The Purge, 2020 edition

Rebecca talks to disability lawyer Matthew Cortland about the impact of the COVID-19 pandemic on the disability community so far, the ageism and ableism underpinning claims that “we need to learn to live with it,” and more. Subscribe to Off-Kilter on iTunes.

As we head into the 9th month of the COVID-19 pandemic, the death toll from the novel coronavirus is now well over 200,000 and counting. Meanwhile, untold numbers of people impacted by COVID-19 but who have been lucky enough to survive the illness will face new health conditions, disabilities, and chronic illnesses, making them new members of the disability community, as friend of the show Rebecca Cokley, who heads CAP’s Disability Justice Initiative, has put it. So as Off-Kilter steps back to take stock of the impact of the pandemic and economic downturn particularly on marginalized groups, the lessons we’ve learned, and the policies advocates, experts, and struggling families are urging Congress to include future aid packages, Rebecca talks with Matthew Cortland, disability lawyer and policy analyst.

This week’s guest:

• Matthew Cortland, disability lawyer and policy analyst (@mattbc)

TRANSCRIPT:

♪ I work and get paid like minimum wage

Sights to hit the clock by the end of the day

Hot from downtown into the hood where I slave

The only place I can afford ’cause my block ain’t safe

I spend most of my time working, tryna bring in the dough…. ♪

REBECCA VALLAS (HOST): Welcome to Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by the Center for American Progress Action Fund. I’m Rebecca Vallas.

As we head into the seventh month — what is time? But we think it’s seven months maybe — of the COVID pandemic and perhaps one of the highest stakes elections of any of our lifetimes, the death toll from the novel coronavirus is now well over 200,000 and counting. Meanwhile, untold numbers of people impacted by COVID-19, but who’ve been lucky enough to survive the illness, will now face new health conditions, disabilities, and chronic illnesses, making them new members of the disability community, as my good friend Rebecca Cokley, who leads CAP’s Disability Justice Initiative, has put it more than once.

So, as Off-Kilter steps back to take stock of the impact of the pandemic and the economic downturn that it spurred, particularly on marginalized groups, the lessons we’ve learned, and the policies that advocates, experts, and struggling families are urging Congress to include in future aid packages, I’m so thrilled to get the chance to talk to my good friend and colleague, Matt Cortland. He’s a disability lawyer and a policy analyst and a frequent guest of this show. Matt, thank you so much for taking the time to come back on. And I really miss getting to be with you as a human, but it’s really lovely to get to hear your voice.

MATT CORTLAND: It’s good to be with you, even virtually. It’s a privilege.

VALLAS: Well, we talked — and I’m actually y, I said in all seriousness, what is time? I’m sure I’m not alone in feeling that way — but I had to actually go back to my calendar to think about when the last time that we had had you on the show was. And it was actually in March when we were just starting as a nation to try to even understand what is COVID-19, what is a pandemic, what are the policies and the policy choices that matter or that are even options? It feels like we’ve lived a lot of lives since then. And boy, has a lot happened and a lot not happened since the last time that we had you on the show.

But I can’t think of a better place to start, given that you were the first in our multi-month COVID series months ago, than with you, as we ask seven months in, what has the impact been of the pandemic on the disability community to date?

CORTLAND: You know, as you were saying that, I just remember that before I was on with you — and it’s always good to be on the pod — before I was on with you, you and I, I don’t know if you remember this, we had a phone call about a month before I was on where I didn’t know what to do because I saw that there was this pandemic coming. And the policy establishment in the district and inside the Beltway wasn’t really gearing up in the way that I would expect for an approaching threat that was going to cost thousands, tens of thousands, hundreds of thousands of lives. And I remember calling you up and saying, “Rebecca, this is going to happen. I don’t know what to do about it.” And you and I had a long conversation, and you helped me game out a strategy. And it took about another month before the current administration even acknowledged that this was going to be a crisis that they would have to confront.

And that time of looking around, waiting, waiting for the people in charge to do their thing that they’re supposed to do, for CDC and NIH and FDA and HHS at large, all these three letter agencies that are tasked ultimately with saving and preserving American lives to show up and do their damn jobs, it took forever. And that feeling hasn’t gone away. That’s really what I was stuck with as I was thinking about talking with you today.

The last seven or eight months have been just a catastrophic failure of our current elected leaders and officials to do the very basics, the very, very, very basics to save lives in this country. And it just is staggering, the amount of preventable suffering and death that we have endured.

VALLAS: Well, and Matt, I very much do remember that conversation. And it was in very, very early March. And I actually was just reminding my mother of the conversation I had with you just the other day. Because one of the things you said to me, which seemed unbelievable at the time, was that my parents, as people who are older adults, were in a high-risk group. And that I needed to tell them they needed to stay at home and shelter in place. I remember saying to you, “What are you talking about?” I was in California on a work trip. And you’re going, “Rebecca, you need to stop getting on flights. This is where we’re headed.” And at the time, I was struggling to even really wrap my head around the conversation we were having. But of course, you ended up being the person that I wish many, many more people had listened to early on and even well before that.

