What’s Up WID: The Aftermath of Hurricane Katrina Transcripts

Marcie Roth:
Hi everyone. Thanks for joining this special edition episode of the What’s Up WID podcast. My name is Marcie Roth and I am WID’s executive director and CEO. I’m happy to serve as your host today as I chat with the wonderful Sheri Fink. Sheri is a Pulitzer Prize winning journalist, Emmy nominated television producer, and the author of The New York Times bestselling nonfiction book, Five Days at Memorial: Life and Death in a Storm-Ravaged Hospital. This book is about choices made in the aftermath of Hurricane Katrina.
Sheri is a producer of the Five Days at Memorial limited series on Apple TV+ as well. Today, Sheri and I will be discussing a whole host of topics, but I’m first going to start with just a little bit of being a fan girl. So I’ve followed Sheri’s writing from her Publica days, from all sorts of writing that she has done in her time with The New York Times, and then certainly with my own experiences with Hurricane Katrina and the work that I’ve done in the intersections of disability, rights, justice, and disaster. Sheri’s very deep awareness of some of the issues that we grapple with really attracted me to her even more.
And so I got real brave one time and reached out and thought, “Well, I’ll never hear back from her.” And I heard back in about two minutes. So we’ve had just, I think, delightful conversations back and forth for a long time now. And I’m just absolutely thrilled to have the opportunity to ply Sheri with questions, and more importantly, listen to your answers. So let me introduce Sheri Fink, an amazing human and a fabulous, fabulous writer.

Sheri Fink:
Oh, thank you Marcie. And it’s wonderful to be in conversation with you. It’s wonderful to have been in conversation with you over these years. And also the work that you do is, you’re always at the center of issues, or every disaster that comes up, you’re at the center of work and issues that are very important and very often not front and center as one might expect that they would be, because they’re so central to the issues of emergency response and preparedness and resilience. So I’m very glad to have learned from you over the years and delighted to be here today.

Marcie Roth:
Well, thank you very much. And yeah, I think that’s one of the things I’d love to talk about. But first if you would just tell everybody, how did your journey bring you to where you’re at right now?

Sheri Fink:
Well, I have an unconventional background for a journalist because I actually went to medical school and also did a PhD in basic science. So I have a medical background. And then I got very interested in some of the humanitarian crises that were happening around the time that I was a student and a genocide going on in the Balkans, in the former Yugoslavia and Bosnia. And ended up connecting in the very early days of email back then with some peers, in a way, medical students in the Balkans who were essentially becoming war doctors and realized that there was a lot to learn from them and their experiences and ended up going off for what I thought was a year between med school and residency to work in the Balkans.
And one thing led to another, wars broke out, I ended up doing humanitarian aid work myself. And then getting very passionate about writing about some of these issues of medicine in crisis, medicine in extreme situations, which I could see, in some way, was a magnification of a lot of the issues that are with everyday medicine that affect medical providers and patients and the people who love those patients all the time, but are magnified, in a way, in these crises.
So we see them more, and maybe we have a chance to pay attention to them and do something about them. So I think that’s what led me to where I am today. That was the key turning point.

Marcie Roth:
Those of us who get that pull to do humanitarian work, it’s… I know some of our listeners are going to laugh because they know exactly how someone can take a giant leap into humanitarian action and then you’re never the same again. So how did you come to be so focused on Memorial and the circumstances for people in New Orleans during Katrina?

