B. Frequently Asked Questions

Q1. What is independent living for people with disabilities and what are its main components?

A1. Independent living is the ability to exercise one's fundamental rights and freedoms and carry out day-to-day activities independently and in accordance with one's own choices without facing discrimination or restrictions due to or on the basis of disability.[1] Consequently, the following are components of independent living:

1. Full recognition of a person's legal capacity without any limitations, and the provision of decision-making support mechanisms[2] for those who need them. There should be no exceptions to the right to make one's own decisions on the grounds of such decisions being "sensitive matters or demanding or difficult for a person to exercise independently". For example, married couples with disabilities may not be prevented from having children on account of fears that a disability may be passed on to a child due to genetic factors, as the decision to have children is to be made exclusively by the couples themselves. The same applies to the right to refuse treatment, as once information has been provided on the possible consequences of the decision not to undergo treatment, a person with a psychosocial, intellectual or other disability cannot be compelled to undergo medical intervention, a decision that must be based on free and informed consent or rejection. Informed consent is, of course, achieved by providing all information and explaining it to the person in a way that he or she can understand;
2. A nurturing environment and the availability of options. A person must be able to compare options before making a decision, as having a single or limited choice undermines the very idea of the right to make one's own choices and decisions. For example, if a blind woman wishes to exercise her right to choose a job or career that matches her aspirations, experience and qualifications, a lack of adapted workplaces and deep-rooted stereotypes about employing persons with disabilities – which deem the most appropriate job for blind persons to be either teaching, playing a musical instrument, administrative work or working as a telephone operator – will force that woman to accept the job imposed on her by a discriminatory culture and unadapted environment. This means that she will be completely deprived of the right to make her own choices and decisions. On the other hand, if a young male wheelchair user with an engineering degree lives in a nurturing environment where workplaces are free of physical and attitudinal barriers, he will be able to choose between several companies and even between different jobs, including those outside his academic discipline should he wish to, provided that he has the required experience;
3. The availability and accessibility of services. Basic services must be provided within the community in accessible formats that allow unhindered, fully independent and private access. These include services relating to the rights to health care; education; employment; movement; access to information; access to justice; decision-making support; protection from violence; political participation; and culture, sports and recreation, as well as other rights and the universally available services related to them. Furthermore, support services should be provided within the community. These include personal companion services, home care services as needed, peer support services and specialized rehabilitation services. Equal access to both basic services and support services must be ensured as a cross-cutting core obligation of the State. For example, an adult with a disability must be able to decide to live alone in his or her own home in a context where adapted services and facilities are available and accessible to them. Otherwise, he or she will remain in a constant state of need and dependence on others. This will restrict or even undermine his or her right to individual autonomy and in turn independent living.

Q2. Are there provisions in the Convention that uphold this definition of independent living and its components?

A2. Yes, the Convention contains provisions that directly and indirectly address independent living and all its components. These can be outlined as follows:

1. Provisions that directly address independent living include Article 19 of the Convention, titled "Living independently and being included in the community." This Article contains a series of provisions that States parties must implement in order to enforce this right and related freedoms. The Article states: "States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that: (a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement; (b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community; (c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs."

   These provisions clearly cover all the components of independent living, foremost among which is the right to make one's own choices and decisions. The text as a whole sets out a range of possible models including ones relating to the right to live independently, particularly the choice to live in an independent home and not in restrictive and isolated residential environments, especially any kind of residential institution, as will be detailed later in this guide. Paragraph (c) of this article also mentions the accessibility component and the absence of obstacles or barriers that prevent or limit access to facilities and services by persons with disabilities.

