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

Abstract

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 representation, institutionalisation of inclusion and the constantly evolving concept of what counts as ‘disability’.

A Scoping Review of Research Exploring Working Life Practices of People with Disabilities During the COVID-19 Pandemic

“…Also addressed was the lack of intersectional perspectives in previous research and the need for increased involvement and participation of people with disabilities in research. The disability movement has a long history of working with issues related to people with disabilities' rights to participate in and contribute to society, including working life and research conducted in this field (Charlton 1997;Priestley et al 2010;Bahner 2022). 'Nothing about us without us' (Charlton 1997) is a motto pointing out that no policy or decision-making should be done without the direct participation of the people affected by the policy.…”

“…Further on, people with disabilities are less likely to be in paid employment and more likely to be on temporary or part-time contracts, and even more so in the cases of people with intellectual disabilities (Hall 2020;Kock et al 2021). Working life-related issues and education for people with disabilities have been driven by the disability movement, which has historically been described as a powerful actor in society to influence and improve living conditions for marginalised communities (Bahner 2022;Charlton 1997;Priestley et al 2010).…”

Participation, Legal Capacity, and Gender: Reflections from the United Nations Partnership on the Rights of Persons with Disabilities Project in Serbia

“…There is a wide range of socio-legal and disability studies on inclusive processes and the participation of persons with disabilities in policy-making, with notable case studies being presented [27]. However, so far, no studies have specifically focused on processes supported under the UNPRPD initiatives, and literature on Serbia is also limited.…”

The Personal is Political – And Then What? Ideology, Representation, and Legitimacy in a Swedish Disability Organisation

“…Recently, DHR changed the meaning of its name to Disability Human Rights, as did the national umbrella of disability rights organisations, which is now called The Swedish Disability Rights Federation. These changes can be seen in light of a linguistic as well as an ideological move among disability rights organisations wanting to align their advocacy with the United Nations Convention on the Rights of Persons with Disabilities, and a general move towards a human rights focus in Swedish civil society (Bahner 2022;Sépulchre & Lindberg 2020).…”