The Inclusion of the Lived Experience of Disability in Policymaking

Abstract

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.

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

“…This paper focuses on the strategies and emphasis adopted by the key DPOs that joined forces and formed a joint working group, which also included representation from the research community, to present a united front in the final stretch of consultations with the Icelandic authorities on the new draft disability legislation. An examination of the DPOs' strategies at this stage of the process was considered pertinent as a study of earlier stages of the process had revealed a lack of political interest on the part of the authorities, including in changing established process norms to ensure the full and effective participation of DPOs in law and policy making, as called for by Article 4.3 of the CRPD (Löve et al 2017;Löve et al 2018).…”

“…They represent a radical change to established norms and processes, where disabled people, through their representative organizations, are recognized as capable and entitled participants who can demand and expect their contributions to be both welcomed and facilitated through reasonable accommodations and support. The call for full and effective participation of disabled people "brings them into the democratic process as contributing participants in the development of solutions to policy issues that take into account different perspectives and needs, in addition to their own" (Löve et al 2017).…”

“…2 The initial stage of the drafting process, begun in 2014, was criticized both for limited representation of disabled people's organizations and a lack of inclusion of the lived experience of disability. The draft legislation was opened for comments in the spring of 2017 and drew strong criticism from DPOs and the research community, inter alia, for the lack of full and effective consultations, as called for by the CRPD (Löve et al 2017). The draft legislation was taken up for further review by the Welfare Committee of Althingi, which called for additional comments and suggestions from DPOs and the Center for Disability Studies at the University of Iceland.…”

“…Several amendments have been made to the law, with the most significant amendment adopted in 2010 instituting major changes to service structures with the responsibility for disability services being decentralized to the municipalities. This amendment included a reference to Iceland's international obligations, particularly the CRPD (Löve et al 2017). Following ratification of the CRPD in 2016, new legislation aimed at aligning Icelandic law with the CRPD were adopted by Althingi, including Law No.…”

“…83/2018, now the central disability legislation in Iceland and the focus of this study. The participation of DPOs in the process is detailed and analyzed, with reference to the aim of the CRPD, in an article published by Laws in 2017 entitled The Inclusion of the Lived Experience of Disability in Policymaking (Löve et al 2017).…”