Talk a little bit about what some of the human consequences have been. The death toll is a obviously catastrophic and something that numbers really don’t even begin to start to capture the real gravity of, obviously, given the individual consequences for each of those 200,000-some-and-counting individuals whose lives have been claimed to date. But so much less attention seems to get paid to the people and the families who are impacted but who actually do survive. It’s as though, I mean, we hear from some elected leaders at times, you know, “Oh, most of us will be fine. Some people aren’t, but most of us will be fine.” What about the people who are impacted but who end up now with new health issues? What do we know so far about the piece of the story that isn’t really getting told as much, but that is absolutely going to be front and center in the minds, and already is front and center, in the minds of people like you and others who are leaders in the disability community as you start to help to get policymakers to focus on this issue as one that isn’t just about whether you survive or not, and that has deep policy implications, given the incredibly large group of people who are somewhere in between.

CORTLAND: It’s such an important point. You know, we don’t really know at this point in time what the long-term health consequences will be of people who have contracted COVID-19 and survived the experience. We have some idea, as you rightly pointed out, about the number of people who have just — ”tragically” is a wildly insufficient word to describe what has happened — but the number of people who’ve died from COVID-19 in this country. If you look at excess mortality, which is comparing the number of people who have died during the COVID-19 outbreak with the number of people who have died in previous years, during the same time period, we know the sort of baseline number of people who will die in any given month. And if you calculate the number of people who are dying now in the times of COVID-19 versus the number of people that you would expect to die, you end up with a number that epidemiologists call excess mortality: the number of deaths above and beyond that sort of baseline number. And that, for a wide variety of complicated reasons having to do with really arcane and intricate stuff about the healthcare service and delivery system and the way death certificates work and the way that we process all of this paperwork, the number, the excess mortality number, is a much more reliable indicator right now of the number of people that COVID-19 has killed. And it’s much closer to 300,000 people than 200,000 people.

For those who did not die, who survived COVID-19, and there have been something like 8,955,000 cases, according to the Hopkins dashboard, that now lives as a permanent window on my desktop. And we’re somewhere in the neighborhood of an additional 88–89,000 cases a day. So, it’s going to be 9 million cases in the United States by the time that you’re listening to this, probably. For those people, we know precious little about the long-term health consequences of a novel, meaning new, virus. And we are getting our best information right now, as is often the case with these sorts of things, is coming from the patients who are dealing with, on a day-by-day basis, the effects of COVID-19 after, long after the 2–4-week window that the CDC and other virologists were saying that you can expect this to last.

People who are experiencing symptoms that are dragging on for months of crushing, debilitating fatigue, of weird sort of cardiac complications of heart rate doing sort of not what you would expect it to do. Of lung capacity issues where walking up a flight of stairs — I have friends who consider themselves to be what are called “COVID long-haulers” who, months after getting the virus, still get winded when going up a flight of stairs. And we just don’t know. We don’t know what the long-term health consequences of COVID-19 are going to be.

It’s incredibly important that we take it seriously, though, because all too often, the biomedical establishment, when it encounters a new phenomenon in patients, a patient-reported phenomenon that it doesn’t understand yet, tends to dismiss and minimize those concerns. And it’s incredibly important that we not do that here, that we spend the money at NIH to research what is happening to folks. We owe them that. We owe them so much more, but we owe them the best available scientific research into understanding what is happening with COVID long-haulers: research into mitigating, ameliorating some of those debilitating symptoms that folks are struggling with. And that’s sort of been lost, I think you’re exactly right, in the absolutely wild, never-ending, nonstop, grinding news cycle hellscape that we all live in now.

And there are folks out there. We don’t know how many. That’s the sort of basic epidemiological data that’s not being gathered right now because we are in the middle of the crisis. But there are people out there that we’re going to need to support, we’re going to need to support over the long-term. And one of my concerns is that we’re not going to do that. The current administration has shown precious little, precious little interest in actually supporting people. And it is my sincere hope that that is not what the United States chooses to do as we move forward.

VALLAS: Matt, I want to put up a straw man and ask you to take it down, because it seems to be everywhere, not just in the mouths of certain elected officials, but also as sort of a narrative that has taken on a life of its own, shall we say, to anthropomorphize a narrative. And that’s that, “You know, we need to learn to live with this. COVID is going to be with us. But the solution can’t be worse than the problem. We need to reopen to save the economy. Sure, some lives are going to get lost, but,” you know, it goes on and on. It reminds me of a line from a movie some people may know, a movie called Clue from a million years ago.

