Introduction

Every day, persons with disabilities face exclusionary practices that deprive them of a wide range of their civil, political, social, economic and cultural rights or at the very least prevent them from fully enjoying and exercising those rights. These exclusionary behaviours or practices can often be attributed to discriminatory attitudes arising from the adoption of a stereotypical medical view of disability that overlooks the personal identity of individuals and environmental factors that play a key role in the origin, persistence and aggravation of disabilities. These attitudes may explain the prevalence of a guardianship-style approach to dealing with persons with disabilities among their families, society and relevant State agencies, whereby persons with disabilities are regarded as embodying a state of permanent vulnerability, albeit to varying degrees. Such an approach imposes care on persons with disabilities rather than ensuring their access to care, culminating in full guardianship that limits – if not completely robs them of – the freedom to make their own choices and take decisions on the most personal of matters.

This exclusionary approach, which is detrimental regardless of its intentions, is used as a basis and justification for depriving persons with disabilities of a significant range of their fundamental rights and freedoms, foremost of which is the right to live independently and be included in the community. The Convention on the Rights of Persons with Disabilities has devoted much attention to this right in light of considerable pressure and efforts from organizations and coalitions of persons with disabilities around the world. The Convention sets out general principles and detailed provisions that promote this right and require States parties to take corrective action to end all institutional and individual practices that restrict the enjoyment and exercise of this right on an equal basis with others.

In addition to the general principles contained in Article 3 of the Convention, foremost among which are respect for dignity, individual autonomy, the freedom to make one's own choices, self-determination and inclusion in various aspects of life, Article 4 stipulates the need to modify any laws that constitute discrimination of any kind, as well as to eliminate any practices that might exclude persons with disabilities. In the same vein, Article 5 of the Convention establishes non-discrimination as a cross-cutting principle that underpins all other provisions of the Convention and applies to all legislation and practices.

Together with Article 19 of the Convention on living independently and being included in the community, these general principles and obligations reveal the intention of the International community to maximize the independence and privacy of persons with disabilities and their ability to exercise legal capacity free from the guardianship of any individual or institution and from any kind of pretext.

Institutionalization continues to be one of the most prominent form of violation of the right of persons with disabilities to live independently, and of other related fundamental rights and freedoms, such as the right to make one’s own decisions; the freedom to make one's own choices; the right to participate in the family and society; the right to access services on an equal basis with others; and the rights to safety, security, movement, physical and psychological integrity, among others. This has led to a worldwide movement against institutionalization and the promotion of independent living in theory and practice. While some States have made reasonable progress in ending institutionalization and promoting independent living, many still provide for institutionalization within their domestic laws, and, unsurprisingly, justify their decision to do so on the basis of the aforementioned medical and welfare models.

Recognizing the rights of persons with disabilities to make their own choices and decisions and live independently is not up for acceptance, rejection or negotiation. This is because States parties to the Convention have freely and sovereignly acknowledged their commitment to all the provisions therein, and once ratified and published in the Official Gazette, the Convention becomes an integral part of domestic legislation, amending any laws, statutes, instructions or decisions that are in conflict with its principles and detailed provisions. Therefore, the task of implementing Article 19 of the Convention and its provisions is already an obligation that is subject to monitoring and for which States parties are held accountable to persons with disabilities, their organizations and the Committee through the mechanisms for the consideration and discussion of reports.

The transition from isolation and institutionalization to community inclusion and independent living undoubtedly requires carefully considered plans and stages, as changing an institutional and behavioural reality that has become established over decades requires tireless effort and collaboration if it is to lead to guaranteed results and fulfil the desired goal, which is for everyone to live and coexist in an inclusive, nurturing environment that caters for individual differences and human diversity.

Purpose

This guide is aimed at providing straightforward information and guidelines to support prompt and effective implementation of Article 19 of the Convention through the review and analysis of relevant legal provisions, relevant literature and examples of best practice from some States. It guides decision makers through a series of steps that, if taken, will contribute to a tangible shift towards inclusive community-based services in the place of institutionalization. It also provides civil society organizations, particularly those of persons with disabilities, with detailed information on effective actions to take in organizing advocacy campaigns at the national level and taking forward lobbying activities, both through the donor community and through effective submissions of shadow reports and other kinds of monitoring reports to the Committee. The aim is to move away from institutional and other isolating environments; promote and provide various accessible, community-based services; and ensure the full enjoyment and exercise of the right to independent living, all by asking and answering crucial questions using analysis and evidence, in addition to arranging for trainees to participate in various interactive activities.

Target Audience

This guide is primarily aimed at organizations of persons with disabilities and individual activists, enabling them to use the information and practical guidance contained therein to understand the nature and components of independent living as stipulated in the Convention; develop advocacy and awareness-raising tools to ensure that this right is exercised on an equal basis with others; work to end the use of restrictive and isolating environments; and replace such environments with inclusive community-based services. This includes putting an end to institutionalization and developing alternatives that ensure complete family and community inclusion for persons with disabilities.

This guide also presents practical guidelines for decision makers on policies and measures to foster a legal environment and practices that promote independent living and help replace institutionalized environments with inclusive community-based services for all, including persons with disabilities.

Methodology

Various theoretical frameworks and practical application methods were used in the preparation of this guide. These are categorized as follows:

1. Key elements of the methodology for preparing this guide included the extrapolation of examples of best practice from countries with similar contexts to countries in the region; a comparative review of literature in the field of independent living, including relevant provisions of the Convention and legislation in a number of Arab and foreign countries that address the rights of persons with disabilities; and the review and analysis of advocacy literature relating to the promotion of independent living. The purpose of these is to show what organizations of persons with disabilities and civil society organizations in general can do on this issue.
2. As for how information is presented, each chapter of this guide is divided into two parts: the first explores the content of the chapter with questions and answers to explain the concepts, information and data covered in the chapter. The second includes exercises that help consolidate the main points made in the chapter and measure the extent to which trainees have correctly absorbed the information. This involves working in groups to answer specific questions, exploring case studies and using role-play, as well as other training methods.