Virtual Advocacy: Lived Experience Takes Center Stage During and After Pandemic

Authors

Abstract

COVID-19 forced a significant change for participants of the Disability Policy Seminar (DPS) typically held annually in Washington, D.C. The DPS is a policy event that both informs its participants about current policy and supports attendees visiting Capitol Hill to meet with legislators. In 2020, the DPS event, which took place during the early phase of the pandemic, was shifted from “on the Hill” to “across the screen”. Through the various lenses of an autistic self-advocate, a mother of a child with a developmental disability, and faculty of a LEND (Leadership Education in Neurodevelopmental and related Disabilities) program, this paper describes the ways in which the nature of our collaborative advocacy effort, from Hill visits to co-authorship, was shaped by changes instituted in response to COVID-19. The authors collectively explored the experience, benefit, and lasting impact of engaging in virtual advocacy from an emancipatory perspective, which highlights the voices of self-advocates and family members of people with developmental disabilities. Benefits of virtual include: 1) minimizing the physical challenges involved for persons with disabilities (particularly those with mobility issues, those who utilize durable medical equipment, and those whose disabilities make transportation challenging); 2) increasing visibility by allowing elected representatives a view into constituents’ homes; and 3) enhancing engagement for participants with different learning styles and those who communicate with support. We conclude with lessons learned within the context of a global public health emergency about how to support authentic collaboration between various stakeholders.

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