Transcript
Dr Arrianna Planey in conversation with Dr Aimi Hamraie
[Start of recording]
00:00:09 INTRO [Various overlapping voices] Contra* is friction. Contra* is nuanced. Contra* is transgressive—good trouble. Contra* is questions. Contra* is collaborative. Contra* is a podcast. It’s a space for thinking about design critically. Contra* is subversive. Contra* is texture.
00:00:32 Contra* You are listening to Solidarity Chats: a special section of the Contra* podcast on disability, design justice, and the life world. These episodes, recorded during the COVID-19 pandemic, focus on disability, eugenics, and mutual aid. We’re hoping to capture some of the conversations that disabled people, and our allies, are having about issues such as healthcare infrastructure, medical triage, eugenics, and technology as it is unevenly distributed across the population. These episodes are also going to come out at a different rate than the regular Contra* episodes, so please make sure to subscribe on Google, Apple, or Stitcher so that you don’t miss any.
00:01:29 Aimi This is Aimi Hamraie, and I’m thrilled to be here with Arrianna Planey, who is a medical geographer, a deafblind Black woman. She is finishing her PhD at the University of Illinois, and in July 2020 will be starting a new job as Assistant Professor of Health, Policy and Management at UNC Chapel Hill. Arrianna’s work studies equity, health, specifically in the areas of race, disability and class. Welcome, Arrianna.
0:01:57 Arrianna Thank you for having me.
0:01:59 Aimi Yeah. I’m so excited that we get to talk, because we have known each other for a few years through the Disability Geography group at the Association of American Geographers, and also through social media and stuff. And I always just feel like you have really smart takes on everything that’s happening, especially in the worlds of social determinants of health, disability, health geography. So, you were one of the first people I thought of when I started this, sort of, sub-series of the podcast. Because I’m really curious, what’s your take on what’s happening right now with coronavirus, in terms of disability and race?
00:02:43 Arrianna I would just say, first, we can’t understand the disproportionate impact of, you know, COVID-19, coronavirus, on, you know, Black people, Latinx people and people with certain kinds of disability. We can’t understand that without understanding the inequity that preceded the pandemic. Because we’re seeing a lot of takes from people who are, you know, experts in some way, and they’re just expressing shock and dismay at the fact that people who are already disproportionately pre-disposed to poor health outcomes because of these social arrangements, because of these inequitable distributions of social resources that, you know, foster and preserve and enable life, right? But deep inequitable distribution preceded the pandemic, and now there are worsening outcomes for the people who were already disadvantaged before the pandemic. 00:03:45 So, I would say, first, we have to understand that this—that the—the people who are bearing the brunt—or the people who are—the people bearing the brunt of the coronavirus, are also the people who were bearing the brunt before this pandemic. So, we can’t just suddenly care, you know? Like, that care shouldn’t stop when the pandemic ends. And I’m not sure—quite sure we are seeing care. Especially when we’re talking about the—you know, when we started, the number of cases among older adults and disabled people in Italy, there was this emergent discourse of, “Oh well, we had to make this ethical choice to ration healthcare.” And it’s very frustrating because, one, the choice to ration healthcare isn’t merely ethical. 00:04:44 Ethics is not outside of, or above, the social arrangements that do predispose particular groups to shorter lives, and—or, you know, heavier comorbidity, or however you want to define it. And two, the need to ration also arises from pre-, you know, conditions, or, you know, arrangement that preceded the pandemic. But what we’re seeing in Italy with the, you know, reduced healthcare capacity—that was before the pandemic, that was because of these, you know, IMF, World Bank, the sort of like arrangements that punish countries that have lower income. You know, they’ll—these also… countries that have had to take out loans, often the conditions to these loans include reduced—reductions in healthcare expenditures and also public health expenditures. 00:05:46 And that means that you also see cuts in benefits to people with—who are disabled, and this is even in relatively generous social welfare states. So, I mean, that was the—that was the groundwork before the pandemic hit. So, now we’re seeing, like, people using the example of Italy, you know, the COVID cases in Italy, as reasoning or justification for rationing care here in the United States or elsewhere, with the idea that older adults have fewer good years left. Or the idea that disabled patients have—well, are already less productive or, you know, economically viable people, right? So, the idea is that, “Well, we should prioritize the lives of people who can go back to work after they recover.” 00:06:39 And then there’s a third assumption embedded there, where—there’s the assumption that recovering means returning to a state of being non-disabled or able-bodied. The problem is, we’re also seeing—it’s not quite a problem, I wouldn’t say it’s a problem; it’s something we should adjust our expectations and anticipate.… We’re seeing that people who are recovering from this virus, even people who had mild symptoms, are having protracted recoveries. And we’re also, like, in front of prospective insurance companies, right? They’re going to—these are people who are going to be undesirable, in terms of, you know, the profitability of insurance companies. So, you know, if it’s like occupational or disability insurance, …we’re going to see a lot more claims, and then we’re also going to see insurance companies asking for bail-outs, because the—you know, these people are a burden on their business model. 