Human Rights and Disability

Interdisciplinary Perspectives

John-Stewart Gordon, Johann-Christian Põder, Holger Burckhart

• Publisher: Routledge
• Year: 2017
• ISBN:
  9781317119883
• Edition: 1
• Topic: Law
• Subtopic: Law Theory & Practice
• Index: Law

The formerly established medically-based idea of disability, with its charity-based approach to treatment and services, is being replaced by a human rights-based approach in which people with impairments are no longer considered medical problems, totally dependent on the beneficence of non-impaired people in society, but have fundamental rights to support, inclusion, and participation. This interdisciplinary book examines the diverse concerns that people with impairments face in the context of human rights, provides insights into new developments on important issues relating human rights to disability, and features new approaches and solutions to vital problems in the current debate.

1
General introduction

Human rights and disability – interdisciplinary perspectives

Alicia Ouellette

1. Introduction

In 2016, the UN General Assembly adopted the Convention on the Rights of Persons with Disabilities (CRPD) 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.” Adoption of the CRPD marked and seeded a political and cultural shift by and for people living with impairment, representing an express and legally potent recognition that the presence of a physical or mental impairment should not diminish human dignity or access to opportunity. In large measure, adoption of the CRPD was monumental. For much of history, and throughout much of the world, laws and societal practices have systematized the mistreatment and isolation of individuals living with physical or intellectual impairments. With its promise of inclusion, respect, and dignity, adoption of the CRPD marked significant progress in a decades-long struggle for legally enforceable human rights protections by and on behalf of persons living with physical, mental, and intellectual impairments. Yet a decade later, the CRPD’s effects are neither as pervasive nor as concrete as proponents had envisioned.

2. The challenge continues

Ensuring human rights and equal opportunities for persons living with disabilities remains an enduring challenge. Despite significant social, legal, and political progress made by and on behalf of the hundreds of millions of people who live with disabilities, the challenge is complex and deep. Although most humans will experience temporary or permanent impairments during their lifetimes, and as many as a billion people, or 15 per cent of the world’s population, are estimated to currently live with a disability, understanding of the meaning of disability and a path to full inclusion remains elusive. Individuals, their families, and communities struggle to understand the meaning of impairment in the lives of those living with them. Physical, legal, social, and architectural barriers continue to limit access to education, housing, employment, health, family, and reproduction. These barriers affect the ability of many individuals living with impairment to realize their full human potential.

Some statistics illustrate the scope of the problem. In Europe, people with disabilities are two to three times more likely to be unemployed than their nondisabled counterparts. About 38 per cent of disabled people aged sixteen to thirty-four have an earned income, compared with 64 per cent of nondisabled people. In the United States in 2015, 17.1 per cent of persons with disabilities were employed, compared to 64.6 per cent of those without a disability (US Department of Labor 2016). Throughout the world, people with disabilities are particularly vulnerable to deficiencies in health care services, yet people with disabilities have greater unmet health needs and worse outcomes than people without disabilities. For example, a survey of people with serious mental health disorders showed that between 35 and 50 per cent of people in developed countries and between 76 and 85 per cent in developing countries received no treatment in the year prior to the studies. Women with mobility disabilities receive less screening for breast and cervical cancer than women with full mobility, and people with intellectual impairments are less likely to have their weight checked (World Health Organization 2015). In developing countries, 90 per cent of children with disabilities do not attend school, and the global literacy rate for adults with disabilities is as low as 3 per cent, and 1 per cent for women with disabilities (International Labour Organization 2003). Compounding issues with health, education, and employment (and as detailed later in this volume), bias, stigma, isolation, and forced institutionalization continue to present human rights challenges for individuals living with disabilities.

3. The promise and limitations of a human rights approach

Recognition that disability is a human rights issue has several advantages. Human rights are universal, inalienable rights belonging to all human beings. They cross boundaries and carry moral and legal force. Recognition of human rights empowers individuals and organizations to claim and enforce rights and encourages institutions and governments to provide means and mechanisms to fulfill the promise and corresponding duties of human rights.

With respect to disability, the CRPD was formulated with extensive participation of people with lived experiences with disabilities and their representative organizations to ensure the full and equal enjoyment of human rights by persons with disabilities. The inclusive nature of the drafting process gives the CRPD moral authority for disability advocates who frequently implore others to remember the mantra “nothing about us without us.” The CRPD recognizes eight guiding principles: (1) respect for inherent dignity, individual autonomy, including the freedom to make one’s own choices, and independence of persons; (2) nondiscrimination; (3) full and effective participation and inclusion in society; (4) respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; (5) equality of opportunity; (6) accessibility; (7) equality between men and women; and (8) respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

The CRPD uses these principles to derive general obligations and rules applicable to its state parties. The obligations imposed on the states under the CRPD are sweeping, comprehensive, and suggest priority areas for disability work. Participating states are obligated to introduce measures that promote the human rights of persons with disabilities, such as antidiscrimination legislation and laws that ensure inclusion of persons with disabilities in services, goods, and facilities. In this way, the CRPD, which did not recognize new rights, addressed human rights in the particular context of disability, draws into sharp focus the failure of many nations to provide adequate services and protections to meet the human rights needs of individuals living with disabilities.

