“I will not apologize for my needs”

With the ongoing debate around health care rationing and ventilator shortages amid COVID19, Rebecca talks to Ari Ne’eman, Alice Wong, and Sam Bagenstos about the importance of disability non-discrimination in health care, as part of Off-Kilter’s ongoing series of COVID19 conversations. Subscribe to Off-Kilter on iTunes.

“Times of crisis ask us who we are as a country. As hospitals prepare for shortages in ventilators and other scarce medical resources, many people with disabilities are worried about the answer to that question. In Italy, doctors are already rationing access to care on the basis of age and disability. The Washington Post reports that many states are considering how to implement similar rationing measures here. Though almost everyone would agree doctors may deny care that is unlikely to benefit a patient, there may soon be too many patients in urgent need of lifesaving treatment and too few resources to treat them all. When that happens, some are proposing to send people with disabilities to the back of the line.”

So writes Ari Ne’eman, a disability activist and visiting scholar at the Lurie Institute on disability policy who’s writing a book on the history of American disability advocacy — in an op-ed in the New York Times.

Rebecca connected with Ari — as well as two other disability advocates, Sam Bagenstos, a law professor at the University of Michigan Law School, and Alice Wong, a disabled activist living in San Francisco and editor of an upcoming book Disability Visibility: First-Person Stories from the Twenty-First Century — (virtually, of course) to talk about how people with disabilities feature in the current debate over health care rationing.

This week’s guests:

Ari Ne’eman, visiting scholar at the Lurie Institute on disability policy (@aneeman)

Alice Wong, disability activist and founder of the Disability Visibility Project (@SFDirewolf / @DisVisibility)

Sam Bagenstos, law professor, University of Michigan School of Law (@Sbagen)

For more on this week’s topics:

• Read Ari’s op-ed in the New York Times, feat. quotes from Alice: “I will not apologize for my needs.”
• Read Sam’s paper “May Hospitals Withhold Ventilators from COVID-19 Patients with Pre-existing Disabilities?”
• And check out Alice’s essay “Disabled Oracles and the Coronavirus.”

This week’s transcript:

♪ I work and get paid like minimum wage

sights to hit the class by the end of the day

hot from downtown into the hood where I stay

the only place I can afford ’cause my block ain’t saved

I spend most of my time working…. ♪

REBECCA VALLAS (HOST): Welcome to Off-Kilter, powered by the Center for American Progress Action Fund. I’m Rebecca Vallas.

“Times of crisis ask us who we are as a country. As hospitals prepare for shortages in ventilators and other scarce medical resources, many people with disabilities are worried about the answer to that question. In Italy, doctors are already rationing access to care on the basis of age and disability. The Washington Post reports that many states are considering how to implement similar rationing measures here in the US. Though almost everyone would agree doctors may deny care that is unlikely to benefit a patient, there may soon be too many patients in urgent need of lifesaving treatment and too few resources to treat them all. When that happens, some are proposing to send people with disabilities to the back of the line.”

So writes Ari Ne’eman, a disability activist and visiting scholar at the Lurie Institute on Disability Policy, who’s also writing a book on the history of American disability advocacy. I’m quoting from an op ed he wrote in The New York Times. I connected with Ari, as well as two other disability advocates, Sam Bagenstos, a law professor at the University of Michigan Law School, and Alice Wong, disabled activist living in San Francisco and editor of an upcoming book, Disability Visibility: First Person Stories From the 21st Century, coming out in June 2020. I connected with all of them, virtually, of course, to talk about how people with disabilities feature in the current debate over healthcare rationing. Let’s take a listen.

Ari, Alice, and Sam, thank you so much for taking the time to join the show. And happy birthday, Alice!

ALICE WONG: Aw, thank you.

