Art.10 Right to Life
Edited By: Ilias Bantekas, Michael Ashley Stein, Dimitris Anastasiou
- Right to life — Disability — Jurisdiction
State 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.
The CRPD celebrates the lives of persons with disabilities. The right to life accorded by the Convention carries a significant position among other rights to facilitate this celebration of life with disabilities. As such the right to life is far reaching, which encompasses the right to live, survive, and develop on an equal basis with others. Significantly, the Convention casts its effectiveness on the state. Thus, states parties are under an obligation or legal responsibility to take measures for the effective enjoyment of the right to life. Hence, article 10 gives rise to a substantive right, with immediate enforceability. This is to ensure quality of life in all spheres of the life of persons with disability. It reflects the concern of the Convention to consider the lives of persons with disabilities as possessing the same value as those of any other human being. This wider dimension of value of life is essential, because persons with disabilities have traditionally been treated as lesser human beings.
The Convention brought a paradigm shift against this social prejudice, by recognizing the inherent dignity of persons with disabilities and provides a wide range of basic rights. All those rights are further strengthened by the right to life. The drafters of the CRPD have designed the right to life as facilitating the provision of ‘life’ to other basic rights. While References(p. 288) reiterating the inherent right to life of all human beings, the CRPD strongly reaffirms it in respect of persons with disabilities. Hence, it is worthwhile to explore the efforts made by the drafters to frame this single, but all-encompassing right. We will further examine the wider meaning of the right to life and its application. This will be followed by tracing the interpretation given by the CRPD Committee in its concluding observations. In order to understand the micro-level application of the right, we shall examine the interpretation and its application by domestic and regional courts. Finally, we shall explore the individual complaints made under the optional protocol and the consequent interpretation provided. This shall be done to define the jurisprudence surrounding the right to life and the required measures to strengthen and facilitate its wider application as envisaged under the Convention.
The scope of the right to life is far reaching, in the sense that it is inclusive and facilitative of other rights. The right to life was included in the Convention mainly in view of the stereotypes prevailing in society against a life with disability.1 The lives of persons with disabilities are under threat because others often think that a disabled life is not worth living.2 This cautioned the drafters to include the ‘right to survive’ as an integral meaning or purpose of the right to life. This is evident from the Chair’s draft text (December 2003) of the Convention, which stated in article 12 that:
Every person with disability has the inherent right to life and survival. This right shall be protected by law. No one shall be arbitrarily deprived of his or her life.3
The original draft reflects the CRPD’s emphasis as to the ‘inherent’ nature of the right to life. The qualifier ‘inherent’ has been attached to this article to display its supremacy. The right to life is an inborn right of each individual and exists simply by virtue of being ‘human’.4 Therefore, states become ‘exclusive responsibility holders’5 to take all appropriate measures to facilitate the effective enjoyment of the right to life. The inherent quality of the right to life is also linked to the unsettled debates about the meaning of the terms ‘human’ and ‘person’.
It is noteworthy that the pre-working group language in the original draft referred to the term ‘person’ to specify persons with disabilities. However, the pre-Working group team had not used the term ‘human being’ or ‘human life’. The determined choice of this term points towards the earnest effort on the part of the CRPD drafters to recognize all persons with disabilities as complete human beings. The recognition of the right to life as an absolute right can be derived only by accepting a person with disability as an independent and autonomous being with full personhood. The WNUSP made the point that ‘[e]very human being is a person. The status of personhood shall not be deprived on account of (p. 289) actual or perceived disability.’6 A special category worthy of mention are the unborn at risk of abortion because of their disabilities. If the unborn is not viewed as a person then it may be disposed of without any sanctions on the basis that it does not possess, nor will it ever possess. It is worthwhile to note the argument that, ‘human beings even in the earlier stages of life, and irrespective of age or size or disabilities, must not be subjected to discriminatory, arbitrarily defined, logically inconsistent and vexatious tests of personhood’.7
The presence of ‘pro-life’ and ‘pro-choice’8 supporters among the delegates of the Ad Hoc Committee created a stalemate as regards the term ‘person’ to refer to persons with disabilities. This stalemate was generated on account of the theoretical difference between ‘human being’ and ‘person’.9 It has a bearing on the issue of when life begins, and whether legal protection to life is available both before and after birth.10 The statements of delegates on article 10 at the Ad Hoc Committee are informative of the perception of the right to life among different participants. Representing the Marshall Islands, Mr Capelle stated that:
The Marshall Islands understands that article 10 guarantees the ‘right to life’ of disabled persons from the moment of conception and throughout their natural lives until natural death.11
The Holy See also referred to the right to life, while making its statement on article 25 (right to health), specifically by reference to sexual and reproductive health.12 Representing the Vatican, Archbishop Migliore stated that:
… we opposed the inclusion of such a phrase in this article, because in some countries reproductive health services include abortion, thus denying the inherent right to life of every human being, as References(p. 290) affirmed by article 10 of the Convention. It is surely tragic that, wherever foetal defect is a precondition for offering or employing abortion, the same Convention created to protect persons with disabilities from all discrimination in the exercise of their rights may be used to deny the very basic right to life of disabled unborn persons.13
The delegates of the Philippines, Peru, and Costa Rica also referred to the right to life, in connection with right to health.14 Similarly, Costa Rica stated that:
the reference in the Convention to the concept of sexual and reproductive health does not constitute a new human right or, still less, imply relativization or negation of the right to life, which we regard as the source of all rights.15
While referring to the right to health, the delegation of the Philippines remarked that it is of the belief that:
the provision of health care and all other services should not in any way undermine the right to life of a person, with or without a disability, in all stages of his or her being.16
The above statements show the intermittent link between the right to life and pro-life arguments. Although disability rights advocates may be ‘pro-choice’ or ‘pro-life’ for reasons unrelated to disability rights, many disability rights advocates, regardless of their positions on abortion, also find that ‘pro-life’ policies coincide with their view that abortions should not be used to discriminate against children who may be born with disabilities.17
Consequent to the above arguments, in fact, the Council of Europe did request that ‘persons’ replace the term ‘human being’ in the context of the ‘right to life’ article in order to avoid the issue of when life begins.18 The term ‘human being’ was proposed by the Facilitator so that the language here would match that of the International Covenant on Civil and Political Rights (ICCPR).19 Thus, the most noteworthy change that occurred to the right to life was replacing the term ‘person’ with ‘human being’. The terminology of ‘person’ evinces the heightened human rights outlook of the CRPD in affirming that the right to life for persons with disabilities is of an inherent nature.
The original draft underlines the ground level reality of the vulnerability of life with disabilities. A life with disability is always at the risk of existence, as persons with disabilities have traditionally been treated as lesser human beings. Therefore, in the past no need was felt to protect the life of persons with disabilities in any distinct way. The CRPD represented a turning point in this respect. Hence, the right to life provision was framed particularly in order to protect persons with disabilities from any risk to their life. However, a more refined provision was provided for the right to life in the submitted draft for negotiation. It read:
States Parties reaffirm the inherent right to life of all persons with disabilities, and shall take all necessary measures to ensure its effective enjoyment by them.20
References(p. 291) This draft article opened the door by which to discuss many issues that are central to and at the same constitute a comprehensive part of right to life. Each term of the draft article was debated to establish the CRPD human rights perspective in a clear manner.
The right to life draft article (article 8 in the original) was discussed for the first time in the third session of the Ad Hoc Committee (24 May–4 June 2004),21 which marked the beginning of the discussions. The working group members had expressed different views about the need to have such an article in the Convention and also its content. The discussions outlined various facets of this right and how it specifically affects persons with disabilities. In particular, the primary concern was on the ‘effective enjoyment’ of this right during high-risk situations, such as armed conflict and natural disaster. During the discussions, a question was raised whether such extreme situations of humanitarian emergencies should be dealt with as part of right to life.22 Jordan, Yemen,23 Palestine, Lebanon, and Uganda, among others, suggested expanding the responsibility of states to protect the right to life of civilians in such situations to include persons with disabilities.24 This was proposed in order to expand the existing human rights obligations of states under existing treaties25 for the protection of civilians from armed conflict and humanitarian disasters. The mere fact of disability was viewed as justifying sacrificing the life of a disabled person in the course of a humanitarian crisis, whereas the same is not true in respect of non-disabled persons. Therefore, consequent to the above discussion, some members of the Working Group suggested that the Convention should contain a separate draft article on the protection of the rights of persons with disabilities in armed conflict, similar to the approach taken in article 38(4) of the Convention on the Rights of the Child.26 It was also suggested that such an article could deal more broadly with the protection of the rights of groups facing a particular risk.27
In particular, Yemen, on behalf of the Arab Group, proposed a new two-part draft article 8(b), with added reference to ‘armed conflicts, occupations, and wars.’ These were References(p. 292) viewed as creating special conditions impacting PWD, and Yemen expressed readiness to look at any ways and means to enhance the text. They reminded the delegates that PWD in countries experiencing armed conflict, refugee situations, or those facing military occupation deal with problems of such severity as they do with cases of suicide. All delegates were encouraged to ‘strive to protect the disabled laboring under such travail’ by adding a reference to ‘persons under the yoke of occupation’.28
The draft history of article 11 (on humanitarian situations where life is at risk) shows that Costa Rica was the first to suggest a separate provision on ‘special situations’ as the issue emerged in the debate over the right to life. The discussion at the Ad hoc Committee was supportive as the fifth session of the Ad Hoc Committee took place only four weeks after the December 2004 tsunami. The Facilitator for the right to life suggested a new article, which referred to ‘situations of risk to the general population’ and persons with disabilities being ‘especially vulnerable’; it used language from article 38(4) CRC on ‘all feasible measures’. There was some discussion as to whether situations of risk should be specified. Again, the reference to ‘armed conflict’ triggered a ‘classic’ UN human rights debate over a possible reference to ‘foreign occupation’—in UN terms a codeword for the Israeli/Palestinian conflict.29
This resulted in the framing of a new article to address the responsibility of states to ensure protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies, and the occurrence of natural disaster.30 However, this exercise was completed after discussing the need to add an equal treatment provision for the enjoyment of the right to life.