00:07:40 So, I think that there’s just so much happening, and it just all goes back to… the fact that eugenics never went away. We just see it encoded in new and, well, new and different ways that are coming back to haunt us in times of, you know, scarcity, and because the scarcity is born of these neo-liberal policies. So, it’s kind of—it’s almost like, self-reinforcing, it’s like the snake eating its own tail. So it’s like… I guess I always—I kind of, like, the first thought when anyone asked me what my thoughts on the coronavirus, disability and race-related inequity—racial or racism-related inequities and outcomes, it always goes back to the macro-structure, because… that’s what we’re going to have to address if we want anything to be better. 00:08:41 It’s not that there’s anything wrong with the people who are being disproportionately affected or harmed by this pandemic. It’s that social structures have set people up to be more—well as a lot of people say, “vulnerable,” or “susceptible” to worse health outcomes and worse, like, overall outcomes. Because this is going to affect people’s ability to maintain their, you know, maintain their housing, keep their job, and especially when we’re—employment is the main means for getting healthcare coverage. That’s… I would—I know that was a long answer. [chuckles]
00:09:21 Aimi Thank you so much for that analysis. I mean, I think your answer really revealed why we need health geographers to help us understand what is happening. Because, it is occurring at multiple scales, and there are histories and structures at play that are largely elided in this moment, or they’re not at the forefront of analysis. And so, you know, you’re the first person I’ve ever heard talk about, like, the IMF loans, and the effects on Italy’s healthcare infrastructure. That’s not really an analysis I’ve heard anywhere else, so thank you so much for that. I want to go back to something that you said that was also very interesting about Italy, which is that, essentially the epidemiological findings about older people and disabled people being increasingly vulnerable in Italy, have led to policy decisions and triage decisions and kind of bioethical decisions in other places. So, can you just say something about this relationship between epidemiological calculation, and, kind of, projections of data, and then, you know, outcomes as they get applied in other places? Because, I think we’ve seen a few different versions of this during COVID too, with, like, different groups of people as well.
00:10:41 Arrianna Yeah, I would say first everyone should read Michelle Murphy’s work. I mean, just how we conceptualize and define ‘population’ should not go unquestioned. I’m—I mean, just—I can’t do justice to her work, but understanding that fundamentally, population is a calculative concept. And, as we understand it now in statistics, in epidemiology and economics and social sciences, how we define population is often aligned with how states define population, and they’re very instrumental applications. Because, they think a state’s borders build—are understood to bound economies. And people who are in, within those economies, you want to have—optimize that population within that economy, right? So, you want to—this is why you see such stringent restrictions on who can immigrate into a country. 00:11:42 So, like, Canada and the U.S., we’re seeing barriers erected to prevent disabled people from entering those countries. And, like, we’re seeing multiple iterations of the public charge laws that try to prevent people who might take more out of the public pool of social resources than they would put in. And it’s a very narrow idea of what a contribution is. So, I will say, first, we need to understand what a population is, we need a critical understanding of ‘population’. Because it’s not just the number of people within a bound—border, because that’s never been true. Every census excludes people who are low-income. Every census excludes people who are—who do not have—who are not citizens or who do not have documentation that proves their right to be in that—in the country. So, we cannot make the argument that a population is just simply the number of people within a nation’s boundary. 00:12:44 Two, there’s also the… I couldn’t do justice to explaining it, but there’s a concept of ‘disability-adjusted life years’ which is used pretty heavily by both countries. It’s used for health planning, it’s used for insurance and actuarial purposes. And it’s basically the idea that certain conditions reduce one’s quality of life, and also one’s likelihood of living to a certain life expectancy. And the idea is also that, those same conditions also reduce the number of years that you can be productive in an economy, or as—within a labor force. So, the—so that imputes an economic value to one’s life on the basis of one’s disability and health status. 