CORTLAND: [laughs]

VALLAS: And there’s a line in there where one of the characters, Colonel Mustard — it’s of course based on the board game. That’s what the movie’s about. For anyone who hasn’t seen it, it sort of brings the board game to life — there’s a line in there where Colonel Mustard, the actor playing Colonel Mustard, says, “Ya can’t make an omelet without breaking eggs! Any cook will tell you that!” And then Mrs. Peacock says to Colonel Mustard, “But look what happened to the cook!” Because the cook has just been stabbed, right? And it sort of feels like that’s kind of the conversation that we’re having when the straw man I just put up, which is not straw at all — it’s very real — gets repeated.

How do you respond to this line of argument if you can’t quite say, “But look what happened to the cook?” And what does that bring up to you? What do we need to really unpack about that narrative that has, kind of underpinning it, maybe words that aren’t said out loud, but assumptions about who the we is. Who’s the we in, “We need to learn to live with it?” And who’s not part of that we?

CORTLAND: It’s such a good point. And the very simple response is that. “Americans are not learning to live with the coronavirus; they are learning to die with it,” as I heard someone say recently. You know, 61,765 people in nursing homes. 61,765 people in nursing homes in this country have died. But they don’t really count to the people who are saying that, “We need to live with this. We need to reopen our economy. America must go on.” Because people in nursing homes tend to be, by definition, they are disabled because they need to have, in order to be admitted to a nursing home, trouble with what are called Activities of Daily Living, things like bathing yourself, feeding yourself, being able to walk, stand, do all of that sort of thing that is necessary to sort of be admitted to a nursing home. And they tend to be older. The nursing home population in this country tends to be older. And so, older disabled people, over 61,000 of them in these facilities, that turned out, as the disability community has been saying for quite some time now, they are death traps. We knew that they were death traps. And they’ve killed 61,000 people. But those people don’t count, to your point, because they are older, and they are disabled.

But it’s not just people in nursing homes who are dying, right? COVID-19 deaths have been disproportionately borne by marginalized communities, by communities that have been marginalized by the powerful in this country. So, Black and brown communities, Indigenous communities. I was looking at a map of the United States that was displaying COVID counts per thousand people. And the Dakotas right now are in deep, deep trouble, because the outbreaks there in these rural communities among Indigenous folks, Native populations, are just out of control because they’re not getting the support they need. They are not getting the help they need. And the Indian Health Services is in real danger of being overrun by COVID cases, right? Those are the communities that don’t count to the people who say, “Americans need to learn to live with this. That we need to quote ‘soldier on’.”

That almost 300,000 people have died doesn’t really matter because it’s not white, wealthy middle-class somewhere in there, male Republicans who are doing the dying by and large. Which isn’t to say that some of those people have not died, right? I want to be very clear. I’m just talking about disproportionate impact. The spread of morbidity and mortality, of death and suffering, has not been equally distributed amongst the American people. It has been disproportionately borne by Indigenous communities, Black communities, brown communities, disabled communities, right? And those people, from the perspective of the people who are saying, “Americans need to learn to live with it” — which I have trouble even bringing myself to say out loud — they just don’t count. They just don’t count. They not viewed as Americans by the people who are saying that line.

And I watch on the news as people tout an economic recovery, that just is no real. It doesn’t feel real to me. I don’t know if it feels real to you, but the GDP rebounding from a cratering, it just [sighs] I don’t even know what to say. I sound discombobulated because it’s like the president of the United States doesn’t understand basic math. You know, if GDP falls by 80 percent and then just hypothetically rises 20 percent, that’s not a good thing, right? Like you don’t get to tout the 20 percent increase after the 80 percent fall. It’s just like they don’t aw….

VALLAS: But it also presupposes — just to jump in, because I so, so, so vehemently agree with you on this point in particular — it also presupposes that GDP, gross domestic product, is even the way that we should be measuring the health of our economy. Not to mention —

CORTLAND: Yes!

VALLAS: — the stock market. Which I always quote my friend Michael Linden for calling it a mood ring for rich people. To me, that’s the best way to understand the stock market and the resemblance it bears to meaningful economic health. But where is the measure that has anything to do with how, say, the average American family is doing? And you know, so, just to insert that on top of the math problem that has not been solved correctly.

CORTLAND: Exactly! Exactly. What actually matters to Americans, to average Americans, to people who don’t have a stock portfolio — I don’t have a stock portfolio. I don’t have a mood ring either. I guess these go together. But what actually matters —

VALLAS: I have no stock portfolio, and I have at least one mood ring. So, just wanted to put that on the record.