VALLAS: So, first, just to do a little bit of table setting before we kind of get all into the details and the weeds here. For years, people in the healthcare space have been party to debates over medical rationing. This isn’t a new subject to debate. But up until now, those debates have largely taken place in the abstract, so in the context of discussions about what treatments might be covered under various healthcare reform proposals. Maybe a perfect example is Republicans’ hand-wringing over the supposed Obamacare death panels from a number of years back. But now, in the context of the coronavirus pandemic, the prospect of healthcare rationing is no longer theoretical or abstract. We’re actually struggling to respond to a pandemic without adequate medical facilities and equipment to handle the number of cases that we’re likely to see in the US. And if we don’t flatten the curve, hospitals that are faced with an influx of patients will all of a sudden finally be in the no longer theoretical but very immediate place of having to make decisions about how to allocate medical resources. And in particular, the subject that keeps coming up in this context in coronavirus is lifesaving ventilators. [unclear] Differently, healthcare providers are potentially about to be in the position of making decisions about who will live and who will die. That is the context for the conversation that we’re having today.

Ari, I’d love to start with you and just have you explain how the notion of healthcare rationing works and the types of considerations that generally would be taken into account. I noted that the notion of rationing has largely been a theoretical idea up until now. But you actually note in the op ed that I quoted from, there are already policies along these lines on the books. Maybe describe a few and what kinds of criteria are spelled out for making these kinds of decisions in the context of healthcare rationing.

ARI NE’EMAN: Sure. Thank you for having me on the show. You know, so, I would start by saying I’m not sure I would agree that up till now, healthcare rationing has been entirely theoretical. I think, as you point out, there are longstanding concerns around insurers and payers denying access to necessary care. But what we’re seeing here is rationing that moves another step down and takes place at the provider level, the level of hospitals. And that’s really profoundly concerning because now what we’re seeing is discussions around the rationing of imminently necessary lifesaving treatment like access to ventilators.

There is a very significant problem playing out right now that state crisis standards of care plans, which in many instances, were put in place years ago in order to prepare for a situation just like the one we now find ourselves in include criteria that systemically discriminate against people with disabilities. And that comes in a few different forms. Sometimes it’s very explicit. For example, the state of Tennessee excludes people with spinal muscular atrophy who require assistance with activities of daily living from access to critical care. The University of Washington Medical Center has promulgated allocation guidelines that prioritize young, otherwise-healthy people over older, more disabled people. There’s a wide variety of other guidelines that lay out really concerning diagnostic exclusions that place people with disabilities at a disadvantage, even if they were in a position to benefit from treatment.

Now, in addition to that, we’re also seeing some other very concerning criteria. Often, states are articulating that they will either deny, give lower priority to, or in some instances, withdraw resources from people with disabilities who are benefiting from them, but may require more time in order to realize that benefit. We are seeing language in some plans that indicate that if a person with a disability would, for example, require 10 days on a ventilator, whereas a person without an underlying disability would only require five days, that that person with a disability would be sent to the back of the line and would not gain access to a ventilator, while a non-disabled person required it. That’s very, very concerning. I would say that we are seeing a fundamental challenge to the premise of disability rights law that sometimes, in order to treat people equally, you have to allow people to access additional resources, recognizing the need for reasonable modifications on the basis of disability.

VALLAS: You point out in your op-ed, you mentioned a number of various physical types of disabilities and health impairments. But you also point out in your op-ed the state of Alabama actually calls for denying ventilators for people with developmental disabilities. So, it’s a range of types of disabilities that are actually named and excluded in some of these types of policies. Alice, you were about to offer something as well.

WONG: Yeah, I was just going to jump in and say that this isn’t only happening in the United States, you know. In the UK, there’s a national Institute for Clinical Excellence, and they have a guideline on critical care that their assessment is based on a measure of frailty. So, their critical care assessment is based or if a disabled person who needs personal care, it’s often thought that they may not benefit from treatment, which I think is just bananas. So, this is definitely something that’s not just happening in the United States, but all over the world as so many countries are dealing with the pandemic.

VALLAS: And Sam, I want to bring you in as sort of our resident lawyer and law professor here. You actually, just this past week, just a few days ago, published a paper specifically looking at whether hospitals can and should withhold ventilators from COVID-19 patients who have pre-existing disabilities. And the paper, really kind of more broadly, gets into to the very question of whether or not disability discrimination in treatment is something that legally can go on in the United States. Talk a little bit about that paper and ultimately what you argue.

