In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19.
This research highlights the crucial role of an intimate link between a disabled person's self-identity and the perceived fairness of legal procedures. In doing so, it brings to the foreground a wholly ignored aspect of procedural justice. Earlier researchers have failed to delve into the role identity politics plays in the relationship between the institutions and the beneficiaries of their services, and the way different members of a group understand and define themselves. This research explores the way people with disabilities in the United States, with different kinds of disability identities, experience and evaluate the procedure of claiming Social Security benefits. The findings suggest that disabled people who identified with the social model of disability (as opposed to the medical-individual models) hold a critical view of the procedure for retaining benefits. They felt they had no control over it, could not voice their opinions, were mistreated by representatives, and had to present an image that was not necessarily true of their disability. They also saw the procedure as discouraging them from participating fully in the labor market, and consequently integrating better in society, an idea that was not present among disabled people who identify with medical-individual models. Exposing this relationship between the way people perceive themselves and the way they experience and evaluate legal procedures can contribute to the creation of better policies, while improving communication between the state and members of the disability community, along with other marginalized groups.
Context: COVID-19 has prompted debates between bioethicists and disability activists over Crisis Standards of Care plans (CSCs), triage protocols determining the allocation of scarce lifesaving care. Methods: We examine CSCs in 35 states and code how they approach disability, comparing states that have revised their plans to those that have not. We offer ethical and legal analyses evaluating to what extent changes to state policy aligned with disability rights law and ethics during the early pandemic and subsequently, as stakeholder engagement grew. Findings: While disability rights views were not well represented in CSCs that were not updated or updated early in the pandemic, states that revised their plans later in the pandemic were more aligned with advocate priorities. However, many CSCs continue to include concerning provisions, especially the reliance on long-term survival, which implicates considerations of both disability rights and racial justice. Conclusions: The disability rights movement’s successes in influencing state triage policy should inform future CSCs and set the stage for further work on how stakeholders influence bioethics policy debates. We offer thoughts for examining bioethics policymaking reflecting the processes by which activists seek policy change and the tension policymakers face between expert delegation and mediating values conflicts.
Masking or face covering amid the global coronavirus disease 2019 (COVID-19) pandemic has emerged as a highly polarizing practice, with surprising partisan divisions. While masking remains
This article presents a new framework for analyzing the development and implementation of disability law: the prism of the fear of “the disability con”—popular perceptions of fraud and fakery. We all encounter disability rights and accommodations in everyday life. However, people with disabilities pay a price for the legal recognition of their rights. People who park in disabled parking spots, use service dogs, move to the front of lines, receive Social Security benefits, or request academic accommodations are often viewed as faking disabilities and abusing the law. This disability con stereotype thus serves as an important invisible barrier preventing Americans with disabilities from fully taking part in society, as it not only undermines the public legitimacy of rights but also restricts the design and implementation of the legal regime illustrating those. Nevertheless, this moral panic around disability con in American society and its manifestations has yet to be studied in a systematic‐empirical way, nor has it been addressed in sociolegal scholarship. Using a mixed‐methods approach composed of an original nationally representative survey along with in‐depth interviews, this article fills this gap. The data suggest that the stereotype of disability con applies to multiple disability rights across venues and contexts; that nearly 60% of Americans with disabilities feel that others question their disability; that the stereotype of disability con extends to visible disabilities and to less apparent ones; and that, counterintuitively, the people most suspicious are nondisabled individuals with a personal connection to a disabled person and disabled people who experience suspicion themselves. Based on the richer understanding of the sociolegal phenomenon, this article suggests strategies to increase trust and reduce suspicion of the disability con.
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