CORTLAND: I might have to get a mood ring? I [sighs] I just, you know, 8 million…. Let’s try this again: 4 million people were lifted out of poverty by the CARES Act. That’s the piece of legislation that sent those one-time $1,200 payments to most Americans. Not everyone got them. There were problems with the legislation. First to admit that, say that, accuse that. But 4 million people were lifted out of poverty by the CARES Act. And then, because we didn’t follow up, because it was only one time, because we didn’t keep supporting people, 8 million people since then have fallen into poverty, right? That’s what actually matters to most people. What the Dow is doing doesn’t really impact my day-to-day existence. I realize that doesn’t make me the base of the Republican Party. I get it. But I think for most Americans, whether or not you can afford to pay your rent, to make the mortgage, to go to the grocery store and buy enough food to feed your kids matters so much more than what Apple stock price is doing! But that isn’t where the current administration is focused. And it is crushing. It is just crushing for so many families.

We’ve seen this administration attack SNAP during this time period, which is just mind boggling, right? I say this as someone who has relied on SNAP when I was very, very sick. Could not work. SNAP was what put food on my table and allowed me to continue to exist, literally to exist. And to see our elected officials, while they attack SNAP, say that everything is OK because stock prices are OK, because GDP is quote-unquote “OK,” is just, it hurts! It genuinely hurts. And I don’t know what to do about it, but I do know that Americans need more help. Average Americans need more help.

SSI, which is the Social Security disability program for people who don’t have enough work credits, in other words, people who’ve been sick for, or disabled, for a very long time, is $783 per month. And that didn’t get added to. There was no top up. There is no plus up for the pandemic of that $783 a month figure. And that’s what it tops out as. Not everyone gets $783 to be very clear. You can get less than $783. You can’t get more. And we haven’t, we’ve just accepted that, right? We’ve just accepted that the poorest folks, the most marginalized folks are going to continue to be poor, are going to continue to be marginalized. Because poverty is a political choice imposed on marginalized people in this country. Let me say that again. Poverty is a political choice imposed on marginalized people in this country. And this pandemic is making it incredibly clear who counts, who doesn’t count, who’s part of us, who’s part of them, as you were quite rightly pointing out.

And we have just incontrovertible evidence that people don’t actually have to be poor. People don’t actually have to be made to struggle. We lifted 4 million people out of poverty with one piece of legislation, the CARES Act. And then we didn’t do a damn thing to follow up to support people because this pandemic isn’t going away. Contrary to what the president of the United States keeps asserting: this pandemic is not going away. And we didn’t follow up. And so, 8 million people fell back into poverty. And it’s just unconscionable. It’s just unconscionable! And I don’t know what to do about it.

VALLAS: For folks who are looking for more, a deeper dive on some of the attacks on SNAP food assistance and also a recent good-news court ruling that, yet again, stepped in and prevented current leaders from taking food assistance away from what could’ve been millions of people in the middle of the pandemic, a lot on that, as well as some of the studies digging into what Matt’s referencing around the poverty reduction effectiveness of the CARES Act, as well as the increase in poverty and hunger that we’ve seen absent further federal action, we have all of that in last week’s podcast hour. I talk with Joel Berg. Much deeper dive and so important to bring that into this conversation as well, Matt.

To dig in just a little bit more on the sort of valuation of life that goes on, of individual lives that goes on, and that results in a calculus where some people weigh a little bit more than others. Obviously, none of this is new. But, boy, is it on full display in this current moment. I’m going to reference a second movie. And boy, this is kind of wild for me. I don’t usually do pop culture references in this podcast, but I think I’ve been thinking a lot about them, particularly kind of older movies in recent months because of how unbelievable some of what’s happening certainly feels. And the movie that I’m going to reference as I bring us into deeper conversation on the devaluation of disabled life and of other marginalized lives that you were referencing, Matt, that’s underpinning so much of not just the policy choices and who gets aid and what not, but even the very frame of the conversation, who’s in the us, who’s in the them. The movie is called The Purge. People probably are familiar with it, probably remember it from the original film. 2013 is when it came out. It actually started a whole franchise that I never really got into. But I did see the original movie.

And the reason I’ve been thinking so much about it is because the premise of the film, for anyone who hasn’t seen it, is we’ve got this kind of set of new founding fathers they call themselves. They’ve formed a new United States of America. And it’s a nation without crime. It’s a nation without poverty. It’s a nation without any sort of hardships. And how did they do it? Well, they did it by creating a policy that once a year, with no consequences, anyone can do anything they want to any individual or any property or physical infrastructure, including killing people, and then go home and never have anything that they are held accountable for. One night. One night only. And it sounds kind of wild, but here’s why it’s so much in my mind. Of course, what ends up happening in the rest of the premise of the film — I’m not spoiling anything here. Ethan Hawke, you can go do your thing for anyone who wants to go and watch, who hasn’t seen it without me giving any spoilers — but you’ve got this class of people who can protect themselves, who can put up really expensive security systems and walls and cameras and all kinds of apparatuses that literally cover their entire houses to make sure that no one could ever come and actually hurt them during that period when law enforcement and first responders are all off the streets and not engaged because it’s a Wild Wild West. Everyone go do what you want during the night of the purge.

