COVID-19 and living in a country that disables us
Jennifer A. Stollman, Ph.D., explores why it has taken the Coronavirus Pandemic to realize that excluding major groups of people from the economy, our political system, and social spheres disables us all.
Welcome to a world where we try to normalize devastating events. I am writing these words from my home in Ann Arbor, Michigan with the news cycling through mortality statistics, new and broadening definitions of social distancing, and the fear that comes with the virus’ invisible threats. It strikes me that in many ways, Coronavirus-19 has disabled each and every one of us.
In making this observation, I am not trying to patronize or be reductive, rather, I intend for us to see that this global public health crisis provides us with an opportunity for true empathy and deep respect for people with disabilities. Full disclosure, I am neuro diverse and am writing from my own experience. I also draw on observations, research, conversations with, and from reading pieces authored by other individuals with disabilities.
For the foreseeable future, those who inhabit typical bodies who have previously had to do little to no adjusting in order to live comfortable and productive lives are now given experiential insight into living with disabilities, thanks to the pandemic. I have always been moved by Bala Pillai’s maxim that human beings “are only as disabled as their environment and the beliefs of the people around them.”
Her brilliant insight resonates across our lives now, as COVID-19 has completely collapsed our established political, social, and economic environments. The virus forces us to reinvent our rules and ways of living, loving and working. As we secure our own lives, let us take a moment to consider how folks with disabilities have tilled this land before.
For individuals with disabilities, social distancing is not new, it’s a fact of life as most typical people tend to get very anxious around them. The analogy deepens. Like disabled individuals, now we all face mobility issues–our freedom of movement severely circumscribed. We fear the breakdown of our bodies; shared air may be unclean and compromise our immune systems.
On deep levels, we experience the suffering that accompanies anxiety and depression disorders. We discover that reductive suggestions to treat these conditions with utterances to “call a friend,” “go take a walk,” or “do something that makes you happy” are condescending and ineffective. “Shelter at Home” orders force our dependency on technology for health and safety, human contact and communication, and adaptations required for productive and satisfying work and social lives.
The US zeitgeist has judged atypical bodies negatively as inherently imperfect, inferior, potentially infectious, and dangerous. Under the pandemic, this narrative may now extend to all of us. We live in fear of being judged unworthy. The dearth in testing and life-saving medications and machines has produced ethical debates determining who deserves to have resources expended on them and heart-shattering decisions about who should live and who should not.
Every single one of us who becomes ill stands before well-intentioned but deeply stressed medical personnel panels who must make reflexive decisions based on the long-standing and potentially biased notions about who is valuable and who is disposable.
People without disabilities now realize that tele-health care is unacceptable and dangerous–something people with disabilities have had to contend with and fight against. We now realize that excluding major groups of people from the economy, our political system, and social spheres disables every aspect of our lives.
Disability advocates have been shouting this into the wind for decades. Like disabled people, we now understand what it is like to live mostly in the world of cognitive thinking, that is, most every minute of each day and every step we take is devoted to securing our health and well-being. These are the worlds that people with disabilities often live in and navigate from cradle to grave.
In addition to extending empathy to individuals with disabilities, we can also proclaim our profound gratitude. You can thank disability advocates, their allies, family members, friends, and caregivers for your physical and mental survival and comfort during this very difficult time. Our society mandated that people with disabilities inhabit these territories long before COVID-19 jumped into our blood. Insensitive and blind ableism forced individuals with disabilities to pioneer crucial ways of thinking and environmental remodels.
The deep communication technology dependency that people with typical bodies have developed over the past two months is thanks to individuals with disabilities’ demands for technological innovation. Zoom, Facetime, WhatsApp, Blackboard, and other applications have enabled life-saving tethers to education, work, spirituality, and friendship. You can thank people with disabilities for that.
Also, like others who are under-resourced, disabled folks also developed the strategies for living well while living on less, stretching scant resources, and deciding between necessities and luxuries that people with typical bodies are now relying on. Across generations, disability advocates tirelessly labored to develop and implement the models that society now leans on—models related to successful health advocacy, fulfilling demands for resources and access, healthy interdependence, and arguments related to the right to exist and be seen.
These are historic and life-altering times. We will fall and we will rise. We will repeat this cycle for the foreseeable future. Let us take the time to grieve our losses and discomforts. Let us also celebrate our survival, our innovative spirits, and the reconnections created between our loved ones, friends, community members, and citizens of the world. And, let those with typical bodies acknowledge and recognize the individuals with atypical bodies who, like true pioneers, arrived at these dystopic landscapes before and adapted these for all of us to survive with greater comfort and ease.
When disability advocates demand access and outline advocacy, we should remember the experiences under COVID-19 and heed their suggestions. We now know they speak the truth.