreme Court implicitly countenances the view that Matthew was better off dead, and even the view that Matthew somehow himself sought death as a ‘reward’ for his suffering. This is evident from the following passage of Ms Sutton’s statement of evidence cited with approval by the court:

In the past we had been unable to protect him from abuse both from others and himself. How could we subject our precious son to what was ahead. He had been through so much, and with a courage and determination most could only hope to achieve. He was such a brave soul. At this time in his life he deserved a reward, not what lay ahead of him. So with all the love we had for Matti, we borrowed from his strength and courage and released him from any more pain and suffering, he had had enough. We owed him nothing less.[104] (emphasis added)

Although New South Wales has enacted laws to specifically deter crimes against persons with disability, and by persons in position of trust and authority, the Dawes and Sutton cases suggest that the courts are incapable or unwilling to give effect to those laws. Another remarkable feature of both cases is the acceptance by the prosecution of the offenders’ pleas to the lesser offence of manslaughter, instead of murder, and the Courts’ failure to reject pleas to the lesser offence. In both cases the manslaughter plea was founded on the statutory equivalent of the doctrine of diminished responsibility and formally relied on the diagnosis of mood disorder in the offenders. However, there also appears to be a subtle and complex interaction between the victims’ impairment and disability and the doctrine of diminished responsibility. At one level, both cases appear to be activated by the latent belief that the ‘burden’ and ‘suffering’ caused by a child with disability ipso facto diminishes the culpability of parents for that child’s murder.

4.4 Threats from security forces

In its general comment on the right to life, the Human Rights Committee has observed that States should take measures to prevent arbitrary killing by their own security forces, noting that deprivation of life by authorities of the State is a matter of the utmost gravity.[105] The meaning of the term “arbitrary” in this context would appear to encompass circumstances where the deprivation of life is caused by, or results from, discrimination on the ground of disability.[106]

In Australia, there has been a long series of incidents in which persons with mental illness have been fatally shot by police intervening in situations where the person is presenting in a disorientated state, which typically involve actual or perceived threats of self-harm or harm to others.[107] Subsequent investigations by coronial and other authorities have been critical of the failure of police to identify the person as subject to a mental illness, police lack of understanding of mental illness, and the lack of specialist training provided to police in the management of critical incidents involving persons with mental illness. The counterproductive ‘command and enforce’ intervention tactics typically employed by police (which result in an escalation, rather than de-escalation of the incident), and the lack of interagency co-operation between mental health services and police have also been heavily criticised. In these circumstances, it is strongly arguable that these fatalities are the result of direct[108] or indirect[109] discrimination on the ground of disability, and thus fall within the ambit of arbitrary killing by security services prohibited under Article 6 of the ICCPR.

4.5 Disappearance of persons

The Human Rights Committee has also called upon States to take specific and effective measures to prevent the disappearance of individuals, which it notes ‘has become all too frequent and leads too often to arbitrary deprivation of life.’[110] Australia has not yet signed or ratified the International Convention for the Protection of All Persons from Enforced Disappearance, [111] which opened for signature on 6 February 2007, and is yet to give any indication of its intention in this respect. The Convention defines ‘enforced disappearance’ as:

the arrest, detention, abduction or any other form of deprivation of liberty by agents of the State or by persons or groups of persons acting with the authorization, support or acquiescence of the State, followed by a refusal to acknowledge the deprivation of liberty or by concealment of the fate or whereabouts of the disappeared person, which place such a person outside the protection of the law.[112]

The Australian immigration system is notoriously trouble-prone and impacts in particularly harsh ways on persons with disability. There have been a number of recent instances of Australian citizens and residents with disability being inadvertently ensnared in this regime resulting in their unlawful detention in Australian immigration detention centres, or in their unlawful deportation.[113] In each case the person has been unable to effectively communicate their citizenship or residency status to immigration officials due to mental illness, and immigration officers have failed to undertake appropriate investigation to confirm their status. Immigration officials have failed to identify or understand the impact of the person’s mental illness, and have allowed the characteristics of the person’s mental illness to adversely influence their perception of the lawfulness of the person’s immigration status.[114] In a number of cases, it is strongly arguable that the circumstances of the person’s detention or deportation have amounted to their enforced disappearance, at least so far as their families are concerned, and presented critical risks to life.[115] There have also been numerous other cases in which asylum seekers with serious mental illness have been detained for long periods of time in Australian immigration centres, or deported without appropriate support services being available at the point of repatriation. Many of these cases also amount to the person’s forced disappearance, and have resulted in critical risks to life from self-harm and destitution.[116]

The incidence of persons with disability, particularly persons with mental illness, in populations of homeless persons in Australia is also very high, perhaps as high as seventy-five percent of the total population.[117] Many homeless persons have lost contact with, or have been rejected by their relationship networks due to impairment and disability, and have, in effect, ‘disappeared’ into homelessness. Homeless persons with disability are particularly vulnerable to violence, disease, and other threats to life, and are often unable to gain access to crisis accommodation services due to discrimination against them on the ground of disability,[118] which exacerbates these risks.

4.6 Abortion

Article 6 of the ICCPR does not expressly determine the point at which the protection of life begins. While some experts consider the issue unresolved, the travaux preparatoires of the ICCPR suggests that life at the point of conception is not protected, as two specific proposals to make such protection express were defeated.[119] The Universal Declaration of Human Rights also appears to make it clear that human rights vest at the point of birth when it states that: “all human beings are born free and equal ... “ (emphasis added).[120] Additionally, the Human Rights Committee has recognised that Article 6 does not prohibit abortion.[121] Nevertheless, some commentators argue that human rights, including the right to life, begin to vest in the foetus at the point at which it is able to survive independently of its mother, even if this requires some form of life support, and even if these rights still need to be reconciled with the mother’s rights to life and privacy.[122]

The preamble to the CRC characterises the pre-birth right to life of a child, to the extent that this exists, as a right of survival, in its observation that “the child, by reason of his physical and mental immaturity, needs special safeguards and care, including appropriate legal protection, before as well as after birth” (emphasis added).[123] Read in conjunction with Article 6(2) of the CRC this would appear to repose in States a positive obligation to promote a child’s capacity to survive until, and thrive after, birth by ensuring the availability of nutrition, health services and other support directed to the pregnant woman. [124]

To a significant extent Australian law reflects the tensions and ambiguity apparent in international law in this area. With the exception of the Australian Capital Territory, where it has been removed from criminal statutes,[125] pre-birth termination of pregnancy is principally dealt with in the criminal laws of Australian States and Territories. The law varies considerably across jurisdictions. Although the provisions are different, abortion is, in effect, unlawful in Queensland, New South Wales, Victoria and Tasmania unless the procedure is necessary to protect the woman from serious threats to her physical and mental health.[126] In South Australia and the Northern Territory medical termination of pregnancy is lawful where is it necessary to protect the physical or mental health of the pregnant woman or where there is a substantial risk that the child, if born, “would suffer such physical or mental abnormalities as to be seriously handicapped.”[127] In Western Australia abortion in unlawful under the criminal law unless it is justified on grounds set out in that State’s Health Act, 1911.[128] The Health Act provides that abortion up to 20 weeks’ gestation is available provided the woman concerned has given informed consent. Abortion may also be justified on the basis that the woman concerned will suffer serious personal, family or social consequences, or serious danger to her physical or mental health, if the abortion is not performed.[129] After 20 weeks’ gestation, abortion may only be performed where the mother or the unborn child (emphasis added) has a severe medical condition that in the clinical judgement of two medical practitioners appointed by the Minister for Health justifies the procedure.[130]

There is an important conceptual and legal distinction between the abortion laws of South Australia, the Northern Territory and Western Australia and those of other jurisdictions, in that the latter only refer to the woman’s characteristics, whereas the former also refer to the impairment of the foetus as an entirely independent ground for termination. Foetal impairment, by itself, is not a legal ground for abortion in most Australian States and Territories. In this respect the abortion laws of South Australia, the Northern Territory and Western Australian are explicitly discriminatory on the basis of impairment, and eugenic.[131] As a practical matter, however, the distinction is less important, because in other jurisdictions foetal impairment is typically characterised as an acute stressor permitting termination of pregnancy on the ground of the woman’s adverse physical or mental health.

While the law in some instances appears restrictive, the actual practice of abortion in Australia is quite permissive. This has been facilitated by Australian courts’ expansive interpretation of the maternal ‘serious risk to physical and mental health’ exception or justification for abortion, and a general disinclination of prosecuting and legislative bodies to agitate the issue. It is estimated that approximately 100,000 abortions are performed each year in Australia – which is more than 25% of total pregnancies.[132] However, formal research suggests that only 2% of terminations are for foetal impairment, the majority being for social or economic reasons.[133] This appears somewhat counterintuitive, and probably reflects an under attribution of abortions performed following detection of foetal impairment. Pre-natal screening in early pregnancy is virtually universal for Australian women. Where foetal impairment is detected or suspected, the vast majority of parents opt for termination of pregnancy. Genetic counselling services available to parents when foetal impairment is suspected may purport to be neutral, but in reality, they overwhelmingly condition parents to accept termination as the appropriate response. Research suggests that the Australian community also overwhelmingly supports, and indeed, expects women to make such decisions, even if foetal impairment is only ‘likely,’ rather than certain.[134] Parents who decide not to terminate pregnancy where foetal impairment is detected face social and medical pressures, and even guilt, for bringing into the world a child that “suffers.”[135] They also face significant future hardship, given that current social support systems for persons with disability and their families are frequently seriously under-resourced and of poor quality.

With the exception of New South Wales, the criminal laws of most Australian States and Territories also incorporate the offence of ‘child destruction.’ In general, these provisions are taken to apply to late-term abortions, and they also vary in detail. In Victoria and South Australia it is a crime to act with intent to destroy a ‘child capable of being born alive’ before it has an existence independent of its mother. For the purpose of this offence, evidence that a woman had been pregnant for a period of 28 weeks or more is prima facie proof that the child was capable of being born alive.[136] In Western Australia, the Northern Territory, Queensland and the Australian Capital Territory it is a criminal offence to prevent a child from being born alive at the time the woman is about to be delivered of the child.[137] In Tasmania it is an offence to cause the death of a ‘child who has not become a human being’ unless the death is caused by means employed in good faith for the preservation of its mother’s life.[138] There is little or no case law interpreting any of these provisions, and apparently no prosecutions have occurred.

In Australia, there is a significant correlation between late-term abortion and the identification of foetal impairment. In spite of the apparently restrictive nature of the law, medical practitioners and the public appear to overwhelmingly support the option of late-term termination in these circumstances.[139] This has led to the perverse contemporary reality that it is relatively commonplace for premature babies to be born and to survive at an earlier gestation time than the point at which termination remains permissible, or at least is practised, on the basis of foetal impairment.