Sheri Fink:
So after years of doing emergency response work overseas in these, what were at that time called complex humanitarian emergencies, they had aspects of natural disasters sometimes, but a lot of human actions were influencing the toll of those emergencies. So after having responded to conflict situations and disaster situations in many different countries, Hurricane Katrina hit the US in 2005. And I think I was really naive. I think a lot of people were in the US in just assuming that, “Oh, we’ll do better. We are so blessed to have so many resources in terms of monetary resources or just materials and also the wonderful human beings who populate our health systems and emergency response systems.”
So yeah, just that assumption was there. And seeing the utter failures of the infrastructure, the immense suffering and death toll that resulted, it was very striking and jarring and upsetting and deeply problematic. And so I actually volunteered after Katrina with a public health team that was working in shelters where people who were displaced from their homes, they were in these huge often stadiums all over Louisiana, and we were documenting the health needs at these shelters where lots of people were displaced from New Orleans after the levees failed and the city flooded.
And this particular story of Memorial Hospital, which was one of many hospitals that were surrounded by flood waters where the people inside were waiting days and days for rescue, power failed, backup power failed. The situation was on the news. It was one of many stories after Katrina that stood and represented larger problems with our response, our preparedness, our mitigation measures. But what was so striking about this particular case was that very early on, there were accusations that some health professionals had intentionally hastened the deaths of their patients.
And it really caught my notice, but it was a big, big story at the time. A lot of people forget, it was just a big news story because people who worked at that hospital immediately reported that they disagreed with what some of their colleagues had done. And I had just written a book about a Bosnian war hospital that was under siege for three years, no power, bombs going raining down, having to do war surgery with no anesthesia.
And I had spent years working on that book and interviewed the survivors from that town. And I’d never heard of this coming up. I’d heard of, in fiction or in movies where you see difficult decisions, end of life in a crisis. But in this war zone, for three years, where they didn’t have power, they didn’t get desperate enough to have even talked about ending the lives of patients.
So it felt like whatever had happened, and there were different accounts at that time or just a lot of people saying this couldn’t have happened, whatever had led people at that hospital to believe that something like this happened, felt worth looking into. How had things gotten so desperate that this was even discussed, let alone did it occur and why? And so I started looking into it. And then the people at the center of the accusations, for obvious reasons, were being told by their lawyers that they couldn’t talk at that time.
And so I really started to interview more and more people and realized that it wasn’t just a story about the people who were being accused and said they were innocent, but a much larger story that involved the aspects that you referred to in the beginning, that intersected with issues of disability and bias and equity and many, many other important issues that are with us all the time in this country.

Marcie Roth:
And it’s interesting to hear you pointing out that you were surprised by the failures here in the US compared to your recent experiences and many experiences in disaster relief work in other parts of the world. And I know, to this day, 17 years later, people often refer to what happened during Hurricane Katrina as a particularly significant milestone and perhaps a pivotal period. So do you see things have changed? How much are you watching? How much is humanitarian action still front and center for you and what are you seeing?

Sheri Fink:
So I’ve been deeply immersed in continuing to follow this topic of, whatever words we want to put on it, but basically medicine and crisis or crises that affect healthcare. And of course, that includes COVID, and I’m writing a book about COVID right now. And the common link here, and you mentioned that surprise that I had, it’s, in some ways, very analogous to the fact that the US was rated number one in preparedness or the top level of preparedness for pandemics by an international body that had been created shortly before this pandemic happened.
And in terms of the deaths and in so many levels and metrics, we’ve obviously done very poorly compared with many other countries. And I think it is that we have focused too much in this… Or maybe one of the issues here is that there’s so much focus on our technological tools in this country because we’re blessed, again, I keep using that word blessed, we’re lucky, we’re fortunate to have a lot of money in this country compared to other countries and a lot of advanced technology in our health system. But in some ways, it can make us more vulnerable in a crisis.
So whereas this town in Bosnia, which was this particular town that I wrote about, that was surrounded by enemy forces and under siege for three years, but the people there, they were a little more resourceful. They were able to recharge car batteries on the river that ran through town and they did all sorts of hacks to keep going at that time. And I’m not going to say it was easy or that people didn’t become extremely desperate, but it occurred to me that, in some ways, in some aspects, we will be more vulnerable if we lose that sense of can do or the ability to improvise and not just feel like if we don’t have those tools that we rely on that suddenly we can’t do anything.
And so that’s the danger of relying. And this is not just in medicine, but just think of when you don’t charge your cell phone and your smartphone and you suddenly don’t have the map that helps you navigate a new place. We’re all getting very dependent on these things that run on power. And then we haven’t focused enough on maybe the human resources and the people and investing in them and ensuring that they have what they need to be able to do the job. And we saw this so much during COVID and remain huge pressures on the health workforce and just a lot of our issues in the COVID response, particularly during the surges, had put a huge amount of pressure on the health workforce.
So that’s, I guess, the negative side or the side that we see that there are still huge issues in our ability to be resilient in medicine, in healthcare when there is anything from a hurricane to a pandemic and anything in between. I would say, on the positive side, I do believe and I’m curious if you agree with this because you’ve been in this game a long time, I think there’s more awareness that preparedness and response are top priorities and that there needs to be attention to them. And certainly, there were some positive developments after Katrina, such as, and I’m sure you remember the years of battle that officials went through to pass this minimum standards of preparedness for healthcare providers in the US as one of the conditions of participation in Medicare and Medicaid, which is obviously a big source of reimbursements for health providers.
So now, I think it took a dozen years after Katrina, after a realization of all the many ways that health providers were vulnerable. There was then a rule that required just some very minimal, like having plans and doing an exercise and having some more robust backup power systems. But we frequently, the focus goes to the next important thing and it seems to be a human response to just move right on, not want to look back, and all of the outrage and all of the momentum for change and for investment, a lot of times, really goes away.
And so I think the big question now with regards to all that we’ve learned of our vulnerabilities with COVID is, what will change and will anything change and how much will change? We some areas of the country being… Again, I’d be interested because you’re at the center of a lot of responses to coastal storms, et cetera, and very interested to look at Hurricane Ian in Florida and some early suggestions that there may have been some improvements in the preparedness to whether that affected patients and healthcare institutions.

