Ciara Brennan

In this paper, we propose a conceptual framework for understanding the impact of the policy responses to COVID-19 on disabled people. These responses have overwhelmingly focused on individual vulnerability, which has been used as a justification for removing or restricting rights. This suggests the need to shift the attention towards the social determinants of disabled people's vulnerability. We do this by bringing literature on social vulnerability in disaster risk management or ‘disaster studies’ in contact with key concepts in disability studies such as the social model of disability, independent living, intersectionality, and biopower. Empirically, we draw on the findings of the global COVID-19 Disability Rights Monitor (www.covid-drm.org), as well as on reports from academic journals, civil society publications, and internet blogs. We put the proposed conceptual framework to work by developing a critical analysis of COVID-19 policies in three interrelated areas—institutional treatment and confinement of disabled people, intersectional harms, and access to health care. Our conclusion links this analysis with strategies to address disabled people's social vulnerability in post-pandemic reconstruction efforts. We make a case for policies that address the social, economic, and environmental conditions that disproportionately expose disabled people to natural disasters and hazards.

The global COVID-19 Disability Rights Monitor (COVID-19 DRM) has revealed major injustices suffered by disabled people around the world during the first stage of the pandemic, including enhanced institutionalisation, breakdown of essential services in the community, multiplication of intersectional harms, and denial of access to healthcare. In this paper, we present an overview of the COVID-19 DRM and its findings. We also offer a disability studies response by making recourse to the social model of disability, independent living philosophy, and analyses of biopolitics. We argue that the COVID-19 DRM illuminates systemic flaws that predate the pandemic, and that it is these flaws that need to be addressed in post-pandemic efforts at reconstruction.

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.

Article 19 of the UN Convention on the Rights of Persons with Disabilities requires states to provide personal assistance services. This article is based on qualitative research in Iceland, Norway and Sweden, carried out between 2012 and 2013. The overall study focused broadly on the implementation of Article 19. This article, however, reports findings based on a particular group of participants within the larger study: non-disabled parents who coordinate personal assistance schemes for their adult son or daughter. The article examines the various ways in which the parents, the majority of whom were mothers, negotiate principles of independence, choice and autonomy for their adult son or daughter who requires intensive support, including assistance with communicating. The aim is to explore, in the context of the Convention and the principles of the independent living movement, how to acknowledge and conceptualise personal assistance schemes that require another person to manage on behalf of the user.

Article 19 of the UN Convention on the Rights of Persons with Disabilities requires states to ensure that disabled people can choose where and with whom they live with access to a range of services including personal assistance. Based on qualitative research of the implementation of Article 19 in Nordic countries, this paper focuses on Sweden, which was at the forefront of implementing personal assistance law and policy and has been the inspiration for many European countries. Instead of strengthening access to personal assistance, this study found that since the Swedish government ratified the Convention in 2008, there has been an increase in the numbers of people losing state-funded personal assistance and an increase in rejected applications. This paper examines the reasons for the deterioration of eligibility criteria for accessing personal assistance in Sweden. The findings shed light on how legal and administrative interpretations of “basic needs” are shifting from a social to a medical understanding. They also highlight a shift from collaborative policy making towards conflict, where courts have become the battleground for defining eligibility criteria. Drawing on the findings, we ask if Sweden is violating its obligations under the Convention.

Aims: The first Irish digital archive of lifestories of people with intellectual disabilities aims to situate itself as a multimedia learning tool for everyone involved in the lives of people with intellectual disabilities.

Method: Participants in a lifestory study (‘A Story to Tell’) were offered the option of including their story on a digital archive being built at a University in Ireland. 11 of 22 participants agreed, and stories were anonymised, audio recorded, and subsequently transferred to video format. People with disabilities were consulted as to the look and feel of the final archive, to ensure the archive was as accessible in its online form as possible.

Results: The stories of 11 people with intellectual disabilities are now available for reading, listening and watching online. A space has been provided on the archive for other people to have their stories included. The technical elements of creating the archive and in particular the ethical considerations of such a task will be discussed.

Conclusions: Initial feedback and exposure has shown that these inclusive methods for disseminating lifestories are successful and may have benefits beyond the academic and service provider sphere.