In 2000 a woman at 31 weeks’ gestation was referred to a Victorian teaching hospital because she had requested termination of her pregnancy. The child she was carrying had recently been diagnosed with so-called ‘dwarfism.’ The woman is reported to have been in an acutely suicidal state as a result of this diagnosis, and to have rejected all other management options, including adoption. The hospital’s medical administrator approved the termination of her pregnancy. At 32 weeks’ gestation, potassium chloride was injected into the child, killing it, and labour was then induced. Some months later the matter was referred to the Victorian Police, which investigated, but concluded that the actions of the medical staff involved were lawful in the circumstances; the Victorian Coroner, who ultimately declined to investigate;[140] and, to the Victorian Medical Practitioners Board,[141] which also failed to conduct an inquiry. [142]

The only factors underpinning the police decision not to prosecute were the child’s impairment and disability, and the threat that this was perceived (quite irrationally) to represent to the mother’s mental health. The police concluded that these factors made the abortion lawful on maternal health grounds. In spite of the applicable law, the child’s undoubted ability to be born alive and to survive independently of its mother were disregarded by attending medical practitioners and law enforcement agencies. It is unimaginable that a late-term abortion of this nature would be performed in relation to a child without disability, at least not in the absence of serious professional disciplinary and criminal sanctions. There could hardly be a more extreme disparity between the text and the reality of the law as it applies to the protection of the lives of persons with disability. To the woman and her physicians, the child was a demonic ‘other,’ the killing of whom was justifiable both on ethical and legal grounds, and this view was ultimately supported, or acquiesced in, by the criminal justice system and the medical profession’s professional standards body.

4.7 ‘Wrongful life’

In two recent test cases, there has been an attempt to persuade Australian Courts to recognise the tort of ‘wrongful life’ in Australian law.[143] The High Court of Australia (Australia’s highest appeal court) has now finally rejected this attempt. [144] Alexia Harriton and Keeden Waller brought the claims against their respective doctors in relation to unrelated incidents. They claimed that their doctors were negligent in failing to advise their parents of the risk that they would be born with severe disability, and that had their parents been so warned, their parents would have opted to terminate pregnancy. As a result of this negligence, Alexia and Keeden claimed to have been born into a ‘wrongful life’ for which they ought to be compensated. The majority of the High Court held that that the claims must fail because no ‘damage’ capable of being recognised by the law could be shown in either case. It found that it is not possible to make a comparison between a life with disability and non-existence, and that in the absence of such a comparator, the compensatory principles of the tort of negligence could not be applied.[145] Although the Court’s decision is principally based on the failure of the plaintiffs to make out the ‘damage’ element in the tort of negligence, the Court also held that it is contrary to public policy to devalue the lives of persons with disability as ‘wrongful:’

[258]... it is odious and repugnant to devalue the life of a disabled person by suggesting that such a person would have been better off not to have been born into a life with disabilities. [259] In the eyes of the common law of Australia all human beings are valuable in, and to, our community, irrespective of any disability or perceived imperfection... Alexia Harriton’s disabilities ... are only one dimension of her humanity ...[146]

To this extent the outcome of these cases is affirmative of the right to life of persons with disability. However, ultimately these decisions are very limited in scope, and are at odds with another decision of the Court that has recognised the claim of ‘wrongful birth’ in Australian tort law.[147] The decision also sits uneasily with decisions of other Australian Courts, and apparently approved of by the High Court, which have utilised a comparison between existence and non-existence for the purposes of determining if life-sustaining treatments ought to be withdrawn from persons with disability.[148]

4.8 Euthanasia

Article 6 of the ICCPR also does not contain any express provision in relation to euthanasia; nor does any other human rights instrument, including the CRPD. Nevertheless, the right to life has traditionally been interpreted as requiring States to refrain from non-voluntary euthanasia programs such those conducted by the German National Socialists in the lead-up to and during the Second World War, and as imposing an obligation on States to prevent private acts of non-voluntary euthanasia.[149] However, these obligations appear to have little application to euthanasia in its contemporary presentation.[150]

Many commentators have pointed to the risks to the lives of persons with disability presented by the contemporary advocacy for euthanasia.[151] Australia has produced some of the most strident advocates of euthanasia of persons with disability.[152] In 1995, Australia became the first country in the world to enact legislation permitting voluntary active euthanasia when the Parliament of the Northern Territory passed the Rights of the Terminally Ill Act 1995 (NT). This Act was extremely controversial and very short-lived. In response to its enactment, the Commonwealth Government legislated to over-ride the powers of the Australian territories to make such laws, and consequently, the Act was overturned.[153] While suicide has been decriminalised in all jurisdictions in Australia, it remains an offence to assist a person to commit suicide. Along with the general laws of homicide, this means that under Australian law euthanasia is a criminal offence. Nevertheless, euthanasia is, in reality, very widely practiced[154] and approved of[155] in Australian health care settings, especially in the area of so-called end of life decision-making.

Paradoxically, the Northern Territory law, and the Commonwealth legislation that negatived it, only ever concerned active voluntary euthanasia – the taking of active steps to terminate the life of a person who has specifically requested this. In fact, the most common forms of euthanasia practiced in Australian health care settings are active and passive non-voluntary euthanasia. This involves withholding or withdrawal of life-sustaining treatments from, or the taking of active steps to hasten death of persons who, at law, and for all practical purposes, do not have the capacity to consent to these acts or omissions. The Commonwealth legislation specifically excepts this conduct from the prohibition on active voluntary euthanasia. Such decision-making is to some extent regulated by Australian Guardianship and Administration Tribunals, which may appoint a close associate of the person or a public authority to make these decisions on the person’s behalf,[156] and by State and Territory Supreme Courts in their parens patriae jurisdiction,[157] which may also consent to such decisions, or appoint an associate of the person to do so. However, most decisions of this nature are not scrutinised by the law, and are instead determined in private between the treating physician and the person’s family.

Although these cases are most likely to involve persons at the end-stage of terminal illnesses, nor at the end of their natural lives, persons with disability who are neither terminally ill or at the end of their lives are also vulnerable to such treatment in Australian health care settings. In such cases, the person with disability is typically constructed as having ‘no quality of life,’ and as ‘being better off dead,’ and health care professionals, other service providers, and family may conspire to bring about the person’s death during a period of health vulnerability. However, this practice is rarely formally acknowledged, and it is difficult to obtain objective evidence of it. One exception to this is the 2005 report by the New South Wales Ombudsman on his annual review of the deaths of persons with disability in care. In this report, the Ombudsman notes a number of instances where ‘not for cardiopulmonary resuscitation’ (No-CPR) orders and other treatment limitation decisions were placed on a person with disability’s file without discussion with the person, the person’s family, and without any documented reason. The report suggests that poor ‘quality of life,’ as perceived by medical professionals, was a key factor driving the decision to limit treatment.[158] In a number of the cases reported, the person’s impairment and disability is simply equated with poor quality of life, and treatable unrelated health conditions are conflated with impairment. In Australia, at common law, a health care provider has no obligation to offer or provide life-sustaining measures that they consider futile. However, in the case of persons with disability, the assessment of what treatment is futile is sometimes heavily influenced by factors extraneous to the specific condition being treated. In the cases reported by the Ombudsman, treatment sometimes appears to have been considered futile only because it would not ameliorate or cure the individual’s impairment, or overcome the social consequences of this, such as being forced to live in a nursing home or boarding house.[159]

Australian law purports to provide stringent safeguards against abuse of power by substitute decision-makers formally entrusted with making end-of-life decisions on behalf of persons unable to make such decisions themselves. In this respect, key safeguards are the general requirement that such decisions must be made in the best interests of the person or to promote their health and wellbeing, and the supervision of such decision-makers by specialist tribunals.[160] In reality, the operation of these safeguards is not unproblematic. The functioning of specialist tribunals heavily privileges the medical model. Assessments of a person’s quality of life are typically only viewed through a narrow medical lense. In tribunal hearings medical evidence and opinion typically trump all other evidence and opinion. This is also true for Courts hearing similar matters in parens patriae jurisdictions. Additionally, in many cases, tribunal panels will be constituted so as to include medical experts. Statutory terms such as ‘medical’ and ‘palliative care’ are interpreted in light of contemporary medical practice, and in this respect are essentially elastic and entirely deferential to the medical model.[161] There are few, if any, independent legal norms to operate as constraints on medical power.[162]

Under Australian law, the provision of nutrition and hydration by technological means, and potentially even by means of personal assistance,[163] is considered medical treatment.[164] Its characterisation as medical treatment means that the person affected, or in the case of a person unable to make healthcare decisions, a Court or someone appointed by a court or Guardianship and Administration Tribunal to make such decisions on their behalf, may refuse this treatment or request its withdrawal. Failure to comply with such a request amounts to an assault of the person, and may attract civil and criminal penalties.[165] In substance, decisions to withdraw nutrition and hydration, and other forms of life-sustaining treatment, are passive euthanasia.

Article 25 (Health), sub-paragraph (f) of the CRPD provides that States parties have a particular obligation to ‘prevent discriminatory denial of health care or health services or food or fluids on the basis of disability.” This provision was added to the draft Convention text in the final stages of negotiations, although the issues it encompasses had been the subject of debate both in relation to the draft health and right to life articles at earlier points in the Ad Hoc Committee’s deliberations.[166]

There can be little doubt that advocacy for this provision was directed in particular at the withdrawal of ‘life-sustaining treatments’ from persons with severe disability, including the withdrawal of hydration and nutrition provided from a nasogastric tube or percutaneous endoscopic gastrostomy (PEG) inserted into the stomach (often referred to as ‘artificial’ hydration and nutrition). In this respect, a key contextual factor that gave colour and content to the Ad Hoc Committee debates on this issue were the contemporary legal, political and social struggles in the United States of America concerning Michael Schiavo’s decision to withdraw PEG administered hydration and nutrition from his wife Theresa Schiavo over the objection of her parents. Ultimately, Michael Schiavo’s decision prevailed in the Courts, despite the intervention of the American Congress, and his wife died of dehydration and starvation.[167] The drafting of the Convention became a focal point for further activism by a number of interest groups who sought a supervening international law that would prevent such an outcome in the future. There have now been a number of cases similar to Schiavo litigated in Australian Courts, with effectively the same outcome.[168] Article 25(f) therefore has interesting, and so far unrecognised, implications for Australian law in the area of so-called end-of-life decision-making, particularly as it affects persons with disability.

