Episode: Disability Community Perspectives on COVID-19
Guests: Alice Wong and Joe Stramondo, PhD
Host: Tim Hoff
Transcript by: Cheryl Green
Listen to the podcast here
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TIM HOFF (Host): Welcome to another special edition of Ethics Talk, exploring health equity in the age of COVID-19. I’m your host, Tim Hoff.
Scare resource allocation is a textbook bioethics problem. In times when valuable healthcare resources are limited, how do we then go about deciding who gets what, in a way that’s both fair and just?
There are many models of distribution, and many rely on the seemingly intuitive concept of “quality of life”: If we can protect a person’s quality of life, especially if that person might have more years of high-quality life left, then we ought to prioritize caring for that person. Or so the argument goes.
As with many solutions that seem simple on their face, this one actually isn’t. Problems arising from years of entrenched discrimination against members of oppressed communities, let alone trying to quantify something as elusive and subjective as quality of life leaves many traditional approaches to scarce resource allocation severely lacking in terms of both fairness and justice.
JOE STRAMONDO: There’s this assumption that you need sort of certain things to be part of your life in order to have quality of life. And for many, many people, health is one of those things.
HOFF: On this episode of Ethics Talk, we’re joined by Alice Wong and Dr. Joe Stramondo. Alice Wong is a disability activist, media maker, and consultant, and she is the Founder and Director of the Disability Visibility Project. Dr. Stramondo is an assistant professor in the Department of Philosophy at San Diego State University, where his work focuses primarily on how social and political power shapes the institutions and practices of bioethics. They’re here to discuss how a disability community lens can be helpful in identifying shortcomings in traditional approaches to common bioethical challenges arising in pandemics. We’ll also discuss how we can enrich our conversations about health equity by thinking differently about how we use healthcare resources.
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Alice and Joe, thank you very much for joining me.
ALICE WONG: Thanks for having me on!
STRAMONDO: Yeah, thank you so much. This is exciting.
HOFF: In response to the rapid spread of the novel coronavirus, remote access to goods and services has been key for many of us trying to cope and adapt to this new way of life. Offices, such as the AMA, have transitioned to work-from-home, musicians are streaming their performances, and casual video conferencing between friends is now a main mode of social interaction. From a disability advocacy perspective, though, the sudden focus on accessibility is perhaps both gratifying and frustrating at the same time. Can you help our listeners understand why this might be?
WONG: Yeah. So, it’s been very…it’s been very odd, I’ll just say, Tim. Because—I’ll just speak for myself—I’ve been working mainly from home as a disabled person for over 15 years. So, this has always been my main way of working and interacting with a lot of the world. And you know, a lot of my activism has been centered on online communities because for so many people who are disabled and chronically ill and housebound, this is our lifeline. This is the way we connect with each other. This is the way we find information. This is the way we build community. So, so many marginalized people have found each other through the Internet, and I feel like this is, again, a strange time where all these people now are kind of discovering the power and the benefits of accessibility. Because again, accessibility benefits everyone. And I think what is really frustrating is the fact that disabled people have advocated for all kinds of accessibility and have been either denied or just rejected or dismissed, even though it is a reasonable accommodation. And I think that’s very painful because it’s only now, when non-disabled people are impacted, when they’re “inconvenienced”—and I use quotes on that—when their lives are disrupted, then suddenly, people care about access. So, I feel like the great thing is that everybody’s now a little more aware, but I really think this also erases a lot of the work and the credit that disabled people have not received yet.
STRAMONDO: Yeah, I would quickly just add sort of two points. One thing that I would say is I would sort of characterize a little bit of what Alice just said in terms of disability gain, which is a term that’s sometimes used in Disability Studies that describes how disabled people have an advantage in some contexts by having a disability, right? And so, we live in a global world, one in which people are dispersed, even if they have common experiences and common interests. And so, having the capacity to organize over the Internet, the capacity to build community online in the ways that Alice described is a huge gain. And it’s sort of our experience, I think, that has positioned us to almost lead the way when it comes to living this self-isolated, quarantined lifestyle. And so, it’s almost as if we were, you know, we’ve been waiting decades to do this in the sense that know how to do it. And you can sort of look to us as experts, if you will. And so, I think that’s one thing that I would note.