00:13:39 And for these measures the default person is often a twenty-five year-old, white man, who’s considered to be non-disabled. Non-disabled and doesn’t have any, you know, chronic condition. So, the idea that this default person is a young, able-bodied, male person. So, you know, already we’re seeing that most people would deviate from that norm. So, these populations are being made based upon the disability-adjusted life years, and also… to quality-adjusted life years, which is also—penalizes older people. So the idea that…. Well, for the purpose of triaging or rationing healthcare—I like to say rationing because people like to make that talking point of, “Oh well under capitalism, we don’t ration healthcare, we’d only ration healthcare in a communist state,” and it’s like, No no, that’s not true! 00:14:40 You’re rationing healthcare when you make people pay for it. You’re rationing by the ability to pay. I mean, there are just so many ways of rationing healthcare, but that’s the one that people overlook the most. So, these are being used to argue for rationing healthcare on the basis of disability status, age, prog—types of diagnosis. Because we’re even seeing this emerging discourse where, “Oh well, if you have diabetes—if you have underlying conditions like diabetes and asthma, you’re more likely to die of COVID.” And it’s just like, well, what are the environmental and social conditions that predispose people to diabetes and asthma? Both of these are inflammatory conditions. Both of these are born of environmental exposures. Both of these are also born of—well you can think of, like, poor food environment as also an environmental exposure. 00:15:37 Environmental pollution, environmental racism, racism-related stresses that increase our cortisol levels and disrupt our, you know, our body’s ability to function. I heard a metaphor for chronic stress that made a lot of sense. It’s like, if you have a car, and you’re constantly revving the engine. You’re putting stress on the system, and the system will eventually break down. And you can think about our bodies being under, you know, chronic and in constant stress, right? You can think about how that affects our—how we can function as people, as, you know, not just as bodies, but people. So, because that’s already the backdrop, it goes back to what was already… how was life distributed already, before the pandemic? 00:16:44 So, now we’re seeing people, in a bleak way, saying that people who are sick and disabled, people who are Black, people who are Latinx, people who are already predisposed to poor health outcomes because of social conditions—because, we are already seeing them saying, “These people are less deserving of life. These people should not be given an intervention.” And we’re—I’ve already heard of a couple of cases, I don’t remember where, where doctors presumptively put a DNR in patient’s files. And the idea being that, “Oh, well, this person has, you know, this person’s autistic, you know, what quality of life would they have if they, if they have to recover from COVID?” You know, “Well, is the intervention worth it?” And these are the wrong questions. Doctors should not be asking these questions, that’s not their job.
00:17:48 Aimi Yeah, for sure. I want to repeat something that you said that was—to me, it’s like the central question here, is, “How was life distributed prior to the pandemic?” So, can you say more from your perspective as a health geographer, for people who are maybe, like, not as familiar with ideas about health equity and distribution on the basis of race and disability, and also region and things like that, about how life was distributed prior to the pandemic?
00:18:22 Arrianna Yeah, before the pandemic, we saw what should be pretty damning inequities in health status and healthcare quality and access. At the axes of… you know, assigned race, ethnicity, citizenship status, disability status, even on the basis of where you live. I know there’s a—there’s a popular refrain in public health circles where, you know, disparity has become this sort of hot buzzword, you know? Where they say, “Oh, your zip code determines your life expectancy.” And that’s not true. It reflects a sort of ahistorical and sort of mechanistic understanding of the relationship between places and health, and health outcomes. Because when we’re talking about zip codes too, we’re also talking about postal routes, which don’t necessarily reflect neighborhoods, they reflect how one particular arm of the government demarcates space. 00:19:29 It’s not the same thing as a neighborhood, it’s not the same thing as a place. But, the idea that your zip code determines your life expectancy completely elides all of these underlying structural factors that shape health, you know, health inequities, or that produce health inequities. Like… majority Black zip codes; those are there by design, for the most part. You know, you have this history of red-lining, restrictive covenants and other forms of discrimination housing, that socially sorted people by race, ethnicity, class, in space. So it’s like this social sorting in space by design, to maintain a social structure. 00:20:23 A racist—white supremacist, capitalist social structure—white supremacist, capitalist—I guess racist, if you want to make it clear—racist social structure. So, and then along with that, you also have healthcare systems that plan their distribution of the facilities around who lives where. Because healthcare systems, they locate their facilities where there’s higher household incomes, generally healthier populations. The term they’ll often used is “payer mix”. So they want a mix of commercially or privately insured patients, mostly patients who have insurance through their employer, so they’re generally working-age people. So there’s also a bias against areas that have older populations. 00:21:17 Because Medicare, which covers people over sixty-five in the U.S., has lower reimbursement rates, compared with commercial insurance funds. So, people who are working-age are much more desirable patients—much more desirable patient base for healthcare systems. That’s like—that’s two examples: housing and healthcare. And then on top of that, where you see there’s shortages of healthcare facilities, or, you know, inaccessible healthcare facilities, you also see far fewer grocers that carry healthier foods. And, you know, this is all the just, sort of, compound disadvantage. And so, just imagine, you know, I mean, some of us—many of us listening don’t have to imagine. But, you can think about—think it through, you know, these are people who have, who are more predisp—and also I’m going to circle back to the example of racial segregation, racial and ethnic segregation. Racial and ethnic segregation is very closely linked with environmental racism. 