Source: Kara Ayers, used with permission
People with disabilities are often overlooked, especially when it comes to policymaking and response mechanisms such as the ones happening now with COVID-19. It is important to both seek to understand and to include those who are disabled so as to avoid discrimination, also known as ableism.
Kara Ayers, Ph.D., is an assistant professor at Cincinnati Children’s Hospital Medical Center and the Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities. She is also the Director of the newly formed Center for Dignity in Healthcare for People with Disabilities. She infuses the mantra “Nothing about us without us,” into her work in the field of disability.
Source: Emily M. Lund, used with permission
Emily M. Lund, PhD, CRC, is an Assistant Professor of Counselor Education in the Department of Educational Studies in Psychology, Research Methodology, and Counseling at the University of Alabama. Her research interests include interpersonal violence and trauma in people with disabilities; suicide and non-suicidal self-injury in people with disabilities; the experiences of graduate students with disabilities; and LGBTQ+ issues, particularly as they intersect with disability. She currently has 80 peer-reviewed publications on these and similar topics. She co-edited the books, Religion, Disability, and Interpersonal Violence (2017) and Violence against LGBTQ+ Persons: Research, Practice, and Advocacy (forthcoming), both published by Springer.
JA: How did you first get interested in this topic?
EL & KA: We have both been involved in the disability community and disability justice work, both personally and professionally, for years. Almost immediately upon learning about the ramifications of COVID and the healthcare response, we became concerned about how our community would be treated in the response to the pandemic. Healthcare systems and state governments were talking about or releasing healthcare and ventilator rationing programs that would likely harm disabled people if they were to become ill with COVID-19. Additionally, we’ve also both done research on ableism in medical ethics and the healthcare system.
JA: What was the focus of your study?
EL & KA: Our goal was to document the ableist biases in many healthcare and ventilator rationing plans, the disability community response, and the connection of these to the longstanding history of ableism and discrimination in healthcare and also society in general. To do this, we documented the responses of disabled activists and allies to healthcare rationing plans released by a number of different states.
JA: What did you discover in your study?
EL & KA: The disability community reacted swiftly and strongly to these plans. The Office for Civil Rights also released guidance to states reminding them that disability civil rights and anti-discrimination laws, such as the Americans with Disabilities Act (ADA), still apply in full during the pandemic and healthcare discrimination on the basis of disability is illegal.
JA: Is there anything that surprised you in your findings, or that you weren’t fully expecting?
EL & KA: As we discuss in the article, the disability community has long been faced with discrimination and devaluation of their lives, up to and including genocide, and so these rationing plans and the ableism in them wasn’t surprising, just an alarming continuation of systemic ableism. It is somewhat a welcome surprise that many of these plans are now being or have been rapidly revised. Although the pandemic has slowed many processes, there are some improvements in the speed of policy changes to respond to these ever-changing circumstances.
JA: How might readers apply what you found to their lives during COVID-19?
EL & KA: It is very important for people to support their disabled family members, friends, clients, and colleagues during this time. In addition to the ubiquitous stress of the pandemic, people with disabilities face additional stress and trauma due to the devaluation and discrimination against people with disabilities that occur during times of crisis. Access needs often aren’t considered during times of crisis and disabled lives can be treated as disposable, both implicitly and explicitly. If readers work in healthcare settings, they can actively work to evaluate policies for potential discrimination and perhaps most importantly, ensure the representation of disabled people at decision-making tables in healthcare settings and beyond. Readers who provide mental health services can assist clients and patients in coping with stresses related to the pandemic, including those related to ableism.
JA: How can readers use what you found to help others amidst this pandemic?
EL & KA: We tend to think of groups like the disability community as “others” if we are not in that group or do not have a close loved one who is. In reality, people with disabilities make up the largest minority group in the United States; more than 1 in 5 Americans have a disability. With this in mind, it’s almost guaranteed that you have someone in your life who is disabled. Recognize discrimination and ableism when you see it—in big and small ways—and take action to combat it.
JA: What are you currently working on that you might like to share about?
EL: I am working on research examining suicide as a consequence of minority stress and interpersonal trauma in people with disabilities. I am also working on other research and writing on the impact of COVID-19 on people in marginalized communities, especially those who have experienced individual or systemic trauma.
KA: I am continuing to integrate a response to the COVID-19 pandemic as it impacts the disability community as Director of the Center for Dignity in Healthcare for People with Disabilities. This role also allows me to work on other medical inequities, including discrimination in organ transplantation and ethical considerations of prenatal genetic testing.