Bioethics Forum Essay
After the Anniversary of Covid, Reckoning with Many New Normals
Anniversaries are complicated. In rehabilitation psychology, the anniversary of an accident that caused a brain or spinal cord injury can be a time for profound gratitude and for grief. Among veterans, it is often referred to as “alive” day, marking the survival of a brush with death, as well as a time when fellow warriors died. On these anniversaries, the gratitude and grief are intertwined, and mingle with other emotions and recollections.
Now that we have passed the one-year anniversary of the Covid pandemic, each of us continues to deal with the repercussions personally and professionally. For some, the anniversary recalls the death of a loved one. For others, it’s the loss of income or the beginning of the end of their small business. There are the interpersonal losses due to isolation and social distancing. There are the altered friendships impacted by disparate responses to the pandemic. There’s the fear of the unknown. I can clearly remember the point at which hugs and touch started to feel dangerous. We are looking backward and forward trying to figure out what a “new normal” may look like. The new normal is a term I often heard and offered as a clinical psychologist and clinical ethicist working in rehabilitation medicine. After a life-altering event or series of events, how do you accommodate, adapt, plan, and respond to circumstances that have undoubtedly changed your path? In bioethics too, the echoes and reverberating effects of living and working through a global public health crisis are simmering and evolving. We have come through a year of intensely dynamic circumstances and unprecedented resource scarcities, a so-called once-in-a career crisis. And yet I worry that we will meet our new normal with our old ways.
The inextricable links among individuals, families, communities, and cultural contexts are complex, and in the Covid pandemic they were laid bare. I trained in the mid-to-late 1990’s as a clinical and community psychologist, which is unusual in psychology as my program simultaneously taught us about individual variables and systemic and social variables that impact psychological well-being. Although the pandemic amplified the intensity, for decades we have known about health inequities and the unequal impact of illness on people of color, people with disabilities, and people without financial resources. We have also known solutions, including improving access to health care, making structural changes, debunking myths and biases, and examining and learning from the history and complicity of medicine. As the stories of inequities during the pandemic emerged, and continue to do so, I feel exhausted. We have been here before and we do not need more research or data or proof. Yet there is hope that there may be a critical mass that is aware and activated. We have an opportunity to make our new normal different than our old normal.
The unjust treatment of racial and ethnic groups in the United States has also been underscored during the pandemic. As a graduate assistant for Asian-American outreach at the University of Illinois at Urbana-Champaign’s counseling center, I worked alongside my counterparts working with other student communities. We grappled with topics that were common across and within minority groups. For Asian- Americans, the themes of intersectionality–hyphenated identities, model minorities, hate crimes, stereotypes, class differences, immigration, exclusion, being seen as exotic and foreign, being never quite American enough–animated our educational programming and efforts to de-stigmatize and encourage dialogue and change. These are the same themes I hear today as the hate crimes against Asian Americans are on the rise.
In bioethics too, we have given some nods to the importance of diversity, but our old normal is slow to change. At an ASBH meeting about 20 years ago, I was looking for the plenary session and asked someone from the hotel for guidance. They showed me to a room full of people of color–not the meeting I was looking for, but, perhaps, one where I looked like I belonged. It made me smile. I finally found my way to the ethics and humanities plenary session, where I noted the lack of people of color (or as I would say today Black, Indigenous and people of color) and I felt a bit deflated. The absence of people with visible disabilities was notable, too. I hope that my younger bioethics and humanities colleagues have a different experience now.
The ableism of the old normal is so deeply entrenched that we might not even be fully aware of it. The Covid pandemic disproportionately impacted people in nursing homes, many with disabilities. The triage protocols had disability baked into them even as we tried to carefully consider bias. The option of telecommuting, an often sought- after disability accommodation, was suddenly being provided readily when nondisabled people needed it. I worked for 16 years in disability and rehabilitation ethics at the Rehabilitation Institute of Chicago, now the Shirley Ryan AbilityLab, a free-standing rehabilitation hospital with a unique story, including a collaboration with the disability rights community to start one of the largest independent living centers in the U. S., Access Living. Our ethics educational programming and collaborations with faculty in disability studies and teaching of medical and allied health students focused on themes that continue in bioethics today–assumptions about quality of life, lives worth saving, implicit biases, experimentation, exclusion, the language of burden, and cost. During the pandemic, I often felt déjà vu. And yet, there are new voices of bioethicists with disabilities and people entering the field who were born after the Americans with Disabilities Act was passed.
Finally, the old and new normal in bioethics and U.S. society are inextricably linked with socioeconomic factors that overlap with every other group identity. During the spring 2020 Covid surge in New York City, approximately a year ago, the economics became palpable. Some wealthy people fled to second homes. The essential workers who lived in the hardest hit neighborhoods, with the lowest concentration of health care institutions, had no choice but to continue exposing themselves to potential harm. At some point between nurses in garbage bags and morgue trucks, and a fancy ship in the New York Harbor, it hit me that my perceptions about the U.S. health care system were skewed. I lived and worked for one-year stints in Paris, France, and Kolkata, India, and I have worked in a public hospital system. I had what I thought was a healthy skepticism about the gaps in the U.S. health care system. But the pandemic obliterated those perceptions. How can one of the wealthiest nations in the world leave health care workers to wear garbage bags or buy their own personal protective equipment? I recently learned that contract workers in a large hospital system did not have access to the vaccine when employees did, even though they were deemed essential during the worst of the pandemic. And in bioethics and humanities, adjunct faculty without paid sick days or vacation or health care coverage also continued to teach during the pandemic. Will our new normal continue to differentiate among types of workers and employees who work side by side? And what specific role will bioethics and humanities play in advocating for a more just world?
In the last few days, the experience of having loved ones in India as the health system collapses has been harrowing. The parallel streams of vaccine hope and Covid devastation are hitting my social media and personal conversations. So, on this anniversary of the Covid surge in New York City, I find myself looking back and forward and feeling gratitude and grief, mixed with anger, fatigue, and hope. We have unmistakably observed the impact of disparities during a crisis. Maybe the new normal will be a space of growth, adaptation, and innovation in the field.
Debjani Mukherjee, PhD, HEC-C, is a psychologist, clinical ethicist, and faculty member in the Division of Medical Ethics at Weill Cornell Medical College. @DMukherjee9