SAM BAGENSTOS: Yeah. And so, this paper obviously was inspired by everything we’re talking about here and the way that these guidelines for providing life-saving treatment, which have been on a shelf somewhere in many states and in many hospitals are, all of a sudden very clear and present for for making life or death decisions for people with disabilities. And we’ve started to see, as the hospitals get closer to capacity, really, hospitals and health systems beginning to think about how are we going to allocate the, you know, how are we going to allocate these lifesaving treatments? And so, the basic argument is, I mean, so, first of all, one thing that’s clear is the Americans with Disabilities Act as well as other anti-discrimination statutes clearly apply to medical treatment decisions, right?

I mean, the Americans with Disabilities Act applies to everything a state and local government does. It applies to public and private hospitals. The Rehabilitation Act, which also prohibits discrimination based on disability, applies to every hospital that receives Medicaid funds, which is pretty much every hospital. And the Affordable Care Act has a nondiscrimination provision as well. But nonetheless, despite the longstanding existence of anti-discrimination provisions governing healthcare, healthcare systems tend to at least start with the premise that they operate autonomously. That these are decisions about professional judgment as opposed to decisions about discrimination. So, one of the things I wanted to do with this paper is just make very clear to people from the beginning, look, these laws are there. They prohibit discrimination on the basis of disability, and they govern you. It’s not just your own internal decisions that matter. It’s also a democratic decision that our society’s made against discrimination.

And so, what does that mean? You know, what does it mean to say no disability discrimination here? And in particular, as you said, what I’m focused on is when a hospital or a health system makes a decision to deny someone treatment for one condition because they already have some other kind of disability. And sometimes that’s done under the rubric of, this is battlefield triage. We need to save the greatest number of lives. Most of the time, that’s actually not the decision that’s being made here, right? Most of the time, it actually is a ventilator that can go to one person or a ventilator that can go to another. And so, it’s a choice of which life to save instead of, you know, saving 20 lives versus saving 1 life. And when these decisions are being made, they’re often being made based on if you look at the protocols that Ari was talking about and the excluded conditions, the conditions that lead people to be deprioritized for lifesaving care, what you often find is the decisions to deprioritize particular conditions like developmental disabilities or other kinds of disabilities are not based on the inability of a person with that condition to benefit from a ventilator or benefit from treatment for COVID-19. Instead, they’re based on assumptions about how long somebody’s going to live with or without treatment and how good a life they’re going to have and how the quality of their life is going to be affected by their disability.

You see a lot in these policies references to we prefer to save young and healthy versus old and frail people. We prefer to save people…. You know, in Washington state, it says consider the baseline functional status of the person who is seeking treatment. So, you want to know what are their cognitive abilities. Obviously, that — and that’s specifically called out in the plan — that has nothing to do with benefit from the treatment. What that has to do with is a normative judgment that the healthcare systems are making themselves, that the quality of life with cognitive impairments is less than the quality of life without that. And so, we want to allocate treatments to people who will have a higher quality of life. And one of the reasons we have the ADA and all these nondiscrimination statutes is because there’s widespread bias, both in the medical community and out of the medical community, against people with disabilities. There’s a really notable difference in the perceptions of quality of life with a disability between people without disabilities and people with disabilities. Disabled people don’t think, on average, their lives are of any lower quality than anyone else. Non-disabled people think having a life with a disability would be of incredibly low quality. And that’s been consistently shown in study after study after study. And so, what the ADA is essentially saying here is you can’t rest on this non-disabled, normative judgment about the quality of life in denying someone lifesaving care just based on their disability.

And there’s also an issue with predictions about the quantity of life, about life expectancy of people with disabilities. And so, also here, if the idea is, because you have an underlying disability, we don’t think you’re going to live as long if you get the treatment, unless it’s totally obvious that someone is at the end stage of cancer or something like that, and they’re going to die tomorrow with or without COVID-19 treatment. But if you’re talking about the cases that we have here — and I’m one of the counsel who’s been challenging a number of these states’ policies — what we have here are actually assumptions that, well, the life expectancy with a developmental disability is, on average, less than the life expectancy without. And it’s also been demonstrated over and over and over again that medical professionals have consistent biases that affect their prognoses of people with underlying disabilities. And so, that’s something the ADA and anti-discrimination laws also aim to fight against by saying you can’t discriminate against people with underlying disabilities.

