- 1 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
1The institutionalisation of people with disability was a critical issue for many Disabled People’s Organisations (DPOs) during negotiations for the Convention on the Rights of Persons with Disabilities (the Convention or CRPD).1 Segregation and the denial of autonomy are a central characteristic of institutions. They deny people with disability their autonomy to choose where to live and with whom to live and to make daily decisions. Institutions isolate and segregate people with disability from the community.
2The CRPD is the specialist law concerning disability and human rights. It was developed to address the denial and diminishment of human rights based on impairments. The Convention reframes human rights standards by addressing the specific situation of people with disabilities to ensure they enjoy all human rights and fundamental freedoms on an equal basis with others. It rejects impairment as the basis for any limitation on rights and focuses on the support for people with disabilities to exercise their human rights on an equal basis with others. This premise is simply stated in article 1 of the Convention:
- 2 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.2
3Institutions for the care, treatment and protection of people with disabilities is one area where the denial and diminishment of human rights based on impairment is deeply entrenched. The drafters of the Convention sought to address this form of segregation through article 19 Living independently and being included in the community. article 19 on face value seems a simple proposition, but for people with disabilities it engages multiple rights and presents a complex challenge. Central to this challenge is the deeply entrenched belief that people with disability embody deficits that require special segregated services for their care, treatment and protection. This premise is an outcome of the way impairment is conceptualised and how we respond to the phenomena of disability as societies.
4Further complicating institutional responses is the continued conflation of the terms impairment and disability. Fundamental to understanding the human rights model contained in the Convention, is understanding the difference between “impairment” and “disability.” In the human rights model, impairment is a personal characteristic – one aspect of human diversity and not an individual deficit. Disability results from how society responds to impairment – a social construct that results in inequality, discrimination and segregation. It is society that disables, limits or oppresses people with impairments by excluding them from dominant social institutions and arrangements (Kayess & Smith, 2017: 155).
5For example, if a person with impairment cannot open a standard door with a handle, the door presents a disabling environment. The person cannot turn the handle, open the door and move through. That inability to enter and exit a room, is a disabling factor. If it was an automatic door, the disability is removed, but the impairment remains the same.
6Understanding the difference in the two terms underpins an accurate interpretation of the human rights model and the development and implementation of laws and policies that promote and facilitate the exercise of all human rights and fundamental freedoms for all persons with disabilities.
7This article will explore the pervasive nature of the value system that is at the heart of institutional responses to disability and examine how contemporary human rights provides a framework for social transformation and a process of deinstitutionalisation. It first presents the medical model that underpins the conceptualisation of disability and feeding an ableist standard in society. Secondly, the paper discusses the CRPD, the human rights model of disability that underpins it and the steps that have led to it. It also explains why the Committee on the Rights of Persons with Disabilities (the Committee) feels the need to address the lack of understanding shown by State parties to the Convention regarding the distinction between “impairment” and “disability,” as it organises the continuation of institutional arrangements segregating people with disabilities. The paper describes the holistic interpretation of the CRPD by the Committee regarding the institutionalisation of people with disabilities and shows which are the building blocks for the analysis and interpretation of article 19 Convention rights (Living independently and being included in the community). Finally, the paper explains how and why the institutionalisation of people with disabilities results in segregation and the denial of human rights based on impairment, and is thus incompatible with the CRPD. In this paper, these issues are addressed through the expertise of the Committee on the Rights of Persons with Disabilities, which is chaired by the author.
8Disability has long been accepted as an exception for the application of human rights and fundamental freedoms, with rights consistently being denied or limited on the basis of perceived or actual impairment (Kayess & Sands, 2020: 18). From the 1960s, the disability rights movement has rejected this exception with its roots in the medical model of disability; a model that “conceptualises disability as a deficit located in the individual – a deviation from bodily, cognitive and mental norms that requires a range of medical and expert interventions to diagnose, treat and cure” (Kayess & Sands, 2020: 6; Oliver, 1996; Finkelstein, 1980).
- 3 General Comment No. 6. Para 8.