Given the inferior value attached to the lives of persons with disabilities, it was evident that their protection from the calamities of a situation at risk would take second place as compared to non-disabled persons. In the absence of a disability-specific human rights affirmation for the right to life of persons with disabilities, their vulnerability would remain the same. It was therefore necessary to emphasize the need for equal treatment. Thus, the reality of discrimination was taken care of by the drafters in the subsequent sessions. This was done in order to recognize the value of life for persons with disabilities on an equal basis with others.
The fourth session was held with an aim to clarify as many of the issues concerning the draft articles as possible. There was general agreement to include an article on the right to life supporting the text prepared by the Working Group.31 However, New Zealand raised the need to clear the ambiguity concerning this right. The New Zealand delegate noted that the first part of this article replicates language used in previous instruments, but the second part, ‘shall take all necessary measures’, was new and could imply preferential treatment.32 New Zealand, therefore, suggested an amendment to add ‘on an (p. 293) equal basis with others’ to resolve this problem.33 The delegates from Costa Rica, Canada, and Mexico explicitly supported this qualification of the right. Finally, it was agreed to strengthen the right by adding ‘on an equal basis with others’.34 The phrase acknowledges the ground level discrimination that persists against persons with disabilities and the consequent denial of basic rights. The responsibility of the state to treat persons with disabilities on an equal basis with others reflects the comprehensive human rights stand of the CRPD. While it affirms inherent dignity for all, it reassures that this also true for persons with disabilities, who in the past were denied such rights.35 That is why, after strengthening the right by adding the phrase ‘equal basis’, the delegates expressed an overwhelming concern to broaden the article to include situations of risk.
Although some delegations proposed broadening the draft article to include situations of risk, such as natural disaster, armed conflict, and foreign occupation, other delegations had difficulty with this and supported a more streamlined approach. During the fourth session, delegations from countries such as Jordan, China, and Chile expressed their concern by the association of the right to life with situations of risk, such as armed conflict. At the same time Mexico, India, and Lebanon supported the inclusion of an independent provision on this matter elsewhere in the CRPD.36 Canada and the USA opposed reference to armed conflict.37 The international Disability Caucus (IDC) supported the reference to armed conflict since it felt there was a need to ensure the safety of persons with disabilities during such emergency situations. There was concern regarding equality for persons with disabilities in contexts of this nature. For instance, Uganda supported the original formulation of the right to life in draft article 8, expressing its desire that it include a paragraph addressing armed conflict. The delegate of Uganda suggested the following formulation:
In accordance with their obligations under international humanitarian law to protect civilian population in armed conflicts and risk situations, states parties shall take all feasible measures to ensure the protection and care of all persons with disabilities who are affected by armed conflicts.38
Taking account of those differing views to include situations of risk, the facilitator proposed the following wording:
States parties recognize that in situations of risk to the general population persons with disabilities are especially vulnerable and shall take all feasible measures for their protection.39
It was noted that the phrase ‘all feasible measures’ was drawn from paragraph 4 of article 38 of the Convention on the Rights of the Child. However, there was a divergence of views on whether the wording of draft article 8 bis should be further elaborated to include specific instances of situations of risk. The issue was referred to the facilitator for further discussion with the delegations. Finally, since there was a clear understanding that References(p. 294) the right to life was threatened increasingly in situations of armed conflict, humanitarian emergencies, and natural disasters and as a result it was decided to address this issue separately with an independent article.40
With these issues having been resolved, the delegates were very particular to discuss two more issues, the right to survival and development and prenatal abortions as part of right to life. The terms ‘reaffirm’ and ‘shall take all necessary measures’ in respect of the right to life have been used to strengthen the text and make it clear that the ‘right to life’ includes the ‘right to survive’.41 In the third session of the Ad Hoc Committee India supported the ‘right to survival and development’ as an integral meaning of right to life.42 It was proposed to add that: ‘states parties shall ensure to the maximum extent possible the survival and development of persons with disabilities’.43 In the same session the NGO World Federation of Deaf and Blind recommended changing the title of the provision to ‘Right to Life, Survival and Development’. Supporting India, it also suggested adding a second paragraph to read that: ‘the right to life includes the right to survive’ with the following additional language: ‘States parties shall take all necessary measures to ensure its effective enjoyment by women, men, girls and boys in all stages of life.’44 Save the Children International (SCI), speaking also on behalf of Handicap International, agreed that the provision encompassed all persons with disabilities, including children. It supported the proposal of Argentina, India, and others on the concept of survival and development and suggested modifying the article’s title in order to render it consistent with core principles of the right to life, survival, and development contained in article 6 of the Convention on Rights of the Child (CRC) and in order to reflect ‘not only the right to life as such, but the right to survive’.45 It suggested an additional paragraph as follows:
Children and young people have right to physical, mental, spiritual, moral and social development to the maximum extent possible.46
Whilst agreeing with the Working Group’s text of the right to life article, the Landmine Survivors Network (LSN) commented that serious consideration should be given to India’s proposal reflecting the CRC approach.47 Since delegations could not concede on this aspect the discussions were moved forward to the fourth session. At the fourth session the delegates References(p. 295) of Eritrea supported India’s suggestion to add a second paragraph to the right to life.48 The International Disability Caucus reiterated its previously stated position.49 It submitted that the right to survival and development had already been included in the CRC, so this was not unusual or controversial. It expressed concern with the notion that disability could be used as a ground for the termination of life, which in turn impacts on the very enjoyment of the right to life. This session also stands out because of the concerns raised for the pre-birth value of life with disability and the severity of undesirability for a life with disability.
During the third session, two Australian organizations, NACLC/People with Disabilities Australia Incorporated and the Australian Federation of Disability Organizations supported retaining the content of the draft article with an additional statement elaborating on rights related to the specific circumstances of persons with disabilities.50 A comprehensive debate over the above issues as part of the right to life has drawn the need to address the apprehension concerning genetic engineering and the consequent threat for the survival of a life with disabilities. Thus, the eugenic threat, a marked apprehension resulting from genetic engineering was also a concern for the delegates.51 In the third session, Inclusion International expressed its concern over the role of genetic engineering, noting that PWD constitute part of human diversity and bring unique contributions through their disability.52 ‘Don’t prevent us, include us’, was the slogan of this session. Inclusion International proposed an additional third paragraph that would state: ‘Disability must not become a justification for termination of life.’53
The Canadian Association of Living (CAL) supported the draft article and urged that genetics and biotechnology issues also be addressed. As parents, they expressed a concern that scientific and medical models may pose a ‘slippery slope toward genetic perfection’, which is detrimental to persons with disabilities. CAL expressed a need for the families of people with disabilities to be included in all discussions on bioethical issues and for recognition that ‘technology must sustain diversity and common humanity’.54
At the fourth session, the International Disability Caucus iterated its previous proposal for the title of the article.55 It further submitted that the right to life must be recognized at all stages of life,56 including infants—girls and boys. The IDC further clarified that disability is not a justification for the termination of life and because this issue impacts the enjoyment of the right to life it should be included in the final version.57 While the IDC took no position on the issue of abortion in general, it opposed compulsory abortion based on prenatal diagnosis. In turn, a discussion was required whether the right to life in the CRPD should address when life begins and whether legal protection to life is available both before and after birth.58 The IDC chose not to address this question and only References(p. 296) insisted that the value of a life with disability should be recognized and that all persons with disabilities should have the right to life.59 However, the other delegations opined that primary prevention may have significance for society at large but had no place in a convention concerned with the rights of persons with disabilities.60 The final text of article 10 on the right to life was unanimously accepted at the seventh session.61 No further discussions were held on article 10 and the Ad Hoc Committee adopted the draft of article 10 at its eighth session.62
The text of the right to life in the CRPD is consistent with that in core human rights treaties such as the UDHR, ICCPR, CRC, and the Convention on the Elimination of All Forms Discrimination Against Women (CEDAW). The paramount importance of this right was reiterated while drafting the ICCPR. Article 6(1) of the ICCPR provides that ‘Every human being has the inherent right to life. This right shall be protected by law. No one shall be arbitrarily deprived of his life.’