A potentially perverse outcome of the attempt to proscribe the discriminatory denial of food and fluids on the ground of disability in the health article of CRPD is the implied characterisation of food and fluid (at least in specific circumstances) as medical treatment. As already noted, it is precisely this characterisation that has led the Australian Courts to conclude the person concerned or a person appointed to make decisions on their behalf can withhold or withdraw consent to such measures. The CRPD thus may inadvertently reinforce precisely the problem it seeks to resolve. This may have serious broader implications for the rights of life and survival of persons with disability. Following the Supreme Court of Victoria’s decision in Re Gardner,[169] one of the leading Australian cases in which the administration of ‘artificial’ nutrition and hydration is characterised as medical treatment, some specialist disability services in that State are reported to have refused to continue to administer PEG nutrition and hydration to clients of their respite and supported accommodation services on the basis that their staff were neither qualified, or entitled under the relevant industrial awards, to administer ‘medical treatment’ to clients. The consequences of this are that those clients affected must be re-accommodated in a medical facility, or at least in a facility with medically qualified staff. If the person refuses to be reaccommodated, and if suitable alternative staffing arrangements are not put in place, the inevitable consequence is that the person will die of dehydration and starvation. [170]

5. THE DIMENSIONS OF THE RIGHT OF SURVIVAL

5.1 Traditional formulation

The right to survival is a integral dimension of the right to life, however its scope is subject to significant debate, principally because it lies at the intersection of civil and political rights with economic, social and cultural rights.[171] Some commentators seek to confine the right within the narrow framework of civil and political rights arguing that it imposes an obligation on States merely to refrain, and prevent others, from arbitrary killing by means of the purposeful denial of the necessities of life.[172] According to this view, the right of survival must be distinguished from economic, social and cultural rights that seek to promote an adequate standard of living. Accordingly, it is argued that the right does not purport to provide any guarantee against death from famine, exposure, or disease, and that mere toleration of such conditions by the State would not breach the right. Alternatively, it is argued the right of survival does purport to guarantee ‘basic and minimum material goods and services essential to sustain life,’ and that a restrictive interpretation of the right is untenable as it would deprive millions of poor people around the world of any rights at all (the right of life and survival being primordial).[173]

As already noted, the Human Rights Committee has provided qualified support for the latter view by contending that right to life requires States to adopt positive measures, suggesting it would be ‘desirable’ (emphasis added) for State parties to take all possible measures to reduce infant mortality and to increase life expectancy, especially in adopting measures to eliminate malnutrition and epidemics.[174] In our view, the CRPD codifies and extends this broader interpretation of the survival dimension of the right by requiring States to ‘take all necessary measures’ to ensure the effective enjoyment of the right to life of persons with disabilities on an equal basis with others. In our view, this terminology enlivens obligations in the economic, social and cultural spheres that are necessary for the realisation of the rights of life and survival by persons with disability.

5.2 The Convention on the Rights of Persons with Disabilities

The CRPD also extends the scope of economic, social and cultural rights, not only in the sense that it incorporates many detailed requirements to enable all persons with disability to develop to their full potential, but also in that it incorporates an independent right to an adequate standard of living and social protection which is arguably much more expansive than any of its antecedents. It requires states to ensure access to: ‘appropriate and affordable services, devices and other assistance for disability related needs;’ ‘social protection programmes and poverty reduction programmes;’ and, for persons with disabilities and their families living in situations of poverty, ‘to assistance from the State with disability-related expenses, including adequate training, counselling, financial assistance and respite care;’ as well as to public housing, and retirements benefits and programmes.[175] These measures, at least potentially, penetrate to the survival needs of persons with disability to a far greater extent than any pre-existing formulation of these rights.

5.3 Right of survival in Australian law

Australian law contains few provisions codifying the right to survival, and those provisions that do exist are very limited in scope. In some States and Territories the criminal law imposes a duty on persons with responsibility for the care and support of others to ensure the provision of the necessities of life.[176] These provisions potentially apply to those who have responsibility for the care and support of persons with disability. However, we are not aware of any reported case where this duty has been prosecuted or enforced in relation to a person with disability, even though, as the following discussion will reveal, there have been numerous instances where these provisions were apposite.

In Australia, coronial authorities have responsibility to investigate deaths of individuals who die of unnatural causes, or in suspicious or unusual circumstances.[177] However, such authorities have been criticised for their perceived failure to apply sufficient attention or expertise to the deaths of persons with disability living ‘in care.’[178] In 1998, following a public outcry from disabled peoples organisations,[179] resulting from numerous reported incidences of persons with disability in care dying as a result of abuse or neglect, including malnutrition,[180] the New South Government established a Disability Death Review Team within the former Community Services Commission,[181] which had the role of systematically reviewing the circumstances of persons with disability who die in supported accommodation.[182] In 2002 this function was incorporated into the NSW Ombudsman.[183] All deaths of persons with disability living in supported accommodation must be notified to the Ombudsman within 30 days. The Ombudsman is empowered to recommend, but not compel, policies and practices to be implemented by government and service providers for the prevention or reduction of deaths of persons with disability living in residential care. The Ombudsman also has the power to undertake research and project work to assist in the formulation of strategies to reduce or remove risk factors associated with reviewable deaths that are preventable.

In their work to date the Community Services Commission and Ombudsman have identified and reported on a range of systemic issues adversely impacting on the survival of persons with disability in care. This has included poor identification and management of swallowing and nutritional risks; poor health care needs assessment, planning and review; failure to provide adequate first aid following critical incidents; poor risk management of epilepsy; medication errors; poor access to primary and secondary health care; premature hospital discharge and poor discharge planning; unexplained and unreasonable treatment limitation decisions; and, poor interagency coordination between healthcare and disability service providers.[184] However, government and service providers have been slow and ineffective in their response to the problems identified, and consequently, the survival rates of persons with disability living in supported accommodation have improved only marginally. In his last annual report, the Ombudsman noted that many of the problems identified in the previous 12 months ‘are longstanding and have been the subject of previous recommendations ...’[185] Additionally, in spite of its undoubted benefits, the establishment of the disability death review function in an agency responsible for the administrative oversight of government and non-government agencies, rather than in an agency responsible for criminal investigation or the Coroner,[186] has also resulted in a subtle detoxification of harms affecting the survival of persons with disability.

The CRC requires state parties to ‘ensure to the maximum extent possible the survival and development of the child,’[188] and this requirement applies to persons with disability on an equal basis with others.[189] In spite of this, there is widespread approval among Australian medical practitioners for withholding altogether or limiting treatment to newborn children with severe disability with the intention of ‘allowing’ these children to die.[190] There is also considerable support for the taking of active steps, such as the administration of analgesia-sedation, to hasten or cause the death of these children.[191] Although this would usually constitute a criminal offence,[192] we are not aware of any case where such conduct has been prosecuted in Australia.[193] In fact, these ‘treatment’ decisions appear to have become so commonplace as to be regarded as normal medical practice in spite of the applicable law.[194] Decisions to withhold or limit treatment, or to hasten or cause death by active measures, are typically justified on quality of life grounds,[195] but also in terms of health economics, according to which it is suggested that high cost medical interventions and later social service obligations for this group constitute an unjustifiable drain on finite resources.[196] Such analyses are obviously deeply value-laden and ultimately turn on the perceived social value of persons with disability.[197]

5.4 The right to survival and economic, social and cultural rights in Australia

Australia is a relatively wealthy country with evolved income support, health and social service systems. [198] This environment is undoubtedly favourable by world standards, but persons with disability may nevertheless struggle to secure the resources and support necessary for their survival. Indeed, the treatment of persons with disability in Australia in a wide number of instances would appear to be in clear breach of the basic principle of progressive realisation that underpins economic, social and cultural rights: their living conditions simply do not reflect the ‘full and maximum use’ of the resources at the disposal of Australian Governments to secure the economic, social and cultural rights of their citizens.[199]
Australia operates a universal income support system that purports to provide a safety net against poverty. A number of payments are potentially available to persons with disability and their associates including a Disability Support Pension, Disability Support Pension for the Blind, Carer Payment, Carer Allowance, and Mobility Allowance. Additionally, a number of price and tax concessions and subsidies are also potentially available to persons with disability at both the Commonwealth and State levels.[200] Quite surprisingly, there is little published critical research about the extent of disability-related poverty and the adequacy of income support payments for persons with disability in Australia, and that which does exist, is largely income-focused. Income-focused poverty measures tend to suggest that the Australian income support system provides a comprehensive, though modest, income safety net that protects most people from extreme income poverty.[201] However, this conclusion has been hotly contested by disabled peoples organisations for its failure to take into account the extra costs of disability and the barriers to their participation.[202]

Recent formative Australian research has attempted to identify the link between disability and poverty in terms of the incidence of financial hardship, the level of social participation, the incidence of severe financial stress, expressed need, and the availability of support. This research suggests that having a household member with disability is associated with a substantial increase in the incidence of financial hardship, a higher probability of experiencing severe financial stress, and is more likely to result in seeking help from others. It also found that disability is associated with less social participation and a greater likelihood of no access to external financial support if it is needed. It has tentatively concluded that Australian households with a disabled member are not only more deprived than other households, but also at greater risk of deprivation in times of crisis.[203]

All Australian jurisdictions have in place early intervention and parenting programs, which are directed towards the care and support of young children and their parents.[204] Some of these programs are specifically focused on so-called ‘especially vulnerable’ families, which may include young children with disability, and others are specifically focused on children with disability and their parents. These programs offer both therapeutic and developmental interventions for children with disability, as well as parent education and support. They are, however, budget-capped and access to them is discretionary, rather than eligibility-based. Many children with disability have no access to these programs, and access is also often delayed or insufficient resulting in significant loss of developmental opportunity.[205] Some of these programs are also subject to very limited quality-assurance and professional supervision requirements, and consequently lack potency and developmental focus.[206]

All Australian jurisdictions also provide programs of specialist services for adults with disability, including supported accommodation, personal care and domestic assistance, supported employment, developmental day programs, recreation services, therapy services, specialised transport, home modifications, aids and appliances, case work, clinical and advocacy services. However, these programs are also budget-capped and under significant and long-standing stress. Many thousands of people with disability lack access to basic services and supports essential for their wellbeing, development and survival.[207] There have now been several cases of a person with disability committing suicide or refusing ‘non-heroic’ life-sustaining treatment in order to die, and of a parent killing their son or daughter with disability before committing suicide themselves, driven by despair at their inability to obtain necessary support services. The situation is especially acute within Australian mental health systems, which are chronically under-funded relative to demand.[208] There are now numerous documented cases of persons with mental illness committing suicide during periods of disorientation having been refused access to crisis mental health services.[209] This problem is especially critical in Australia’s criminal justice facilities and immigration detention centres, which are notorious for their failure to provide adequate mental health services for prisoners.[210]

Persons with disability also experience widespread structural and personal discrimination in their access to general health services.[211] The Disability Discrimination Act, 1992 applies to health service provision, but has had limited impact to date. In the area of health prevention, disability discrimination may manifest in a failure to detect the onset of illness and disease (for example, screening for breast and cervical cancer is only rarely carried out for women with intellectual disability living in supported accommodation, and breast and cervical screening equipment is, in most cases, inaccessible for women with significant physical disability).[212] Population-based health promotion programmes are rarely tailored to the needs of persons with disability. For example, tobacco control programs rarely focus on the provision of accessible and adapted education strategies, or on appropriate smoking cessation supports for smokers with disability, in spite of the fact that smoking prevalence is as high as 90% among some population groups of disabled persons.[213] The prevalence of obesity among persons with intellectual disability is also up to 3 times that of the general population.[214] There is a very high incidence of ‘diagnostic overshadowing’ in the treatment of persons with disability in Australian health care settings, in which health concerns are incorrectly assimilated with the person’s impairment, resulting in the failure to diagnose and treat health risks. One Australian study found that 42% of medical conditions went undiagnosed in people with intellectual disability, and half the diagnosed conditions were inadequately managed.[215] Australia’s tertiary health care system is subject to critical cost pressures, and the allocation of resources is heavily influenced by rationalist utilitarian economic policies. These policies often result either overtly or covertly in the denial or limitation of medical services to persons with disability in Australia due to negative perceptions of their social value.[216] Australia also lacks a publicly subsidised national dental health scheme, which means that most persons with disability lack access to essential dental care.[217] Untreated dental problems can be a source not only of life-diminishing pain, but also of life-threatening infection.

