I’m Disabled and Need a Ventilator to Live. Am I Expendable During This Pandemic?

In the fifth chapter of Foucault and Feminist Philosophy of Disability, I develop the argument that bioethics is a eugenic technology of government that facilitates normalization of the population through strategies such as “quality of life” assessments. I also argue that the intentional and nonsubjective forms of power that motivate bioethics require the exclusion of disabled philosophers from the profession of philosophy. Bioethicists, I argue, serve as the gatekeepers that ensure this exclusion.

In the important essay reprinted below, renowned disabled activist Alice Wong considers the possibility that medical authorities will begin to enact “triage” decision-making that threatens Wong and other disabled people. In the course of Wong’s discussion, they draw attention to the dearth of disabled philosophers and disabled bioethicists in bioethical discussions pertinent to the current pandemic situation.

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I’m Disabled and Need A Ventilator to Live. Am I Expendable During This Pandemic?*

by

Alice Wong

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.

[Description of image below: photo of Alice Wong, who wears a ventilator and looks defiantly into the camera.]

An Asian American woman, dressed in red, with a wheelchair, ventilator and facial oxygen tube.

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.

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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.

*This article orginally appeared on VOX. You can find the original post here.

1 Response

  1. AngryElephant

    This is not a question of “disposable”, this is a case of “should never have been in this situation”. Humans have devolved so much that we keep alive people whose poor lifestyle choices should and eventually do kill them (heart disease, etc) and this takes up resources for people who, through no fault of their own, need medical help – those injured in accidents, or the disabled. Therefore, when it comes to covid-19, those deemed more likely to survive because they are able-bodied are saved over the disabled EVEN WHEN they are less healthy and contracted the disease and suffer worse from it as a result (because obese etc). This is unfair.

    On the other hand, however, there is the interesting question here about quality of life and value of life. Now of course it would seem important to respect the interests of any being who values their own life (not necessarily self-consciously, but just in the sense of wanting to stay alive, caring about what happens to them and so on). Yet also, unless we want to go absolutely nowhere, some paradigm needs to be established for measuring the quality of a life or the prospect for flourishing/etc if one is discussing cases where some standard needs to be established for why/when to let die/help/whatever the scenario, since that is what the whole covid-19 thing seems to unfortunately be boiling down to. A sensible – because non-abstract – paradigm would be species- or kind-relative: so there is a certain standard for each kind or species that beings that are members of that species should live up to in order to be described as “flourishing” relative to that species, and this is relative to the species. So what would be flourishing for a bat is not the same as what would be flourishing for a crocodile, and neither is what would be flourishing for a human. The human standard could be pretty minimal in terms of human life, but would need to be unique and not so minimal that there is nothing human about it. Since severely disabled people do not match this standard (some may argue), then that would in theory be a way to “justify” allocating resources elsewhere for those humans who do meet the standard. A horrible way to do things of course, but it is not completely philosophically unmotivated.

    In regard to the issue of valuing one’s own life, this is a given since one is a sentient individual who doesn’t want to die. So once disabled people exist and are capable then it would theoretically be immoral to just kill them. But in specific scenarios where one is forced to choose between a “normal” able-bodied and healthy person, and a severely disabled person, then the “obvious” philosophical choice would be the healthy person over the disabled. Not because they are “more worthy” of life, or possess more value, but because relative to the human paradigm, one is flourishing more, and will also most likely flourish for longer, short of a total tragedy that unexpectedly ends their life, such as being murdered or in a fatal accident. If this sounds abhorrent, then consider a non-human scenario. Most would not flinch at the idea of euthanising a horse who was born or early-on developed an illness that prevented or greatly impeded their capacity for doing normal horse things such as running, but would consider saving a horse that simply became injured and would recover. Of course it is only speciesism that makes us think it is any worse in the case of humans. For reasons like this, I personally find it really hard to take seriously any arguments for the plight of disabled people facing discrimination in cases like this, since they treat non-humans as objects and entirely disposable themselves. From this perspective it is hard to sympathise, as one is being a hypocrite. Moreover, even those who practice what they preach and are both a disabled activist AND vegan, do so on the fallacious argument that ALL beings must be treated exactly equally in all cases, which itself doesn’t hold up.

    There are far too many humans on this planet, and if we were sensible, we would let covid-19 run its course, giving mild illness and immunity to the species, and those who should never have been kept alive if human beings didn’t keep trying to mess with the planet and play God at everything, would fall ill and some would die. Yet many would not. Call it “fascist” and “evil”, whatever, I don’t care. It’s logical, in fact it’s not even logic, it’s basic natural sense. Most human diseases and disabilities and mutations would not even exist or would not nearly as prevalent as they are, if humans did not eat animals and their secretions, didn’t inject antibiotics into those animals and so precipitate the rise in antibiotic resistant strains of bacteria we can’t cure and which just cause MORE death of people, especially the vulnerable. We should be addressing the root cause and not just sticking a band-aid over massive problems. Covid-19 is just the beginning. I hope humanity wakes the f*ck up or we’re all doomed

    Like

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