The adjective ‘inherent’ emphasizes the high hierarchical position of the right. The right has been seen as the outflow of a pre-positive stratum of law, namely jus naturale.63 The state responsibility envisaged is very explicit in the UN Human Rights Committee’s General Comment.64 The committee stated that:
The right to life has been too often narrowly interpreted. The expression ‘inherent right to life’ cannot properly be understood in a restrictive manner, and the protection of this right requires that States adopt positive measures. In this connection, the Committee considers that it would be desirable for States parties to take all possible measures to reduce infant mortality and to increase life expectancy, especially in adopting measures to eliminate malnutrition and epidemics.65
The ICCPR thus holds that the right to life concerns the inherent value of all human beings. It is a right not to be arbitrarily deprived of life.66
References(p. 297) If we look into other treaties and their stance on the right to life, we can see that it is envisaged as recognizing the inherent value of human beings. Article 6(1) of the CRC explicitly states that state parties recognize that every child has the inherent right to life. The statement of the CRC Committee on the right to life of children with disabilities shows the significance of this ‘inherent’ nature of right to life. It states:
States must create an environment that respects human dignity and ensures the holistic development of every child. In the assessment and determination of the child’s best interests, the State must ensure full respect for his or her inherent right to life, survival, and development.67
This points to state responsibility to protect the right to life of every child, respecting his or her inherent value of life.68 Thus, evidently, the right to life occupies a high position in the hierarchy of human rights law. The right to life in human rights jurisprudence is based on the need to protect the dignity and value of human life. Therefore, in the CRPD, the requirement that states ‘ensure its effective enjoyment’ deviates from the standard clauses on the right to life, leading to a broad interpretation of the right. The main cause for this formulation is the fact that regularly the lives of persons with disabilities are devalued as not ‘worth living’ and thereby their elimination is justified. The right to life accorded in the CRPD thus reinforces the respect for the ‘inherent dignity’ of all persons.69
Regional and domestic courts are still at a nascent stage in their interpretation of article 10 CRPD, evidently relying more on domestic laws or general international law, as well as regional human rights law. This is evident, for example, in the case of Glass v UK70 where the parents of an intellectually disabled child challenged the Do not Resuscitate Order of the hospital authorities. The ECHR held that even though the decision of the hospital had violated article 8 ECHR, the interference was justified as it had been in accordance with the law.71 Can and should article 10 CRPD be applied in such difficult cases to provide persons with intellectual disabilities greater protection for their right to live?72 This enthusiasm or sceptics was raised by Andreas Dimopoulos, who considers the right to life under article 10 CRPD as very important for persons with intellectual disabilities.73
There are, however, a limited number of cases where the courts have specifically referred to the CRPD. In Valentine Campeanu v Romania,74 an NGO, the Centre for Legal Resources, was allowed to bring a case before the ECtHR on behalf of a young Roma man who died in a psychiatric hospital. He had been unlawfully deprived of his life, having References(p. 298) been subjected to inhuman and degrading treatment. The ECtHR, in finding a violation of articles 2 (right to life) and 8 (right to an effective remedy) ECHR, referred to article 10 CRPD, along with articles 5, 12, and 13 CRPD as relevant international law.75
A similar trend may be found in some, but relatively few, domestic jurisdictions. For instance, in India, the Bombay High Court in Ranjit Kumar v State Bank of India76 has relied on the principle of reasonable accommodation enshrined in the CRPD and linked it to the right to life guaranteed in the Indian Constitution. In this case, the petitioner was declared medically unfit for employment as an officer in the State Bank of India because he had previously undergone a renal transplant. The Bombay High Court rejected the bank’s contention and directed it to appoint the petitioner by providing reasonable accommodation in the form of medical expenses. The Court held that:
reasonable accommodation, if read into article 21 of the Indian Constitution guaranteeing the right to life, based on the Disabilities Convention, would not be in conflict with municipal law and on the contrary it would give added life and dimension to the ever expanding concept of life and its true enjoyment.77
In equal manner, the Serbian Constitution recognizes and protects the right to life and survival of all its citizens on equal terms with others, whereas in terms of the fact that human life is inviolable, no person, including a person with a disability, can be subjected to arbitrary deprivation of his/her life.78 Thus, the right to life is guaranteed to persons with disabilities on an equal footing with others.79 It is considered a criminal offence to breach in any manner the exercise of the right to life of persons with disabilities in the same manner as non-disabled persons.80 Serbia has ensured as a matter of policy and law the fulfilment of the paradigm shift introduced by the CRPD.81
The CRPD Committee has to date received two individual complaints claiming a violation of article 10 CRPD. In H M v Sweden82 a violation of article 10, along with several other rights, was claimed. The complaint centred on a refusal to grant a building permission for the construction of a hydrotherapy pool for the rehabilitation of a person with a physical disability on the ground that the requested extension was incompatible with the city’s development plan. Even though the Committee concluded that the CRPD had been violated, it was noted that the petitioner had not provided adequate evidence to substantiate the admissibility as to how article 10, along with articles 9, 14, and 20, might have been violated.83 The Committee’s view was clearly predicated on procedural grounds and hence missed a golden opportunity for a more comprehensive analysis.
At its eleventh session the CRPD Committee considered X v Argentina,84 wherein the author claimed a violation of articles 9, 10, 13, 14, 15, 17, 25, and 26 CRPD, through the state forcing upon him a custodial sentence. The case concerned a denial of home arrest, conditions of detention and access to adequate medical care and rehabilitation for References(p. 299) persons with disabilities while in detention.85 The Committee confirmed a violation of the CRPD by reference to Argentina’s failure to provide sufficient accommodation, resulting in a breach of articles 9, 17, and 14(2). The Committee rejected the existence of a violation of article 10, along with articles 15 and 25, considering that Argentina had availed the complainant all available domestic remedies, further claiming that he had not substantiated all of his claims.86
The CRPD has categorized the right to life as a fundamental civil right. Significantly, in its absence the realization of all other rights is a non-starter.87 Hence, article 10 retains a significant interrelationship with other rights. The overarching obligation of the state to take effective measures to ensure the enjoyment of the right to life on an equal basis is the foundation for equality and non-discrimination as prescribed in article 5 CRPD. Non-discrimination is an integral part of the right to equality envisaged in the CRPD.88 Hence, the CRPD embraces both the formal and substantive approaches to equality.89 The more substantive approach specifically prohibits discrimination on the basis of disability.90 Article 5 CRPD on equality and non-discrimination is thus inextricably linked to the right to life.
The interrelationship between articles 10, 5, and 25 has been analysed in research undertaken by this author,91 which challenged the legitimacy of disability-selective abortions. A pro-CRPD analysis on the legality of disability-selective abortions was done by examining the interplay between the right to life and its correlation to articles 5 and 25. The interrelationship between articles 10, 5, and 25 found that disability-selective abortions devalue persons with disabilities. An independent analysis of article 10 has provided an edge to charge disability-selective abortion as morally and legally problematic. The right to life was enunciated as a right to be born and the right to be different.92 Significantly, the CRPD maintains a studied silence on the primary prevention of disability, as prevention is not a disability rights issue, and hence, did not find place in the CRPD. This brilliant step shows the strong human rights perspective of the Convention. For the drafters it was deemed incoherent to deal at the same time with the termination of disability and the promotion of the rights of persons with disabilities.93
Article 5 CRPD explicitly addresses the right to equality and non-discrimination. The Convention accords unequivocal rights of equality and non-discrimination to persons with disabilities. The rights to life, inherent dignity, equality, and non-discrimination accord high value to the lives of persons with disabilities. While the right to equality in general affirms that all human beings are born free and equal, the CRPD perspective of equality envisages the same rights and respect to accommodate persons with disabilities despite their diversity.94 Hence, the CRPD embraces both the formal and substantive approaches to equality. This means that laws, policies, and programmes should not be discriminatory, and also that public authorities should not apply or enforce laws, policies, and programmes in a discriminatory or arbitrary manner.95 The application References(p. 300) of non-discrimination principles and the references found in article 4 CRPD96 should ensure that abortion laws do not discriminate on the basis of disability.97 Thus, we can see that equality and non-discrimination form the touchstone on which national legal frameworks must be assessed. When viewed through this lens, the right to life combined with right to equality and non-discrimination renders disability-selective abortion questionable. In particular, the strong non-discrimination emphasis of the CRPD and international disability law in general98 enables questioning the blanket legal sanction for disability-selective abortion. This author has questioned the legality of disability-selective abortion, by drawing the contradictory legal order on sex-selective abortion.
Whilst laws absolutely prohibit sex selection, they provide blanket permission for disability-selective abortions. In English law, the Abortion Act, 1967, provides intact provisions for selecting out a foetus with disabilities. Section 1(1)(d) of the law treats the physical or mental disability of the prospective child as a substantial risk. The substantial difference of English law from other laws, such as the Indian abortion law can be found in its ‘no time limit’ stand for disability-selective abortion. The original time limit of twenty-four weeks was revised, removing the upper time limit by introducing section 37 of the Human Fertilisation and Embryology Act, 1990. This shows the extent of the application of the law to prevent the birth of a person with disabilities and its undesirability towards life with disability. Although the Abortion Act does not apply in Northern Ireland, the majority of abortions are performed in Ireland on this ground. This is in furtherance of a 1938 well-known judgment, namely Rex v Bourne,99 which legalized abortions on grounds of ‘probable consequences of physical and mental wreck of women’.