And the people who can’t protect themselves are individuals who are living on the streets and don’t have shelter, people who are lower-income, maybe can’t afford those security systems. It doesn’t take much guesswork to really envision who it is that thrives in this society and who ends up being the prey that one night of the year when people can go out and do a bunch of killing and come home and feel like they, whoo, got it out of their systems and move on with regular life.

Now, absurd as the premise of the film might’ve seemed in 2013, I would posit that it is functionally the logical conclusion of exactly what we are living right now in the way that the U.S. is handling the pandemic and the way that we’re even talking and thinking about the pandemic, if people are entertaining statements like, “We need to learn to live with it,” because of who is on the chopping block, devalued, and not in a position to do much about it, except to become the eggs that get broken by Colonel Mustard in my previous movie reference, and that people just sort of want to move on from out of sight, out of mind.

So, I throw that at you not to ask if you agree with my movie comparison. I mean, you can say if you do. I don’t want to put you on the spot because it’s maybe somewhat controversial. But to sort of put you in position to talk more about the very real way that this has actually cropped up, not as a behind-the-scenes read-between-the-lines conversation, but actually as an above-the-fold conversation, at least in key points throughout this pandemic period, which is in the form of healthcare rationing as a very concrete, very tangible set of conversations that policymakers, that hospital administrators, that state elected officials have been having that is, of course, very connected to the broader conversation in other ways that maybe people aren’t as comfortable having on the air or putting in print, but which is one rare instance of people being willing to talk about whose lives are worth what.

CORTLAND: I am going to go out on a limb and maybe be a little controversial. It’s a big risk for me. I’m kidding. I’m kidding. I hate The Purge. I hate The Purge because it shows how broken our cultural imagination is that we cannot envision a better America without there being a horrific dystopian catch, when there are so many other places around the world, other countries that are managing to do what the future envisioned in The Purge does for average people without all the murdering and the killing and the high-tech security systems and getting on a plane because other people are going to be evil one night a year, right? It just it is infuriating to me. So, good reference. I like it.

I think that we’ve known. I’m just thinking back to April. The Center for American Progress signed on to a letter from the disability community, certain disability community leaders. It was CAP, The Arc, Little lobbyists, NCIL, AAPD, all these initial letter organizations sent a letter to congressional leadership saying that we needed to produce more ventilators because there weren’t enough. There weren’t enough vents, and we know that there are rationing policies that if hospital systems are stretched to capacity and they are overcapacity and there aren’t enough vents to go around, ventilators, that they ration them according to certain ableist principles, certain principles that devalue the lives of disabled people and give preferential treatment to non-disabled people.

We didn’t have enough ventilators in this country, the strategic stockpile that we heard so much about back in March and April and May and that we don’t really hear about anymore, even though these issues aren’t really fixed. The strategic stockpile wasn’t that much of a stockpile, wasn’t that strategic either, right? It was really underfunded, under-resourced. The stockpile wasn’t as big as it should have been. And it really was — this is such an important point — it was non-disabled people, nondisabled electeds, non-disabled bureaucrats, non-disabled policymakers who made those decisions about how many resources to have on hand in case there was an emergency, a pandemic that required more resources than hospitals had on hand: the ventilators that they used in day-to-day operation or during the flu season every winter, which is when ventilator capacity is normally stretched.

And Sam Bagenstos made this point in an article, I got to talk to him about it, that it was non-disabled people with power who set the conditions that would result in there not being enough ventilators. And those same non-disabled people were choosing to preferentially give resources to non-disabled people, taking them away from disabled people, imposing the life and death costs on the disability community of their earlier failures to plan appropriately. And that just stuck with me, right? I knew about all of this, but I hadn’t done the mental math to say that, wow! You all didn’t prepare. And because you didn’t prepare, you’re now going to try to kill us. And luckily, so far, by and large, there have been exceptions. There have been exceptions. But we have not seen rationing of ventilators at scale. And we’ve been very lucky in that.

But we are now approaching — I don’t like this talk about waves because waves implies that we ever really got a grip on slowing and stopping coronavirus transmission in this country, and we never really did — but we’re now approaching the heart of winter, which is, as every expert worth listening to on this subject has said, when we can expect transmission of the novel coronavirus to just explode. Because it’s a respiratory pandemic. We have data going back hundreds of years that this is when respiratory pandemics spread. It’s in the winter. We know this. This isn’t news to anyone who actually is an expert. And we are in danger in many states of overwhelming, particularly in the Midwest, overwhelming the service and delivery, the healthcare service and delivery system. The capacity just isn’t there.

