Shifting the Balance of Power: The Strategic Use of the CRPD by Disabled People’s Organizations in Securing ‘a Seat at the Table’ (original) (raw)

" Being Number One is the Biggest Obstacle " : Implementing the UN Convention on the Rights of Persons with Disabilities within Nordic welfare services

This paper was inspired by a peculiar theme that emerged from qualitative interviews in Iceland, Norway and Sweden with leaders of Centres for Independent Living (CILs). CILs are peer-led organisations that maximise user-control of disability services. Paradoxically, the Nordic reputation as forerunners in deinstitutionalisation and independent living was considered an impediment to implementing Article 19 of the UN Convention on the Rights of Persons with Disabilities which requires " access to a range of support services, including personal assistance necessary to support living and inclusion in the community ". This contradiction prompted the questions: How is Article 19 implemented in Nordic welfare services? And why is previous progress towards independent living and personal assistance seen as an impediment to implementing the rights-based approach required by the Convention? The findings suggest that it is difficult to change a developed welfare system in which there are vested interests in maintaining the status quo. The reputation of " being number one " conceals problems such as inflexible services and the imbalance of power where the control of services lies with the system and the professionals, not the users.

Implementing the UN Convention on the Rights of Persons with Disabilities within Nordic welfare services

2018

The article draws on a three-year ethnographical study investigating how “service user involvement” was constructed (i.e. understood, implemented, and performed) within two large Swedish welfare organizations – a county-based psychiatric organization and a municipal social service administration (see Eriksson 2015). When analyzing the interactions between the user movement and the welfare organizations, a relationship much like cooptation (Selznick, 1949) was revealed. The article outlines four characteristic features of this coopting relationship: (1) The bonding between the parties, incorporating the user representatives in the organizations and their institutional logic; (2) The organizational framing of the user involvement activities; setting the initial rule for how to act/speak, where to act/speak, when to act/speak as well as what to speak about; (3) The organizational control exercised as the activities took place, directing the discussions and interaction to align with the...

Achieving Disability Equality: Empowering Disabled People to Take the Lead

Social Inclusion, 2018

Achieving disability equality calls for transformative changes to society's structures and norms. Recognizing the central role of disabled people and their organizations in this restructuring, and the call of the Convention on the Rights of Persons with Disabilities (CRPD) for their full inclusion in all legal and policy decisions relating to their rights, this article focuses on how disability groups and organizations regard their ability to effect changes in line with the CRPD. The article draws on qualitative interviews with leaders of disability organizations and activist groups in Iceland in 2016 and 2017. The findings reflect frustration among the leaders with what they perceive to be a lack of sustained progress in the decade since the country signed the CRPD. In their view, this period has been characterized by a lack of meaningful involvement of disabled people in policymaking, and a lack of political will and interest in disability affairs, which has resulted in stagnation. As a result, leaders of disabled people's organizations have begun to change their strategies and are taking steps to redefine their approaches, and reframe the issues and dialogue with authorities in a more progressive manner, demanding to have more say in the process of change.

The Inclusion of the Lived Experience of Disability in Policymaking

Laws, 2017

This paper examines the process under way in Iceland to align national law with the UN Convention on the Rights of Persons with Disabilities, focusing on the Convention's call for the active involvement of disabled people and their representative organizations in policy and decision making on matters that affect them. The paper draws on comments submitted by Icelandic DPOs on draft legislation intended to replace the existing law on services for disabled people, focusing on comments relating to their ability to participate in and affect the policymaking process. Furthermore, it draws on interviews with leaders of representative organizations of disabled people that solicited their views on the issue. The findings indicate that there is a reluctance on behalf of Icelandic authorities to make changes to the established process, which limits the active participation of disabled people and their representative organizations. The draft legislation has neither been revised to include provisions for expanding the participation of DPOs in policy and decision making, nor to ensure that disabled people themselves participate in the process.

The Role of Disability Groups in the Development and Implementation of the UN Convention on the Rights of Persons with Disabilities

Canadian Journal of Disability Studies, 2016

The neoliberal agenda has seen increased engagement of governments and disability organizations in policy making and implementation processes. Yet governments have been slow to address needed changes in disability policy over the last three decades questioning the role of disability organizations who have increasingly turned to rights-based claims on states. The UN Convention on the Rights of Persons with Disabilities which reaffirms in article 29 the full political participation of persons with disabilities is one such example. Unclear, however, is the role of disability organizations in the UN Convention’s development, ratification and implementation. Were disability organizations active and central actors in this process? This article investigates this question in relation to three case studies: Canada, the United States and the United Kingdom. The story that emerges underscores the centrality of disability organizations in policy development during times of government disinter...