The human rights paradigm of the CRPD has been further strengthened by the interrelationship between articles 10 and 25, the latter concerning the right to health.100
References(p. 301) 3.3 Right to Life and Right to Health of Disabled Persons
The rights to life and health are interlinked, as both aim to dignify the lives of persons with disabilities. Article 25 CRPD states in part that:
State parties recognize that persons with disabilities have the right to enjoyment of the highest attainable standard of health without discrimination on the basis of disability.
It further provides persons with disabilities the right of access to gender-sensitive, equal and non-discriminatory health services. The reference to reproductive health in article 25(a) CRPD is crucial, as there is an apprehension of international legitimization of abortion. A combined reading of the rights to life and health provided in the CRPD shows that the Convention only provided for secondary prevention of disability. Prevention envisaged under the right to health refers to minimizing further disabilities of persons with disabilities. Secondary prevention means and includes actions aimed at preventing impairments from causing permanent functional limitations or disability.101 No article in the Convention provides for the primary prevention of disability, as is otherwise the case with disability-selective abortion. The reason lies with the stand taken by the stakeholders of the Convention, who effectively agreed that primary prevention may have significance for society at large but had no place in a treaty concerned with the rights of persons with disabilities.102 Stefan Tromel, who represented the European Disability Forum, testifies:
When it was first proposed to have an article on the right to life, this proposal met with some opposition. The right to life is a hugely controversial issue, as there is no agreement within the UN on when life starts, and to open such a debate immediately becomes a debate about the right (or not) to abortion and euthanasia. The presence of pro-life activists throughout the negotiation process was a permanent reminder of the delicate nature of this discussion.103
The presence of members from different countries holding these divergent views meant that it was next to impossible to reach agreement on an explicit article outlawing ‘forced abortion’ based on the prenatal diagnosis of disability. The right to life endorsed by the CRPD does not explicitly mention the thematic issue of selective abortion by reason of disability, as it was not possible to cover it without entering into the delicate and never-ending discussion on whether life starts at conception or at birth.
Even so, the right to life accorded to persons with disabilities by the CRPD is a far-reaching one that recognizes the life of a person with disability as inherently worthwhile. The issues involved in disability selective abortions are not about the right to life of the foetus or right to abortion, it is about the right to life of persons with disabilities. This is significant, as can be analysed from the silence maintained by the CRPD on primary prevention of disabilities. The inclusion of a primary prevention provision would stigmatize persons with disabilities, negating disabled persons’ right to live. As commented by Tromel, ‘this was a deliberate decision taken by the Ad Hoc Committee and is one of the elements that reflect [sic] the paradigm shift from “disability” as an object to “persons with disabilities as subjects”’.104
This particular stand envisaged under the CRPD evinces the strong inner connectivity between the right to life and the right to health. Accordingly, the CRPD human rights perspective protects a life with disability by affirming its inherent value and the measures to protect it from any further vulnerability. The wider human rights perspective of the CRPD References(p. 302) thus opens the doors of jurisprudence to challenge any sophisticated practices to endanger a life with disabilities. That is why the aforesaid literature had been developed, even though the CRPD has neither banned nor mentioned anything on primary prevention of disability.
Though life is inherently valued, the quality-of-life argument is important to the lives of persons with disabilities.105 Contrasting the intrinsic value of human life, the quality-of-life judgment dominates in medical decisions to withhold treatment for newborns with disabilities, physician-assisted suicide and the ‘right to die,’ and prenatal testing for foetal disability. In such decisions, the life of an individual is valued based on its worth to fellow beings and to the individual himself but not on the basis of the intrinsic value of human life. The legality of withholding treatment to newborns with disabilities arose in a set of cases known as the ‘Baby Doe’106 cases in 1982 in the USA. The Infant Doe case, which commenced in 1982, was the first to draw significant political and legal attention to the issue.107
The right-to-life and disability-rights activists saw the case as proof that society was now falling down the slippery slope of disrespect for life. The court justified the decision of the parents as being in tune with the doctor’s advice, which made a quality-of life judgment about the life of their baby with disability. Article 10 CRPD is definitely a paradigm shift to break such diminishing perception about life with disabilities. Quality of life cannot be considered as a one-size-fits-all construct. People with disabilities often require more resources than other people because they need assistance, or assistive devices, or adaptation of social practices to engage in some of the fundamental activities of life.108 Even so, health economists continue to calculate the allocation of additional resources in terms of the right to healthcare not on the basis of the right to a healthy and quality life, but rather on the basis of two sets of metrics, namely the Quality Adjusted Life Years and Disability Adjusted Life Years. These will be explored in the following section.
QALYs are used primarily to correct someone’s life expectancy based on the levels of health-related quality of life they are predicted to experience throughout the course of their life, or part of it.109 The DALY framework focuses on the equity implications of age-weighting and of the standard life expectancy assumption used in cross-country comparisons, but also on the methods used to assess disability weights.110 The DALY was References(p. 303) developed as a measure of population health so that nonfatal outcomes could be considered alongside mortality in the prioritization of health resources. The former represent levels of quality of life enjoyed by individuals in particular health states, while the latter represent levels of loss of functioning caused by diseases. DALYs are composed of two components: (1) years of life lost due to premature death, and (2) years lived with disability (YLD) associated with nonfatal injuries and disease.111 QALYs are used in most economic evaluations, and by many regulatory agencies that have made cost-effectiveness analysis an integral part of their decision-making processes.112 The DALY is primarily a measure of disease burden (disability weights measure loss of functioning) but its use in cost-effectiveness analysis is also relatively common.113 Scholars argue that DALYs are incorrectly used to measure the magnitude, burden, or causes of disability.114 Accordingly, DALYs measure the perceived desirability of different health states and not disability as the term is used in public health practice.115
A standard illustration of the added expenses imposed by disability is the individual who must acquire a wheelchair to traverse distances ordinary citizens travel across on their legs.116 However, most accommodations are necessary only because of the manner that society has chosen to organize the structured environment to accommodate only the non-disabled majority. That is why the right to life and its comprehensive principles prioritize the best interest of persons with disabilities.
For instance, let us consider the decision in Ormond Street Hospital (GOSH) v Chris Gard and Others.117 Charlie, an infant, was diagnosed with a fatal and rare inherited mitochondrial disease called infantile onset encephalo-myopathic mitochondrial DNA depletion syndrome, referred to generally as MDDS, caused by a mutation in the RRM2B gene. Charlie’s parents accepted that his quality of life was poor and not worth sustaining but disagreed with the assessment of the team at GOSH that further treatment was futile and that palliative care should be pursued.118 Instead, they wished to take Charlie to the United States for experimental nucleoside therapy treatment. The medical experts at GOSH were firm in their rejection of the proposed therapy, arguing that it was not in Charlie’s interests and sought for judicial intervention.119 The case was heard at all levels of the UK courts before progressing to the Family Division of the High Court.120 The European Court of Human Rights had earlier concluded that the issue must be determined on the foundational principle of the ‘best interests of the child’. The ECtHR held that:
… whether the fair balance that must exist between the competing interests at stake—those of the child, of the two parents, and of public order—has been struck, within the margin of appreciation afforded to States in such matters, taking into account, however, that the best interests of the child must be of primary consideration.121
Finally, Francis J confirmed the original order rejecting the parents’ application to permit for an experimental treatment on Charlie. It was declared that ‘it was not in Charlie’s best References(p. 304) interests to have nucleoside therapy and therefore it was lawful to withdraw artificial ventilation and provide palliative care only’.122 Paragraph 18 of the judgment reiterated the cardinal principle of the ‘best interests of the child’ as follows:
In this country children have rights independent of their parents. Almost all of the time parents make decisions about what is in the best interests of their children and so it should be. Just occasionally, however, there will be circumstances such as here where a hospital and parents are unable to decide what is in the best interests of a child who is a patient at that hospital. It is precisely because the hospital does not have power in respect of that child that this hospital makes an application to the court, to an independent judge, for a determination of what is in that child’s best interests. In circumstances where there is a dispute between parents and the hospital, it was essential that Charlie was himself independently represented and a guardian was therefore appointed to represent Charlie so that there was someone who could independently report to the court as to what was in his best interests. Our judges are fiercely independent of the state and make decisions, having heard evidence and having considered the law.
However, protecting the best interests of persons with disabilities may immediately contradict the basic principles of the right to life in cases such as assisted suicide. At around the same time of the Baby Doe cases, disability rights activists began to oppose physician-assisted suicide and the so called right to die.123 They formed ‘Not Yet Dead’, an organization that opposes assisted suicide and euthanasia from a disability rights perspective.124 The disability rights critiques articulated a critique that is parallel to Baby Doe to contend that the practice of assisted suicide reflects a discriminatory belief that life with disability is not worth living.125
Assisted suicide and its legalization is the other instance that contravenes the sanctity-of-human life understanding. American cases have uniformly allowed competent patients to make quality-of-life judgments in determining whether to accept further life-sustaining medical intervention. This was the case, for example, when gangrene stricken patients declined surgical amputation, which could have preserved their lives for years.126 Similarly, quality-of-life decisions have been made by persons with disabilities—usually quadriplegics—who decided upon discontinuance of respirator support or artificial nutrition and hydration necessitated by their debilitating medical conditions.127
In 2005, the case of Terri Schiavo128 aroused the longstanding claim that any judgment that death is preferable to life violates the important concept of the inherent nature of the right to life. In this case, the court allowed the plea of the husband to allow Ms Schiavo to die, as her impoverished quality of life in a permanently unconscious state had ‘no value’. The Florida court’s acceptance of such a determination contravened society’s supposed respect for the intrinsic value of all human life. The right-to-life advocates contend that a quality-of-life ethic undermines the inherent value of life. However, it does not mean that References(p. 305) quality of life is not the parameter of life for persons with disabilities. Quality of life is equally relevant for persons with disabilities. It is an important parameter to adopt social justice measures. The quality of life of an individual is not solely tied to material wealth, but to the more elusive, but no less important, aspects of individual happiness and community belonging.129 It is a multidimensional construct that has the potential to move beyond being the concept of one’s personal situation. Persons with disabilities should be supported to have effective participation, which is equal to all others. Sometimes they may need support for matters that exclusively concern them.