I don’t know if folks remember, but months ago, we were talking about flattening the curve, and that was supposed to buy us time to ramp up production of ventilators and also PPE, which is something that we still don’t have enough of, right? My friends who are working on the front line, who are nurses and physicians and NPs and PAs and all these great clinicians who are doing their damnedest to keep people alive, they still are being forced to reuse N95 masks that are designed to be single use. They still don’t have the personal protective equipment that they need to do their job safely to say nothing of the rest of us, the rest of the United States! We should’ve been getting PPE in the mail by April at the latest. The U.S. government knows how to do this stuff. I think it was DOD, during one of the last epidemics was distributing little kits to all sort of DOD-related people, and that is millions of people, of masks and hand sanitizers. And just this notion that we don’t know how to do this, that we don’t have the capacity, that we don’t have the knowledge, we don’t have the resources, we don’t have the logistical infrastructure, it’s a lie. It’s a lie! And it’s killing people, right?

So, when we talk about rationing healthcare resources in this pandemic, and I don’t know what’s going to happen in the next few months, but I’m scared. Because we are going to see an explosion in cases. It’s already happening. We are back over the thousand deaths a day mark again. And we are seeing 80, almost 90,000 new cases a day. And we’re seeing cases explode in rural states with heavily like…they’re heavily rural states where the healthcare service and delivery system was already decimated by underfunding and hospital closures. And I’m just very scared of what this means for disabled folks, because despite the great work that leaders in the disability community have done to challenge these rationing protocols, these triage protocols that preferentially give ventilators and other treatment to non-disabled people over disabled people, we haven’t challenged them everywhere. It’s a large project. And people are going to slip through the cracks and die, and they shouldn’t have to, right? It’s infuriating, and it’s just incredibly sad that people who don’t need to die, that this pandemic should not be killing them, are going to because of the incompetence or malicious indifference of our elected officials.

I don’t know what to do about that either right now, because we have been begging. We have been literally begging Congress and the administration to increase production of ventilators and to increase production of PPE and to start making adaptive PPE, because sort of normal face masks aren’t accessible to everyone. And there are other options like powered air purifying respirators, PAPRs for short ,those sort of moon, almost moon looking suits, moon space suit-like looking things, if that made any sense that could be used by disabled folks who can’t. There are some disabled folks who legitimately cannot wear an N95 respirator, right? And that is separate and apart from the anti-mask zealots who are claiming that the Americans with Disabilities Act exempts them, and they just want to spread COVID to everyone. But there is a legitimate, very real need for adaptive PPE in this country. But we can’t even get regular sort of non-adaptive standard off-the-shelf PPE manufactured in sufficient capacity using the tools that are available to the administration, including the Defense Production Act. We couldn’t get them to do that. Like the very basics, the very, very, very basics, we could not do that. They refused. They blew the fundamentals. And as a result, disabled people are dying in greater numbers than non-disabled people.

And every day, I get a text message from the nursing home that a few of my folks are in. And it tells me how many residents have COVID-19 at that time, how many residents don’t have COVID, how many are recovering from COVID, and how many have died from COVID. And right now, that’s about I think it’s about 20 people in that facility have died. And it also says the number, the amount of PPE on hand. And that number is always been two weeks. That’s what been reported to me. But I go there, and there’s not enough PPE. Like people are reusing masks because that’s become the default standard. Which just is not as safe as getting a new mask every day, or in the before times, a new mask between going between patient rooms, right? Just masks were swapped out. They’re not a product that’s designed to be reused.

And so…I’m hesitating because I got a text a couple of days ago, the alert that a staff member at this nursing home had contracted COVID. And that’s what has been the first sign that there’s about to be a new outbreak in the facility. And then the next day, it was four residents have COVID and two staff members have COVID. And so, this is impacting families around the country. Like this is a nightmare that millions of people are dealing with. They have loved ones in these nursing home institutions because let’s be clear: this country does not support, has taken the deliberate policy choice not to provide the resources and support disabled people need to stay in their own homes, even if they want to.

My family certainly wanted to. They don’t want to go into a nursing home. There just was no other option. And so, like so many other families around this country, I’m getting these sort of terrifying daily updates of watching this disease ravage this facility that my people are in, wondering if this is going to be the time that it gets my loved ones. And it’s in large part because we haven’t done the things that we knew we had to do; we just chose not to. We didn’t provide enough PPE to these facilities. We didn’t make enough ventilators for hospitals. We’ve chosen to warehouse disabled people in skilled, quote-unquote “skilled nursing” facilities instead of providing home care. We haven’t provided home care funding, increased home care funding during the pandemic.