5.5 Situations of risk and humanitarian emergencies

The CRPD extends the right of survival to persons with disability in situations of risk and humanitarian emergencies. It imposes an obligation on States to take ‘all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters.’[218] Australian building standards[219] provide little protection for persons who use mobility devices in the event of an emergency requiring evacuation of multi-storey buildings. Lifts are not required to be fire-rated, and emergency procedures typically advise persons using mobility devices to wait at the top of stairwells in the hope of rescue by emergency services. As they currently stand, Australian building standards also fail to require visual alarms that would serve to warn persons who are deaf of an event requiring evacuation. Most emergency response policies, procedures and products on the Australian market also fail to take into account the specific needs of persons with disability.

Australia is a bush-fire and flood prone country, and much its extensive coastline, where most of the population is concentrated, is also subject to cyclonic storms. Although the continent is relatively stable compared to other regions of the world, earthquakes do occur, and severe earthquakes have occurred in urban areas. The risk of tsunami hitting the coast following earthquake offshore is also quite real. Apart from natural disasters, Australia also faces the threat of terrorist attack, particularly since its participation in the United States-led wars in Afghanistan and Iraq. In response to these threats, local, State and Territory, and the Commonwealth governments have established designated emergency services responsible for planning, coordinating and implementing emergency responses to these risks. While some agencies have developed plans that may effectively protect the lives of persons with disability in some circumstances (for example, evacuation of people from supported accommodation services threatened by bushfire),[220] generally such planning has failed to take account of the specific needs of persons with disability, particularly in the event of a large scale emergency. Consequently, there is every reason to suggest that, should a large-scale disaster occur, Australia would experience similar problems to those that became evident in the United States of America following cyclones Rita and Katrina.[221] This issue is the subject of attention by disability activists in Australia, but to date, there has been little response by government.

Australia’s refugee policy is deeply and overtly discriminatory towards persons with disability. In the absence of the favourable exercise of a Ministerial discretion to grant asylum, persons with disability and their families are excluded from entry, irrespective of their circumstances. This is arguably in breach of the right of survival now codified by the CRPD.[222]

6. CONCLUSION

In the nearly thirty years since Australia signed and ratified the ICCPR, very few specific steps have been taken by Australian governments to ensure that persons with disability enjoy the right to life on an equal basis with others. Indeed, even those steps that have been taken, such the legislating of specific measures to deter crimes against persons with disability and the establishment of the Disability Death Review Team, both in New South Wales, have been driven by specific domestic issues, rather than by any particular consciousness of Australia’s international obligations. This complacency appears to be underpinned by a relatively high level of confidence that Australian law and social norms already sufficiently protect persons with disability against threats to their life and survival. However, this confidence is seriously misplaced. Despite living in a wealthy country, presided over by stable governmental and legal institutions that claim a commitment to human rights, Australians with disability face significant threats to their rights to life and survival, even from within those institutions specifically charged with the protection of these rights.

The CRPD potentially establishes a new standard, and certainly brings a new focus, to international efforts to protect the rights of persons with disability to life and survival. In particular, it will place a stronger emphasis on the provision of the social resources persons with disability require in order to effectively realise these rights. This will be as important in developed countries, such as Australia, as it will be in developing and transitional states. Additionally, the CRPD introduces a number of new elements and dimensions to the rights of life and survival which have significant, but as yet largely unrealised implications, for Australian law and practice, particularly in relation the protection of persons with disability in situations of risk and emergency. In the area of bioethics, however, the CRPD has largely failed address the most serious contemporary threats to the lives and survival of persons with disability in Australia. While it may to some extent address the withholding or withdrawal of healthcare, and nutrition and hydration, from persons with disability during periods of health vulnerability, it remains silent on genetic science aimed at the elimination of impairment-related human diversity, and on pre-birth negative selection of foeti with identified or imputed impairment. It is therefore unlikely to have any impact on deeply problematic Australian law and practice in these areas.

[1] A shorter version of this article is published as P French and R Kayess, “Deadly Currents Beneath Calm Waters: Persons with Disability and the Right to Life in Australia” in L. Clements and J Read (eds) Disabled People and the Right to Life: The Protection and Violation of Disabled People’s Most Basic Human Rights, OUP, Routledge (forthcoming 2008). This longer version is published with permission.
[2] Australia was a significant contributor to the crucial negotiations on the United Nations Charter to ensure that respect for human rights was placed alongside peace, security and development as the primary aims of the United Nations. Australia also participated in the eight-member committee charged with drafting the Universal Declaration of Human Rights, and its Minister for External Affairs also presided over the General Assembly when the Declaration was adopted by the United Nations in 1948.
[3] Australia signed and ratified the International Covenant on Civil and Political Rights on 18 December 1972 and 13 August 1980 respectively.
[4] Australia signed and ratified the Convention on the Rights of the Child on 22 August 1990 and 17 December 1990 respectively.
[5] Australia signed the Convention on the Rights of Persons with Disabilities, but not its optional protocol, when they opened for signature on 30 March 2007.
[6] The Human Rights Committee is the body of independent experts that monitors implementation of the International Covenant on Civil and Political Rights by its State parties. One of the functions of the Committee is to publish its interpretation of the content of human rights provisions. These interpretations are known as ‘general comments.’
[7] Human Rights Committee, General Comment No.6: The right to life (art.6) (1982) HRI/GEN/1/Rev 8, p167 para 5.