The other thing that I want to note is that while moving things online can be certainly a move toward universal design, toward reasonable accommodation and so on and so forth, sometimes it can also present accessibility challenges for some people with some disabilities. And so, I just wanted to recognize that really quickly too. I know as an educator, there’s a very different learning environment when I am moving my classes into an online platform, and I have to sort of think about learning differences amongst my students, some of which will be documented and some of which will not be documented. And thinking about how to make the experience accessible to everyone, regardless of if it’s in person or online, but those accessibility needs are going to be different depending on the platform. And educators need to be all thinking about that as they transition over. And so, I guess the point is, is that when we talk about using the Internet as a tool during the pandemic, it has great potential to make things more accessible, but it also has great potential—if we don’t do it right—to make things less accessible to some people.
WONG: And I also think that we also have to think before we overtly praise what’s happening is that the digital divide is very real, and with so much move toward telehealth, we also need to remember that in rural areas and a lot of different communities, they just don’t have access to the Internet. And I think that’s whether that’s because of the costs or whether due to lack of infrastructure. So, there’s a lot of structural issues on accessibility as well.
HOFF: The criteria according to which scare resource allocation decisions should be made almost always include a reference to “quality of life.” Because quality of life is subjective, however, and because we’re so often wrong, as the data suggests, about how we judge other people’s satisfaction with their own lives, quality of life-based criteria can be hard to apply uniformly and equitably and justly. Many have argued in various ways that using quality of life as a criterion is the first step on the slide down the slippery slope to eugenics, and there are very good reasons to take the merits of these arguments seriously. In fact, at least some parts of the federal government seem to be doing so. For example, the Office of Civil Rights in the U.S. Department of Health and Human Services reminds us—and I’m just going to quote this here for the sake of clarity—that, “Persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgements about a person’s relative ‘worth’ based on the presence or absence of disabilities or age. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient and his or her circumstances based on the best available objective medical evidence.”
From your perspectives, what’s helpful about this statement, and what do you remain concerned about, perhaps in particular from other parts of the federal government?
WONG: Yeah, I think I am thankful that there was this statement by the Office for Civil Rights. But I don’t think, you know, that’s just a statement. There’s no kind of accountability or implementation. I think implementation is the real key, and that’s going to happen system by system, state by state. And while they say this means affirming our civil rights and affirming that people cannot, institutions cannot discriminated toward us, we know that this is still quite possibly going to happen. And it’s often going to take legal action to actually make a lot of these changes, as just happened in the state of Alabama, where a series of, a group of disability rights organizations filed a complaint with OCR. And Alabama has removed major parts of their guidelines that restrict disabled people with intellectual disabilities from being a lower priority in ventilators, getting access to ventilators. So, I do foresee a lot of these kind of actions will have to take place because they won’t be really prompted to do the right thing until often forced to. And I think that’s just more of a—call me cynical—but I think that’s probably what we’re going to see more of.
And you know, I think, again, when we think about quality of life, I think all of us need to really question and unpack that term. Because I think for a lot of people, maybe listeners of your podcast, may think that quality of life means a life that’s without suffering or pain or without impairment or one that is independent. And you know, there’s a lot of values that are underlying there of what we consider normative bodies and functioning. And I think so much of this flies in the face of the huge range of human variation and the way that people thrive and adapt with the bodies we have and with the environments that we’re in. And we also can’t separate what’s different about our bodies and the society that we live in, the communities that we’re a part of. I believe that if people had access to the supports and technology that they need, and if people are treated with respect and accepted as they are, quality of life would look very different from the very strictly pathological lens.
STRAMONDO: I think that Alice is spot on in her discussion of quality of life and sort of the intersection between disability and one’s environment as being sort of the thing that determines quality of life. It’s not just about the presence or absence of disability itself. But looking at the language used in the complaint, I do have something of a concern in that it’s prohibiting explicit kinds of discrimination that might be sort of written into guidelines. But the fact of the matter is, a lot of times, the discrimination that might be going on when you’re talking about triage isn’t this overt, right? And so, that’s my real worry here. For instance, the best available medical evidence is what we’re supposed to make the determination based on. Well, the problem with language around the best available medical evidence is that a lot of times, people smuggle in quality of life considerations by talking about health, right, in that they equate quality of life with health, right?
Alice was just talking about how there’s this assumption that you need certain things to be part of your life in order to have quality of life. And for many, many people, health is one of those things. And so, when you write guidelines that direct physicians and triage committees to look at the best available medical evidence, that’s a vague term, right? That’s a very, very vague set of terms. Does this allow a triage committee or a state writing a set of guidelines to consider someone’s health status when considering whether or not they get life-saving treatment? And that’s, in some circumstances or by some interpretations, a real problem. If you are talking about health status in a way that what you mean is well, I’m going to consider how responsive this person will be to this treatment and whether or not this treatment will be futile for this person, then of course, that’s definitely some objective medical evidence that you want to consider when doing triage. But if what you’re saying when you talk about health status is something more along the lines of well, I’m going to prioritize this person who, after the treatment, will be healthier than this other patient who still will be disabled and unhealthy after the treatment, then that’s just sort of talking about quality of life considerations just using different words.
