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

Abstract

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 disinterest or indifference.

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

“…Examining the state of affairs in France, (Sherlaw and Hudebine 2015) point out that despite policy mechanisms that enable DPOs to provide input into legislative and policy making processes, there are no assurances that the voices of disabled people will be taken into account. Similar results were found in a study of nine European countries-the Czech Republic, Germany, Ireland, Italy, Norway, Serbia, Sweden, Switzerland and the United Kingdom (Waldschmidt et al 2017), as well as in a comparative study of DPOs in Canada, the U.S. and the U.K. (Levesque and Langford 2016). Research focusing on countries in Africa observed that a lack of support, including support from independent national human rights institutions, and funding for capacity building had played a significant role in hindering the full and effective participation of DPOs (Birtha 2013;Lang et al 2011).…”

The Inclusion of the Lived Experience of Disability in Policymaking

“…A study carried out in nine European countries on the ability of organizations representing disabled persons to affect the implementation of the CRPD on a national level found mixed results, with some organizations reporting having difficulty affecting policy outcomes despite being represented in the process ). Other international research-including in Italy (Biggeri et al 2011); Bulgaria (Mladenov 2009); Canada, the U.S. and the U.K. (Levesque and Langford 2016); and Africa (Lang et al 2011)-has also pointed to mixed results with regard to the ability of DOs to affect policy and have concluded that both structural and attitude changes are needed, as well as ensuring sufficient resources and capacity building among disabled people and DOs, to effectively participate in policymaking processes. There is, however, as stated earlier, a need to differentiate between, on the one hand, the right to full and active participation in the policymaking process on equal footing with others, and, on the other, the demand that one's opinions, perceptions and suggestions be included in the policy outcome.…”

Exclusion to Inclusion: Lived Experience of Intellectual Disabilities in National Reporting on the CRPD

“…A body of research exists that has focused on the right of participation in policymaking and implementation from the perspective of DPOs, including Kumpuvuori and Virtanen (2017), who provide an analysis of what constitutes full and effective consultations, as called for by the CRPD; Sherlaw and Hudebine (2015), who focus on the issue from the French perspective, drawing attention to the lack of assurances that the voices of disabled people will be heard and taken into account; Levesque and Langford (2016), Lang et al (2011), andMcVeigh et al (2021), who all focus on the issue from different national perspectives. However, to date, there is limited research that focuses specifically on the active participation of people with intellectual disabilities in consultation processes concerning implementation and policy development, as called for by the CRPD in articles 4.…”