VALLAS: And Sam, I’m going to jump in there, and I think we actually should come back to the legal side in just a little bit. Because some of the lawsuits that you mentioned are really worth digging into, and that’s going to be one of the important things for us to watch. But I really want to bring Alice in on one of the points that you just made around the perceptions by non-disabled people and by healthcare professionals regarding the quality of life that disabled people have. And Alice, one big area that’s obviously of special relevance in this moment is policies — Ari referenced this just a little bit — policies that don’t just deny care to people with disabilities in these contexts, but that would specifically allow doctors to take ventilators away from people who need them to live if they go to a hospital, in theory, so that those ventilators can be redistributed to someone else in a time of shortage. As Ari mentioned, that’s not a theoretical policy. That is a policy that is actually in place in some states. And you actually were quoted in Ari’s powerful New York Times op ed as saying, “My vent is part of my body. I cannot be without it for more than an hour at most due to my neuromuscular disability. For clinicians to take my vent away from me would be an assault on my personhood and lead to my death.” I would really love to hear you talk a little bit about that notion of quality of life, the perceptions that healthcare professionals may have, and the very notion of these policies being debated in this moment.

WONG: Oh, thank you for that. And I just want to say that this is super, super personal. And yeah, this has just been a really weird time because never have I heard ventilators mentioned so many times in the media and on the news. And it’s really bizarre to finally see people actually curious about what ventilators do, and just the fact that there are shortages. And I think it’s just been a very weird time to be a full-time vent user and to feel already, pre-pandemic, already pretty vulnerable and pretty marginalized already. But now, with this very real policy and the very real protocols that are clearly going to exclude so many people with disabilities and older people, it does feel like I have this bullseye on me. And it’s just incredibly terrifying, and this is something that I think a lot of other disabled folks are feeling right now. And I think one of the things that really angers me is this sense of people not really understanding that fear. And also, just a very casual kind of ageism and ableism that doesn’t we see a lot. And I think that’s what’s really been painful, especially as a disabled person who’s been just trying to work so hard to really advance things, and yet it really reminds you again, this is where we are, where we still have to actually defend our value, which is just like, to be just like, wow. This is like…it’s kind of depressing in a lot of ways.

So, the idea that vents can be taken away, that actually makes me afraid of going into the hospital. And sometimes, I feel like that’s almost precisely one of the intended effects is to keep people at home and give them palliative care if they’re affected versus treatment. And what I said earlier in Ari’s piece, that I want the same options as other non-disabled people. I’m really talking about my desire to be seen as a human being by these systems and institutions. And disabled people, like many other marginalized groups, have already faced a very long history of being harmed by the medical-industrial complex. And you know, this is about power, right? And I think we’ve never been given the opportunity to influence and design these systems. I mean, just imagine if sick and disabled people designed healthcare systems’ policies and guidelines. I think that’s something that I would love to leave your listeners, thinking about this is not the system that we deserve. And this is not the system that we have to have.

VALLAS: Oh, and Ari, I was actually [unclear] bring you in because as I was hearing Alice speak [unclear] in my ear, and I actually want to bring you in by asking you to comment on this particular quote which gets to the heart of what Alice was just talking about. You write, “At its core, it’s about value: The value of this disabled life and the value we place on the civil rights of people with disabilities.” I’m somewhat paraphrasing there. And talk a little bit about the value of disabled life as it sort of runs through this very debate.

NE’EMAN: I think that’s exactly what this is about. And part of what’s so concerning here is there is such a long history of the lives to people with disabilities being devalued by the medical system, right? This is the same medical system that discriminates against people with disabilities seeking access to organ transplantations. It’s the same medical system in which people with disabilities are often subject to inappropriate futility determinations. This is the same medical system that we often see many bioethicists calling for the use of quality adjusted life years to value disabled life as a percentage of non-disabled life. So, I think part of the issue here is that there is not a lot of trust on the part of people with disabilities, with very good reason, that they are going to be treated in an equitable fashion by the medical system.

