Rights in Crisis: Lived Experience as Knowledge in Policy Development During the COVID-19 Pandemic

The Convention on the Rights of Persons with Disabilities recognises the value of knowledge derived from lived experience with disability as a vital part of the co-production of policy affecting disabled people. Furthermore, Article 11 of the Convention specifically highlights the need to safeguard the rights of disabled people during times of crisis. This paper draws on interviews with representatives of Icelandic disabled people’s organisations conducted from 2021 to 2023. Informed by the human rights approach and feminist standpoint theory, it explores critical issues raised by representatives of disabled people regarding the capacity of Icelandic DPOs to effectively participate in policymaking during the pandemic. The findings demonstrate the value of the lived experience of disability, which enabled DPOs to promptly advocate for effective solutions. However, collaboration and consultation were limited, and DPOs were not involved in important decision-making, suggesting their role as knowledgeable stakeholders remains undervalued.