9People with disabilities are not seen as meeting the normative standard of what it means to be human and “are viewed as different, as exceptions, as other, requiring care, treatment and protection within social welfare and health regimes as a way of dealing with their so-called ‘special’ needs” (Kayess & Sands, 2020: 7). The medical model does not view people with disabilities as rights holders, but are instead “reduced” to their impairments. Exclusion and differential treatment are legitimised by a medically driven incapacity approach to disability.3 The normative standard of the medical model, which conceptualises disability as individual deficit, is now commonly referred to as “ableism” (Devandas-Aguilar, 2019: 3, §9-10; Kayess & Sands, 2020: 9; Clifton, 2020: 15).
10At the core of ableism are the power relations that privilege people without disabilities and devalue people with disabilities and that result in discrimination, inequality and segregation. The ableist normative standard is “embedded deeply and subliminally within culture” (Campbell, 2009a: 22). It lies at the foundation of Western knowledge, “whether it is the ‘species-typical body’ (in science), the ‘normative citizen’ (in political theory), [or] the ‘reasonable man’ (in law)” (Campbell, 2009b: 6).
11While contemporary understandings of disability may have reframed international human rights law, the ableist normative standard is deeply embedded in current law, policy and practice frameworks and everyday individual and community attitudes. Being a norm, ableism is generally internalised (Campbell, 2008: 151), often unstated and so appears natural, neutral (Minow, 1990: 70-6) and benign (Kayess & Smith, 2017: 158), hence the denial or limitation of the human rights of persons with disabilities is legitimised and normalised as benevolent, protective and necessary. Accepted legal and policy responses result in segregation, institutionalisation, loss of autonomy, dependence on others, involuntary interventions, inequality and discrimination, such as through the establishment of “special” institutional living arrangements, “special” schools and workplace settings, parallel transport systems, special access arrangements, substitute decision-making arrangements, compulsory mental health detention, forced treatments and indefinite detention through justice diversion provisions (Kayess & Sands, 2020: 9).
12Prior to the CRPD, international human rights law had failed to uphold the human rights of people with disability. People with impairments were not considered as an equally valued part of the diversity of the human condition. Rather, they were considered as different and apart from the rest of humanity.
- 4 General Assembly, World Programme of Action Concerning Disabled Persons (1982) A/RES/37/52.
- 5 Resolution 56/168 Comprehensive and integral international convention to promote and protect the ri (...)
13Efforts to promote the equalisation of opportunities for people with disability via the 1982 World Programme of Action concerning Disabled Persons (WPA),4 had been insufficient and the complete absence of disability as a Millenium Development Goals (MDGs) specific target or goal prompted Mexico to present a resolution for a convention at the UN General Assembly in December 2001 (Kayess & French, 2008: 17).5 The community of nations subsequently committed to the Convention provisions that were drafted to respond to the institutionalisation, social and economic exclusion, segregation and loss of autonomy experienced by people with disabilities – the ratio legis or the reason for the law.
- 6 Committee on the Rights of Persons with Disabilities, General Comment No. 6 on equality and non-dis (...)
- 7 Committee on the Rights of Persons with Disabilities, General Comment No. 6 on equality and non-dis (...)
- 8 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
- 9 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
14The Convention codifies a human rights model of disability, which provides a significant conceptual shift in how we understand and respond to the phenomenon of disability as societies. The human rights model recognises disability as a social construct,6 values impairment as part of human diversity and human dignity (Degener, 2016),7 and affirms that impairment can never be the basis for the denial or diminishment of human rights.8 It recognises disability as “an evolving concept […] that results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.”9 In other words, the Convention requires a law and policy shift from care, treatment and protection frameworks that justify limitations on the human rights of persons with disabilities to removing barriers and providing support mechanisms to ensure that persons with disabilities can exercise their human rights on an equal basis with others.
- 10 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
- 11 Committee on the Rights of Persons with Disabilities, General Comment No. 6 on equality and non-dis (...)