Social justice measures are significant for persons with disabilities, in order to ensure the best interests of persons with disabilities. Quality-of-life parameters would provide a conducive environment for persons with disabilities. This would lead to a social perception where anyone can think that disability is a fine human condition.130 That is what is encompassed by the right to life provision of the CRPD.
In disability-selective abortion, it is the ‘selectiveness’ in the abortion that is problematic. A woman should be free to decide about her child within the confines of her right to choose. Disability-selective abortions are systemic when social prejudice forces the mother to choose selectively. To remove this persisting prejudice against one group of persons requires appreciating the significance of equality on the right to life. Analysing the interrelation between articles 10, 5, and 25, disability-selective abortion is an explicit form of denial of the right to life of persons with disabilities. Therefore, disability-selective abortion laws devalue life with disabilities and consequently discriminate against disabled persons. That is why, despite the silence maintained by the CRPD on this issue, the CRPD Committee has given a wider interpretation to the right to life.
A few cases stemming from reports submitted to the CRPD Committee may be used to reflect upon and elucidate various domestic practices. The Danish report demonstrated that the Danish Health Law provided mandatory options for obtaining supplementary information and advice from the relevant disability associations for a woman applying for permission to terminate her pregnancy after the end of the twelfth week of pregnancy on grounds of severe disability of the foetus.131 It was also reported that several initiatives were implemented, all of which aimed at preventing unwanted pregnancies and lowering the number of abortions performed within the time limit of a free abortion. Under the Danish Health Act, women may have an abortion carried out until the end of the twelfth week of pregnancy without permission. This is legally termed as ‘free abortion’, given that express permission is not required within this time limit.
The initial report of Denmark comprised information on Denmark and the self-governed territories within the Kingdom, namely the Faroe Islands and Greenland. Under the pertinent abortion legislation, a woman living in Greenland is entitled to have an induced abortion if the procedure can be done before the end of the twelfth week of pregnancy. This time limit can be extended, if genetic conditions or disease during the foetal References(p. 306) stage put the child at risk of a severe physical or mental disease.132 However, as part of CRPD-based implementation, women must now be informed about the regional social committee for counselling before proceeding with an abortion decision. The state must provide a woman with the options available to her in order for her to make an informed choice about proceeding or not with her pregnancy, as well as support after birth.133
In response to Denmark’s report, the CRPD Committee appreciated the efforts of Denmark to review and amend its legislation to comply with the CRPD. Whilst the Committee has not made any explicit observations on the right to life and related practices, it has raised concern about proper implementation. The major concern of the Committee was that:
… the Convention is not explicitly incorporated into the laws of Denmark, the Faroe Islands and Greenland. It is also concerned at the insufficient information about the application of the Convention by the State party’s courts and authorities. The Committee notes with concern that officials of State, regional and municipal authorities are not sufficiently aware of their obligation to promote the implementation of the Convention.134
The Committee has also made observations, as below, on ‘equality and non-discrimination’ noting the status of certain rights.135 The Committee’s emphasis on equality and non-discrimination with a view to extending the efforts beyond the labour market is an obvious call to address the prejudice and discrimination in all spheres of the life of persons with disabilities. Croatia has reported that the right to life is guaranteed by its Constitution and is additionally strengthened by being a signatory to various human rights treaties that are an integral part of its legal system. Accordingly, Croatia’s contention is that persons with disabilities are not exposed to arbitrary deprivation of life, and moreover there exists no possibility of denial of immediate medical assistance to an ill person or a person requiring such assistance, due to the immediate danger for their life.136 Any such practice is considered under the Croatian Criminal Code (1997) a criminal act with a prescribed custodial sentence. However, according to the Law on Health Care Measures for the Exercise of the Right to Free Decision-Making About Giving Birth (1978) a woman may legally terminate pregnancy without permission if this is a pregnancy that lasts for less than ten weeks, in which case the abortion may be performed only in authorized healthcare institutions. Even so, no statistical data are kept in relation to abortions where there exist indications that a child is likely to be born with severe inborn, physical, or mental disabilities. Following legislative amendments, a plan of statistical surveys for 2011 was adopted, which will now make this possible.137 Towards this end, necessary pre-actions have been taken to supplement the abortion report form with questions on screening for chromosomopathies and resulting requests for abortions.138
South Africa’s Choice on Termination of Pregnancy Act, 1996, provides the basis for permission of abortions in the country, albeit it is limited to pregnancies in weeks thirteen References(p. 307) to twenty.139 It was reported that, in general, there is an on-going moral debate within South African society, including its disability population, in respect of the counselling process on the choice to terminate disabled foetuses.140 South Africa has also reported that its Constitution recognizes and protects the right to life and survival of persons with disabilities on an equal basis with others.141
In Germany, the protection of life is comprehensively guaranteed at constitutional level by article 2(2), sentence 1, of the Basic Law. It affirms that: ‘Every person shall have the right to life and physical integrity.’ The right to life is also protected by sections 211 et seq of the Criminal Code.142 In its initial report to the CRPD Committee Germany reported its Penal Code protects unborn life143 but not unconditionally.144 The Pregnant Women’s and Families’ Amendment Act 1995 had abolished the explicit embryopathic indication for an abortion. The campaign was spearheaded by the Catholic Church and the disability lobby, both of whom oppose any worldview that see ‘abnormal’ foetus as having a reduced right to life.145 Since then, section 218(a)(2) permitted abortion within the first twenty-two weeks, on embryopathic grounds. That is, if it was very probable that for genetic reasons or in consequence of prenatal damage the child would suffer from such an incurable abnormality as to be so seriously handicapped, the pregnant woman should not be obliged to carry the child to a full term. This was facilitated by the Indication Model in the Old Bundesladnder 1976, which authorized doctors to provide an ‘indication certificate; sanctioning the medical reason for the abortion. Since the early embryopathic indication was abolished in 1995, the disability of the child as such is not a reason for a permissible abortion in Germany.146 Consequently, abortion is permitted if medical indication may exist in individual cases in accordance with the prenatal diagnosis demonstrating there is a serious risk to the life or health of the mother and this risk can only be countered by an abortion.147 The Pregnancy Conflict Act comprehensively regulates the right of the pregnant woman to receive advice in all possible questions concerned with the pregnancy and any conflict situations.
