By Alice Wong: For More Info, Go Here…
As medical rationing becomes a reality, “quality of life” measures threaten disabled people like me.
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.