15The Committee on the Rights of Persons with Disabilities is a body of independent experts established under the Convention10 with a mandate to monitor the implementation of treaty obligations of States that become parties to the Convention. The Committee works within the legal context of its source document – the Convention. Guided by the Convention and its jurisprudence, the Committee frames its interpretation of the Convention within the human rights model of disability, which is articulated in the Committee’s General Comment No. 6 on Equality and Non-discrimination.11
- 12 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
16Despite the Convention setting out the human rights model, the Committee has observed through its reviews of State Party implementation of the Convention that the human rights model of disability is not well understood. It is important to remember that the Convention is a negotiated text and reflects the complexity in the negotiations around shifting from a medical conception of disability as a diagnostic deficit to be cured, to a recognition that disability is socially constructed and acts as a form of oppression that results in inequality, discrimination, and segregation (Kayess & Sands, 2020: 33). It has been noted that “[t]here is a disconnect between the way the Convention scopes the human rights model concepts of ‘impairment’ and ‘disability’ and the language used in the final text” (Kayess & French, 2008: 25). The terms “impairment” and “disability” are often conflated and confused and are used interchangeably in certain parts of the Convention.12 Yet, fundamental to the human rights model is the distinction between “impairment” – a personal characteristic and “disability” – a social construct, elaborated in preambular paragraph (e). It is society that disables, limits or oppresses people with impairments by excluding them from dominant social institutions and arrangements (Kayess & Smith, 2017: 155).
17This conceptual disconnect permeates contemporary law, policy, and practice as well as society in general. This includes regional human rights instruments and judicial interpretation, such as from the European Court of Human Rights (Lemmens, 2024). Many State Parties continue to view their Convention obligations within the medical model of care, treatment and protection framework, holding onto established law, policy and practice frameworks that maintain institutionalisation – segregation, deprivation of liberty and substitute decision-making – and continue to deny or diminish the human rights of people with disabilities, justified by reference to the need to protect, treat and care for people with disabilities, who are commonly considered to be inherently vulnerable. This is often the nomenclature particularly applied to people who have complex or intensive support needs; who are considered a risk to themselves or others; or, who are deemed to lack capacity.
18At the domestic level, the conflation of these two terms permeates the contemporary lexicon of policy makers, legislators, service systems as well as society in general. However, in interpreting and implementing the Convention, and regardless of the language used, legislators, policy makers, and practitioners need to clearly understand the fundamental difference between the concepts of “impairment” as an individual characteristic and “disability” as a social construct. Being willing to understand the difference, means ensuring that the correct concept is applied in order to accurately interpret and implement Convention provisions so that law and policy frameworks promote and facilitate the exercise of all human rights and fundamental freedoms for all persons with disabilities.
- 13 Segregation of People with Disability is Discrimination and Must End, (Position Paper, September 20 (...)
19The result of the unwillingness to understand the difference, is the perverse continuation of institutional arrangements that segregate and congregate people with disabilities, laws that forcibly detain people on the basis of impairment, such as mental health and justice diversion laws and substitute decision-making mechanisms that deny or limit the legal capacity of persons with disabilities. While State parties are heavily invested in these arrangements, there are also well-established infrastructure, funding and vested and professional interests in disability, education, mental health, aged care, justice, and guardianship service systems that support these arrangements. These systems have significant power to influence decision-making and the status and existing financial arrangements are privileged over the rights of people with disabilities.13
- 14 See: Committee on the Rights of Persons with Disabilities, General Comment No. 1 - Article 12: Equa (...)
- 15 Committee on the Rights of Persons with Disabilities, Guidelines on deinstitutionalization, includi (...)
20As a response to the passivity of States parties in this area the Committee has developed a significant body of jurisprudence to elaborate on the interpretation of the principles and standards of the Convention. This jurisprudence is unequivocal regarding institutionalisation and the limitation of rights based on impairment as incompatible with the Convention.14 Institutionalisation is a discriminatory practice, contrary to article 5 of the Convention, constitutes detention and deprivation of liberty based on impairment, contrary to article 14, denies people with disability to right to live independently and be included in the community, contrary to article 19, and is a form of violence against people with disabilities.15
21Addressing the institutionalisation of people with disabilities can only be understood by a holistic analysis of the Convention. The Convention includes three forms of equality – formal, substantive and transformative (Kayess & Sands, 2020: 29). Formal equality is commonly understood as equal treatment and combats direct discrimination; however, it may not recognise difference and hence, can result in unequal outcomes (ibid.). Substantive equality, recognises difference and that the same treatment can result in unequal outcomes, or indirect discrimination. It aims to ensure the inclusion of people with disability and to respect and accommodate difference by removing the detriment, but not the difference (Fredman, 2011: 30). Transformative equality calls on State Parties to change the “structures and systems with a variety of positive measures” (ibid.: 26-9) that disable people. It seeks to dismantle existing power relationships such as those that underpin ableism, and thus is directly linked to the human rights model of disability (Degener, 2016: 35).