You know, we went to Congress. We begged them: provide increased funding for the Home and Community-Based Services that keep disabled people out of these institutions. Dear God, they’re deathtraps. Can’t you see how many people are going to die? And the funding just never made it in a bill. Just they didn’t do it. They chose not to do it. And as a result, as we enter November and when, as we’re seeing COVID transmission in cases spike, it’s very clear to the disability community that these lives don’t matter that much to the people in power. And I don’t want to do about that, except keep fighting, and hopefully we have a chance to change the situation before the words that are in my mind that I’m trying not to say out loud are “before my loved ones die,” because that’s where we are. That’s where we are. And for the families of about 65,000 people, it is too late. It is just far too late. And it’s the consequence of this abject policy failure that you’re talking about.

And we’re seeing it play out in hospitals as well. Hospitals have adopted rationing policies that disabled people didn’t have input into drafting. That bioethicists sort of aligned with the disability community didn’t have input into drafting, had to fight to get input into. We’ve seen friends and colleagues across the disability community come together to challenge, to go through the motions of filing legal challenges, both administrative legal challenges through the Department of Health and Human Services Office for Civil Rights, challenging these policies that say disabled people will not get ventilators if they need ventilators because there may not be enough ventilators, because we are overwhelmed by COVID cases, because we didn’t do everything we needed to do to slow transmission of COVID and prepare for increasing capacity by creating more ventilators. It was preventable. All of this was preventable. It was preventable. Did not have to happen.

VALLAS: Matt, you started to go into another kind of question I was going to ask. And I wish I had multiple hours with you because of how many things I wish we could talk about. But as I sort of look at the things I wanted to talk about and make some hard choices here in the last several minutes that we have together, you just started to sort of delve into, I think, a really valuable category of the discussion that we could be having, that we have been having at points, but which has sort of receded as the static around the election has started to dominate the news cycle. And that is the lessons that we as a nation need to take away, that policymakers should responsibly take away from our experience with this pandemic and, of course, from the policy failures. But many of those lessons are actually ones that leaders in the disability community, for example, have been yelling about at the top of their lungs or at the top of their fingertips if they’re signing for so incredibly long pre-COVID that it almost seems unfair to ask the question in the way that it’s often asked, which is what has COVID laid bare, right, about our existing policy failures and the types of policies that we should be moving forward as a nation to get to the other side of this?

You named one that, to me, is as high on that list as maybe an issue could be, and that is that nursing homes, as you put it — and I want to repeat this phrasing — and the facilities that have been warehousing people with disabilities have been death traps and are death traps and were death traps even prior to the pandemic, compared with Home and Community-Based alternatives that also happen to be where most people with disabilities and seniors would actually rather live rather than in warehouses. Talk to me a little bit in the last few minutes that we have about the lessons that we need to be learning, should be learning, taking away from this horrible period in our nation’s what we soon hope will be history, what we hope soon will be history even if there weren’t new information, if people had been listening to advocates like you pre-pandemic. And how is that informing what is on your wish list for 2021 in terms of a disability policy agenda and a broader policy agenda that does center disabled people and disability priorities? So, I am careful not to make it sound like it’s a separate set of issues, because it’s not.

And I’m not going to ask that question in a way where I say, you know, if the election goes a certain way, because we can’t get into that kind of conversation on this show for legal reasons. But I am going to ask the question in a sort of an open-ended way that hopefully gives you some space to lay out for our listeners the agenda that leaders should be embracing at all levels of government, not just to ensure an inclusive recovery — yes, that’s a top priority. That’s a phrase everyone kind of keeps using — but to also make the most of a rebuilding effort, not just to try to get us back to where we were, which itself is going to take significant effort for all the reasons you were describing before, but to bring us to and start to build with a mind towards being the kind of society that we could be, should we choose not to be a purge.

CORTLAND: That’s it. That’s it exactly. We have a choice. We have a choice to make. We can be an inclusive, pluralistic society, country in which no one gets left behind, or we can be The Purge but 365 days a year. We can be a society where a small, small group of incredibly privileged people are safe and protected, and everyone else, everyone else is expendable. That is the choice that confronts us. And so, nursing homes are such a good…such a good lens to look at this through. Because disability advocates have been saying for decades that these places are death traps because they are.

Because imagine, you’re at your own home. Maybe you are with your family, maybe you’re with a spouse, maybe you’re with your kids. You’re in your own home where you want to be, and something happens. It doesn’t really matter for this conversation what happens. But something happens where there aren’t the resources. You could stay at home. You could. You could, with the proper support, stay at home. But you are told that you cannot have that support as a matter of government policy, federal and state and local policy. You cannot have that support. And so, your only choice, which is no choice at all, is to go into an institution, to be put in a room, a single, one room with one or two or three other people you’ve never met before in your life. To not be able to prepare your own food, not eat when you want. Not go where you want when you want. To be subject to the whims of facility administrators who all too often these days are obsessed with profit because venture capital firms are buying skilled nursing facilities. But to be clear, even when they were quote “technically non-profits” unquote, they were still terrible and still, still, still terrible.