Marcie Roth:
So much to unpack here. So let me begin by saying that I think that the resilience focus, the preparedness focus, it’s been a particular challenge because everybody still has this medical model mindset that people with disabilities need to be planned for rather than we are among the most resilient, we’re master problem solvers. And so, to your fabulous example, we have to go to plan B and C and D all the time.
So we’re actually much better at planning for what could go wrong because stuff goes wrong all the time. And yet our preparedness and our community resilience efforts continue to be unwelcomed or only marginally welcomed in our local communities. It’s a real head scratcher. And then I love that you brought up the healthcare provider emergency preparedness rule, which was, as you said, many, many years in the making.

Sheri Fink:
Because there was so much pushback from industry, it should be said about an unfunded mandate.

Marcie Roth:
Yes.

Sheri Fink:
Yeah.

Marcie Roth:
Yes. So much pushback.

Sheri Fink:
And so much water in town from the original plans.

Marcie Roth:
Yeah.

Sheri Fink:
Yeah.

Marcie Roth:
Yes, exactly. So much water in town. And then even after the rule was published and there was a year to launch it, then there was an effort to dismantle the rule. And of course, to point out one of the disconnects, this particular rule, super important. But the only consequences might be after the fact, if you are seeking Medicaid Medicare reimbursement and you have not met the requirements of the rule, you may not get reimbursed for the work that you’ve done. So that means taking funds away from healthcare providers after they’ve already done the work, which, as you can imagine, is not really a popular thing to do. And yet, they’re not given the resources to do the planning, and as you said, focusing on exercises, focusing on communications, focusing on having the tools in place to deal with power outages and such.
So the punishment will be, we won’t pay you back, as opposed to here, let’s help you to make sure that all of these things are in place. And so then, thinking about COVID, and I’m really interested to hear. You and I have talked a little bit about the horrors of the extreme impact of COVID on people with disabilities of all ages. And people in congregate facilities, just in nursing homes, and we’re not counting group homes, we’re not counting carceral facilities, we’re not counting psychiatric hospitals, just the traditional nursing homes, it’s estimated that about 200,000 people died from COVID. Most of them, according to the American Community Survey of nursing home residency statistics, almost 97% of people in those long-term care facilities are people with disabilities.
So in the disability community, as we call it, people who focus on disability rights and the need for equity and justice to center the most disproportionately impacted, multiply marginalized people, it’s commonly, we are well aware that everybody else has talked about the elderly, the people with comorbidities, underlying conditions, people who are fragile, people who are frail, all those euphemisms for disability, which, disability comes with some civil rights obligations, and yet, as you talked about the horrific genocide that you experienced, many people in the disability community are calling the death of disabled people in COVID a genocide.
So I’m really interested to hear your reaction to some of the things that I just said. And then, how can we get more focus on the medical perspective, the industrial… I call it the humanitarian industrial complex. How can we move all of that and move government to shift that paradigm so that the people most disproportionately experiencing the pain are the people who are the closest to the power. So I’ll stop there. Now I’ve given you a bunch to unpack.