STRAMONDO: And so, that’s a real concern that sort of still remains for me because of some of the vague language here.
WONG: I also think that this also speaks to a larger, more complex conversation about the diversity of the workforce, the diversity of the healthcare profession, and also just historically, I think even now, today, just the very real structural racism and ageism and ableism that’s part of every system, but in particular, healthcare. And I think part of all these guidelines, they don’t really acknowledge the fact that there has been a history of discrimination toward Black and brown people, for women, for disabled people, people with marginalized bodies. And I think this is another thing that I wish more healthcare providers and systems would at least acknowledge because I think that is part of the larger context in which these guidelines are developed. And I think there’s no easy solution or short-term kind of fix for this. It’s a much more complex problem. But I feel like this is a very real thing that has to be brought up as well.
STRAMONDO: Yeah. That reminds me, Alice, of something that I saw the other day. I’m not sure exactly where I saw it, but I saw something maybe on Twitter or Facebook that said, “White supremacy’s a comorbidity for COVID-19.” [chuckles] Which is exactly right, right? In that a lot of times we dress that up, and we talk about social determinates of health and some of these things. But what we’re really talking about is structuralized oppression and how that makes certain people vulnerable to the disease. And then, you turn around and create triage guidelines that make them more vulnerable by taking away their fair chance at treatment. And so, that’s a serious concern.
WONG: Mmhmm. I mean, I think we can look at just now the way I think Black and brown people have spoke out about health disparities in the very beginning of the coronavirus pandemic here. There was a lot of pushback, right? And then suddenly, you see all these horrific statistics about how this disproportionately impacted the people who are non-diagnosed are people who are Black and brown.
WONG: And of course, Black and brown people knew these things, and yet, time and time again, when people speak out and say, “These are things to really look out for,” they’re not really taken seriously until the shit hits the fan. And I think disabled people are part of this chorus.
HOFF: Another common and idealized story we sometimes tell about our optimism about scarce resource allocation relies on the supposed altruism of some people who might “choose” to give up their access to a scarce resource so that somebody else might receive it. Think, for example, of an older patient who forgoes care so as not to take care away from a younger patient. Ignoring, for a moment, that this one-to-one relationship of care between giver and receiver isn’t how healthcare generally works, there are other reasons why this kind of narrative is threatening to people whose identities are minoritized. That threat is that what should be an expression of altruism can all too easily be perceived as an expectation of self-sacrifice among those who’ve always taken for granted that their social worth is more than somebody else’s. So, how do you see this playing out in COVID-19 discussions, and what are the lessons that we need to take with us beyond the pandemic to motivate health equity and health justice over the long-term?
WONG: Yeah. I mean, I have deep, deep concerns about these kind of narratives because this creates this very real pressure to coerce people. And this is not something unique to this pandemic. There have been a lot of conversations and debates around assisted suicide as well, where disabled people and people who are terminally ill or older are made to feel like you’ve lived your life, you are taking up a lot of resources, and maybe it’s time to end. And I think that is really a dangerous kind of culture where we praise these individual situations where people are voluntarily forgoing treatment, forgoing ventilators because now, there’s this kind of expectation that oh, gosh! We kind of assume that older people, disabled people are not deserving of the same resources. I think that’s very, very, it’s eugenics. And a lot of these narratives are what is considered what, there’s a term called “inspiration porn,” which is these kind of stories where they’re in the service of non-disabled people to make them feel better about themselves. And these examples are really about how disabled people and older people are sacrificial lambs who have these noble lessons to teach about empathy and compassion. And so much of this is all in the service of supporting the status quo. And heaven forbid that disabled and older people have critiques or even anger toward the system and inequality.
I think a lot of times, as a disabled person myself, I feel like the public only wants to hear from marginalized people when it’s in praise of those who are the most centered and the most privileged. And we just need to have more space for some really serious and nuanced conversations about these difficult issues where people in power are going to feel uncomfortable, and I think they’re going to feel defensive about it. But I feel like there has to be space for these kinds of difficult conversations and explicit confrontations about the power dynamics.
STRAMONDO: Yeah. I would add something really quick, two things, or maybe not really quick.
HOFF: Yeah, take your time.
STRAMONDO: [laughs] One thing what I would add is that there’s this valorization of self-sacrifice that we tend to have in our culture.
