It is a strange time to be alive as an Asian American disabled person who uses a ventilator. The coronavirus pandemic in the United States has disrupted and destabilized individual lives and institutions. For many disabled, sick, and immunocompromised people like myself, we have always lived with uncertainty and are skilled in adapting to hostile circumstances in a world that was never designed for us in the first place. Want to avoid touching door handles by hitting the automatic door opener with your elbow? You can thank the Americans with Disabilities Act and the disabled people who made it happen.
Technology, accessibility, and a hardcore will to live shaped me into a cyborg oracle ready to spill some hot truths. I am tethered to and embedded with a number of things that keep me alive: a power wheelchair, a non-invasive ventilator that is connected to my chair’s battery, a mask that goes over my nose attached to a tube, metal rods fused to my spine. How I sound, move, and look elicits pity and discomfort by many in public. This is the norm.
My family and I have been sheltering in place for over three weeks in San Francisco. As news warnings of overcrowding in hospitals and scarce resources push hospitals to consider rationing care, I’m deeply concerned. Already, disability rights groups have filed complaints that some states, such as Alabama and Washington, are making triage recommendations that discriminate against people with disabilities. While the federal health department’s Office of Civil Rights released a bulletin on non-discrimination during the pandemic, I’m still worried. The ethical frameworks for rationing often put people like me at the bottom of the list.
Bioethicists and philosophers like Peter Singer, a utilitarian philosopher infamous in the disability community as someone who advocates for our erasure, have applied cool, rational, elegant arguments and thought exercises on who should live and die during crises like this. But where are the disabled doctors, bioethicists, and philosophers in this global conversation? They actually exist and need to be heard and involved, like Dr. Joseph A. Stramondo from San Diego State University, who wrote a blog post for The American Journal of Bioethics about triage and the coronavirus:
…there is a significant body of empirical evidence showing that there is a substantial gap between a disabled person’s self-assessment and how their quality of life is judged by folks that have never experienced their disability. Some prominent bioethicists even refer to this as the “disability paradox.” To me, there is little paradoxical about disabled people valuing their own life more than it is valued by non-disabled people making judgments based on stereotype and stigma. To conceptualize it as paradoxical is to wrongly assume that disability inevitably diminishes well-being.
Eugenics isn’t a relic from World War II; it’s alive today, embedded in our culture, policies, and practices. It is imperative that experts and decision-makers include and collaborate with communities disproportionately impacted by systemic medical racism, ageism, and ableism, among other biases.
The debates on health care rationing unveil how our society devalues vulnerable populations. Draft guidelines from various states and health systems identified people with dementia, cancer, intellectual disabilities, and many other pre-existing conditions as those who will not benefit from treatment compared to younger, healthier, non-disabled people. Dr. James Keany, an ER physician at Providence Mission Hospital in Mission Viejo, California, was quoted recently in the Los Angeles Times: “As it stands in the US, if your family member is adamant that you would want everything done and you’re 90 years old, wearing a diaper, severely demented, you would get put on a ventilator … Most countries consider that malpractice because what are you saving that person for?”
Everything is personal and political for me. I know people with cognitive and developmental disabilities. I use disposable briefs when needed and require total assistance with my personal care such as eating, dressing, and bathing. Were I to contract coronavirus, I imagine a doctor might read my chart, look at me, and think I’m a waste of their efforts and precious resources that never should have been in shortage to begin with. He might even take my ventilator for other patients who have a better shot at survival than me. All of these hard choices doctors have to make primarily hurt those hit hardest, not the people who present as worthy investments of scarce resources. Who gets to make these hard choices and who bears the brunt of them is a matter of inequality and discrimination toward protected classes.
Even the notion of “quality of life” as a measurable standard is based on assumptions that a “good” healthy life is one without disability, pain, and suffering. I live with all three intimately and I feel more vital than ever at this point in time, because of my experiences and relationships. Vulnerable “high-risk” people are some of the strongest, most interdependent, and most resilient people around. We may still face significant disparities in political power, which results in being left out of policymaking, but we know how to show up for each other. Disabled communities, queer communities, and communities of color have been hustling and providing mutual aid since time began. Many of us know the safety net has gaping holes and the state will not save us, so we’re going to save ourselves with abundance, wisdom, joy, and love.
Disabled people are not acceptable collateral damage in this pandemic. I want to believe that the future is not just mine, but ours. When one of us falls through the cracks, we all suffer and lose something. Time and ventilators are scarce, but we have the creativity, moral courage, and collective power to shape a world that has space for all of us.
Alice Wong is a disabled activist and editor of Disability Visibility: First-Person Stories from the Twenty-First Century by Vintage Books coming out on June 30, 2020.