Sheri Fink:
Yeah. Thank you for all of that. And that point you made at the beginning of these comments about the adaptability, the resilience, the innovation, the creativity of people who live with disabilities, and that being an asset to planners who work on emergency response, that that should be seen as an asset and that the individuals who have a lot of experience with adaptations. In other words, it’s not just, “Oh, let’s include them because that’s the right thing to do, that people who are being planned for should be part of the planning,” but it’s also like, “Hey, it might actually help everybody even more.” I mean, it’s just such an important point that you made.
And the other thing I want to reflect back on is just getting to what’s changed and what hasn’t. Absolutely the disproportionate impact of these varying emergencies on people with disabilities and a sense of, I would say, to me, as somebody observing and bearing witness and trying to record, to me, there’s a feeling that is obvious, if the same groups of people are the ones dying disproportionately in these crises, what does that say about how society is valuing these groups of people?
And it just feels outrageous to see it happen over and over and over again. Yeah. It feels like that has to be looked at and amplified. And maybe it’s so ingrained, these biases are so ingrained that they’re not even seen by people who are temporarily able.

Marcie Roth:
Exactly. And I talked about the horrific loss of life in these congregate settings. And number one, it says a whole lot about… Because we collectively presume that the people in nursing homes are old. And certainly, you’ve told the story, and then the series has given us real visuals of the fact that people are considered expendable, disposable, left out, left back, left behind. And at the same time, in your telling the story, you were mostly talking about people with disabilities.
And when I talk about 96% of people in nursing homes being people with disabilities, but you don’t go to a nursing home because you’re old, you go to a nursing home because you need support and your community has failed to put that support in place. And so you have no choice. I have never heard somebody say, “Boy, I can’t wait until I can go to a nursing home.” Right?

Sheri Fink:
Right.

Marcie Roth:
So I guess, one of my real questions is, how do we convince the storytellers to tell this part of that story?

Sheri Fink:
I guess, I don’t know the answer to that. I mean, I feel like you’re in activism. I was a student activist around certain issues, but then I became a journalist and I stepped back and thought… Actually as journalism, I felt like truth was its own form of activism, if that makes sense. If you tell stories, these are facts, right? It is a fact that these groups of individual, that people with disabilities are disproportionately impacted. And all these metrics and some of the ones that you just cited are the horrific, just unthinkable but predictable in some way, toll from the COVID pandemic.
But you can see analogies in other recent disasters, and certainly Katrina, which we’re talking about with the deaths of so many people in nursing homes and in the hospitals. And even the recent hurricane that hit, not Florida, but New Orleans, again, last year, a year ago, it was people in nursing homes and people also just seniors who lived in just housing buildings that weren’t prepared.
So anyways, I’m going on and on about that. So I guess just telling those stories, getting the truth out is important. And I guess the activists need to think about how to interest journalists or to get those stories out through your own, because now everybody has platforms with social. But I’m also concerned about just, as a storyteller, as a journalist, what impact does this work have? And just, sometimes telling the story and having people empathize with the individuals, it is powerful. But then what comes of it? And that’s something I think about as a storyteller.
And maybe we should also tell the audience just a little more about, because they might not be familiar with, the Five Days at Memorial Story.

Marcie Roth:
Please.