To take things a couple steps more specific than that, you know, I think it’s very instructive and important to note that disabled people, as Alice references, did not make the decisions about how many ventilators this country would have ready in the event of a pandemic. Disabled people were not the ones who made the choice to under-invest in the strategic national stockpile. Disabled people were not the ones that made the choice to under-invest in our hospital system. I think there’s a very real risk of us making the decision that we are going to prioritize the non-disabled over the disabled, both in general, but especially within the context of the reality that it is the non-disabled majority that made the choice to not invest in health systems’ capacity prior to this point. So, I think there’s a real issue when you have a situation where many key decision makers can be confident that they will not be the ones most likely to be adversely impacted by the consequences of their under-investment.

And then just to take things a step beyond that — [interruption] Oh, go ahead.

VALLAS: No, no. Go ahead, Ari. [unclear]

NE’EMAN: No, just to take things just step beyond that, I think we just have to reinforce the idea that our civil rights laws cannot be waived even in the context of an emergency.

VALLAS: And I think that’s just fantastic segue into Sam, I want to bring you back in on this point because you noted before, and really a major through line of your paper, [unclear] just a few minutes ago, is this notion of failure of democratic legitimacy. Then what Ari was just speaking about, you, and I’m going to read from your paper a quote here. You write, “The combination of both of these policy allowing scarcity of ventilators while imposing a life or death costs of that scarcity most heavily on disabled people speaks to a failure of democratic legitimacy,” for the very reason Ari was just noting, that it was not disabled people who actually were at the table making these decisions.

BAGENSTOS: I think that’s exactly right. And that’s precisely the problem. You know, I mean, what we have here is sort of a two-step; the argument is sort of a two-step. At time one, there’s a decision made by society, through a process from which many disabled people are excluded for all sorts of reasons, to say we’re going to invest only a certain amount in our healthcare system. We’re going to invest only a certain amount in preparing for health emergencies. And then at time two, when the emergency happens, the folks who are running the system say, well, there’s just nothing we can do. We just don’t have enough ventilators. I’m sorry that that means that disabled people have to die. But, you know, greatest good for the greatest number. And so, the point that I try to make, or one of the points I try to make, in the paper you’re talking about, and the point Ari just made is, if you had a system that was fairly including people with disabilities in it, it wouldn’t make both of those decisions. You know, it might make a decision that said, look, we have other things to spend our money on than providing adequate healthcare. I would happen to think that would be a bad decision. But you could make a democratically legitimate decision like that. But then it would say the cost of that decision would be shared equally.

But when we have a society in which, as Ari says perfectly, you know, the people who are making the decisions can be reasonably certain that they won’t bear the greatest brunt of those decisions, the downside they can offload onto disabled people who are historically disadvantaged, who are still consistently excluded from the democratic process in many significant ways. Then we have a deep failure of democracy. And one of the points of the ADA and our other disability discrimination laws is it’s a moment when our society, and particularly the non-disabled part of society, was saying, hey, wait a minute. It’s unfair to fail to consider people with disabilities as fully equal members of our community. And so, we need to put some rules in place to constrain what seems like the natural tendency of a lot of people without disabilities to either just not think of disabled people or not want to think about disabled people, and so, end up putting a lot of the burdens of public policy on them. So, that’s why it’s so important that, at a time like this, we really take seriously the principles of the ADA.

VALLAS: And something that you note and that Ari’s noted as well that really feels worth mentioning here, just to the extent that this is not something that’s popularly known, is just the significance of bias, implicit bias that exists within the healthcare profession. Not because doctors are bad people, but because there are so few people with disabilities in the ranks of the healthcare profession. And also, there is really a literature documenting this implicit bias. Sam, as you put it, one who holds bias, that the answers that one comes up with to the question of who to provide care to, those answers are likely to be inflected, as you put it, by our underlying views about disability, our biases, overt or implicit about disabled people. And part and parcel of that is the perceptions of quality of life. Alice, you recently wrote a piece called Disabled Oracles and the Coronavirus, in which you seem to be speaking directly to people who assume that you have a poor quality of life, because, as you put it, you “had a tube attached to your face,” and you sound different. What do you say to people who maybe make those assumptions either silently or verbally? Share some of what you were looking to get across with that piece in this particular moment?