Having entered force in 2008, the United Nations established a Committee on the Rights of Persons with Disabilities to monitor its implementation. Countries that ratified the CRPD must report regularly on their progress to the committee. An optional protocol allows citizens in those countries that ratified the protocol the possibility of launching an individual complaint to the committee after exhausting national options.

Translating the promise of the CRPD into practice has been complicated. As explored more fully in this volume, at least three categories of obstacles – theoretical, practical, and implementation based – impede and confound realization of universal human rights for individuals with disabilities.

First, the meaning of disability in the lives of individuals living with impairment is not uniform. Disability in the form of a mobility impairment differs in a fundamental sense from intellectual disability. Further, those born with impairments may experience the trait differently from persons who unexpectedly develop the same trait later in life. Theorists struggle to place the disabling aspects of disability: Is it in the body of the affected injury, in socially created barriers, or in some combination of both? While the CRPD commits to a social model, “recognizing that disability is an evolving concept and that disability 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” (CRPD Preamble (5)), the effect of that commitment is unclear. For example, the social model does not itself distinguish when, in a medical setting, the fact of physical impairment is being considered for legitimate medical reasons and when it is being used based on false assumptions about potential quality of life or as a subterfuge for disability bias. Nor does the CRPD’s adoption of the social model provide clarity as to how to respect the freedom to make one’s own choices for persons with severe intellectual impairment. Further exploration of these theoretical challenges as presented in this volume illuminates these difficulties.

Second, existing structures, practices, and policies impede practical implementation. The principle of accessibility includes a form of positive obligation. That is, accessibility requires a commitment of resources and actions to remove barriers and ensure full participation of persons with disabilities in societal institutions. For example, older buildings must be retrofitted to enable full inclusion to accommodate persons with mobility impairments. Educational programming needs restructuring if schools are to become inclusive of children of all abilities. Health resources must be reallocated to ensure equal access to health by all humans. All of these efforts require resources and commitment, making elusive the goals of full and effective participation, equality, and an end to discrimination. In times of scarce resources, associated costs are a practical and political barrier to implementation.

Finally, implementation itself is an issue. The CRPD is not self-executing. Nation states and regional integration organizations may join as signatories, but enforcement requires action and ratification. By signing the CRPD or optional protocol, states or regional integration organizations indicate their intention to take steps to be bound by the treaty at a later date and to refrain from acts that would defeat the object and purpose of the treaty, but ratification is necessary to create binding legal obligations under international law. Although there are 160 signatories and 161 parties to the CRPD, far fewer have ratified the convention, including the United States and the Netherlands, making its principles aspirational but not legally enforceable in much of the world. Understanding obstacles to ratification, objections to a human rights approach, and the practical challenges with implementation will inform the discussion of an effective human rights approach to disability.

4. An interdisciplinary approach to understanding the promises and challenges of a human rights approach to disability

This book provides a tool for understanding the progress toward and obstacles to ensuring the civil and human rights necessary to human dignity for persons living with impairment. As a whole, the volume challenges its readers to address critical issues surrounding a human rights approach to disability: disability identity, linguistics, law, policy, rights, theology, morality, and justice. The collection addresses central questions such as: How do theoretical models of disability help or hinder the realization of human rights for persons living with impairment? What does it mean to be a rights-bearing person? How does a human rights approach to disability affect bioethical, theological, and educational discourse and thought? What are the strengths and weakness of a human rights approach to disability – from a moral, legal, and practical perspective? Each chapter addresses the central questions through a different lens, drawing on the varied expertise of the authors, to present a panoramic view of the disability rights landscape.

The first two chapters approach disability and human rights from two related disciplines, bioethics and theology, both of which have been charged with historical intolerance for the notion that persons living with disabilities are entitled to full human dignity and rights. In chapter 2, John-Stewart Gordon responds in part to an earlier call for a disability-conscious bioethics, a bioethics that makes central a moral understanding of disability in the lives of individuals living with impairment. Documenting a lack of common understanding of historical and theoretical underpinnings by bioethicists and disability rights advocates, Gordon asks whether “one can ‘do’ bioethics without adhering to the concept of personhood as the prerequisite to assigning moral status – and hence the right to life.” Taking a novel approach, Gordon argues that decoupling moral status from personhood will facilitate discussion and uncover common ground between bioethicists and disability rights scholars, bridging a wide and seemingly impenetrable gap between potential allies. In chapter 3, Johann-Christian Põder rejects traditional theological approaches to disability – those that couch disability as God’s punishment or a test – in favor of a language of love and rights rooted in biblical text. Põder argues for a theology embracing human rights, including disability rights, on the basis of love. A love-based theology, argues Põder, encompasses and supports a human rights–based disability ethics.