Sheri Fink:
And where that intersects here, where that overlaps here is that when the levies failed and the water started rising around this particular hospital in New Orleans and the power was threatening to go out, there were actually two hospitals. There was a hospital, and then a hospital within a hospital that had most of the people who couldn’t ambulate, who were dependent on ventilators for breathing, people with multiple chronic health conditions where they relied on a lot of care. And so it was called a long term acute care facility. It was providing acute care, which hospitals do, but for a longer period for people who needed long period of rehab or had multiple intersecting medical issues.
And so one thing that happened early on that was so telling in this hospital as they decided who to prioritize for evacuation first as the power was threatening to go out, the long-term acute care hospital patients were not even in the discussion because the main hospital controlled all the facilities, they controlled the helipad. And when they began to discuss which groups of patients should be prioritized, it’s almost like they forgot about this hospital within a hospital that was, most people… When you think about triaging a resource or who gets access, who should be prioritized, we’ve talked about, in recent years, the COVID vaccines when they first came out, like which group should be prioritized? Often you should think about, well, who is it who needs that resource? And who would have a bad impact if they didn’t have it?
And so logically, it would be people who are power dependent, whose care relies on power, you would think you might want to prioritize them for rescue before the power fails. And they were completely left out of the discussion. And I remember interviewing. I spent many, many years. First, it was an article, then the book Five Days at Memorial, and then of course the Apple TV+ series that just premiered and can be watched now that dramatized the story, that visualized it so you can meet the individuals who are based on some of the real people there.
But I remember early on, as I was interviewing people, they were telling me about that there were literally doctors who said… I can’t remember. There’s a quote in the book, the nonfiction book, like we do too much for these folks. And there was an active tension within that hospital about whether those individuals should be even entitled to the care that they were getting. And sure, of course, there is a valid discussion about for-profit healthcare and sometimes people not having the informed choice about how much care they want. And sometimes, people can make a choice to want or not want certain interventions. That is a valid conversation.
But you see, and through the story, as the story unfolded, as these days of disaster unfolded, some of the biases or the sense that these individuals lives were just literally not as much of a priority to save. And some of the doctors actually, I’m sure a lot of people with disabilities have talked a lot about bias within healthcare. And so these were doctors and they’re quoted in the book literally saying things like this. And there’s a moment, I remember interviewing some Coast Guard auxiliary people who were manning the phones when different calls were coming in for help.
And the Coast Guard was organizing a rescue of the patients of this hospital within a hospital which had reached out independently trying to secure some rescue resources. And when the Coast Guard was about to send them and began to send the helicopters, the main hospital staff sent them away. And that was for a variety of reasons, but there was a statement, again, by a staff member of the hospital to the Coast Guard, something to the effect of, “We don’t think these folks will make it anyways and it’s not worth taking the risk.”
The helicopters were arriving at night, it was valid to be worried that it was dark and people could be injured. But it was stated so flatly that years later when I found these officials, that they still remembered being shocked by that, and I think, responding something like, “Shouldn’t people who have the most vulnerabilities be prioritized first, not last?” And that’s really one of the questions that this situation raised.

Marcie Roth:
And you all covered that so dramatically, visually, heartbreakingly in the fifth episode, the experience of people having to weigh these decisions. I of course come at this from a longstanding frustration that people with disabilities were considered a liability and not given an opportunity to be an asset. And at the same time, there were just heartbreaking discussions about pets and decisions about pets. And in disasters, we struggle with that often because, not that we’re not pet lovers as well. And in fact service animals can be the dividing line between living in the community and not being able to. Which is why it’s so important that this story is told. And I’m curious to know, how did you convince Apple TV+ to do this?

Sheri Fink:
Oh, well, I don’t know that they needed any convincing, but wasn’t the one. They supported this project to an incredible extent. And you can see that with the quality of the production. I mean, there was a nine million liter water tank that was built to actually film a lot of the scenes with real water to not just have to fake that, to actually put people in that, and just a fantastic crew and cast and very committed storytellers. But the real answer to that question is, the executive producers who were also the directors and the writers, the main directors and the sole writers of the series who are very very experienced people in the dramatic space and television and movies, Carlton Cuse and John Ridley, and they read the book and they wanted to make this. They wanted to do the adaptation. And so they’re the ones who had the conversations with Apple.
But I know that they really embraced the storytelling in it that tried to honor the real events and a lot of these nuances, which is really unusual, I think, in TV where you don’t have a villain and a hero, but you really, really grapple with these decisions. And bringing it down to that human level, I think, can help people identify. Because yeah, when you talk about these outrageous things that you’ve discussed and the numbers, the pure mind boggling numbers of people who have died. But sometimes, when you bring that down to just a human being, it’s so powerful because then we can see, and then you multiply that in your mind by so many more people, and we grasp it, I think, on a different level.