- 16 By becoming parties to international treaties, States assume obligations and duties under internati (...)
22The Convention blends civil and political rights and economic, social and cultural rights within the treaty and within the articles. The interrelated and intersecting components of these rights, is central to the concept of transformative equality and is critical to respecting, protecting and fulfilling16 the human rights of people with disability. The Convention can be understood as a roadmap for social transformation, providing a framework for achieving the advancement of people with disability and the development and transformation of societies through the pursuit of disability inclusion and transformative equality (Kayess & Sands, 2020: 31). It can also be understood as an interpretative matrix that
contains the interrelated and intersecting components that are the basis for analysing the normative human rights standard required for compliance. It is the toolkit to apply the human rights model of disability, to advance transformative equality and to achieve social transformation. (Ibid.)
23This means that the institutionalisation of people with disabilities cannot be understood or addressed by merely analysing article 19 of the Convention, Living independently and being included in the community. Although article 19 is a critical element, human rights issues such as institutionalisation can only be effectively understood through understanding the interconnection between article 19 and other substantive articles and provisions – a holistic perspective. The interpretative matrix provides greater clarity on the breadth and scope of rights and elements that need to be considered to meet the normative standard. The approach responds to the experience of people with disabilities, ensures a comprehensive understanding of the pervasive nature of ableism and effectively identifies the required structural reforms (ibid.). The four elements of the interpretative matrix – Preamble, Purpose, Cross-cutting articles, Substantive rights – are the building blocks for the analysis and implementation of article 19 Convention rights. These elements are discussed in turn below.
24The recitals in the Preamble to the Convention outline the areas of international concern that underpin the rationale for the Convention. Among other things, and in the context of institutionalisation, the Preamble recognises:
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- 17 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
discrimination on the basis of disability as “a violation of the inherent dignity and worth of the human person,”17
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- 18 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
the importance of “individual autonomy and independence, including the freedom to make their own choices,”18
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- 19 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
the need for the full and effective participation in all areas of life.19
- 20 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
25The purpose of the Convention is set out in article 1 and establishes the standard of equality. The article makes it clear that people with disabilities should enjoy all human rights and fundamental freedoms on an equal basis with others.20
- 21 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
26The Convention contains a list of eight general principles that derive from existing human rights law:21
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Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons.
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Non-discrimination.
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Full and effective participation and inclusion in society.
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Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity.
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Equality of opportunity.
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Accessibility.
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Equality between men and women.
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- 22 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.22
27The general principles underpin interpretation and provide guidance on implementation and “make it explicit that all human rights and fundamental freedoms adopted by the community of nations apply equally to people with disability” (Kayess & Sands, 2020: 33). States parties interpretation and implementation of the Convention must be compatible with the general principles.
28For example, measures to implement article 19 Living independently and living in the community, must be provided without discrimination. Because article 19 is as much about individual choice, security and being a participating member of the community as it is about the bricks and mortar of housing, non-discrimination would include measures to ensure autonomy and support to make decisions, the opportunity of choice and control regarding personal lifestyle and daily activities, the provision of accessible information and infrastructure and measures to ensure accessible information and infrastructure.
29The Convention contains a series of cross-cutting articles that do not confer a substantive right but need to be applied to facilitate implementation of substantive rights. These articles emphasise that States parties need “to understand the foundational principles for implementation (article 3) and to take positive measures set out in each cross-cutting article to enable effective implementation of substantive rights” (Kayess & Sands, 2020: 36-7).
30The cross-cutting articles are:
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Article 3 General principles.
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Article 4 General obligations.