Or we can be the kind of society that says actually, 61,000 people have died in nursing homes so far, to say nothing of other congregate care facilities, and I’m just not talking about them because I don’t have numbers for them. We don’t know how many people, with that same degree of confidence, have died in group homes, have died in psychiatric hospitals, have died in all of these other institutions, including rehabs that people are put in these congregate settings that don’t really, are not optimized for infection control would be to put it mildly. We have the choice about whether or not we want to continue this reckless, just murderous policy of warehousing people in institutions or not. We have the choice of whether or not we want to be the kind of country that says actually, we recognize that poverty is a choice, a political choice that is imposed on marginalized people in this country. And here’s the proof: that CARES act lifted 4 million people out of poverty. A one-time payment of $1,200 was enough to lift 4 million people out of poverty for quite some time. But then we didn’t follow up on it because we just, we chose not to. We chose not to do anything even as the pandemic continued. And 8 million people fell into poverty.

VALLAS: Well, we could be the kind of country that says, “Actually, we have enough resources that no child, no family, no adult, no one, no one in this country should be forced to live in poverty. And we’re just going to do the right thing. We’re going to give people money. We’re going to give them the cash that they need to not be poor, to not live in crushing poverty.” Or we could be the kind of country that lets 8 million people fall into poverty in the middle of a pandemic. And that’s who we are right now. But it is my hope that that is not who we would be next year in 2021. It is my hope that when 2021 comes around, we are not the kind of country going forward that says to people, “You’re on your own in a pandemic that you did not cause, that you are ill equipped to survive because of systemic policy choices that have been imposed on you by powerful lawmakers and bureaucrats who don’t understand your lived experience, who have never struggled with the things that you have struggled with, who deny the existence of systemic racism and systemic ableism, who deny the existence of any sort of systemic oppression.” We don’t have to be that country. We could be a better country.

And the alternative isn’t turning to The Purge, right? Like other countries do this. Other countries have figured out how to contain COVID. They have figured out how to ameliorate poverty. They have figured this stuff out. We don’t need to reinvent the wheel. We know how to do this stuff. We just choose not to. And it is my hope, my sincere and fervent hope, that come 2021, we make a different choice, and we choose to contain the coronavirus and get masks out to everyone who…masks, masks and adaptive PPE. And testing and tracing and supporting people, supporting people. My colleagues in public health often talk about isolating people. But really what we need to do is support people so that they don’t transmit COVID to others, right?

There are lessons to be learned. They seem so obvious, but they have been paid for by the deaths of so many people that we have to learn them. We have to approach this differently. We just have to. There is no other choice. The other choice is, quite literally, death.

VALLAS: I hate to leave on that note, but it, I think, is actually the right note to leave this conversation on, because those are the terms that we are facing. That is the choice that we are currently facing. And I really appreciate so much, Matt, your just framing it up that way, given how inevitable, this frame of inevitability that seems to be so incredibly persistent, when the reality is that everything we do as a society is a policy choice, from permitting third-world levels of hunger in the middle of a pandemic to having allowed slightly lesser levels of hunger even before the pandemic and on and on and on as you, I think, so well describe.

And Matt, I so appreciate your voice in social media as well and want to give up a shout out to any of our listeners who somehow are not already following you on Twitter because of what a tremendous resource you are on an ongoing basis of not just facts and data as they become available, but also of truth spoken from the heart from someone who isn’t afraid, I think, to speak that truth. You’re @MattBC on Twitter, @MattBC, M-a-t-t B C. And we’ll plug you on our syllabus page as well so folks can just click through.

Matt, thank you so much for taking the time, for all of the work that you have been doing in coalition, on your own, in your free time, just because you’re trying to do everything you can to interrupt this horrible cycle that we seem to be trapped in, hopefully for not much longer. And also just sending along, on a personal note, all of my positive wishes of health and safety for you and your loved ones who you were speaking about before and who are still very much at risk until different choices are made.

Matt Cortland is a disability lawyer and policy analyst. I said before you can follow him @MattBC on Twitter. Well worth the follow. And Matt, be well, and sending love.

And that does it for this episode of Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by the Center for American Progress Action Fund. I’m Rebecca Vallas. The show is produced by Will Urquhart. Find us on the airwaves on the We Act Radio Network and the Progressive Voices Network, and say hi and send us your show pitches on Twitter @OffKilterShow. And of course, find us anytime on iTunes or wherever you get your podcasts. See you next time.

♪ I want freedom (freedom)

Freedom (freedom)

Now, I don’t know where it’s at

But it’s calling me back

I feel my spirit is revealing,

And now we just tryna get freedom (freedom)

What we talkin’ bout…. ♪