Marcie Roth:
Yeah. It’s funny because as I posed that question to you, how did you get Apple TV+ to do this, and you were like, “Oh, no, no, no. That’s not how it went.” But looking back on the question that I had asked earlier, so that’s the mindset that we find ourselves in as disability.

Sheri Fink:
Oh, right. Like you have to convince to tell a worthwhile story. Yeah.

Marcie Roth:
Right.

Sheri Fink:
Yeah.

Marcie Roth:
Exactly. Right? And so as you were sitting here thinking, “Do I have to write a book? Do I have to… What do I need to do? What does the World Institute on Disability and our partners, what do we need to do to get people to notice these stories?” So just in that exchange, that was an aha moment for me.

Sheri Fink:
I get it. I like that we can process that.

Marcie Roth:
So talk about Emmett, please.

Sheri Fink:
Yes, I will. And the actor who played him, Damon Standifer, it was just fantastic. So Emmett Everett was one of the patients in this long-term acute care unit at this hospital called Life Care. And he had had a spinal cord stroke. So that left him not able to walk. And he was also morbidly obese and had a number of health issues. So that’s just a background on his condition physically. He was on the seventh floor of this hospital. He was not in the initial round of prioritization because none of the patients on that floor were.
And so when the backup power failed and the elevators didn’t work anymore, he was in a position of… It was going to be difficult to move down to the staging areas from which patients were then moved to the helipad or to the boat area. And it’s stunning when you think about it, when you step back and think about the fact that a hospital wouldn’t have a way to move a patient who can’t walk downstairs in-

Marcie Roth:
Oh, don’t get me started!

Sheri Fink:
… in an emergency, because it doesn’t take Hurricane Katrina, a very, very notable, and in some ways, extreme example of a disaster in this country. But as we all know, the power fails for many reasons. And I’m sure many listeners have thought about this issue and dealt with this issue of all the time when there’s not good access or there aren’t elevators where there should be. I’m thinking of the New York City subway. But in a hospital, I mean, come on, where lives are in your care.
So that’s really struck me as we were working on the series and just the outrageousness of that. And that suddenly struck me. And I think I called you and said, “Has this been fixed? Is this a requirement?” This should be a minimal requirement. It just seems like really stunning. And there sleds, there are different technologies that can help move a patient who is medically fragile as well to assist them to get downstairs.
But in this case, apparently, they didn’t have those resources or didn’t know they have them. Sometimes that’s the issue. If you don’t require regular exercises, people forget sometimes the resources that do exist. And so there was a discussion about Mr. Everett who was… And of course, there’s a whole level of bias we can talk about with cognitive disabilities. And so a lot of the patients on this floor, some of them had dementia and some of them, because of their nature of their illnesses, were kept in an unconscious state. So they weren’t speaking or interacting.
And Mr. Everett was an exception to that. And he was awake and alert. And because he had been at this facility for a while, the long term nature of the care, there were strong relationships between him and the staff who very much liked him. And he expressed the desire to be rescued, which I think is important. He wanted to be helped. He said, “Don’t let them leave me behind.” Because his three roommates were removed out and he was still there. And the big issue in the discussion and the people I interviewed as I spent years researching this book, which was a work of journalism, they said we couldn’t figure out how we’d get him down the stairs and up to the helipad.
And according to the witnesses to this discussion and participants in this discussion, a decision was made to give him some drugs that were found in his body after his death. He was one of a number of patients, close to two dozen patients who were later found to have died with morphine, Versed, which is a fast acting sedative, one or the other, or both of those drugs in their bodies. And his body in particular had both of those drugs that were what were considered extremely high levels. And they were not drugs that had been prescribed for him.
And his case really stood out because all of the people who were responsible for providing his care felt, from a medical standpoint, if he was moved, he was not in danger of dying. He wasn’t on the brink of death where he was helped out of his last moments of life by those drugs. He was thought by his providers to be in a position to be rescued. And so his story is told in more depth in the series and in the book.