It is worthwhile referring to a legal order that prohibits disability-based abortions. The Kenyan Constitution guarantees the right to life to every person in Kenya, including persons with disabilities.148 Kenya has reported that its 2010 Constitution has declared that abortion References(p. 308) is illegal unless there is need for emergency treatment, or the life or health of the mother is in danger, or if permitted by any other written law as provided under article 26(4) of the Constitution. Article 26(1) of the Kenyan Constitution states that life begins at conception and can only be terminated in accordance with the law. No person can therefore be deprived of their right to life on account of their disability. Article 43(1) of the said Constitution further guarantees everyone the right to the highest attainable standard of health, which includes the right to health care services, including reproductive health care. It is only rarely that domestic laws do not support the blanket legal permission for disability-selective abortion. Significantly, Kenya has special legislation in place to protect the rights of children. The right to life and survival for children with disabilities is specifically recognized under section 4(1) of the Children’s Act, No 8 of 2001, which provides that every child shall enjoy an inherent right to life and it shall be the responsibility of the government and the family to ensure the survival and development of the child. Section 12 of the Act provides that a child with disabilities has the right to be accorded medical treatment free of charge and at a reduced cost whenever possible. To this end, the Kenyan government offers prenatal services to pregnant mothers, runs the Expanded Safe Motherhood programme and undertakes immunization against preventable diseases that cause disabilities in its health facilities.149
The rights to human life and human dignity form an indivisible and un-restrained fundamental right that is the source of and the condition for several additional fundamental rights in Hungary. Even though, the country’s pertinent constitutional provisions protect the life of foetus from the time of conception,150 other related laws permit abortion on grounds of disability. Its health care-related laws, such as the Health Act 1997,151 and the Foetus Life Act 1992152 makes abortion possible for a wider circle than in general for those foetuses deemed impaired or disabled.153
The Portuguese government has also reported shadow legislation establishing the boundaries for voluntary termination of pregnancy.154 A similar legal stance can be found References(p. 309) in Uganda’s domestic laws guaranteeing to all persons a right to life, making it clear that no person shall be deprived of his or her life intentionally nor terminate the life of an unborn child except and as may be authorized by law.155
India generally permits abortion on the ground protecting the life of the mother. However, the right to life in India has been strongly endorsed in article 21 of the Constitution, which declares that: ‘no person shall be deprived of his life or personal liberty except according to procedure, established by law’. India is among a handful of nations whose courts have expanded and linked the right to life with a variety of other rights, socio-economic as well as civil and political.156 In India, pre-natal diagnoses and abortions have been considered by Indian courts through a construction of pertinent Indian legislation157 as permitting disability-selective abortions. Since the origin of those abortion laws Indian courts have been in favour of selective abortions on the ground of disability, save for Nikhil D Dattar and Niketa Mehta v Union of India.158 In this case alone, the Bombay High Court had denied permission for abortion as the pregnancy had crossed the time limit of twenty weeks as provided by domestic law. The doctor and the parents requested termination of the pregnancy on the basis of the medical opinion that whereby there was a substantial risk if the child were born. The child would have allegedly suffered from such physical or mental abnormalities as to be seriously handicapped.159 However, the recent adjudication trend of the Indian courts shows a significant shift towards recognition of the inherent right to life for persons with disabilities. The Supreme Court of India denied permission to abort a foetus with Down’s syndrome.160 In this case, References(p. 310) the Court refused to allow aborting in week twenty-six of pregnancy because of the detection of Down’s syndrome. The Court emphasized that: ‘everybody knows that children with Down’s syndrome are undoubtedly less intelligent, but they are fine people … we have a life on our hands’.161 The trend was carried over to another case denying permission to abort a twenty-seven-week foetus with physical disability.162 These cases should augment the paradigm shift made by the CRPD in general and article 10 therefore in particular. However, it should be noted that the Indian domestic law that permits selective abortion dominates the right to life human perspective as postulated by the CRPD.163
It is worthwhile pointing out examples of legal orders where disability-selective abortion is not subject to the constitutional dictates of the right to life. The Korean report to the CRDP Committee acknowledges article 14(1)(1) of the Mother and Child Health Act, as well as article 15 of its Enforcement Decree, both of which allow induced abortions in exceptional cases within twenty-four weeks of pregnancy. The Korean government has amended the Enforcement Decree of the same Act in July 2009 to reduce the scope of induced abortions to cases where ‘a woman or her spouse has genetic disorders that will highly affect foetuses, such as achondroplasia and cystic fibrosis’ (article 15 (2)). In equal manner, Lithuania’s country report acknowledges that termination of pregnancy at a woman’s request is allowed until twelve weeks of pregnancy, whereas termination at a later stage is allowed only when there is a risk to a woman’s life or health. In order to facilitate this, a list of diseases or conditions causing risk to a pregnant woman and the foetus’s life and health, is approved by the state. Accordingly, abortions for other reasons are treated as illegal and are penalised.164
In Slovakia, whilst the state’s specific interest in the protection of life165 and health is incorporated in the Criminal Code,166 abortion is generally regulated in the country References(p. 311) on the basis of the Act on Artificial Termination of Pregnancy.167 Abortion is permitted on the grounds of protection of women’s life and in the interest of planned and responsible parenting.168
This significant human rights purview of the CRPD has been explicit in the Committee’s concluding observations. In one case it focused on the Spanish Sexual and Reproductive Health Act of (Organic Act 2/2010) which decriminalized voluntary termination of pregnancy and which allowed pregnancy to be terminated up to fourteen weeks. The same Act, however, permitted abortion up to twenty-two weeks of pregnancy if foetal disability was discovered. Noticing the longer time limits allowed for terminating pregnancies when the foetus has a disability, the CRPD Committee raised the question of whether Spain considered this to be in line with article 4(1)(d) CRPD.169 When the Committee considered the reports submitted by Spain under article 35 of the Convention, it recommended that Spain ‘abolish the distinction made in the law in the period allowed within which a pregnancy can be terminated based solely on disability’.170 It is pertinent to note that the Committee addressed the problem related to the right to life by not directly referring to the right to life but rather to equality and non-discrimination. However, in several other cases the Committee has made an explicit reference to article 10 CRPD, as will be shown in subsequent sections.
The CRPD Committee has adopted a number of concluding observations from 2011 to 2017 on various provisions of the CRPD. Article 10 has also been cited in many cases. While considering the initial report of Spain, the Committee in its concluding observations referred to article 10 in connection with the issue of informed consent in medical treatment. It noted as follows:
The Committee welcomes the fact that Act 26/2011 amends regulations to contain provisions to reflect the right to accessibility when granting informed consent to medical treatment. It however regrets that guardians representing persons with disabilities deemed ‘legally incapacitated’ may validly consent to termination or withdrawal of medical treatment, nutrition or other life support for those persons. The Committee wishes to remind the State party that the right to life is absolute, and that substitute decision-making in regard to the termination or withdrawal of life-sustaining treatment is inconsistent with this right [emphasis added].171
References(p. 312) The Committee has further requested the state party to ensure that the informed consent of all persons with disabilities is secured on all matters relating to medical treatment, especially withdrawal of treatment,172 nutrition, or other life support.173
In Pretti v The United Kingdom the applicant, who was at the last stage of motor neuron disease wished to opt for assisted suicide. She required her husband’s help. Suicide was not a crime in English law, but assisting suicide is. Hence the applicant’s husband was certain to be prosecuted for murder. Since permission was denied for assisting suicide, the applicant complained that the denial of request for assisting suicide is a denial of the right to life. The ECtHR held that, ‘there had been no violation of article 2 ECHR (right to life), finding that the right to life could not, without a distortion of language, be interpreted as conferring the diametrically opposite right, namely a right to die’.174
The CRPD Committee was concerned with the adoption of legislation to provide medical assistance in dying, including on the grounds of disability in Canada.175 It has also commented on the absence of regulations for monitoring medical assistance in dying, the absence of data to assess compliance with the procedural safeguards regarding such assistance, and the lack of sufficient support to facilitate civil society engagement with and monitoring of this practice.176 The Committee has recommended as follows:
24 (a) Ensure persons who seek an assisted death have access to alternative courses of action and to a dignified life made possible with appropriate palliative care, disability support, home care and other social measures that support human flourishing;
(c) Develop a national data standard and an effective and independent mechanism to ensure that compliance with the law and regulations is strictly enforced and that no person with disability is subjected to external pressure.177
Similarly, in response to the initial report submitted by the United Kingdom and the Netherlands, the Committee noted with concern that the substituted decision-making applied in matters of termination or withdrawal of life-sustaining treatment and care was inconsistent with the right to life of persons with disabilities as equal and contributing members of society.178 The Committee recommended that:
… the State party adopt a plan of action aimed at eliminating perceptions towards persons with disabilities as not having ‘a good and decent life’ and recognizing persons with disabilities as equal References(p. 313) to others and part of the diversity of humankind. It also recommends that the State party ensure access to life-sustaining treatment and/or care.179
The Committee has addressed more issues concerning violations of the right to life motivated by persistent prejudices against persons with disabilities. It has shown grave concern at reports of killing of newborn children with disabilities at the most remote communities in Bolivia.180 In response to those practices, the Committee urged the state party to strengthen measures to protect children with disabilities and guarantee their right to life.181 It recommended that Bolivia adopt awareness-raising and educational measures for families of children with disabilities and their communities.182 It also recommended that the state party provide the necessary assistance to the families of children with disabilities to ensure that they have general information, services, and support in their family life and in attaining an adequate and dignified standard of living.183
3 Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (December 2003), The Chair’s draft Art 12 on the right to life, reproduced the article of the Bangkok Draft. Bangkok recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities UN Doc A/AC265/2003/CRP/10 (2003).
5 Ralf Sandland, ‘Lessons for Children’s Rights from Disability Rights’ in Eva Brems, Ellen Desmet, Wouter Vandenhole (eds), Children’s Rights Law in the Global Human Rights Landscape: Isolation, Inspiration, Integration? (Routledge 2017) 85.
6 NGO Contributions to the Elements of a Convention, ‘Nature of the Convention’; WNUSP, ‘Freedom from torture, right to life, liberty, bodily and mental integrity’(CRPD Ad Hoc Committee Meeting 16–27 June 2003), available at: <http://www.un.org/esa/socdev/enable/rights/a_ac265_2003_crp13_add1.htm>.
8 Nizar (n 1) 42; pro-life advocates believe that human life begins from the conception of an embryo; hence, a foetus has the same value as a human being. Therefore they disagree with destruction of a foetus. At the same time, pro-choice advocates do not ascribe life to the foetus and contend that it is the right of a pregnant woman to decide whether to continue the pregnancy or not. See also, Bret Shaffer, ‘The Right to Life: The Convention on the Rights of Persons with Disabilities and Abortion’ (2009) 28 Penn State International Law Review 271. ‘Pro-choice’ advocates may also see the term ‘pro-life’ as conflating the beginning of life with the beginning of personhood. Many ‘pro-choice’ advocates believe that, while an abortion may terminate a life, life only becomes subject to moral worth when that life reaches personhood. What personhood entails differs between ‘pro-choice’ advocates but generally entails a certain level of cognition. Of course, the arguments described here are not exhaustive of either ‘pro-choice’ or ‘pro-life’ advocates’ positions.