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Article 5 Equality and non-discrimination [both cross-cutting /substantive].
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Article 6 Women with disabilities.
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Article 7 Children with disabilities.
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Article 8 Awareness-raising.
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Article 9 Accessibility.
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Article 11 Situations of risk and humanitarian emergencies.
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Article 13 Access to justice.
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Article 20 Personal mobility.
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Article 26 Habilitation and rehabilitation.
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Article 31 Statistics and data collection.
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Article 32 International cooperation.
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Article 33 National implementation and monitoring.
31In the case of the substantive right to live independently in the community (article 19), people with disability cannot do so if they do not have access to aids and appliances to facilitate personal mobility (article 20), access to social skills and habilitation supports (article 26), and general access to social infrastructure such as public swimming pools, art galleries, information and communication technologies, child care centres, major hospitals, etc. (articles 4 and 9) (Kayess & Sands, 2020: 37).
- 23 Universal Declaration of Human Rights, GA Res 217A (III), UN GAOR, UN Doc A/810 (10 December 1948).
- 24 International Covenant on Civil and Political Rights, opened for signature 19 December 1966, 999 UN (...)
- 25 International Covenant on Economic, Social and Cultural Rights, opened for signature 19 December 19 (...)
32The substantive rights contained in the Convention are not new rights. They derive from the existing human rights outlined in the International Bill of Rights which incorporates the Universal Declaration of Human Rights (UDHR),23 the International Covenant on Civil and Political Rights (ICCPR)24 and the International Covenant on Economic, Social and Cultural Rights (ICESCR).25
- 26 These principles derive from UDHR and other UN materials, and are now accepted as the central princ (...)
33The central principles underlying international human rights law are that human rights are universal, indivisible, interdependent and interrelated.26 The fulfilment of one human right depends on the fulfilment of other human rights, and the denial of one human right will deny or limit other human rights. This means that implementation of the Convention requires recognition of the interrelationship between substantive rights. The Convention applies these rights in the context of disability and responds to the specific situation of people with disabilities, including in relation to institutionalisation.
34This means that the interpretation and implementation of individual or substantive articles of the CRPD not only requires application of the cross-cutting articles, but also recognition of the interrelationship between substantive articles. For example, article 19, Living independently and being included in the community, will depend on the fulfilment of other substantive rights, such as article 5, Equality and non-discrimination; article 12, Equal recognition before the law; article 14, Liberty and security of the person; article 16, Freedom from exploitation, violence and abuse; article 17, Protecting the integrity of the person; article 22, Respect for privacy; article 23, Respect for home and family; article 24, Education; article 25, Health; article 28, Adequate standard of living and social protection; article 29, Participation in political and public life; article 30, Participation in cultural life, recreation, leisure and sport. Of particular importance to the implementation of article 19 is non-discrimination, the participation of people with disabilities and the recognition of intersectionality. These three elements are discussed in turn below.
35Central to the human rights model of disability is the principle of equality and the legal standard of non-discrimination. Article 5, equality and non-discrimination reaffirms that people with disability are subjects of rights, of equal worth and value and places impairment within the concept of human dignity. Article 5 is critical in the interpretation of all articles. It is a substantive article that must be afforded to all people with disabilities as well as a cross-cutting article. It reaffirms the prohibition of discrimination that is the foundation of international human rights law.
- 27 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
- 28 General Comment No. 5 on living independently and being included in the community, UN Doc CRPD/C/GC (...)
- 29 Committee on the Rights of Persons with Disabilities, General Comment No. 6 on equality and non-dis (...)
36Article 5 contains provisions that require States parties to accelerate de facto equality for persons with disabilities by taking “specific measures.”27 Specific measures are positive or affirmative measures,28 and “must not result in perpetuation of isolation, segregation, stereotyping, stigmatisation or otherwise discrimination against persons with disabilities.”29
- 30 General Comment No. 5 on living independently and being included in the community, UN Doc CRPD/C/GC (...)
- 31 General Comment No 5 on living independently and being included in the community, UN Doc CRPD/C/GC/ (...)
