Achieving Disability Equality: Empowering Disabled People to Take the Lead

Abstract

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.

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).…”

“…After the resignation of the disabled representative half way through the process, there was no disabled person in the working group for the remainder of its work, which concluded in October 2016. A study conducted in 2016 and 2017 that examined this process from the perspective of the leaders of disabled people's groups and organizations in Iceland, found a lack of meaningful involvement of DPOs and of political interest in disability affairs, resulting in stagnation in the implementation of disability rights (Löve et al 2018). Despite this reluctance, DPOs continued to maintain pressure on the authorities to include the voices of disabled people and to comply with the CRPD.…”

“…Two umbrella organizations, the Organization of Disabled in Iceland (ODI) and the National Association of Intellectual Disabilities (NAID), have had the right, according to Icelandic law, to be consulted on policy and decision making on issues affecting disabled people. Previous research has found that leaders of both types of DPOs, including those that had a seat at the table, reported having difficulty being heard and perceived consultations often to be more pro forma than truly inclusionary (Löve et al 2018).…”

A practical response to ableism in leadership in UK higher education

“…In each situation, open-ended questions were asked that covered the following topics: Results from interviews, focus groups and questionnaires were combined and thematically analysed together. On the advice of the steering group, the data was not broken down according to impairment category in order to avoid 'homogeneity by impairment label' (Madriaga et al 2008). Grouping responses according to job titles was also avoided, similarly because of the danger of over-generalisation from small numbers.…”

The Inclusion of the Lived Experience of Disability in Policymaking

“…The leaders described how they sought to counter this apathy and to gain recognition of disabled people as experts in their own affairs and as leaders in the fight to secure full rights, a role that has traditionally been occupied exclusively by others. The means they employed were intended to establish disabled people themselves as the ones on the front lines, speaking up, taking to the streets in demonstration, delivering declarations to the authorities, taking the initiative of drafting proposed legislation for submission to the authorities, and writing and publishing first-person accounts of the lived realities of disabled people (Löve et al 2017).…”