Marcie Roth:
And he was… As I said earlier, I know so many people just like him who… And for people who think of somebody like him as his situation was somehow different or that could never happen to me, that could have been any of us. And our systems are still so broken. In disaster response in Hurricane Ian, we’re learning more about an incredible woman who had been placed in a long term care facility and things started to fall apart at the beginning of the hurricane. And so she got her roll ladder and she walked out of the nursing home. She’s like, “I’m not staying. I’m going out into the storm.” And they called the police on her. And she said, “No, I’m not staying. I’m leaving.”
And she ended up in a shelter. And very fortunately, connected with some folks, folks that we work with, who wanted very much to help her to not go back to the nursing home. And so she is going to be someone who has a much better outcome than she might otherwise have had. And you asked, Sheri, certainly things are changing, certainly there are great examples. And so I want to call out two particular very recent examples of great progress. And those are both happen to be hurricanes, but Hurricane Fiona and Hurricane Ian. Where in Puerto Rico, folks that we’ve been working with for years who are disability community leaders, they have built an island wide initiative of core leaders who work together before, during and after disasters to plan or people with disabilities themselves at the forefront.
And then in Florida, folks who’ve also had lots of practice, unfortunately, they as well have a statewide initiative. And disability community leaders have been very actively assisting and advocating for disaster impacted people with disabilities. And of course, as we know, the people who are most disproportionately impacted are people of color, black and brown, indigenous people who are LGBTQ, people who have other intersecting identities that are very often marginalized and certainly, commonly people who experience poverty and people who are houseless.
And really the good news is, these community leaders are stepping up and stepping in. We also have, through our Global Alliance for Disaster Resource Acceleration, we’ve been doing a lot of work in support of a disability led, women led organization called Fight for Right in Ukraine. So that’s a very different kind of a crisis. But the issues, the needs, access to accessible information, evacuation, sheltering, sheltering in place, extreme weather, all of those pieces are so similar in the Russia’s war against Ukraine.
And again, another great example is the leadership of these disabled women who are really making a very big effort with a lot of support from folks around the world who want these disability led organizations to have the resources they need to support their community. So that’s-

Sheri Fink:
I think this is so important because it shows that the failures are not inevitable and that there are successes and there is another way and it is doable. And so it is very important to highlight the examples that you just gave because then we don’t get mired in this, well, it can’t change. And that was really true in Katrina too. There were hospitals that didn’t have this happen. And I think that’s really important because you can focus in on this one story and wonder, well, was it inevitable? Could it have turned out differently if different choices were made?
And actually we do have the counterfactual. We have places, for example, the public hospital where they were always similar to, like you said, the resilience of people who are always having to adapt and find another way. And so this hospital was always, not enough resources and staff and they had to adapt and improvise. And they actually had much better outcomes. They had twice as many people, they were trapped for longer and they had fewer deaths and no evidence that such desperation was reached of deciding to potentially hasten patient’s deaths.
So those counterfactuals are really important. And the other thing I wanted to say, reflecting on the examples that you just gave, where you talked about the people who are disproportionately impacted and also deal with those types of maybe biases or marginalization or devaluation on a day to day basis, have to struggle, and how that can be magnified in a disaster. And one thing that was really interesting in COVID was this issue of prioritization, which, Five Days at Memorial, you see that, that really stark dilemma about which patients get rescued.
But in COVID, there were also, early on, that fear around not enough ventilators for a respiratory disease where a lot of people will have a period of not being able to breathe on their own and need the support of a machine. And there was a fear that there wouldn’t be enough ventilators, there wouldn’t be enough staff to run ICUs. And this happened there were…

Marcie Roth:
Oh. Yeah.

Sheri Fink:
But one of the interesting things that occurred that turned out to be very bipartisan issue, which is rare in these days, was this idea that there had… And I know this very well, but listeners might be interested, just there were some written guidelines on how you would make those decisions, if you being a hospital or a hospital staff, who to prioritize if those resources were not felt to be adequate for everybody who needed them. And there were some baked-in biases that would have amplified the potential disparities, or I should say preexisting disparities. We already know there are disparate health outcomes for some of those groups that you mentioned within healthcare on a baseline.
And so there were some very well meaning provisions in these guidelines that would’ve further disadvantaged and magnified people who needed these resources. And what was amazing, and this really shows the importance of inclusive planning, is that because small groups of people, mostly the groups who you would imagine might populate, people who’ve been able to access medical school and go through that and be professionals. And so these well meaning groups of doctors and hospital administrators who had come together to, and ethicist, I should say, to make these plans because there were so few examples where they had gone out to communities and made sure that all the stakeholders, all of us, any of us who could need medical resources in a disaster, that the different groups had not been part of that discussion. It was just enclosed small rooms, and not published in a lot of cases.
Once that more and more people became aware of this, and disability rights groups were among the groups that brought complaints to the Office of Civil Rights in the health department under both Trump and Biden and action was taken and those plans were changed to comply with civil rights laws in this country. So I just think that’s a great example of where it just highlights the importance of having eyes on these things and having people in the room who represent viewpoints or just, I think it wouldn’t have occurred to some of the planners about how these things intersect.