37Article 19 requires the end of segregation and isolation of people with disability from the community in institutional environments of all kinds – not only large-scale institutions, but also group homes or even the family home.30 Living independently and being included in the community on an equal basis with others is about more than a building, it is also about autonomy and individual choice, the freedom to choose where to live, and being a participating member of society on an equal basis with others.31
- 32 Committee on the Rights of Persons with Disabilities, General Comment No. 6 on equality and non-dis (...)
- 33 Committee on the Rights of Persons with Disabilities, General Comment No. 6 on equality and non-dis (...)
38This reflects the Committee’s view that for people with disability to realise their right to live independently and be included in the community, State parties need to take effective and appropriate measures to facilitate the full enjoyment of this right, including implementing deinstitutionalisation strategies and allocating resources for independent living support services – including mental health support services,32 accessible and affordable housing and support services for family carers, amongst other measures.33
- 34 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
- 35 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
- 36 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
39Embedded within article 4, General obligations,34 and article 33, National implementation and monitoring,35 are the requirements for States parties to closely consult with and actively involve people with disabilities, through their representative organisations in the development, implementation and monitoring of legislation and policies to implement the Convention.36
40This reflects the “Nothing About Us, Without Us” motto of the disability rights movement, which was actively involved in the Convention negotiations. This involvement was unprecedented in human rights treaty negotiations, and was a response to the long-standing exclusion of people with disabilities from policy discourse, which was developed and implemented on their behalf resulting in the denial and diminishment of the human rights of people with disabilities. This is evident in the over reliance of segregation and institutionalisation as a default policy response that exists to this day.
41These obligations permeate all actions to implement and monitor the Convention. This means that States parties need to ensure mechanisms are in place for the ongoing engagement of people with disabilities through their representative organisations in design, implementation and evaluation of law and policy.
42Article 4(3) of the Convention requires States parties to closely consult with people with disabilities, through their representative organisations, in matters that affect them – legislation and policies to implement the convention and other decision-making processes. An effective way to fulfil this obligation would be to establish a permanent standing committee to promote its continuity over the long term.
- 37 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
- 38 General Comment No. 5 on living independently and being included in the community, UN Doc CRPD/C/GC (...)
- 39 General Comment No. 5 on living independently and being included in the community, UN Doc CRPD/C/GC (...)
43Additionally, an effective system of accountability for State party implementation of the Convention is the establishment of a permanent and independent mechanism,37 to monitor existing institutions, deinstitutionalisation strategies and the implementation of living independently in the community.38 As with article 4 of the Convention, people with disability and their representative organisations, are to be involved and participate fully in the monitoring process.39
- 40 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
44The Convention recognises that people with disabilities are not a homogenous group, and their experience of discrimination and inequality can be different depending on the layers or intersections of identity. This is specifically outlined in the Convention in the Preamble recitals:40
Concerned about the difficult conditions faced by persons with disabilities who are subject to multiple and aggravated forms of discrimination on the basis of race, colour, sex, language, religion, political or other opinion, national, ethnic, Indigenous or social origin, property, birth, age or other status.
45The Convention also explicitly places obligations on States to address intersectionality through article 6, Women and disabilities and article 7, Children with disabilities. These articles require States parties to recognise the multiple and intersectional discrimination experienced by women and girls with disabilities and children with disabilities and to take measures to address this situation. Together these two articles and the Preamble recitals require States parties to recognise the broad scope of intersectionality and to respond to the diversity of the lives of people with disabilities.
46Article 19 is one of the most intersectional articles of the Convention as it reflects the diversity of cultural approaches to the basic concept of human living:
- 41 General Comment No. 5 on living independently and being included in the community, UN Doc CRPD/C/GC (...)
It means exercising freedom of choice and control over decisions affecting one’s life with the maximum level of self-determination and interdependence within society […], irrespective of race; colour; descent; sex; pregnancy and maternity; civil, family or carer situation; gender identity; sexual orientation; language; religion; political or other opinion; national, ethnic, indigenous or social origin; migrant, asylum-seeking or refugee status; belonging to a national minority, economic or property status; health status; genetic or other predisposition towards illness; birth and age, or any other, status.41
47The concept of “intersectionality” has its roots in US civil rights activism and provides a methodology “to explore the multiple ways in which individuals” personal and group identities and attributes are the vectors along which discrimination, disadvantage and exclusion occur (Byrne, 2023: 1).