In chapter 4, Christopher Riddle argues that the capabilities approach to justice, one focused on an individual’s capability to function, is the conception of justice that best supports a human right to health and absence of disabling barriers. The capabilities approach, argues Riddle, endorses the values underlying human rights: equality, dignity, and autonomy. Donato Tarulli, Dorothy Griffiths, and Frances Owen demonstrate the practical elusiveness of a capabilities-based approach for persons with intellectual and developmental disabilities in chapter 5. They further advance the importance of cultivating a discourse of rights to redress the oppression experienced by people with intellection disabilities, couching their approach to rights in explicitly relational terms: “collectively creating the conditions, capacities, and communities in which the provisions, protections, freedoms, and entitlements” could emerge.

The next chapters focus more specifically on the human right to education. In chapter 6, Holger Burckhart and Bennet Jäger emphasize the importance of education for inclusion and argue that, to achieve inclusion, “we need a paradigm shift at different interacting levels.” Participation, they argue, cannot be dependent on an individual’s ability to adapt to the norm. Instead, educational institutions should be adapted to the individual needs of people with disabilities. It is the state’s role, they argue, to create conditions necessary for inclusion. In chapter 7, Petr Frantik picks up on Burck-hart and Jäger’s argument by focusing on practical implications for integration in German schools. Documenting an ongoing shift from a dual system of regular and special schools to one of integration, Frantik identifies the lack of teacher training and the German educational model of teacher-centered instruction as principal challenges. He presents a model for a more inclusive educational approach that applies various learning and teaching methods, allowing for choices, collaboration, and separate work.

Turning to justice and legal protection, in chapter 8, Hans Reinders uses two cases from the Netherlands in which young people housed in facilities for persons with intellectual disabilities were chained to a wall for years to explore the potential of human rights claims to effect practical change. Specifically, Reinders distinguishes the moral from the legal authority of human rights claims. The moral power of human rights, he says, is to change hearts and minds. No one with intellectual disabilities should be chained to the wall. But in a practical sense, he says, the legal significance of human rights – that is, the ability to enforce the right in a court of law – takes precedence over moral rights. But the law was of no use in the cases studied. Nor was a human rights framework legally enforceable. The Netherlands has signed but not ratified the CRPD. Only when ratified, and when a state has adopted the optional protocol, can an individual go to court. Thus, Reinders concludes that the legal power of human rights may be weak. Nonetheless, he asserts, the moral power of a human rights claim may, in the end, be stronger than legal enforceability because of its power to change hearts and minds. Recognition of human rights abuses appeals to the shared moral consciousness in a way that may more effectively change policy on a national level than individual legal claims.

Jerome Bickenbach is less enamored of the moral persuasiveness of human rights claims. In chapter 9, he argues that the promise depends on implementation. A “true transformation in policy” can only come when aspirational ideals are transformed into actions, not merely at the level of action but at the micro-policy level where state action directly affects the lives and opportunities of persons with disabilities. What stands in the way of implementation – what he calls the “social model fetish” – is the uncompromising interpretations of human rights disability claims. Thus, Bickenbach raises the provocative claim that disability scholars and activists may impede progress toward recognition of human rights regardless of impairment by demanding too much of human rights claims.

In chapter 10, Anita Silvers and Leslie Francis take issue with the human rights model, which they believe rests on a claim that only individuals with definitive human physical or intellectual capabilities are entitled to rights. A civil rights framework, they argue, is a better approach for making progress for inclusive justice for disabled people. “Individuals with disabilities depart species typicality,” but the human rights model invites a one-size-fits-all remedy. As an alternative, civil rights “should be understood in a pragmatic rather than a metaphysical framework, grounded explicitly in acknowledgement of people’s differences rather than rooted in claims about how humans are essentially the same.”

In chapter 11, Michael Boylan struggles with the role of environment on the value or worth of a particu...

Table of contents

• Cover
• Title
• Copyright
• Contents
• Acknowledgments
• Contributors
• 1 General introduction: Human rights and disability – interdisciplinary perspectives
• PART I Human rights and disability: Different voices
• PART II Human development and inclusion
• PART III Justice and legal protection
• Bibliography
• Index