2. Provisions that indirectly address independent living can be found in several parts of the Convention, particularly:
   • Preambular paragraph (n) of the Convention, which mentions: "Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices."
   • Article 3 (a) of the Convention, which addresses the general principles of the Convention: "Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons".
   • Article 3 (c), which mentions: "Ensuring the full and effective participation and inclusion of persons with disabilities in society."
   • Article 4, which sets out the general obligations of States parties to repeal or amend any legislation or procedures that discriminate against persons with disabilities, as well as to take measures to eliminate all institutional and individual practices that constitute discrimination on the grounds of disability.
   • Article 5, which sets out provisions for equality and non-discrimination on the basis of disability.
   • Article 8, which requires States parties to develop and implement awareness-raising campaigns and programmes on the rights of persons with disabilities, to foster respect for such rights and to promote acceptance of disability in society.
   • Article 9, which covers obligations relating to various kinds of accessibility, including in relation to physical environments, information, communications and the training and qualifications of personnel.
   • Article 12 on legal capacity and support for decision-making, which is of course central to enhancing individuals' ability to independently make their own choices and decisions.
   • Article 13 on access to justice, which guarantees the freedom of persons with disabilities and enables them to seek legal recourse and defence against any violation of their right to live independently, particularly the practice of involuntary placement in care homes and residential institutions of all kinds.
   • Article 14 on the liberty and security of the person, which in paragraph (1) clearly obliges States parties to ensure the liberty of persons with disabilities and ensure that they are not deprived of that liberty in any way or for any reason or pretext based on disability. This is important for persons with disabilities to be able to live independently and not be placed in institutions or centres that constitute restrictive or isolating environments. The paragraph states: 1. States Parties shall ensure that persons with disabilities, on an equal basis with others:(a) Enjoy the right to liberty and security of person;(b) Are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is in conformity with the law, and that the existence of a disability shall in no case justify a deprivation of liberty.
   • Article 15 on freedom from torture or cruel or inhuman treatment or punishment, as the involuntary placement of persons with disabilities in residential institutions and mental health hospitals, and the kinds of isolation they experience in such institutions – which include being subjected to physical or chemical restraints, being deprived of their right to live with their families and within their social networks, and other discriminatory and exclusionary practices – undeniably constitute a clear violation of this Article, its underlying principles and its detailed provisions.
   • Article 16 on freedom from exploitation, violence and abuse, which includes a package of measures and obligations incumbent on States parties to ensure that such practices are prevented, whereby States must promote independent living in the community and move away from the use of institutions and isolating environments that provide a breeding ground for violence and physical and psychological abuse of persons with disabilities.
   • Article 17, which addresses the protection of the physical and psychological integrity of the person, something that can only be achieved in a system that promotes independent living and community inclusion. Institutional and restrictive environments in general play a significant role in the likelihood of a person's physical and psychological integrity being undermined.
   • Article 18 (1), addressing the right to movement and nationality, as it is inconceivable that persons subject to any restrictions on their right to live independently will be able to enjoy liberty of movement and freely and independently choose their country or place of residence.
   • Article 20, establishing the freedom of personal mobility, which goes hand in hand with and is a cornerstone of independent living. It is for this reason that the Convention qualifies the type of mobility to be guaranteed with the term "independence", so that States parties recognize the nature of their obligation in this regard and that it is linked with achieving individual autonomy and independent living.
   • Article 23 on respect for the home and family, as this article goes right to the heart of how independent living is practiced, its requirements and its manifestations. The rights of a person with disabilities to choose where and with whom one lives and to decide whether to found a family and have children constitute personal decisions that express one's individuality and autonomy and their natural right to make their own choices and decisions.
   • Article 24 on the right to education, which has long been and continues to be a reason behind the perpetuation of various forms of institutionalization and forced institutionalization, especially in boarding schools specifically for persons with disabilities, as will be discussed later. This article requires States parties to achieve inclusive education and eliminate the use of restrictive environments.
   • Article 25 on the right to health, as States parties must provide and offer health services to persons with disabilities within their community environments and always with full respect for their autonomy and choices. For this reason, paragraph (d) reminds States parties of their obligation to obtain the free and informed consent of a person with disabilities before providing them with any medical service.
   • Article 26 on habilitation and rehabilitation. A distinctive feature of this article is the clear connection it draws between rehabilitation services and programmes; the achievement of individual autonomy and independent living; and the promotion of inclusion and participation in the local community. This is reflected in paragraph (1) of this article, which states: "States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes: (a) Begin at the earliest possible stage, and are based on the multidisciplinary assessment of individual needs and strengths; (b) Support participation and inclusion in the community and all aspects of society, are voluntary, and are available to persons with disabilities as close as possible to their own communities, including in rural areas."
   • Articles 27, on work and employment, and 28, on an adequate standard of living and social protection. These two articles contain provisions that affirm the right of persons with disabilities to select a job and workplace on an equal basis with others and their right to an adequate standard of living for themselves and their families, as these obligations are essential for achieving and strengthening the independent living system.
   • Article 30 on participation in cultural life, recreation, leisure and sport, as a sign of independent living is a person's ability to express his or her cultural identity independently, without being affected by societal stereotypes relating to disability and without restrictions on this right due to a failure to put in place reasonable accommodations or ensure accessibility.[3] Persons with psychosocial disabilities, for example, must be fully free to express their identity and individuality without the limiting effect of negative stereotypes about psychosocial disability that are prevalent in many societies. The same applies to deaf persons, who should not be prevented from expressing their cultural identity because of the limited use of sign language, and is true for other disabilities.

It is therefore clear that most of the provisions of the Convention on the Rights of Persons with Disabilities, and even its preamble, are closely linked with the right to independent living and its components detailed above. This requires all stakeholders – whether policymakers or executive bodies, as well as organizations of persons with disabilities themselves – to understand independent living from a holistic perspective that addresses and understands the legal basis for each of its elements and components. This is necessary if we want policies and programmes for community inclusion and independent living to be accurately understood and effectively implemented.

Q3. Why does independent living feature so prominently in the Convention and why is it essential in the field of disability?

A3. Independent living features prominently in the Convention because the stereotype that has prevailed for centuries around the world – and remains prevalent in a number of countries – holds disability to be "a kind of defect... a flaw that must be hidden... a burden to be relieved of...". This has led to the emergence of individual and in turn institutional practices based on concealing disability by confining people to their homes and not allowing them to mix with their surrounding communities or perhaps even other family members. This has unfortunately given rise to the emergence of specialized agencies whose facilities are used to detain people with disabilities under the pretext of "rehabilitation ... caregiving ... and respite for families." This has contributed to the expansion of institutionalization, which is the antithesis of independent living and a major obstacle to its consolidation and development. Furthermore, these portrayals of and stereotypes about disability have made restrictive environments in the field of education, in the form of special education centres, as well as in the field of employment, in the form of sheltered workshops, the norm. This has continued to be the case in most countries around the world until recently, and it continues to be the case in many countries in Europe and the Arab region. For example, in Germany, about 300,000 persons with disabilities are enrolled in sheltered workshops.[4] The same is true in Singapore, which adopts this type of restricted work environment institutionally and systematically.[5] That is to say nothing of developing countries, most of which adopt the same approach. These countries – as well as others, such as the United Kingdom,[6] France, the United States,[7] and Arab countries[8] – still rely on restricted learning environments within special education institutions as the main method of educating people with disabilities. This comes at the expense of inclusion, which is progressing very slowly and faces significant attitudinal, legislative and technical challenges in the aforementioned countries.

This continuing exclusionary trend has resulted in independent living becoming a key issue for advocates and supporters of the rights of persons with disabilities. Consequently, the Convention is replete with principles and provisions that address this right and oblige States parties to guarantee and enforce it, as detailed above.