WONG: Yeah. I mean, I would say that as a person disabled since birth, I know how to communicate with healthcare providers at a really early age, effectively. And one of the under currents running throughout my entire life is having to explain and educated why I need what I need. As if I’m not entitled to it. I think that’s, again, this is really weird kind of challenge and struggle of just the huge amount of labor that disabled people perform and have to do all the time just to explain who they are, and just to get what they need. And I think that’s so much based on these assumptions of not only just people with apparent disabilities like myself, but also people without apparent disability, people with non-apparent disparities. And I sound like Darth Vader, and unfortunately, I cannot force choke ableist jerks, even though that’s really personal fantasy of mine. And it’s sad to say, but it’s true that I’ve had numerous experiences where people just do not see me as a real person. And I think that’s why I wrote this piece, because I think of myself as a oracle. I think of a lot of people in the disability space right now who’ve been working so hard [unclear] the advocacy toward the stimulus dollars and just making sure that disabled people are just not forgotten. And time and time again, it seems like people don’t hear us. People don’t see us. And these types of assumptions play directly into the kinds of opportunities, rights, and life chances that we have.

And one other concern I just want to bring up with the very real possibility, say, if I get sick, and I have to go into the hospital or get evaluated, is this inability to bring my family members or attendants with me because they have protocols? And I think for so many disabled people, I’m super concerned for those of us who need supports, whether it’s personal assistance or communication, and how this would also impact are diagnoses and care. So, there’s just so much to be concerned about, not just for me personally, but just for all of us.

VALLAS: So, Ari, one of the things that you take, really, you take kind of head on in your New York Times op ed is the straw man, right, the straw man who says, well, you know, we have to make hard choices. So, why not prioritize the people who will live the longest, you know, etc., all the criteria, all the conventional wisdom that you guys have been dispensing with here. But you take on the very question that no one seems to really want to ask out loud or answer out loud for sure, which is what would happen if we allowed disability discrimination in the rationing of care in a moment like this? What would happen on the other side? And you have some incredibly powerful words that you answer that question with. You say, “By permitting clinicians to discriminate against those who require more resources, perhaps more lives would be saved, but the ranks of the survivors would look very different, biased towards those who locked,” oh, excuse me, “biased towards those who’ve lacked disabilities before the pandemic. Equity would’ve been sacrificed in the name of efficiency.” Talk a little bit about what you mean to convey there.

NE’EMAN: So, what we’re wrestling with as a society right now is whether or not we can ascribe any value to complying with nondiscrimination law. Are we obligated to seek out this ruthlessly utilitarian goal of the greatest good for the greatest number, regardless of the consequences to us as a society and to more resource-intensive groups? Or have we, as a society, made some kind of judgment that we hold certain principles like nondiscrimination to be sacred and something that we’re going to defend even in the context of inadequate resources? I think that’s really important to grapple with at the moment. I also think that we are not necessarily obligated to abandon nondiscrimination law. In fact, I think we’re obligated not to abandon nondiscrimination law in order to simply maximize the number of lives saved. There are distributional consequences here as well. And that’s something that I think people intuitively understand at some level, but are often reluctant to question the sometimes non-transparent process of clinical judgment to really enforce. But we really have to.

I mean, first, people with disabilities deserve protection in and of themselves. Disability is a protected class. But second, African-Americans, low-income Americans, you know, many other marginalized groups are more likely to have underlying impairments going into the hospital. And so, taking that utilitarian approach really creates a serious problem that those who are already at the greatest disadvantage are going to be pushed to the back of the line in accessing scarce medical resources. Once again, let’s be frank. Marginalized people are not responsible for the situation we find ourselves in. It’s the majority that really have placed us in this situation, the non-disabled majority. And also, quite frankly, the irresponsible nature of some of our leaders.