00:22:23 So this is where you get, like, the siting of, you know, facility locations for companies in the industry that are known to pollute. You get displacement of landfills or factories or—so, wherever any of these, any number of facilities—or incinerators is a big one, because landfills are becoming full, are nearly full in the United States, so the incinerator industry is becoming a—one way that is going to catch—one industry that’s going to actually catch the excess from landfills. So—but those are disproportionately located in Black and Latinx neighborhoods. And that means they’re exposed to those, you know, particulate pollution 00:23:13. And that means, you know, worse outcomes, worst respiratory outcomes, asthma, and so forth. 00:23:18 So, we can’t talk about health and place, without understanding these historical and socio-political processes that sort people in place by race, ethnicity, class, and also distribute resources in place, relative to where people are. And that’s the underlying, sort of—that’s the sort of—that’s what’s patterning the outcomes that we’re seeing in terms of this pandemic, too. You know, the people—we’re seeing more severe cases in people who have respiratory conditions. We’re also seeing more severe cases in places that have histories of environmental racism. We’re seeing more severe cases in people who already have chronic conditions, who may have, or may have been, immunocompromised, and that’s also associated with environmental racism. 00:24:18 So, like, there’s all these ways that the—that place-making, policy, discrimination—You know, these ways that discrimination by group membership, or different—you know, how we are differentiated it on the basis of race, ethnicity, class, disability status. There’s all these ways that it’s manifesting as worse outcomes amid this pandemic. So, I don’t know if that touched—answered the question?
00:24:44 Aimi Yeah, that was perfect, thank you. So, one of the things I’m wondering about too is, in terms of who—like going back to these eugenic ideas—like, whose death is taken for granted, or vulnerability is taken for granted, and whose is treated as, like, not inevitable? And something I’ve been thinking about a lot, and this goes to something you said very clearly earlier too, is that, you know, this is a case where a lot of people are becoming disabled, if they weren’t disabled already. And yet the issue of disability is so decentered, in, like, the analysis, right? So, like, what can you—do you have any thoughts about that?
00:25:30 Arrianna I have lots of thoughts. What I’m seeing is, particularly among healthcare workers, physicians especially, I’m seeing… it’s a—it’s sort of like two sides of the same coin. One, there’s this emerging discourse that treats patients who have COVID, who are maybe asymptomatic, but not—you know, so they may be have been exposed to COVID, or maybe infected with COVID—sorry, SARS-Cov-2, the virus that causes COVID—they may be infected, but they do not have—they do not display the symptoms. And so there’s this emerging discourse that treats these patients as a threat to these healthcare workers. But they don’t necessarily think it through and think about the facility, the healthcare facility, healthcare system as an eco-system, where some of these people were already disadvantaged and left behind by these healthcare systems. 00:26:34 And two, care provision is a relation—is a relationship. So, our wellbeing is inextricably related. So, you can’t just say that patients are a danger to healthcare workers’ health. How can—I mean, it goes the other way. The hospital-acquired infections that come from contact with healthcare workers, and because healthcare workers are the common point of contact between everyone in the healthcare facility. So, the idea that patients are a special danger to healthcare workers is self-serving and self-centered. I know some are not going to like that I’ve said that but…. And then related to that is another discourse I’m seeing, where healthcare workers who contracted the virus and, you know, have now—now recovered from COVID, are telling their stories. 00:27:34 They’re telling their stories of having acquired these disabilities, even though they don’t name it as a disability. But the story is one of betrayal. Because the idea that physicians—particularly physicians—are not disabled. It’s already difficult to enter that profession if you’re a disabled person. The idea that, you know… these physicians have acquired this virus, in part, possibly because they are in contact with patients who had the virus, and now they are sick people. Now they inhabit this sick role that they’ve never really had to think much about as physicians. And now they have to navigate a system that is hostile to sick and disabled people, and now they feel betrayed. 00:28:23 And there’s almost this—maybe we’re not there yet, but, almost a refusal to recognize their role as physicians in perpetuating that system that punishes or puts more work on sick and disabled people to prove that they’re sick and disabled, to prove that they’re deserving of, you know, certain social supports. You know, there’s this concept of desert—like, you have to deserve the social investment that you—that you draw from. So, I mean that’s—I know this is a fairly narrow slice, but this is what—these are two narratives, that, kind of—two sides of the same coin that I’ve noticed.