9 The difficulty of not having a definition on both was explicit during the Antebellum period of America. The 1857 case of Dred Scott v John Sandford 60 US 393 (1857) demonstrates this. This case has considered that personhood solely depends upon scope and standing of liberal democracies on rights and privileges. The majority opinion determined that, (Justice Roger) a black man did not qualify as a citizen and was not entitled to the rights and privileges (including enjoying legal standing before the court) of those who are clearly identified as full members of society. It was held: ‘The words “people of the United States” and “citizens” mean the same thing. They both describe body, who, according to our republican institutions, form and who hold power and conduct the government through representatives. They are what we familiarly call the “sovereign” every citizen is one of this people, and are constituent sovereignty. We think they are not, and that they are not included, and were not intended to be included, under the word “citizens” in the Constitution, and can, therefore, claim none of the rights which that instrument provides for and secures to citizens.’ The question as to whether or not Dred Scott qualified as a ‘human being’ was considered to be a moot one by the Court. The crucial question was whether or not he qualified as a ‘person’—that is, as a full member of American society. See, James T McHugh, ‘What Is the Difference between a “Person” and a “Human Being” within the Law’ (1992) 54 The Review of Politics 445–61.
10 Nizar (n 1) 124.
13 UN Doc A/61/PV 76 (n 11) 23.
17 Shaffer (n 8) 271.
18 Council of Europe, Drafting Proposals and Comments by the Council of Europe Secretariat 3 (21 April 2006); see also Shaffer (n 8) 284; see also Samuel R Bagenstos, ‘Disability, Life, Death, and Choice’ (2006) 29 Harv J L & Gender 425.
23 While Yemen agreed with the original draft Art 8, it recommended the addition of a second paragraph specifying life risk situations. The recommendation was to add the following: ‘States parties shall, in accordance with their obligations in the context of international law and the Universal Declaration of Human Rights and international treaties and conventions for the protection of civilians from armed conflicts, take all necessary measures to guarantee the protection and care for persons with disabilities that are affected by armed conflicts or are refugees or are internally displaced persons’ right to life.’
24 CRPD Ad Hoc Committee, ‘Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/5 (9 June 2004) 21.
25 It is significant to emphasize the strong connection between the right to life and state responsibility under other international treaties. In the case of Xákmok Kásek Indigenous Community v Paraguay, in its judgment of 24 August 2010, the Inter-American Court of Human Rights, considered the state responsible to ensure the right to life under the American Convention on Human Rights (ACHR). It was held that ‘the right to life is a fundamental human right, the full enjoyment of which is a precondition for the enjoyment of all other human rights. Therefore, restrictive actions affecting this right are impermissible. Consequently, states are obliged to ensure the creation of the necessary conditions to prevent violations of this right and, in particular, the obligation to prevent its agents from endangering it. The observance of Art 4 ACHR, in relation to Art 1(1) ACHR, not only presumes that no one be deprived of their life arbitrarily (negative obligation), but also requires States to take all appropriate measures to protect and preserve the right to life (positive obligation) in keeping with the obligation to ensure the full and free exercise, without discrimination, of the rights of all persons under their jurisdiction.’
26 CRPD Third Session (n 24) fn 31.
28 Ad Hoc Committee, ‘Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/5 (9 June 2004) 21.
31 Ad Hoc Committee, ‘Report of the fourth session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/59/360 (4 September 2004).
33 ibid; New Zealand did not support the introduction of language attempting to cover issues such as the status of unborn children as this ‘could open a Pandora’s box’. It took the stand that the right to life article should not cover primary prevention of disability.
34 See (n 31).
35 Nizar (n 1) 123.
36 See (n 31).
39 Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2005/2 (23 February 2005) 6. In the context of the discussion of paragraph 3 of draft Art 12, the facilitator proposed the following text: ‘Special attention shall be paid to measures reflecting the particular vulnerability of persons with disabilities in situations of emergency, inter alia, during armed conflict or foreign occupation.’ The proposal was not discussed, on the understanding that it would be considered in the context of the discussions of draft Art 8 bis.
40 A separate article to deal with such situations of risk was deemed essential to ensure state responsibility to protect the right to life of persons with disabilities, like all other human beings. Concern for life in such situations had already been reflected in various judgments of international tribunals, eg in Mapiripán Massacre v Colombia, 15 September 2005, the Inter-American Court of Human Rights recognized the state responsibility to investigate alleged violations of the right to life in situations of armed conflict and occupation. The judgment was in connection with the respondent state’s failure to fully investigate the massacre of civilians carried out by a para-military group with the alleged assistance of the state authorities. It was held that, ‘… the country’s conditions, no matter how difficult, do not release a state party to the American Convention of its obligation set forth in this treaty, which specifically continue in cases such as the instant one. The Court has held that when the state conducts or tolerates actions leading to extra-legal executions, not investigating them adequately and not punishing those responsible, as appropriate, it breaches the duties to respect rights set forth in the Convention and to ensure their free and full exercise, both by the alleged victim and by his or her next of kin, it does not allow society to learn what happened, and it reproduces the conditions of impunity for this type of facts to happen once again.’
42 Ad Hoc Committee, ‘Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/5 (9 June 2004) 22.
48 See (n. 31).
50 See (n 28), Ad Hoc Committee Third Session, 25 May 2004, NACLC/People with Disabilities Australia Incorporated/Australian Federation of Disability Organizations.
56 At the fourth session of the Ad Hoc Committee, New Zealand cautioned against the inclusion of a language that would cover ‘unborn children’ within the remit of the right to life. Canada and India supported this stand. At the same time Chile supported the introduction of language that would cover persons with disabilities in ‘various stages’ of life. The International Disability Caucus also supported amending the ‘right to life’ article to include coverage for persons with disabilities in ‘all stages of life’—see IDC Working Paper (23 January 2005).
57 See (n 24), Ad Hoc Committee third Session, NACLC/People with Disabilities Australia Incorporated/Australian Federation of Disability Organizations.
58 Nizar (n 1) 124.
59 Schulze (n 29) 57; see also ‘Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’, Seventh Session UN Doc A/AC265/2006/2 (13 February 2006); Nizar (n 1) 124.
60 Nizar (n 1) 125.
61 UN Doc A/AC265/2006/2 (n 59).
62 Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Eighth Session UN Docs A/AC265/2006/4 (1 September 2006), and A/AC265/2006/L 7 (21 November 2006).
66 eg in Judge v Canada, HRCtee Comm No 829/1998, the author, Roger Judge, claimed that Canada imposed mental suffering upon him amounting to cruel, inhuman, and degrading treatment or punishment, having detained him for ten years. He complained that by detaining [him] for ten years despite the fact that he faced certain execution at the end of his sentence, and proposing now to remove him to the United States, Canada has violated [his] right to life, in violation of article 6 of the Covenant. In reviewing its application of Art 6, the Committee noted that, ‘as required by the Vienna Convention on the Law of Treaties, a treaty should be interpreted in good faith and in accordance with the ordinary meaning to be given to the terms of the treaty in their context and in the light of its object and purpose. Paragraph 1 of article 6, which states that “Every human being has the inherent right to life?”, is a general rule: its purpose is to protect life.’ (para 10.4). The Committee found a violation of article 6 by Canada (para 11).
68 The insight of the right to life is evident from the concluding observations of the CRC Ctee on the practice of euthanasia for patients below the age of eighteen years in the Netherlands. It recommended considering the possibility of abolishing the use of euthanasia on patients below eighteen years of age. CRC Ctee, ‘Concluding Observations on the Fourth Periodic Report of the Netherlands’ UN Doc CRC/C/NDL/CO/4 (8 June 2015) paras 28, 29.
69 Nizar (n 1) 135.
71 Para 74; see, among many other authorities, Herczegfalvy v Austria, (1992) 15 EHRR 437, paras 88–91. Nor does it consider it necessary to pronounce on the applicants’ contention that the authorities failed to comply with the positive obligations inherent in an effective respect for the first applicant’s right to physical integrity by failing to adopt measures designed to secure respect for his physical integrity. See eg X and Y v the Netherlands (1986) 8 EHRR 235, para 23 and, more recently, Odièvre v France (2004) 38 EHRR 33.
73 ibid; according to the author, the provisions on the right to life and legal capacity are very important for persons with intellectual capacities.
87 Nizar (n 1) 127.
88 ibid 123.
89 ibid 123.
92 ibid 128.
93 ibid 128.
94 ibid 123.
95 ibid 123.
96 ‘States Parties undertake … (a) To take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities; (b) To take into account the protection and promotion of the human rights of persons with disabilities in all policies and programmes.’
98 In Guberina v Croatia,  ECHR 287, the ECtHR considered a claim of discriminatory tax legislation. The applicant in this case was the father of a child with disability. They lived on the third floor of an apartment building that was inaccessible due to lack of elevator, which forced the father to sell the flat and buy an accessible house. Croatian law provided tax exemptions to persons purchasing new property to solve ‘their housing problems’ and the applicant duly applied. His request was based on the ‘inaccessibility’ of the flat. However, the authorities rejected his request without considering his son’s right to have an accessible home. The ECtHR found that ‘the alleged discriminatory treatment of the applicant on account of the disability of his child, with whom he has close personal links and for whom he provides care, is a form of disability-based discrimination covered by Art 14 ECHR’. It is remarkable that the ECtHR decided the case from a disability law perspective, taking into consideration Croatia’s duties under the CRPD. It was held that Croatian authorities were obliged to give effect under an obligation to ‘reasonable accommodation, accessibility and non-discrimination against persons with disabilities with regard to their full and equal participation in all aspects of social life’. The ECtHR concluded that there was a breach of Art 14 ECHR (prohibition of discrimination) together with Article 1 of its Protocol 1 (right to property).