48A disaggregated data collection framework would be an effective mechanism to identify the multiple and intersecting ways people with disability experience discrimination and disadvantage in and exclusion from living independently and being included in the community. It would provide the evidence base that reflects the diversity of the population of people with disabilities and would inform policy development, implementation and evaluation.
- 42 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
- 43 General Comment No. 5 on living independently and being included in the community, UN Doc CRPD/C/GC (...)
- 44 General Comment No. 5 on living independently and being included in the community, UN Doc CRPD/C/GC (...)
49The development of such a mechanism, in consultation with people with disabilities, reflects the obligations of the Convention42 and the Committee’s view that in order to identify all forms of discrimination, including intersectional discrimination, is essential to monitor the barriers to living independently and being included in the community and to collect consistent quantitative and qualitative disaggregated data from people with disabilities, including with respect to housing, living arrangements and social protection schemes as well as access to independent living and support and services, and those still living in institutions.43 The data collected should provide evidence of how deinstitutionalization and transition to support services in the community have progressed.44
50Transformation of existing systems can only be achieved by engaging with all elements of the building blocks of the Convention. The logic in understanding the Convention as an interpretive matrix and applying the elements within it, means that States parties can more readily understand the normative standards and obligations within the Convention, more readily develop a comprehensive understanding of the pervasive nature of ableism and its impact on people with disabilities and society as a whole and then to effectively identify the required structural reforms.
- 45 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Exhibit (...)
51Institutionalisation of people with disabilities is one area where the denial and diminishment of human rights based on impairment is deeply entrenched. The reason for this is that society is based on a very narrow ableist norm. As an impairment sits further and further away from the able norm the greater the barriers to living independently and being included in the community. There comes a point where the impairment is labelled disability – a deficit, an individual problem to be solved or cured. The person with disability becomes an object to be acted upon, to be the passive recipient of care and protection. The deficit model, based on the ableist norm, has left people with disability segregated and socially isolated in institutions.45
- 46 Brown v. Board of Education of Topeka, 347 US 483 (1954).
- 47 South-West Africa Cases (Ethiopia v. South Africa; Liberia v. South Africa); Second Phase, Internat (...)
- 48 Brown v. Board of Education of Topeka, 347 US 483 (1954); Warwick McKean, Equality and Discriminati (...)
- 49 Olmstead v L C, 527 US 581 (1999).
- 50 Committee on Economic, Social and Cultural Rights, General Comment No. 13, The right to education ( (...)
- 51 Gerard Quinn et al. Segregation and segregated facilities as a prima facie form of discrimination: (...)
52Segregation has long been understood in international law as not meeting the standard of human dignity (article 3(a)). This can be clearly seen in the doctrinal foundations of discrimination law (Brown and the Board of Education of Topeka)46 and judgements such as the Southwest Africa cases (Liberia v South Africa; Ethiopia v South Africa),47 that have rejected segregation on the basis of race and the doctrine of “separate but equal.”48 More contemporary judgements such as in Olmstead,49 and treaty body jurisprudence,50 recognise segregation on the basis of impairment as a prime facie form of discrimination,51 which is prohibited under article 5, Equality and non-discrimination of the Convention.
53Using the interpretative matrix to analyse the issue of institutionalisation inevitably exposes the segregation, deprivation of liberty and loss of autonomy that is at the heart of institutionalisation and is not compatible with the principles and standards of the Convention, especially the principles of autonomy, diversity, liberty and inclusion.
54Article 19 is about more than bricks and mortar. It is also about autonomy and individual choice (article 12, Equal recognition before the law), choosing where you live and with whom, on an equal basis with others and to be secure in that environment (article 14, Liberty and security of the person) and in line with the principle of full and effective participation and inclusion in society on an equal basis with others (articles 29, 30).
- 52 Council of Europe Commissioner for Human Rights, The right of people with disabilities to live inde (...)
- 53 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Exhibit (...)