STRAMONDO: But it’s not evenly distributed. There are only some people that we valorize the self-sacrifice of, right? A lot of times, that valorization is directly sort of correlated with how marginalized you are, right? And so, it tracks gender, for instance, in that there’s this expectation of the mother as caregiver. And we valorize the good mother as self-sacrificial, right? It tracks race, it tracks disability, it tracks all sorts of marginalized identities. And that’s a real problem when you only set up the expectation that some people are saintly for sacrificing their own self-interests. That’s a real problem. And so, that’s the first thing that I would say about this topic.
And then the other thing that I would say is that this is not a zero sum game. It’s not that one person has to give up their ventilator for the other person to have it, right? Especially when we’re talking about moving forward, but even during this pandemic itself, it’s not a zero sum game in that we are working frantically to try to build more ventilators. We’re trying to put pressure on the powers that be to use their authority that’s granted to them by different bits of legislation—I think it’s called the Defense Production Act and so on—to try to produce more of these lifesaving resources. We’re not talking about a transplant list with just a very, very limited amount of hearts or something to go around. We’re talking about things that we can build and things that we can buy. And so, this is as much of an economic conversation as it is anything else. And so, to expect someone to sacrifice their own lives for this is, to me, kind of absurd because there’s other ways around it. Maybe not ways that folks with the money in power want to actually create the political will to do, but this isn’t a zero sum game. And there’s ways to not require that level of self-sacrifice from people.
WONG: I was going to say we could also see parallels with the narratives and language used to talk about healthcare workers and essential workers. I mean, let’s talk about the fact, why are so many doctors and healthcare workers having to make their own masks and PPE? I mean, this is where their lives are not acceptable collateral damage. I think this is where they’re valorized as heroes, and people are clapping at certain days and times, but at the same time, they are unfortunately having to accept these unacceptable risks. And to only paint them as heroes kind of glosses over the situation that they were put in, which really shouldn’t have happened at all in the first place.
HOFF: In a recent article, Joe, you argue that we must carefully distinguish between inefficient use of resources and a waste of resources. For readers who haven’t read your particular work on this, can you explain this distinction and why it might help us think a little bit more powerfully about health equity?
STRAMONDO: Sure. So, there have been some arguments regarding triage that sort of admit that we ought not to treat folks that won’t have any benefit from the treatments, the sort of futile care kinds of situations. But at the same time, we’re also seeing arguments that talk about and conflate these kinds of situations with patients that do benefit from the care but just need more of it in order to recover. And they’re both lumped into the same kind of situation, right, as being lost causes I guess, for lack of a better term: Folks that aren’t going to be treated because of the kind of utilitarian calculation that drives many triage protocols and that aims at maximizing the number of lives saved. And I think that there’s a distinction to be made here between these two concerns of how likely is a patient to recover if they receive the scarce resource and this other concern of how much of the scarce resource will the patient need in order to recover. These are conceptually distinct problems and ways of thinking about triage. And I think we need to make that distinction ethically as well because there, I think, is a moral difference between using a resource on someone that will not recover and wasting that resource and using more resources on someone who may have as high a likelihood of recovery as anyone else, but just need more time on the ventilator, right? That might be characterized as an inefficient use of our resources, and I think there’s a difference there.
Both will result in a higher number of deaths, right? But in the first case of it being wasteful use, that’s a situation in which no benefit is gained by the resource. Whereas in the second case, where it’s sort of inefficient, you might not be maximizing the benefit gained, but to the person whose life is saved, it definitely is a benefit, right? And so, we need to think about equity issues here and issues around fairness in access to these resources in addition to thinking about considerations around maximizing the efficiency of the resources. And I think that there’s something to be said about the value of equitable and fair access to the resources, and we don’t want to only be thinking about how many lives are saves, but also which categories of people are being sort of denied access in an unfair way.
HOFF: Thank you very much to both of you for joining me and sharing your thoughts on all of this. [theme music returns] I appreciate how much thought you’ve clearly put into these topics.
STRAMONDO: Thank you very much.
WONG: Well, thank you for reaching out to us. I feel like anyway we can continue these dialogues with people in the medical profession, the better. So, thank you for reaching out.
HOFF: Thank you for listening to this special edition of Ethics Talk, and thank you to Alice Wong and Dr. Joe Stramondo for joining us. Music for this episode was by the Blue Dot Sessions, and fact checking was performed by the journal’s researcher, Shaun Rouser. For more on the ethical challenges of pandemic response, visit our site journalofethics.org where we have collected resources relevant to the current COVID-19 pandemic in our COVID-19 Ethics Resource Center.
As always, please rate, review, and share, and we’ll be back soon with a new episode on shared decision making with people experiencing mental illness. Talk to you then.