[8] For an introduction to this issue, see B G Ramcharan, ‘The Concept and Dimensions of the Right to Life’ in B G Ramcharan, (ed) The Right to Life in International Law, Dordrecht, Boston, M Nijhoff, 1985, pp 1ff.
[9] For an emerging critique of the traditional distinction between civil and political and economic, social and cultural rights in a disability context, see M A Stein, ‘Disability Human Rights’ (2007) 95 California Law Review 75.
[10] For an overview of the emergence of the social model or social relational perspective in disability studies, see G L Albrect, K D Seelman and M Bury ‘The Formation of Disability Studies’, in Handbook of Disability Studies, G L Albrect, K D Seelman and M Bury (eds), Sage Publications 2001, p 1-12.
[11] The International Covenant on Civil and Political Rights, the International Covenant on Economic, Social and Cultural Rights, and the Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment.
[12] The International Convention on the Elimination of All Forms of Racial Discrimination, the Convention on the Elimination of All Forms of Discrimination against Women, the Convention on the Rights of the Child, and the International Convention on the Protection of the Rights of All Migrant Workers and Members of their Families.
[13] Article 2, paragraph 1.
[14] Article 23: which applies to children with “mental” and “physical” disability.
[15] There were two prior unsuccessful attempts to persuade the international community to adopt a disability-specific human rights instrument. Italy proposed such a Convention to the General Assembly at its forty-second session in 1987, and Sweden did so again at its forty-sixth session in 1989. In the first and second sessions of the Ad Hoc Committee on the Comprehensive and Integral International Convention on the Rights and Dignity of Persons with Disabilities, in 2002 and 2003 respectively, a number of States, including the Australian delegation, continued to argue that a specific Convention was unnecessary in view of the universal scope of existing human rights treaties. The Australian delegation unsuccessfully proposed instead that disability rights concerns be dealt with in an optional protocol to the ICCPR.
[16] L Despouy, Human Rights and Disabled Persons Report by Special Rapporteur of the Sub-Commission on Prevention of Discrimination and Protection of Minorities, United Nations, 1993, United Nations publication, Sales No. E.92.XIV.4, paras 280-81.
[17] For a discussion of this issue see P Uvin, Human Rights and Development, Kumarian Press, 2004. Uvin argues that the conceptual divide between rights categories is manifested in a partition of labour and perceived expertise by international agencies.
[18] Stein supra note 8 at 26ff.
[19] The right is ‘negative’ in the sense that it operates as a constraint on liberty to do as one pleases; that is, to take the life of another. The term ‘negative rights’ was coined by Isaiah Berlin in his essay ‘Two Concepts of Liberty’ in I Berlin Four Essays on Liberty, London, Oxford University Press; Karel Vasak has categorised negative rights as first generation rights: K Vasak, ‘Human Rights: A Thirty-Year Struggle: the Sustained Efforts to give Force of law to the Universal Declaration of Human Rights,’ UNESCO Courier 30:11, Paris: United Nations Educational, Scientific, and Cultural Organization, November 1977.
[20] General Assembly Resolution 56/168 Comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities Resolution adopted by the General Assembly on the report of the Third Committee (A/56/583/Add.2).
[21] During its eighth session, the Ad Hoc Committee adopted the simpler form Convention on the Rights of Persons with Disabilities.
[22] General Assembly Resolution 56/168, supra, note 19, paragraph 1.
[23] These ‘constraints’ within which the Convention was to be developed were repeatedly expressed by delegations in each session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Rights and Dignity of Persons with Disability. However, their primary operation was defensive, allowing the Committee’s executive to argue that the Convention would not change international law with respect to controversial issues such as abortion and same-sex relationships. In areas of less sensitivity these constraints were, in substance, disregarded.
[24] For example, Article 9 “Accessibility,” which appears both as a stand-alone article and as a cross cutting principle25 underpinning the Convention as a whole, and Article 20 “Personal mobility.” Although these articles might be said to spring from the principle of non-discrimination and the right to liberty of the person respectively, their formulation clearly transcends any previously existing human right.
[26] For example, Article 21 “Freedom of expression and opinion, and access to information,” which extends the formerly essentially “negative” right of State non-interference with personal opinion and expression into the “positive” State obligation to provide public information in accessible formats and to recognise sign languages, Braille, and augmentative and alternative communication.
[27] Paradoxically, this distinction formally preserved by Article 4, paragraph 2 of the Convention. However, in substance it is not. For example, Article 29 “Participation in political and public life” is traditionally a civil and political right subject to immediate realisation, however, it incorporates a number of social, economic and cultural measures which, traditionally, would be subject to progressive realisation.
[28] There is no stand-alone article incorporating the right to development; instead measures to enable persons with disability to develop to their full potential are woven throughout the Convention.
[29] Article 32.
[30] Article 28, paragraph b.
[31] Article 28.
[32] Article 10.
[33] Arguably, the Convention on the Rights of the Child had already achieved this in Article 6(2) of that Convention, but obviously only with respect to children.
[34] Inclusion International, World Federation of the Deafblind, and People with Disability Australia, among others, advanced these proposals. The right to life was discussed in detail by the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Rights and Dignity of Persons with Disabilities at its Third (2003), Fifth (2005) and Seventh (2006) sessions, and in the Ad Hoc Committee Working Group also held in 2003; for summaries of discussions see http://www.un.org/esa/socdev/enable/rights/adhoccom.htm
[35] This ‘paradigm shift’ was referred to extensively by delegations participating in each of the Ad Hoc Committee Sessions, and frequently appears in daily summaries of negotiations; see further http://www.un.org/esa/socdev/enable/rights/adhoccom.htm
[36] M Stein, ‘Disability Human Rights’ 95 Cal L Review 2007 (forthcoming)
[37] Ibid, see especially footnote 97; see also Anita Silvers, ‘Formal Justice’ in Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy in Anita Silvers, D Wassermanm and M Mahowald (eds) Rowman and Littlefield, 1998, p 13.
[38] M Nowak, UN Convention on Civil and Political Rights: ICCP Commentary, N P Engel, Kehl, 1993, p. 104; Y Dinstein, ‘The Right to Life, Physical Integrity and Liberty’ in L Henkin (ed), The International Bill of Rights, New York, Columbia University Press, 1981, p 114; B G Ramcharan, “The Concept and Dimensions of the Right to Life,” in BG Ramcharan (ed), The Right to Life in International Law Dordrecht, Boston , M. Nijhoff, 1985 p 6.
[39] Wake v Northern Territory of Australia [1996] NTSC 56; (1996) 109 NTR 1.
[40] Ibid per Martin CJ at 37, Mildren J at 39, and Angel J at 19-35.
[41] Commonwealth of Australia Constitution Act, 1900 (UK)
[42] The Commonwealth therefore has direct power to over-ride all Territory laws, which it does not have with respect to the States in the areas of their legislative competence. This power was used to negative the Northern Territory’s euthanasia law, without it being necessary for the Commonwealth to resort to any power deriving from Australia’s international human rights obligations (assuming for the purposes of argument that these may have been applicable in the circumstances); for a discussion of this issue see: G Zdenkowski, ‘The International Covenant on Civil and Political Rights and Euthanasia’ in [1997] UNSWLawJl 17; (1997) 20(1) UNSW Law Journal 170.
[43] This is required by Article 2 of the ICCPR; Article 4 of the CRC; and, Article 4 of the CRPD.
[44] While it is the Australian parliament that is ultimately responsible to ensure the domestic implementation of Australia’s international human rights obligations, State and territory parliaments may also legislate to incorporate these obligations.
[45] Courts may look to Australia’s international obligations to assist in statutory interpretation, where ambiguity exists: Minister for Immigration and Ethnic Affairs v Teoh [1995] HCA 20; (1995) 183 CLR 273.
[46] Aspects of some obligations have been incorporated. The Sex Discrimination Act 1984 (Cth) incorporates major aspects of the Convention on the Elimination of All Forms of Discrimination against Women and the Racial Discrimination Act 1975 (Cth) incorporates major aspects of the International Convention on the Elimination of All Forms of Racial Discrimination. In the disability area both the Disability Discrimination Act 1992 (Cth) and the Disability Services Act 1986 (Cth) incorporate major aspects of the Declaration on the Rights of Mentally Retarded Persons (1971) and the Declaration on the Rights of the Disabled (1975).
[47] The Hon Michael Kirby, AC, CMG, Acting Chief Justice of Australia, ‘The ALJ @ 80: Past, Present and Future,’ Paper delivered to a conference to celebrate the 80th anniversary of the Australian Law Journal, 16 March 2007 (unpublished) at 29; see also A F Mason, “Democracy and the Law: The State of the Australian Political System (Nov 2005) Law Society Journal (NSW) 8 at 69.
[48] Section 11(f) Human Rights and Equal Opportunity Act 1986 (Cth).
[49] Disability Services Act 1986 (Cth)
[50] Disability Discrimination Act 1992 (Cth)
[51] Australian Government, Commonwealth Disability Strategy, 2000
[52] Under this agreement, all Australian States and Territories were required to enact legislation complementary to the Disability Services Act 1986, using the Principles and Objectives of that Act as the basis.
[53] The Principles and Objectives of the Disability Services Act, 1986 are formulated under s 5 of the Act, and were gazetted on 9 June 1987, Commonwealth of Australia Gazette, No S118, Tuesday 9 June 1987.
[54] Australian Government, Department of Family and Community Services, Disability Services Standards, 2005.
[55] Section 4 Disability Discrimination Act 1992; although cast as a definition of disability, it is essentially a definition of impairment.
[56] This includes a mandate to develop mandatory Disability Standards in specific areas, incentives for the development of Voluntary Action Plans, and a time-limited exemption function which promotes staged compliance.
[57] Both individual and representative complaints may be made under the Act. Such complaints may ultimately be adjudicated in the Federal Magistrates Court or Federal Court of Australia.
[58] Human Rights Committee, General Comment No 6: The right to Life, supra note 6.
[59] C J Murray, A D Lopez ‘Mortality by cause for eight regions of the world: Global Burden of Disease Study’ Lancet. 1997; 349:1269–1276.
[60] See generally, International Disability and Development Consortium, Disability and Conflict, Proceedings of a Seminar conducted 29 May to 4 June 2000.
[61] For a discussion of the illegality of Australia’s participation in the Iraq war see: A Byrnes and H Charlesworth, The Illegality of the War Against Iraq in (2003) 22(1) Dialogue pp 4-9.