55Article 19(b) of the CRPD sets out the right for people with disabilities to access the various services they require to support living and being included in the community and to prevent isolation or segregation from the community. This means that there is a standard that needs to be set, below which inclusion is not possible.52 The choice of where a person lives and with whom should not be limited by the supports that person requires for daily living. Choice is not exercised when people with disability are restricted to living in a particular place to be able to access supports for daily living.53
- 54 Committee on the Rights of Persons with Disabilities, General Comment No. 5 on living independently (...)
56However, the nature of institutional living means that people with disabilities forgo their right to live independently and to choose where and with whom they live in order to receive the support they require for daily living. They lose personal choice and autonomy regardless of the size, name and configuration of the institutional arrangements. Institutions may offer persons with disabilities a certain degree of choice and control, however this is limited to specific areas of life and does not change “the segregating character of institutions.”54
- 55 Committee on the Rights of Persons with Disabilities, General comment No. 1 (2014) Article 12: Equa (...)
- 56 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
57Article 12 affirms that “all persons with disabilities have full legal capacity.”55 This human right is fundamental to the realisation of all civil, political, economic, social and cultural rights and essential to the autonomy of people with disability, which is the first foundational Principle of the Convention.56 The Convention is explicit that legal capacity applies universally to all people and that this principle must be upheld for people with disability on an equal basis with others. However, legal capacity is often denied or limited to people with disability through legal, policy and practice frameworks, and this has significant adverse consequences for the enjoyment of human rights under all other articles in the Convention (Kayess & Sands, 2020: 40).
- 57 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNT (...)
- 58 Committee on the Rights of Persons with Disabilities, Guidelines on the right to liberty and securi (...)
58Article 14 affirms that “all persons with disabilities are to enjoy the right to liberty and security of person on an equal basis with others.”57 However, the denial of legal capacity (article 12) can result in the detention of people with disability in mental health, aged care, or disability institutions and other facilities without the consent of the person with disability or with the consent of a substitute decision-maker. Articles 12 and 14 are central to the implementation of article 19 on the right to live independently and be included in the community,58 so non-compliance with articles 12 and 14 will involve a violation of article 19.
59The two articles provide the key human rights standards to expose the segregation, deprivation of liberty and loss of autonomy that is at the heart of policies, decisions and vested-interests that continue the practice of institutionalisation. Underpinned by ableism, these policy and practice frameworks have sanitised, normalised or hidden the individual and systemic violations of the right to live independently and be included in the community. Reforms of these frameworks have often not questioned the legitimacy of practices that allow for the placement of people with disability in institutional settings, including group homes. Policy shifts to implement deinstitutionalisation often only result in the closure of larger residential institutions and the relocation of individuals to smaller institutional group homes. Many States parties (and other vested interests) continue to remain invested in group home settings as the predominant form of accommodation and support for people with disabilities, rather than recognise the transformative deinstitutionalisation that is required by the Convention to facilitate autonomy, diversity, liberty and full inclusion in society by people with disability.
60The Convention provides an interpretative matrix for the social transformation required to end the inequality, discrimination and segregation that are the enablers of the institutionalisation experienced by people with disability. Implementation of the matrix will require
- 59 Kayess & Sands (2020: 46).
[…] embracing the legal and policy standards provided by the [Convention] to make the conceptual shift that impairment is a valued part of human diversity and human dignity, that disability is socially constructed, and that transformative equality is required to dismantle underlying power relations in law, policy and practice frameworks. If the focus continues to be on fixing, reforming or maintaining existing systems that are built on ableism, the necessary social transformation required by the [Convention] will never be understood or realised. (Kayess & Sands, 2020: 46)59
61The Committee jurisprudence, Concluding Observations on State Party Reports, the jurisprudence of other UN human rights treaty bodies and other materials are available to provide guidance to States parties during the development and implementation of consistent, comprehensive plans of action that are required to transition from ableist policy and practice frameworks that continue institutionalisation to ones that respect, protect and fulfil the human rights of people with disability. It will require a willingness to accept and implement the Convention – the treaty that State parties agreed to at the end of the negotiation process and that they subsequently ratified, acceded to or confirmed.60