Marcie Roth:
And we had to do a lot of work as disability rights leaders. We were outraged. I have a friend who uses BiPAP on a daily basis, lives in the community, very successful. And they were told that they could not wear their BiPAP into the emergency room and they would not be eligible for a ventilator. And so they should just not come to the emergency room.

Sheri Fink:
Wow. But, yes, that was in some of these plans. Absolutely.

Marcie Roth:
Yes.

Sheri Fink:
Or people who relied on ventilators at home, if they got sick… and this was for many years even before COVID. But if they would get sick in a pandemic that their ventilator could be retriaged to somebody else based on these guidelines. Yeah. It sounds amazing to say it, but this is a very common provision in these types of guidelines.

Marcie Roth:
Yeah, exactly. And at the same time, because this was a public health emergency and because there are some specific waivers, flexibilities, there were some really unfortunate, and I would argue illegal efforts to move people out of acute care hospital beds, people with COVID, for instance, and move them into long-term care facilities while they had COVID in order to make space for other folks who were sicker. And then those folks brought COVID into the long-term care facilities. Or more recently, and of course COVID is nowhere near over, but more recently, people who don’t COVID have been moved into facilities where lots of people are sick. And so that’s made them sick.
There’s so much that we all need to find opportunities to learn from. People talk a lot about lessons learned, and we joke lessons observed, necessarily learned. And there’s a lot of talk about building back better and we think we should actually be building forward better. Building back has not served us very well. So yeah. I think if we take the good and promising practices and we all take the opportunity to imagine and then do the work to prioritize better outcomes, I think this is a real turning point for us as a nation, globally, the work that we’re doing in other countries.
Many countries, as you said earlier, are doing far better than we are here in the US, which is incredibly disturbing to people and uncomfortable. And so much more work to be done. And I think this conversation has been such a gift. The World Institute on Disability, we have What’s Up WID podcast and we bring a lot of really great folks to the mic. And having you be a part of our podcasts, it means so much to me, Sheri. And your work, your continued work, I can’t wait to hear and see what you do on COVID. I welcome every opportunity to chew through some of the thorny issues if you want to talk about them. And just so appreciative of your leadership and your willingness to take a dive into some of these issues from a disability perspective.

Sheri Fink:
Well, thank you Marcie. And I would say just please keep telling the stories. Well, in particular with COVID now with the book, if you or the listeners have examples that are important to get out, I would love to hear from you. So keep me in your Rolodex.

Marcie Roth:
Okay. That’s a promise.

Sheri Fink:
Yeah. And thank you. I learned a lot from our conversation, as I always do when we speak.

Marcie Roth:
Yes, me too. Me too. Any last thoughts or anything you want to put out there?

Sheri Fink:
Just thank you. And thanks to your community, to you, to your colleagues, to people in the disability rights community for, I guess, educating and raising awareness among all of us, including journalists who might not have known some of the things that you bring to light. So yeah, thank you for that. And like you said, we can end on that positive note of knowing that there’s more work to do and it can be done and that change can happen.
And even if it impacts one community at a time, it’s still really, really valid, or one individual at a time, like the person you just talked about.

Marcie Roth:
Yeah. And in closing, I would like to say, let’s dedicate this discussion to Emmett and to someone who was very pivotal for me, Benilda Caixeta, who also-

Sheri Fink:
Yes.

Marcie Roth:
… survive Katrina. So how about if we dedicate this discussion to them?

Sheri Fink:
That’s beautiful.