[62] A New South Wales study found that 48% of reception inmates and 38% of sentenced inmates had experienced a mental disorder (defined as a psychosis, affective disorder or anxiety disorder) in the previous twelve months. When a broader definition of ‘any psychiatric disorder’ was used, it was found that 74% of the New South Wales prison population had experienced an episode in the previous twelve months: T Butler and S Allnutt, Mental Illness Among New South Wales Prisoners, New South Wales Corrections Health Service, 2003, p 2. A Victorian study found that 51% of prisoners reported that they had been assessed, or received treatment by a psychiatrist or a doctor, for an emotional of mental health problem: Victorian Prisoner Health Study, Department of Justice, Government of Victoria, 2003 at 28. A New South Wales study found that 23% of persons appearing before Local Courts on criminal charges had intellectual disability: NSW Law Reform Commission, People with an Intellectual Disability and the Criminal Justice System: Appearances Before Local Courts, Research Report 4, 1993. A follow-up study focused on two rural courts found that 51.5% of persons appearing before the Court had intellectual disability: NSW Law Reform Commission, People with Intellectual Disability and the Criminal Justice System, Research Report 5, 1996.
[63] M Nowak, “Article 6, Right to Life” in U. N. Covenant on Civil and Political Rights: CCPR Commentary, N P Engel, Kehl, 2005, p 113ff.
[64] Death Penalty Abolition Act, 1973 (Cth); Criminal Code Amendment Act, 1922 (Qld); Criminal Code Act, 1968 (Tas); Crimes (Capital Offences) Act, 1975 (Vic); Statutes Amendment (Capital Punishment Abolition) Act, 1976 (SA); Acts Amendment (Abolition of Capital Punishment) Act, 1984 (WA); Crimes Amendment Act, 1955 (NSW); Crimes (Death Penalty Abolition) Amendment Act, 1985 (NSW), Miscellaneous Acts (Death Penalty Abolition) Amendment Act, 1985 (NSW).
[65] Australia acceded to this Protocol on 2 October 1990, and it entered into force in international law on 11 July 1991.
[66] M Fullilove Policy Brief: Capital Punishment and Australian Foreign Policy, Lowy Institute August 2006, p 5
[67] Ibid p 6; see also J von Doussa, President, Human Rights and Equal Opportunity Commission “The Death Penalty – a matter of principle” paper presented to the United Nations Association of Australia, 22 October 2006.
[68] This view is based on the decision in Judge v Canada, where the Human Rights Committee stated “For countries that have abolished the death penalty, there is an obligation not to expose a person to the real risk of its application: Communication No. 829/1998 U. N. Doc CCPR/C/78/D/829/1998 (2003) at para 10.4.
[69] J von Doussa, supra note 65.
[70] For a useful overview of these statements, see Fullilove supra n 63 at p.8.
[71] Ibid at p 3.
[72] All Australian jurisdictions have criminal laws prohibiting intentional killing of another human being, although these laws vary in their detail: Criminal Code Act, 1995 (Cth); Criminal Code Act, 1899 (Qld); Criminal Code Act, 1924 (Tas); Crimes Act, 1958 (Vic); Criminal Law Consolidation Act, 1935 (SA); Criminal Code Compilation Act, 1913 (WA); Crimes Act, 1900 (NSW); Criminal Code Act, (NT); Crimes Act, 1900 (ACT).
[73] Crimes Act, 1900 (ACT) s12; Crimes Act, 1900 (NSW) s 18, s19A; Criminal Code Act (NT) s 164 (imprisonment for life is mandatory on conviction for murder); Criminal Code Act 1899 (Qld) s 305; Crimes Act, 1958 (Vic) s 3; Criminal Code Act 1924 (Tas) s 158; Criminal Code Compilation Act 1913 (WA), s 282; Criminal Law Consolidation Act 1935 (SA), s 11.
[74] Crimes Act 1900 (ACT) s 15; Crimes Act 1900 (NSW) s 18, s 24; Criminal Code Act (NT) s 167; Criminal Code Act 1899 (Qld) s 310; Crimes Act 1958 (Vic) s 5; Criminal Code Act 1924 (Tas) (no term specified; common law principles apply); Criminal Code Compilation Act 1913 (WA) 287; Criminal Law Consolidation Act 1935 (SA) s 13.
[75] Murder attracts a mandatory life sentence in some Australian States and Territories eg Northern Territory s 164 Criminal Code (NT) and Western Australia Criminal Code s 282.
[76] Crimes (Sentencing Procedure) Act 1999 (NSW), s 21A(2)(h);
[77] Crimes (Sentencing Procedure) Act, 1999 (NSW), s 21A(2)(l); see also Crimes (Sentencing) Act, 2005 (ACT), s 33(1)(m);
[78] Crimes (Sentencing Procedure) Act, 1999 (NSW), s 21A(2)(k);
[79] Crimes (Sentencing) Act 2005 (ACT) s 33(1)(d); Criminal Law (Sentencing) Act 1988 (SA) s 10(d); Sentencing Act 1995 (Vic) s 5(2)(da);
[80] Section 21A of the Crimes (Sentencing Procedure) Act, 1999 was inserted by amendment in 2002.
[81] This diagnosis resulted in the case proceeding under s 23A of the Crimes Act, 1900 (NSW) on the ground of ‘substantial impairment’ of capacity by reason of an ‘abnormality of mind arising from an underlying condition.’ This provision codifies the principle of diminished responsibility, rather than insanity. R v Daniella Dawes (unreported) District Court of New South Wales Criminal Jurisdiction, Judge Ellis, Parramatta, Wednesday, 2 June 2004 at 1 s 23A of the Crimes Act 1900 (NSW) provides that a verdict of manslaughter is appropriate where the offender was substantially ‘impaired by an abnormity of mind’ at the time of the incident.
[82] Ibid at p 26
[83] See for example Sixty Minutes “Breaking Point” 20 June 2004 at http://sixtyminutes.ninemsn.com.au/sixtyminutes/stories/2004_06_20/story_1149.asp (accessed 14 March 2007); “Woman who suffocated son walks free” The Age, 2 June 2004.
[84] R v Daniella Dawes [2004] NSWCCA 363 unreported 5 November 2004 per Dunford, J at par 28.
[85] R v Daniella Dawes (unreported), District Court of New South Wales Criminal Jurisdiction, Judge Ellis, Parramatta, Wednesday, 2 June 2004, p 7.
[86] R v Daniella Dawes [2004] NSWCCA 363, unreported, 5 November 2004, Dunford, J, at pars 8 and 9; Hoeben J, agreeing; Barr J, at paras 51-53.
[87] R v Daniella Dawes, (unreported), District Court of New South Wales Criminal Jurisdiction, Judge Ellis, Parramatta, Wednesday, 2 June 2004, at pages 18/19 of the transcript.
[88] This case invoked the aggravating factors of ‘special vulnerability of the victim’ Crimes Act 1900 (NSW) s 21A(2)(l), and ‘the offenders abuse of a position of trust and authority in relation to the victim’ Crimes Act 1900 (NSW) s 21A(2)(k).
[89] R v Daniella Dawes (unreported), District Court of New South Wales, Criminal Jurisdiction, Judge Ellis, Parramatta, Wednesday, 2 June 2004, at page 9 of the transcript.
[90] Crimes (Sentencing) Act, 2005 (ACT) s 7; Crimes (Sentencing Procedure) Act, 1999 (NSW) s 3A; Sentencing Act, (NT) s 5; Penalties and Sentences Act, 1992 (Qld) s 9; Criminal Law (Sentencing Act), 1988 (SA), s 10; Sentencing Act, 1997 (Tas), s 3; Sentencing Act, 1991 (Vic) s 1;
[91] R v Daniella Dawes (unreported), District Court of New South Wales, Criminal Jurisdiction, Judge Ellis, Parramatta, Wednesday, 2 June 2004 at page 18 of the transcript.
[92] Ibid.
[93] R v Daniella Dawes {2004} NSWCCA 363, unreported, 5 November 2004, per Dunford, Barr and Hoeben JJ.
[94] Ibid per Dunford and Hoeben JJ; Barr J held that there was no error on the part of the sentencing judge. This discretion arises from the principles governing Crown appeals against sentence in Australia.
[95] The charge was reduced from murder to manslaughter on the basis that Mr and Mrs Sutton were subject to a ‘substantial abnormality of mind’ (s 23A of the Crimes Act 1900 (NSW)) at the time of the offence, constituted by severe depression and anxiety.
[96] R v Raymond Douglas Sutton; R v Margaret E Sutton [2007] NSWSC 295
[97] Ibid at paras 12-13.
[98] Ibid at para 26
[99] This was a single judge, Barr J, who had dissented in Dawes, holding that the appeal should be dismissed and that the trial judge’s sentence should be upheld.
[100] R v Raymond Douglas Sutton; R v Margaret E Sutton [2007] NSWSC 295 at par 33.
[101] Philip Nitschke, interviewed for ABC News 7:00pm; 4 April 2007.
[102] Remarkably, this included Andrew Buchanan, Chair of the NSW Government’s official advisory body on disability, The Disability Council of New South Wales, who stated that Mr and Mrs Sutton were to be “applauded” for their actions.
[103] R v Raymond Douglas Sutton; R v Margaret E Sutton [2007] NSWSC 295, at para 36 and 38.
[104] Ibid at para 12.
[105] Human Rights Committee, General Comment No 6: The right to life supra n 6 at 3
[106] For a discussion of the concept of ‘arbitrariness’ in this context see B G Ramcharan, “The Concept and Dimensions of the Right to Life in B J Ramcharan (ed) supra, note 36 at 19ff
[107] A study of all police fatal shootings in Australia for the period 1990 to 1997 found that more than a third of victims were subject to a recognised mental illness at the time of the incident: V Dalton, Trends and Issues in Criminal Justice, Police Shootings 1990-1997, No 89, 1998, Australian Institute of Criminology, Canberra, at 1; During the period 2000 to 2004 there were five fatal police shootings in Victoria, each of which involved a victim subject to a mental illness at the time of the incident: Springvale Monash Legal Service Incorporated, Police Training and Mental Illness – A Time for Change, Springvale Monash Legal Service Incorporated 2005 at 6; At least three persons with mental illness were fatally shot by Police in Queensland between 2002 and 2005: Office of the Public Advocate – Queensland, 2005 Discussion Paper 4: Preserving Life and Dignity in Distress, Responding to critical mental health incidents 2005 at2.
[108] Such incidents may constitute direct discrimination in the sense that it is prejudice involving the perceived ‘dangerousness,’ ‘unpredictability,’ and ‘menace’ of the person with mental illness that has triggered the incident.
[109] Such incidents may constitute indirect discrimination in the sense that police ‘command and enforce’ tactics represent terms and conditions, which though apparently neutral on their face, cannot be complied with by a greater proportion of persons with mental illness, particularly during periods of acute illness.
[110] Human Rights Committee, General Comment No. 6: The right to life supra n 6 at para 4.
[111] The International Convention on the Protection of All Persons from Enforced Disappearance was adopted by the United Nations General Assembly on 20 December 2006, UN Doc A/RES/61/177. The Convention is not yet in force.
[112] Article 2.
[113] Commonwealth Ombudsman, Report on Referred Immigration Cases: Mr T, Report No 04/2006; Commonwealth Ombudsman, Report on Referred Immigration Cases: Mr G, Report No 06/2006; Commonwealth Ombudsman, Report of the Inquiry into the Circumstances of the Vivian Alvarez Matter, Report No 03/2005; Mick Palmer Inquiry into the Circumstances of the Immigration Detention of Cornelia Rau 2005; Commonwealth Ombudsman, Department of Immigration and Multicultural Affairs: Report into Referred Immigration Cases: Mental Health and Incapacity, Report 07/2006.
[114] Commonwealth Ombudsman, (2006) Department of Immigration and Multicultural Affairs: Report into Referred Immigration Cases: Mental Health and Incapacity, Report 07/2006 at 3.
[115] Commonwealth Ombudsman, Report of the Inquiry into the Circumstances of the Vivian Alvarez Matter, Report No 03/2005; Mick Palmer, Inquiry into the Circumstances of the Immigration Detention of Cornelia Rau, July 2005; see also the case of Robert Jovicic, a person with acute mental illness deported to Serbia, which refused to recognise him as its citizen, into circumstances of destitution: SBS News “Former Melbourne Man Deported.´ http://www.worldnewsaustralia.com.au/region.php?id=125909&region=7 (accessed 14 March 2007)
[116] Commonwealth Ombudsman, Immigration Reports Tabled in Parliament, 2005 http://www.ombudsman.gov.au/commonwealth/publish.nsf/Content/publications_immigrationreports
[117] S Parker, L Limbers, E McKeon, Homelessness and Accommodation Models for People Living with Mental Health Problems, NSW Mental Health Coordinating Council 2002. T Hodder, M Teesson, & N Buhrich ‘Down and Out In Sydney: Prevalence of Mental Disorders, Disability and Health Service Use Among Homeless People in Inner Sydney’ Sydney City Mission, 1998. Estimating the prevalence of persons with disability in populations of homeless persons in Australia is a challenging and, as yet, inexact task: see Australian Institute for Health and Welfare, F Murdoch Homeless SAAP clients with a disability 2002–03. Bulletin No. 23. 2005 AIHW cat. no. AUS 56. Canberra: AIHW.
Homeless SAAP Clients with a disability 2002-03, AIHW Bulletin 23 at 2.
[118] NSW Ombudsman Assisting homeless people—the need to improve their access to accommodation and support services: final report arising from an inquiry into access to, and exiting from, the Supported Accommodation Assistance Program. Sydney: NSW Ombudsman 2004.