100 Nizar (n 1) 124.
102 Nizar (n 1) 125.
103 Tromel (n 97) 124.
104 ibid 120.
105 Nizar (n 1) lii.
107 The case involved a child who was born with Down syndrome, as well as a tracheoesophageal fistula. In this condition, the upper part of oesophagus is not connected to the lower part. Though surgery to connect the oesophagus had a high prospect of success, the obstetrician pointed out to the parents that ‘if the surgery were performed and if it were successful and the child survived, that this still would not be a normal child’. Based on the obstetrician’s advice, the baby’s parents agreed not to authorize surgery, food, or water for the child. Nurses at the hospital initiated legal proceedings to override the parents’ decision, but the Indiana courts ruled that the parents had the right to follow the obstetrician’s recommendation. The baby died when he was six days old.
110 ibid 403.
112 Sassi (n 109) 402.
114 Grosse et al (n 111) 197.
116 Nizar (n 1) 109.
120 ibid 1.
122 See (n 12).
130 Nizar (n 1) 114.
138 ibid para 59; Croatia has reported that this will be possible upon amendments to its regulations and adoption of a Plan of statistical surveys. Other legally prescribed reasons such as rape and incest were also introduced in this form, The CRPD Committee has not made any concluding observations with respect to the report on the right to life and abortion laws of Croatia: see CRPD Committee, ‘Concluding Observations on the Initial Report of Croatia’ UN Doc CRPD/C/HRV/CO/1 (15 May 2015).
140 ‘Initial Report of South Africa’ UN Doc CRPD/C/ZAF/1 (26 November 2014) para 118; see also Keren L Lawson and Roger A Pierson, ‘Maternal Decisions Regarding Prenatal Diagnosis: Rational Choices or Sensible Decisions’ (2007) 29 J Obstet Gynaecol Can 240; Hilmar H Bijma, Agnes van der Heide, and Hajo I J Wildschut, ‘Decision-Making After Ultrasound Diagnosis of Fetal Abnormality’ (2007) 3 Eur Clinics Obstet Gynaecol 89–95; John Wyatt, ‘Medical Paternalism and the Fetus’ (2001) 27 Journal of Medical Ethics 15.
141 ibid para 117.
147 German Criminal Code s 218(a)(2). The termination of pregnancy performed by a physician with the consent of the pregnant woman shall not be unlawful if, considering the present and future living conditions of the pregnant woman, the termination of the pregnancy is medically necessary to avert a danger to the life or the danger of grave injury to the physical or mental health of the pregnant woman and if the danger cannot reasonably be averted in another way from her point of view.
150 Art II (Freedom and Responsibility) of the Kenyan Constitution 2011 states that: ‘Human dignity shall be inviolable. Every human being shall have the right to life and human dignity; the life of the foetus shall be protected from the moment of conception.’
151 Act CLIV of 1997 on Health, (promulgated on 23 December 1997), ss 183–84, which facilitates termination of pregnancy to reduce the number of embryos or foetuses in multiple pregnancies. Section 187(4)(b) permits medical intervention and sterilization if the child born of the pregnancy would not be healthy. Accordingly, sterilization may be performed only after three months have elapsed from the date on which the application was submitted, except when a pregnancy that might occur in the interim would directly endanger the life, physical well-being or the health of the woman, or when it is highly probable that a child born of the pregnancy would not be healthy.
156 The Supreme Court gave an expansive interpretation to the term ‘life’ in Francis Coralie Mullin v Administrator, Union Territory of Delhi and Ors, AIR 1981 SC 746, by extending it beyond mere ‘physical or animal existence’ and including the right to read, write, and express oneself and to lead a life of dignity. The Court held that ‘the right to life includes the right to live with human dignity and all that goes along with it, namely, the bare necessities of life such as adequate nutrition, clothing, shelter over the head, and facilities for reading, writing, and expressing oneself in diverse forms, freely moving about and mixing and commingling with fellow human beings’ (at 753). This view of extending the ambit of the right to life under Art 21 to beyond mere animal existence (bios) to include political, social, and cultural participation (zoee) was reiterated by the Supreme Court in Olga Tellis v Bombay Municipal Corporation  2 Supp SCR 51, where it held that ‘the inhibition against deprivation of life extends to those limits and faculties by which life is enjoyed’. One of the most crucial aspects of the expansion of the ambit of the right to life under Art 21 of the Constitution is the provision for inclusion of the social, political, and cultural life of the person. Thus, the fundamental right to life guaranteed to all persons under the Constitution includes the right to live with human dignity and to participate fully in the social, cultural, and political processes of the country. This goes beyond the biological concept of life encompassing only the vegetative state of being alive. As a result of such an expansion, the right to read, write, and fully express oneself becomes an integral part of the right to life under Art 21, because these rights are integral to a person’s active participation in the political, social, and cultural processes of the country or of his or her communities. Access to printed material is one of the most fundamental aspects of the right to read, write, and express oneself in order to form an informed opinion or make an informed choice in one’s political, cultural, or social life. When persons with print impairment are denied access to printed material in alternative formats, their fundamental right to life guaranteed to them under the Constitution is taken away from them since such denial of access will prevent their participation in the political and social aspects of their lives. Thus, it becomes an obligation on the part of the state to ensure that the fundamental rights of disabled persons are satisfied on an equal basis with other persons, by extinguishing any gap in the law preventing persons with print impairment from accessing information in the print format—see Nizar (n 1) 74–76. However, since it is too early to ban the existing domestic laws on disability-selective abortion, the newly enacted Indian law, namely The Rights of Persons with Disabilities Act, 2016, is silent on disability-selective abortion.
161 ‘SC denies abortion nod to woman with Down Syndrome foetus’, The Hindu (28 February 2017), available at: <http://www.thehindu.com/news/national/SC-denies-abortion-nod-to-woman-with-Down-Syndrome-foetus/article17381665.ece> (accessed 28 February 2017). The judgment is on file with the author.
162 Sheetal Shankar Salvi and Another v Union of India and Others, Writ Petition (Civil) No 174/17. However, it seems that, the Indian judiciary makes an effort to balance the rights of an unborn and the health risk of the mother. In yet another case, Sarmishtha Chakrabortty v Union Of India Secretary (Writ Petition (c) No 431/2017, the court has permitted terminating her pregnancy as the continuation of pregnancy may have caused severe mental injury. The foetus was diagnosed with cardiac anomaly with suggestion of Teralogy of Fallot.
165 The right to life is guaranteed by Art 15(1) of the Constitution of the Slovak Republic. In addition to this the law of the Slovak Republic does not allow any form of euthanasia and assisting suicide. Assisting suicide is a crime punished under s 154 of the Criminal Code. However, the Slovak Republic puts into practice a comprehensive plan to take care of unwanted children. The country report submitted by the Slovak Republic explains that, in January 2012 sixteen ‘safety nests’ (baby boxes) operated in Slovakia based on cooperation with the civic association ‘Chance for unwanted’ (Šanca pre nechcených). These are public incubators connected directly to the hospital departments for new-born care and mothers who are unable to cope with a child and can place their new-born there without risk to the child’s life or health. The actions of a person who places a child in a ‘safety nest’ can be viewed as circumstances excluding criminal liability because it is an exercise of rights and duties in accordance with s 28 of the Criminal Code. By January 2012 the ‘Safety Nests’ saved up to thirty-four children, one of which was a child with disabilities. Support for the ‘Safety Nest’ project in the Slovak Republic is part of the system of measures for the protection of the lives of unwanted children (including children with disabilities). It should be noted that India has also arranged for a remedial plan to save children in circumstances similar to Slovak’s ‘safety nests’. In India many of its states have ‘mothers’ cradles’ to save unwanted children. However, children with disabilities are less likely to be saved in this manner, as disability-selective abortion is effectively permitted.
166 Part II of Act No 300/2005 Criminal Code protects the life and health of its citizens. The said provisions are divided as follows: Division 1. Crimes against life (§§144–54), Division 2: Crimes against health (§§155–60), Division 3: Crimes threatening life and health (§§161–78).
169 Under Art 4(1) CRPD states parties undertake to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability. To this end, states parties undertake: … (d) To refrain from engaging in any act or practice that is inconsistent with the present Convention and to ensure that public authorities and institutions act in conformity with the present Convention.
170 CRPD Committee, ‘Concluding Observations on the Initial Report of Spain’ UN Doc CRPD/C/ESP/CO/1 (19 October 2011) para 18. It recommended that the State party: ‘abolish the distinction made in Act 2/2010 in the period allowed under law within which a pregnancy can be terminated based solely on disability’.
173 CRPD Concluding Observations on Spain (n 176) para 30; it is appropriate to examine the interpretation of the right to life by the European Court of Human Rights.