In some instances to this day, you know, just yesterday, the president went on Fox News, which seems to be where he makes all of his major policy pronouncements, that and Twitter, and indicated that he simply did not believe the governor of New York and other governors that were highlighting the severe ventilator shortages that were currently taking place. A direct quote from the president of the United States as of yesterday, “I don’t believe you need 40,000 or 30,000 ventilators. You know, you go into major hospitals sometimes, they’ll have two ventilators. And now all of a sudden they’re saying, ‘Can we order 30,000 ventilators?’ I have a feeling that a lot of the numbers that are being said in some areas are just bigger than they’re gonna be.” That’s a quote from the president of the United States, OK? This is not an inevitable shortage. This is a shortage that, as Sam articulated, was the result of policy decisions. And it is just the height of hypocrisy to say that we are now going to send marginalized people to the back of the line because we, as a country, didn’t decide to get our act together in time.

VALLAS: It feels notable also just in sort of sharing some of the recent headlines about the moments that got us here. Just to offer that The New York Times is reporting as recently as Thursday that there was actually an imminent deal between the White House and GM, General Motors, to produce a large number of ventilators quite rapidly to address the shortage. Apparently, the New York Times is reporting the White House walked away from that deal because, number one, they felt that $1 billion was too much to spend on ventilators. I will note that $1 billion is exactly 1/500 the amount that the White House and Senate Republicans were very happy to earmark for a massive corporate slush fund just days ago. 1/500 that amount: not worth it for ventilators. And number two, perhaps most horrifyingly, they were worried that they would end up with too many ventilators. So, just underscoring the point you just made, Ari, about how we got here, why we’re here, and whose choices those were. Alice, you are about to get in as well.

WONG: Yeah, I was just going to say that this conversation also reminds me of other conversations about eugenics and about even gene editing. Because when we think about removing certain classes of people, we do see or fixate, you know every movie suffering of disabilities. When you’re think about it, we’re making major changes in the diversity of our human race and the future of our human race. And again, this is a question about what kind of future do we want and do we see and do we deserve? And I feel like this should be, there has to be a place for everyone in the future. And I think that’s, that there’s this one little guideline for all these decision makers who are developing protocols as we speak. Thinking about the future, who gets to be there? And I think that’s a heavy kind of thing to think about.

VALLAS: So, Sam, I’m going to bring it back to you, to close us out with a little bit of kind of what we need to be watching in the coming weeks, about where the debate goes from here. One of the very specific things that all eyes should be on is the set of lawsuits that you mentioned in court right now, filed by multiple disability advocacy organizations, your counsel, one or more of them. Some of the organizations I want to get a shout out to who are providing some leadership in this moment, filing these lawsuits include The ARC as well as Disability Rights Washington. And I want to read a quick quote from David Carlson, who’s the director of advocacy at Disability Rights Washington. He’s been on this show. “The disability community is a broad, inclusive community where individuals with a variety of unique life experiences join forces to fight the many ways they are similarly discriminated against. We will not sit by as members of our community are left for dead. We stand up for those with pre-existing disabilities and those with newly acquired disabilities who are impacted by COVID-19. We implore OCR,” the Office of Civil Rights, “to rein in and provide urgently needed guidance to the healthcare professionals who are prepared to relegate members of our community to die.” Powerful words. Sam, talk to us about the lawsuits that are being filed and how likely they are to win in court and what we should be watching in the weeks ahead on this debate.

BAGENSTOS: Yeah. So, I should be clear, these are not lawsuits. These are administrative complaints with, as David said, the Office for Civil Rights at the Department of Health and Human Services at this point. The hope is that the Office for Civil Rights, which enforces nondiscrimination laws in the healthcare context, will issue clear guidance before we get to the situation of rationing and that says you can’t do discrimination once we’re in that situation, if we tragically get there. If they don’t, then these cases will be lawsuits. So, yeah, so far, administrative complaints have been filed with the Office for Civil Rights from the State of Washington. And that’s the complaint that you were talking about. Also, the state of Alabama, where we heard earlier some of their discriminatory policies. I can tell you there are a number of others in the works because these policies are all over the place.