[119] M Nowak, UN Covenant on Civil and Political Rights: ICCR Commentary supra n 36 at 123.
[120] Article 1, Universal Declaration of Human Rights
[121] Human Rights Committee, General Comment No 28: Equality of rights between men and women (article 3): HRI/GEN/1/Rev 8.
[122] Y Dinstein “The Right of Life, Physical Integrity and Liberty” in Henkin (ed) supra n 36 at 114ff.
[123] Convention on the Rights of the Child, Preambular para 9.
[124] For a discussion of this issue, see generally P. Alston, “The Unborn Child and Abortion Under the Draft Convention on the Rights of the Child,” (199) 12 Human Rights Quarterly156. Alston argues that the CRC leaves the question of abortion open such that states may either prohibit or approve abortion.
[125] In the Australian Capital Territory abortion is regulated under the Medical Practitioners (Maternal Health) Amendment Act, 2002 which, in brief, provides that only a registered medical practitioner may carry out an abortion, abortions must be performed in approved medical facilities, and no person is required to assist in or perform an abortion.
[126] Queensland Criminal Code, 1899 s 224-226, s 282; Crimes Act, 1900 (NSW) s 82-84; Crimes Act, 1958 (Vic) s 65/66; Tasmanian Criminal Code s 134, 135, 164. In New South Wales, Victoria and Queensland it has been left to the Courts to determine what constitutes a ‘lawful’ versus and ‘unlawful’ termination of pregnancy, and it is these decisions that have developed the broad ‘maternal health’ exception: R v Wald [1971] 3 NSWDCR 25; R v Davidson [1969] VicRp 85; [1969] VR 667; R v Bayliss & Cullen (1986) 9 Qld Lawyers Reps 8.
[127] Criminal Law Consolidation Act, 1935 (SA), s 81-82A; Criminal Code Act, 1983 (NT) s 172-174.
[128] Section 199, Criminal Code (WA)
[129] Section 334 Health Act, 1911 (WA)
[130] Section 334(7) Health Act, 1911 (WA)
[131] J Savulescu, ‘Is current practice around late termination of pregnancy eugenic and discriminatory? Maternal interests and abortion’ Journal of Medical Ethics 2001, 27, 165-171; H Pringle ‘Abortion and Disability: Reforming the Law in South Australia,’ (2006) UNSW Law Journal Forum Vol 12 No 1 at 6-12.
[132] F Yusuf, S Siedlecky, ‘Legal Abortion in South Australia: a review of the first thirty years’ Aust N Z J Obstet Gynaecol 2002; 42: 15-21.
[133] Ibid.
[134] J Kelly and M D R Evans, ‘Trends in Australian attitudes to abortion, 1984-2002, 2003 Australian Social Monitor 6(3): 45-53; see also for a discussion on attitudes to abortion within the medical profession J Savulescu J supra n 129.
[135] M Tankard Reist Defiant Birth Australia, Spinifex, 2006 p 78-80; see also Bridle, L ‘Confronting the Distortions: Mothers of Children with Down Syndrome and Prenatal Testing’2000 Interaction, Vol 13, issue 4, pp 26-33.
[136] Criminal Law Consolidation Act, 1935 (SA) s 82A(7) and (8); Crimes Act, 1958 (Vic) s 10.
[137] Section 290 Criminal Code (WA); s 170 Criminal Code (NT); s 313(1) Criminal Code (Qld); s 42 Crimes Act, 1900 (ACT).
[138] Section 165, Criminal Code (Tas).
[139] J Savulescu supra note 129; J Kelly MDR Evans supra note 132.
[140] Remarkably, the Coroner determined he did not have jurisdiction to investigate, as the child was still-born.
[141] The Board is responsible for the registration of medical practitioners and for the supervision of their professional practice.
[142] L J de Crespigny, J Savulescu, ‘Abortion: time to clarify Australia’s confusing laws’ 2004 Medical Journal of Australia 181(4); 201-203 at 202; J Savulescu supra note 129.
[143] For a discussion of these cases see generally: A Grey (2006) ‘Harriton v Stephens: Life, Logic and Legal Fictions,’ [2006] SydLawRw 25; 2006 28(3)Sydney Law Review 545-560; S Todd, ‘Wrongful Conception, Wrongful Birth and Wrongful Life,’ [2005] SydLawRw 25; (2005) 27 Sydney Law Review 525; D Stretton, ‘The Birth Torts: Damages for Wrongful Birth and Wrongful Life[2005] DeakinLawRw 16; , ‘ (2005) 10 Deakin Law Review 319.
[144] Harriton v Stephens [2006] HCA 15; Waller v James; Waller v Hoolahan [2006] HCA 16.
[145] Harriton, per Crennan J with whom Glesson, CJ, Gummow and Heydon JJ agreed at 252; per Hayne J at 168.
[146] Harriton, per Crennan J with whom Glesson, CJ, Gummow and Heydon JJ agreed at 258/59.
[147] Cattabacg v Melchior [2003] HCA 38; (2003) 215 CLR 1. This case involved a claim in negligence against a medical practitioner who failed to effectively perform a sterilisation procedure, which resulted in the subsequent birth of a child. The plaintiff parent was awarded compensation for the costs of raising the initially unwanted child until age 18. The case did not concern a child with disability. Todd, supra note 141; Stretton, supra note 141 [2005] DeakinLawRw 16; (2005) 10 Deakin Law Review 319. The tort of wrongful life has subsequently been negatived by statute in New South Wales, Queensland and South Australia.
[148] The majority attempts to distinguish these cases: Harriton per Crennan J with whom Glesson, CJ, Gummow and Heydon JJ agreed at 256; Kirby J in sole dissent argues that it is not possible to do so at 95.
[149] M Nowak, UN Covenant on Civil and Political Rights: ICCR Commentary, supra note 36 p 123; Y Dinstein, “The Right to Life, Physical Integrity and Liberty” supra note 36 at p120.
[150] Ibid; see also G Zdenkowski, “The International Covenant on Civil and Political Rights and Euthanasia” in (1997) UNSW Law Journal 169.
[151] In the Australian context, see for example: C Newell ‘Medical Killing and People with Disability: A Critique’ in Australian Disability Review 2-96; 28; J Fitzgerald ‘Legalising Euthanasia: Its Implications for People with Disability’ in Australian Disability Review 2-96; 3; E Liepoldt Good Life in the Balance: A Cross-National Study of Dutch and Australian Disability Perspectives on Euthanasia and Physician-Assisted Suicide, A thesis submitted in fulfilment of the requirements of the award of Doctor of Philosophy (Human Services) at the Faculty of Community Studies, Education and Social Science, Edith Cowan University, May 2003.
[152] For example, Peter Singer and Helga Kuhse Should the Baby Live? The Problem of Handicapped Infants, Oxford University Press, Oxford, 1985
[153] The Northern Territory law was overturned by the Euthanasia Laws Act 1997 (Cth).
[154] A 1997 study reported that 1.8% of deaths in Australia are by voluntary euthanasia or physician assisted suicide; 3.5% of deaths involved termination of the patients life without explicit request; in 24.7% of deaths treatment was withheld or withdrawn with the intention to hasten death; and, in 6.5% of deaths opioids were administered with at least the partial intent to hasten death: H Kuhse, P Singer, P Baume, M Clark, M Rickard, ‘End-of-life decisions in Australian Medical Practice.’ Med J Aust 1997; 166: 191-196; A study conducted in 2001 reported that 36.2% of general surgeons surveyed reported that they had given drugs in doses greater than was necessary to relieve symptoms with the intention of hastening death; 20.4% reported that they had given drugs with the intention of hastening death, but without the explicit request of the patient; 1.9% reported assisting with a suicide; and 4.2% reported having acceded to requests for voluntary euthanasia: C Doughlas, I Kerridge, K Rainbird, J McPhee, L Hancock, A Spigelman ‘The intention to hasten death: a survey of attitudes and practices of surgeons in Australia. Med J Aust 2001; 175.
[155] In 1987, Kuhse and Singer reported that 62% of doctors surveyed thought it was right for a doctor to take active steps to bring about the death of a patient who has requested the doctor to do this: H Kuhse and P Singer ‘Doctor’s practises and attitudes regarding voluntary euthanasia’ Med J Aust 1988, 148: 632-627; A 1993 survey conducted by Baume and O’Malley reported that 59% of doctors thought hastening death on request was sometimes right: P Baume and E O’Malley ‘Euthanasia: attitudes and practices of medical practitioners’ Med J Aust, 1994; 161; 137-144; see also C A Stevens, R Hassan ‘Management of death, dying and euthanasia; attitudes and practices of medical practitioners in South Australia’ J Medical Ethics 1994; 20: 41-46; I Wilson, B Kay, I Steven, ‘General Practitioners and euthanasia.’ Aust Fam Phys 1997; 26: 399-401; M A Steinberg, J M Najman, C M Cartwright, S M MacDonald, G M Williams ‘End-of-life decision-making: community and practitioner perspectives. Med J Australia 1997; 166: 131-134 C M Cartwright, G W Robinson, M A Steinberg, G M Williams, J M Najman, WB Tyler, ‘End-of-life decision making perspectives of Northern Territory Doctors, Nurses and Community Members’ The Lancet, 1997; 349; 9051:477; H Kuhse and P Singer, ‘Euthanasia: a survey of nurses attitudes and practices’ 1992 Australian Nurses Jnl 21, 8:21-22; S Aranda and M O’Connor, ‘Euthanasia, nurses and care of the dying: Rethinking Kuhse and Singer’ 1995 Australian Nursing Jnl. 3, 2:18-21; B A Kitchener ‘Nurses’ attitudes to active voluntary euthanasia: a survey in the ACT’ 1998 Aust. NZ Journal of Public Health 22, 2:276-8; J Iliffe ‘Nurses’ attitudes to voluntary euthanasia 1998 Journal of the NSW Nurses Association 55, 1:37-9; C M Cartwright et al Community and Health/Allied Health Professionals Attitudes to Euthanasia: what are the driving forces? Report to the National Health and Medical Research Council, University of Queensland School of Population Health 2002.
[156] See for example: Re MC [2003] QGAAT 13; BTO [2004} WAGAB 2; Re AG [2007] NSWGT 1
[157] See for example: Gardner; Re BWV [2003] VSC 173; Northbridge v Central Sydney Area Health Service [2000] NSWSC 1241; Isaac Messiah (by his tutor Magdy Messiha) v South East Health [2004] NSWSC 1061.
[158] NSW Ombudsman, Report of Reviewable Deaths in 2005: Volume 1: Deaths of people with disabilities in care 2006 at 28
[159] For a discussion of the difficulties of determining when treatment is futile see: I Kerridge, K Mitchell and J McPhee “Defining Medical Futility in Ethics, Law and Clinical Practice: An Exercise in Futility?” (1997) 4 Journal of Law and Medicine 235.
[160] Gardner; re BWV [2003] VSC 173
[161] A good example of this is: Re AG [2007} NSWGT 1 (5 February 2007); for background see C Stewart Problems with Substitute Decision-Making in NSW Bioethical Inquiry (2006) 3: 127-131 and WK v Public Guardian (No 2) [2006] NSWADT 121.
[162] K Savell ‘Human Rights in the Age of Technology: Can Law Rein in the Medical Juggernaut?’ [2001] SydLawRw 19; 2001 23 Sydney Law Review 423
[163] For a discussion of this issue see B White and L Willmott, Rethinking Life-Sustaining Measures: Questions for Queensland: An Issues Paper reviewing the legislation governing withholding and withdrawing life-sustaining measures, Queensland University of Technology, February 2005 at 77-80.
[164] Statutory provisions vary significantly across Australian jurisdictions. However, in most jurisdictions the term ‘medical treatment’ has been interpreted broadly to include such procedures, and this is also the case at common law: Gardner; re BWV [2003] VSC 173; Re MC [2003] QGAAT 13; BTO [2004] WAGAB 2.
[165] Re Marion [1992] HCA 15; (1992) 175 CLR 218 at 309-310
[166] The paragraph was added to the draft text in the course of the Eighth Session of the Ad Hoc Committee, and the issues it agitates were discussed at the Committee’s Third (2003), Fifth (2005) and Seventh (2006) sessions, and in the Ad Hoc Committee Working Group also held in 2003; for summaries of discussions see http://www.un.org/esa/socdev/enable/rights/adhoccom.htm
[167] For an overview of the Schiavo case see: D Mendelson and M Ashby “The medical provision of hydration and nutrition: two very different outcomes in Victoria and Florida J Law Med 2004; 11: 282-291; T A Faunce and C Stewart The Messiha and Schiavo cases: third-party ethical and legal interventions in futile care disputes. Medical Journal of Australia Vol 183 No 5 at 261-263.
[168] Re MC [2003] QGAAT 13; BTO [2004} WAGAB 2; Gardner; Re BWV [2003] VSC 173; Northbridge v Central Sydney Area Health Service [2000] NSWSC 1241; Isaac Messiah (by his tutor Magdy Messiha) v South East Health [2004] NSWSC 1061.