00:29:07 Aimi Thank you so much for pointing those out. I’ve noticed them in a way, but the way that you frame them is really helpful then for also understanding how medical ableism continues to be so pervasive and deadly and harmful, in ways that then bounce back into those structures that we were talking about before, and kind of shore them up. And so, I really hope that people who are listening to this podcast and reading the transcript take that to heart as, you know, this shouldn’t be a story that’s just about the uncomplicated and unproblematic work of healthcare workers, like in this moment. It really should be about paying attention to the relationships between healthcare systems and people who are put at risk by healthcare systems, and—as a matter of ableism and, like, labor issues, and things like that. So, I’m wondering if we can kind of go in a more hopeful direction. Are there any projects, networks, solidarities, that you want to signal boost, that you think are doing a good job right now, and that could be things to learn from?
00:30:23 Arrianna Yeah, one of my favorite people on the planet, Miriam Kaba. She is—her—on Twitter her handle is @prisonculture. She’s been organizing, or at least sort of organizing but also signal boosting a lot of mutual aid projects. And so, like, these involve bail bonds—bail bond funds—bail funds, food—what is it?—food bank funds, housing. So, like, all these different dimensions of how people have been affected in the wake of this pandemic. Because it’s not just the virus, it’s the job losses, insecurity, you know? Because we’re seeing—rather than absorb these uncertainties, we’re seeing a lot of institutions just shake off the people who are considered, you know—who are already contingent or otherwise marginalized. 00:31:26 You know, conditionally accepted, even. So, there’s a lot of really important mutual aid work that’s going on and I would recommend—I’ve been signal boosting a lot of projects from @prisonculture—or Miriam Kaba’s Twitter account, and supporting a few of them myself. But… really it’s been really great to see this outpouring of—it was already there, but it’s really great to see this outpouring of work in mutual aid, because we are all we have. I mean, if we don’t have each other, who has us?
00:32:08 Aimi Yeah, absolutely, thank you for signal boosting that. A few episodes after yours, in this series will be two folks from the Disability Justice Culture Club, who have been doing mutual aid in the Bay area around wildfires, and now around COVID-19, and it really is a moment where, as you say, our interdependence and necessity for interdependence is so highlighted. And we have all these great examples to learn from. Are there any final thoughts that you want to share, anything we haven’t covered yet?
00:32:44 Arrianna I think I’ve talked enough? I mean, thank you so much for having me on your podcast. I mean, you’ve had some really amazing guests, or co-hosts on your show, so—
00:32:56 Aimi Oh, it’s been such a pleasure to have you on, and I’m always just so thrilled by—your analysis is so sharp, and also you do such a good job of synthesizing things in a way that helps make them make more sense, and—I wish I could just, like, record you talking about everything, and then give that as a reading to my students, because it would be—that would be really good. And I’m sure that your students at UNC Chapel Hill, in the coming semesters, will be very excited to have you as a professor too… yeah. Well, that might be a good place for us to wrap up, thanks so much Arrianna, it’s been great having you.
00:33:39 Arrianna Thank you.
00:33:39 OUTRO You’ve been listening to Contra*, a podcast about disability, design justice and the life world. Contra* is a production of the Critical Design Lab, learn more about our projects at mapping-access.com, and be sure to follow us on Twitter and Instagram. If you’ve enjoyed this episode, please head over to Apple podcasts to subscribe, rate and leave a review. The Contra* podcast is licensed under a Creative Commons attribution, non-commercial, share/like, international three-point-o license. That means you can remix, repost or recycle any of the content, as long as you cite the original source, aren’t making money, you don’t change the credits, and you share it under the same license.
Transcripts produced by Academic Audio Transcription Ltd (@aat_transcribes on Twitter), by disabled people, for disabled people (and everybody else). Tell us about your transcription or closed caption needs at hello@academicaudiotranscription.com - we’d love to hear from you.