And I think realistically, the most important thing is to have clear rules before we have a moment where a doctor or a hospital administrator’s choosing between two patients. Because at that moment, I think anyone who has studied the legal system over time knows that courts don’t always show themselves to be at their strongest in standing up for the rights of marginalized communities at times when it feels like it’s really a crisis. Sometimes you do see that. I mean, when in response to a plague outbreak in 1900, the city of San Francisco decided that they were going to confine everyone of Chinese descent in Chinatown and actually let the white people who were in Chinatown leave, there was a federal judge who actually stood up and issued an injunction against them. In 1900, which is before you think of hero judges. But you know, for the most part, our judges aren’t heroes, particularly in the moment when we see great public hysteria.

So, what we really want to do is get the Office for Civil Rights to set down clear rules in advance. We’re very close. You know, we’re like a minute to midnight on this issue. We have very little time. But that’s the most important thing right now. And then, if that doesn’t happen or if hospitals violate the nondiscrimination laws, there will be a lot of lawsuits. Trust me on this.

VALLAS: And we’re going to have to close out there. But I want to give each of you a sort of final opportunity to share one last thought with listeners as we wrap up this incredible conversation. So, I’m going to start first with you, Ari, 30 seconds with any last thoughts you want listeners to have.

NE’EMAN: I believe we may be living through a very dark period in our history. If we don’t act now, if the federal government does not act now, to protect the rights of people with disabilities, the consequences for the equality of people with disabilities in our society, the consequences for the corrosion of the medical profession, the consequences for the unfortunately too-long list of moments of national shame that we have in American history are very grave. And the moment to act is now. And if we fail to act, then for generations to come, I think we will look back on this moment with shame and with regret.

VALLAS: Sam, I’ll go to you next, and then Alice, you’re going to get the last word.

BAGENSTOS: I have very little to add to what Ari said. I mean, I think we’re in a place where we’ve seen a number of decisions over the past few years by our government that seem to reflect a failure to appreciate disabled people as fully equal members of our community. I think a lot of the public charge rule in immigration, which uses the perception of disability as inherently leading to dependence and invokes these ideas that we saw from the eugenics period of people with disabilities sapping the strength of our state, right? And I think the decisions that are going to be made in this crisis period are going to be inflected by all of those biases unless we really fight. And so, that’s why we have to keep fighting against them.

VALLAS: Alice, you’ll get the last word.

WONG: Yeah, I just want to be really real and just say how scared I am personally about whether I will make it through. And the fact that this is a very real thing that so many of us are experiencing, this very real terror, I think there is also the opportunity to really listen to the wisdom of disabled and sick and immunocompromised people. If there’s anything to come out of this pandemic, it is for non-disabled people to finally realize all they’ve taken for granted and to really pay attention to what we’re saying and to actually act on it.

VALLAS: I’ve been speaking with Alice Wong, a disabled activist living in San Francisco and editor of an upcoming book called Disability Visibility: First Person Stories From the 21st Century that’s coming out in June, later this year. You’ve also been hearing from Sam Bagenstos, a law professor at the University of Michigan Law School, author of a paper we were just talking about that you can find on our nerdy syllabus page. And also, Ari Ne’eman, a disability activist and visiting scholar at the Lurie Institute on Disability Policy. He’s also writing a book on the history of American disability advocacy, and he’s the author of the op ed in The New York Times that we started with, I Will Not Apologize For My Needs.

I appreciate so much all of you taking the time in this moment of just complete chaos to come on the show and to share your insights with our listeners. And I wish you all the absolute best and wishes for safety and health and peace in this incredibly difficult moment.

NE’EMAN: Stay safe.

WONG: Thank you.

VALLAS: And that does it for this week’s episode of Off-Kilter, powered by the Center for American Progress Action Fund. I’m your host Rebecca Vallas. The show is produced by Will Urquhart and Allison Young, and our transcripts are courtesy of Cheryl Green. Find us on Facebook and Twitter @OffKilterShow, and you can find us on the airwaves on the Progressive Voices Network and the We Act Radio Network or anytime as a podcast on iTunes. See you next week.

♪ 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 trynta get freedom (freedom)

What we talkin’ bout….