[169] Gardner; re BWV [2003] VSC 173
[170] At the time of writing this issue remains unresolved.
[171] For an overview of this debate see: F Menghistu “The Satisfaction of Survival Requirements,” in B G Ramcharan (ed) The Right to Life in International Law, Dordretcht 1985 at 63 – 83.
[172] See, for example, Y Dinstein, “The Right to Life, Physical Integrity, and Liberty,” supra note 36 at 114-137.
[173] F Menghistu supra note 169 at 64.
[174] Ibid
[175] Article 28, Convention on the Rights of Persons with Disabilities
[176] Criminal Code Act, 1924 (Tas), Chapter XVI; Criminal Code Compilation Act, 1913 (WA), Part V; Division XXVII; Crimes Act, 1900 (NSW), s 44 (applies to wife, apprentice, servant and insane persons); Criminal Code Act, (NT), Part VI, Division 1; Criminal Law Consolidation Act, 1935 (SA), Section 14; Criminal Code Act, 1899 (Qld) section 285. Most States and Territories have similar provisions in relation to those with responsibility for the care and support of children.
[177] Coroner’s Act 1997 (ACT) s 13; Coroner’s Act, 1980 (NSW) Part 3, Division 1; Coroner’s Act (NT) Part 4 Division 1; Coroner’s Act 2003 (Qld) Part 3, Division 1; Coroner’s Act 2003 (SA) s 21; Coroner’s Act, 1995 (Tas) s 21; Coroner’s Act, 1985, Part 5.
[178] Persons ‘in care’ are defined as those living in supported accommodation which is funded or licensed by Government.
[179] NSW Council for Intellectual Disability and People with Disabilities (NSW) Inc were the most active in this campaign.
[180] See for example, Community Services Commission, Report on Nutritional and Mealtime Practices For People with Developmental Disabilities in Residential Care 1997; Community Services Commission, Cram House – Inquiry into care and treatment of residents, 1998; Community Services Commission A Critical Event at the Grosvenor Centre, Review by the Disability Death Review Team of the Critical Event at the Grosvenor Centre, 2000; Community Services Commission Disability, death and the responsibility of care . A review of the characteristics of 211 people with disabilities who died in care between 1991 and 1998 in NSW, 2001; Community Services Commission, Young Deaths – Children with Disabilities in Care. A review of the deaths of eight children and young people at the Mannix Children’s Centre, 2002; Community Services Commission Food for thought ... a report card on nutritional and mealtime practices in accommodation services for people with disabilities – 1997 to 2002, 2002.
[181] The Community Services Commission was established in 1993 as an independent watchdog agency for community and disability services provided or funded by the New South Wales Government. It was abolished in 2002 and its functions absorbed by the NSW Ombudsman.
[182] The Disability Death Review Team was originally established as a Ministerial initiative under the general powers of s 83 and 84 of the Community Services (Complaints, Reviews and Monitoring Act), 1993 with administrative responsibility reposed in the then Community Services Commission. In 2002 the Disability Death Review Team was provided with a specific statutory basis under Part 6 of the Act and administrative responsibility transferred to the NSW Ombudsman.
[183] Community Services (Complaints, Reviews and Monitoring) Act, 1993, Part 6.
[184] NSW Ombudsman Report of Reviewable Deaths in 2005: Volume 1: Deaths of people with disabilities in care, 2006; NSW Ombudsman Report of Reviewable Deaths in 2004; NSW Ombudsman, (2004) Reviewable Deaths Annual Report 2003-2004, 2005; see also reports cited at note 84.
[185] Ibid ‘Ombudsman’s Message.’
[186] This disability death review function is additional to, rather than a replacement of, the role traditionally undertaken by the Coroner. 187 In fact, in parallel with the establishment of the disability death review function in the Ombudsman, specific jurisdiction was conferred on the NSW Coroner to review such deaths: Coroner’s Act, 1980 (NSW) s 13A; similar jurisdiction has now been conferred on the Queensland Coroner: Coroner’s Act 2003 (Qld) ss 9 and 11.
[188] Article 6(2) Convention on the Rights of the Child
[189] By virtue of Article 2 Convention on the Rights of the Child
[190] K Lui, B Bajuk, K Foster, A Gaston, A Kent, J Sinn, K Spence, W Fischer, D Henderson-Smart ‘Perinatal care at the borderlines of viability: a consensus statement based on a NSW and ACT consensus workshop.’ Medical Journal of Australia 185(9) 2006; 495-500; P Barr, ‘Relation of neonatologists’ end-of-life decisions to their personal fear of death,’ Archives of Diseases in Childhood Fetal and Neonatal Edition 2007.doi:10.1136/adc.2006.094151.
[191] P Barr supra note 187
[192] Depending on the specific fact situation and the jurisdiction in which it occurred such conduct may constitute unlawful homicide, failure to provide necessities of life, or child neglect.
[193] Older children and young persons with severe disability are also highly susceptible to decisions to withhold or withdraw life-sustaining treatments, particularly during periods of health vulnerability (discussed following)
[194] Lui et al supra 187.
[195] Ibid; National Health and Medical Research Council, Discussion Paper on the Ethics of Limiting Life Sustaining Treatment, Canberra, 1988; C Newell, ‘A Critical Evaluation of the NH&MRC’s The Ethics of Limiting Life Sustaining Treatment and Related Perspectives on the Bioethics of Disability’ Australian Disability Review 1991 (4) 46-57.
[196] National Health and Medical Research Council,1988, supra, note 192.
[197] C Newell, ‘A Critical Evaluation of the NH&MRC’s The Ethics of Limiting Life Sustaining Treatment and Related Perspectives on the Bioethics of Disability.’ Australian Disability Review 1991 (4) 46-57.
[198] Australia has a gross domestic product equivalent to $US29,632.00 per capita and is ranked seventh in the world; Australia is ranked third (behind Norway and Iceland) in the United Nations Human Development Index (both 2003 figures): United Nations Development Programme, Human Development Report 2005: International cooperation at a crossroads; Aid, trade and security in an unequal world, 2005; For a profile of government services in Australia, including those available to persons with disability (Chapter 13), see Australian Government, Productivity Commission, Report on Government Services, 2007.
[199] The Committee on Economic, Social and Cultural Rights outlines the requirements of the principle of progressive realisation in its General Comment No 3: The Nature of States Parties Obligations, 1990 HRI/GEN/1/Rev 8 at paragraph 9 and 10.
[200] These include at the Commonwealth level the Healthcare Card, Pension Concession Card, and Continence Aids Assistance Scheme, and at the State and Territory levels transport concessions, the taxi subsidy scheme, and aids and appliance assistance schemes.
[201] P Saunders Disability, Poverty and Living Standards: Reviewing Australian Evidence and Policies. Social Policy Research Centre Discussion Paper, 2005 at 4-8.
[202] See for example: J Frisch, ‘Towards a Disability Allowance: Offsetting the Costs of Disability – An Analysis, Physical Disability Council of Australia, Northgate, Queensland 2005; C O’Neill, C The Non-Optional Costs of Blindness: Can we count the costs? Blind Citizens Australia unpublished paper 2002.
[203] P Saunders supra note 198 at 8/9.
[204] For example, the Commonwealth funds a range of early intervention and parent support services for vulnerable families under its ‘Communities for Children Program.’ Similar services are funded at the State and Territory level; for example, the New South Wales Government funds an extensive network of early intervention and family support services under its ‘Families First’ Program.
[205] Australian Senate Standing Committee on Community Affairs, Funding and operation of the Commonwealth State/Territory Disability Agreement, Commonwealth of Australia 2007 at 91ff; Australian Institute of Health and Welfare, Therapy and equipment needs of people with cerebral palsy and like disabilities in Australia, Disability Series, December 2006; L Dowling, Children who live with equipment: Report to the Department of Ageing, Disability and Home Care, Issues Paper February 2002 (unpublished).
[206] Australian Senate Standing Committee on Community Affairs 2007 supra note 202 at 91.
[207] Senate Standing Committee on Community Affairs, supra note 202 chapter 4 ‘Unmet Need.’
[208] Australian Senate Select Committee on Mental Health, A National Approach to Mental Health – from crisis to community, First Report 2006, Commonwealth of Australia: see especially chapter 4 ‘Resourcing.’ Mental Health Council of Australia and Human Rights and Equal Opportunity Commission, Not for Service – Experiences of injustice and despair in mental health services in Australia, Mental Health Council of Australia, 2005.
[209] Mental Health Council of Australia and Human Rights and Equal Opportunity Commission, Not for Service – Experiences of injustice and despair in mental health services in Australia, supra.
[210] Australian Senate Select Committee on Mental Health, A National Approach to Mental Health – from crisis to community, First Report 2006, Commonwealth of Australia: see especially chapter 13 ‘Mental Health and the Criminal Justice System; see also, NSW Coroner, Inquest into the Death of Scott Ashley Simpson, July 2006; S v Secretary, Department of Immigration & Multicultural & Indigenous Affairs [2005] FCA 549
[211] However, two recent positive developments are the introduction of a National Auslan Interpreter Booking and Payment Service (NABS), which provides free Auslan interpreting for deaf persons attending private medical appointments, and changes to Medicare health insurance rebates which allow longer health checks for people with intellectual disability.
[212] See generally, J Bridge-Wright 'Waiting to be Included - Breast and Cervical Cancer Screening, Where are the Women with Disabilities?' A paper presented by Jenny Bridge-Wright on behalf of Women With Disabilities Australia (WWDA) to the Inaugural Conference on Social Aspects of Disease, Disability and Disablement, Melbourne 1 July 2004
[213] See generally: A Baker, R W Ivers, J Bowman, T Butler, F J Kay-Lambkin, P Wye et al ‘Where there’s smoke, there’s fire: high prevalence of smoking among some sub-populations and recommendations for intervention.’ Drug and Alcohol Review 2006 25: 85-96.
[214] L Stewart, H Beange, D McKerras ‘A Survey of dietary problems of adults with learning disabilities in the community’ 1994 Mental Handicap Research 7, 41-50.
[215] H Beange, A McElduff, W Baker, ‘Medical Disorders of adults with mental retardation: a population study 1995 AJMR 99: 595.
[216] National Health and Medical Research Council, 1988 supra note 192; for a critical review of this discussion paper see Newell, C. ‘A Critical Evaluation of the NH&MRC’s The Ethics of Limiting Life Sustaining Treatment and Related Perspectives on the Bioethics of Disability’ Australian Disability Review 1991 (4) 46-57.
[217] G D Slade, A J Spencer, K F Roberts-Thomson, (eds). Australia’s dental generations: the National Survey of Adult Oral Health 2004–06. AIHW cat. no. DEN 165. Canberra: Australian Institute of Health and Welfare (Dental Statistics and Research Series No. 34). 2007; A Scott, L Marsh , M I Stokes, ‘A survey of oral health in a population of adults with developmental disability: comparison with a national oral health survey of the general population” 1989 ADJ 43; 257-261.
[218] Article 11, Convention on the Rights of Persons with Disabilities.
[219] Australian Building Codes Board Building Codes of Australia, 2006.
[220] For example, Department of Human Services Victoria, (2002) Fire safety for disability accommodation services, Second Edition.
[221] There is no published Australian research in this area, however, Australian emergency response plans tend to mirror the shortcomings evident in the United States in responses to Hurricanes Rita and Katrina: National Council on Disability, (2006) The Impact of Hurricanes Rita and Katrina on People with Disabilities: A Look Back and Remaining Challenges. http://www.ncd.gov/newsroom/publications/2006/hurricanes_impact.htm (accessed 16 February 2007); National Council on Disability. (2006) The Needs of People with Psychiatric Disabilities During and After Hurricanes Katrina and Rita: Position Paper and Recommendations http://www.ncd.gov/newsroom/publications/2006/peopleneeds.htm (accessed 16 February 2007).
[222]In 1995, a Pakistani refugee, Shahraz Kayani, successfully claimed asylum in Australia. His wife, Yasmin, then made repeated attempts to get approval for her and their three children, one of whom had cerebral palsy, to come to Australia. Each of these applications was unsuccessful because the Australian Department of Immigration determined that the Australian community could not afford the cost of supporting the child with cerebral palsy over the course of her lifetime. In desperation at his separation from his family, his fears for their safety in Pakistan, and at the policy and attitudes of the Australian government in relation to his daughter’s disability, Mr Kayani doused himself with petrol and set himself on fire on the steps of Australia’s Parliament House. He subsequently died from his injuries. See further: Commonwealth Ombudsman, Report on the Investigation into a Complaint about the Processing and Refusal of a Subclass 202 (Split Family) Humanitarian Visa Application, 2001.