Time to be Heard: How Advocates can use the Convention on the Rights of Persons with Disabilities to Drive Change

People who use sign language to communicate have argued that they are a linguistic minority and not disabled. 1 Rather than being disabled, people in this group have argued that they simply speak a language different than others, such as Spanish or Russian. Labeling a person as disabled attracts negative historical baggage. For this reason, some scholars have argued for the term of "ableism" to replace the term "disability discrimination." 2 Although these debates are extremely important, it is equally important to utilize all available tools to achieve social inclusion for all people regardless of their different abilities. This Article will demonstrate how one such tool can be used to benefit persons with disabilities. In particular, this Article will analyze how the norms and state acceptance of the United Nations Convention on the Rights of Persons with Disabilities ("CRPD") can be used by nongovernment organization ("NGO") and disability person organization ("DPO") advocates to drive change in their communities and achieve law reforms where appropriate. 3 Persons with disabilities are the world's largest minority group. 4 Persons with disabilities have historically confronted systemic *

Nothing About Us Without … Who? Disability Rights Organisations, Representation and Collaborative Governance

International Journal of Disability and Social Justice

When governments invite disability rights organisations to policy deliberations, how does the slogan ‘nothing about us without us’ translate into practice? This article draws upon a study about local disability organisations and their relationship to a regional consultative citizens’ council on disability issues in Sweden. Interviews were conducted with organisations that had seats on the council, politicians and officials on the council, as well as with disability organisations without seats on the council. Results show that conceptualisations of ‘disability’ in policies that regulate deliberations not only define what type of organisations are eligible for appointment to the council, but also influence how disability organisations identify, present themselves and what issues they advocate for – leading to divisions among organisations. The findings have implications for collaborative governance structures and disability rights organisations elsewhere – problematising issues around...

The UN Convention on the rights of persons with disabilities and its interpretation (Alter, 2013)

This paper explores the United Nations Convention on the Rights of Persons with Disabilities (CRPD) from a phenomenological perspective. It argues for complementing the predominant juridical approach to the CRPD with attention to the extra-juridical dimension of the constitution of its meaning. The core argument is that disabled people’s collectives should be recognised and admitted as important stakeholders and contributors in the community of interpretation that gives the CRPD its meaning. After briefly introducing the CRPD, the first part of the paper highlights the ubiquity of interpretation and the limits of its juridical regulation. The second part explores some extra-juridical factors that influence the interpretation of the CRPD. Two cases are considered: the socially embedded materiality of the interpretive work of the CRPD Committee; and the politics of interpretation inherent in the CRPD’s translation between languages. The latter is backed up by comparing the English, French, Russian and Bulgarian versions of several CRPD provisions. In conclusion, some methodological and programmatic inferences are drawn from the analysis. In particular, it is argued that disabled people’s civic self-organising is indispensable for sustaining the interpretation of the CRPD along transformative and emancipatory lines.

The UN Convention on the Rights of Persons with Disabilities: Implementing a Paradigm Shift

Implementation of the United Nations’ (UN) Convention on the Rights of Persons with Disabilities (CRPD), together with the new UN commitment to ensure the inclusion of people with disabilities in the post-2015 Sustainable Development Goals (SDGs), should now be considered an overarching priority by organizations and individuals committed to improving the quality of life of people with disabilities. The CRPD is not merely the latest in a long line of UN declarations, but a potential catalyst for a radical reappraisal of policy and practice among governments and organizations of persons with disabilities (disabled persons organizations (DPOs)) and by service planners and providers, members of professional and voluntary organizations, the research community, and by society at large. The 152 governments that have ratified the CRPD have entered into a commitment in international law to submit detailed reports to the CRPD Committee of the UN human rights commission. Although some DPOs have made good use of their right of access to this Committee, there is cause of concern about resources available to others. The Committee’s criticisms of the nature and quality of government implementation highlight the need for sustained and informed advocacy by civil society and the use of the Internet and social media to raise public awareness about the potential of the CRPD to benefit people with disabilities. The author posits that lack of data on persons with disabilities in many countries now presents the most serious obstacle to accountability and monitoring. It is suggested that scientific and professional bodies need to work more earnestly in partnership with DPOs in a combined effort to make a reality of the Convention and the emerging SDGs in a new dynamic of “research to practice.”