The Epidemic of Racism, with DeRay Mckesson

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Andy talks to DeRay Mckesson about another epidemic sweeping the country — violence by the police against Black people. They talk data and policy solutions, and DeRay provides a personal and comprehensive view of what’s been going on across the country in the wake of George Floyd’s murder at the hands of the Minneapolis police. Then Andy calls disability activist Sinéad Burke in Ireland to provide a global perspective on militarized police and what we can learn about disability and accessibility in a pandemic.

Show Notes 

Keep up with Andy on Twitter @ASlavitt and Instagram @andyslavitt

Find DeRay on Twitter @deray and on Instagram @iamderay. Listen to Pod Save the People at 

Follow Sinéad @TheSinéadBurke on Twitter and Instagram. Listen to As Me with Sinéadéad-burke/ and pre-order her book at https://www.Siné

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DeRay and Sinéad shared so many resources in this episode! Follow up on those leads: 


[00:01] Dr. Martin Luther King Jr.: I think America must see that riots do not develop out of thin air. Certain conditions continue to exist in our society, which must be condemned as vigorously as we condemn riots. But in the final analysis, a riot is the language of the unheard. 


[00:28] Andy Slavitt: Welcome to In the Bubble, it’s Andy Slavitt. We are here in our bubble in the Minneapolis/St. Paul area and our bubble has kind of popped. So there’s a lot of bubbles. There’s, of course, political bubbles. There’s racial bubbles, our household bubbles. And today we’re going to veer off of talking just about the bubble of the pandemic and talk about really another pandemic, which is police violence against the black community, with DeRay Mckesson. You just heard a speech from Dr. Martin Luther King Jr. where he talked about being seen and the role that riots and public protest plays in that. Now, when I was a small boy, the school that I went to was Martin Luther King Jr. Elementary School, and it was 1971, and I was in a manner of speaking bussed to this school.


[01:31] Andy Slavitt: And every Tuesday we saw a clip of Dr. King speaking. So it was very much a part of my childhood. So those are words that I think many of us — and it’s a voice that many of us are used to hearing. And the comparisons between 2020 in 1968, the year that Dr. King was assassinated, are getting made everywhere. So we couldn’t avoid making today an episode about what’s going on in this larger context of this bubble. And we have published some things around the epidemic of racism and how many deaths and disproportionate deaths come from racism, not just the violent kind, but in the healthcare system. So today we’re going to talk to DeRay Mckesson. DeRay is a civil rights activist. He’s famous for his blue vest, being unlawfully arrested in Ferguson, he is an educator. He’s a friend for the last few years. He has a podcast called Pod Save the People, which I’ve been on a few times. He’s also somebody who approaches the topic at hand in a very factual, analytical way. He has created a number of resources, which we’ll talk about at the end of the interview. But I don’t want to hesitate anymore. Zach has agreed to bypass his facts today to get to this very important interview with DeRay Mckesson. Here’s DeRay. 


[03:10] Andy Slavitt: Thanks for doing this. How are you doing?


[03:15] DeRay Mckesson: I’m good. Tired. Busy. A little overwhelmed. We got a lot of work to do. You know, there’s a big gap in what people know about police violence, so we’ve been spending a lot of time trying to help people understand because we manage the most comprehensive database about police violence in the country. So a lot of our analysis is new. It’s like we are crunching the numbers differently than it’s ever been crunched before. So we are really busy. Overwhelmed, but good.


[03:40] Andy Slavitt: What do the numbers tell you? What picture is it painting you telling people here? 


[03:45] DeRay Mckesson: So when we think of the top line, in March and April 2020, the police killed as many people as they killed in March and April 2019. So Covid, quarantine lockdown actually had no impact on changing the numbers, which is sort of wild because it’s one of the first times in the history of the country where we see crime decrease all at the same time. there’s no other reason besides a quarantine or a pandemic. So people weren’t outside, crime is at historic decrease happening across the country and the police still killed a lot of people. Remember that a third of all the people killed by stranger is actually killed by a police officer. And 2019 was a first year where black people were more afraid of being killed by an officer than being killed by community violence. So every way we cut this, this is about race. Black people are three times more likely to be killed by a police officer than white people. And in Minneapolis, where the protest began this time, black people are 13 times more likely to be killed by a police officer. It’s actually the single biggest disparity with regard to race and police violence in the country is in Minneapolis.


[04:45] Andy Slavitt: And in the last number of years, I mean, since we started with iPhones and hearing the names of all these people killed by police going back way before George Floyd, basically you’re saying things have not improved. Things are just as they were, even with body cams and cell phones and everything else. 


[05:13] DeRay Mckesson: So it’s not what I’m saying, the data is clear that the police have literally just killed the same amount of people. So the police kill roughly 1,100 people a year and that hasn’t really changed. So there’s been slight variation, but since 2014, the number has not dipped below the 2014 number. 


[05:28] Andy Slavitt: If I were to ask you a few years ago when you started this work, if you expected to see improvements, what would you have said?


[05:36] DeRay Mckesson: You know, in 2014, that’s what’s interesting, people were like what should we do? And we didn’t really know. We had a hunch. So we put together what we call Campaign Zero, it was 10 buckets, sort of everything that people had talked about when we talk about police violence. It was like community oversight and training and video, body cameras. We went out on a limb and said police union contracts and use of force policies. So it was these 10 things and we were going to engage in a quest to figure out like where the solutions were. Six years later, we know that two of those 10 things actually matter the most. So it’s policing union contracts and use of force policies matter disproportionately more than almost anything else. Also in 2014, we were trying to figure out like what were the numbers? So there are three big databases about the police in the country. We started one of them in 2015. The other two — one is the most famous, obviously, because it’s The Washington Post. And the Post database is interesting. We like the Post. The challenge with them is that they only include on-duty killings that include a gun. So Eric Garner’s not in their database because Garner was not killed with a gun. George Floyd is not in their database because George Floyd of Minneapolis was not killed with the gun. And if you remember Botham Jean, where Amber Guyger walked into his apartment in the middle of the night and shot him dead. She was off-duty and they only include on-duty police officers. 


[06:58] DeRay Mckesson: So he’s not in the database. So we think their database is a good database for what it does, it’s just a limited database. The other big database is Fatal Encounters. They are the OGs in this space. Really couldn’t do what we do without them. Nobody could, because they just have the most data for the longest period of time. The challenge is that they include a set of things that we do not consider necessarily police violence. So say, for example, somebody is self-harming in an apartment. The police come, police knock on the door. The person dies by suicide. They would consider that a police-involved death. And we think that might be a little too loose. Our database is all on-duty, off-duty all weapons, and only cases where the police directly contributed to the death of somebody. So we started that project in 2015, just trying to figure out what those numbers look like. And today, it is the most comprehensive database of police files in the country. So we just know so much more. But those two buckets around use of force and police union contracts are really where we made the biggest bets and where we turned out to be right. 


[08:01] Andy Slavitt: So what is the action in police union contracts and in the use of force policies that actually works? 


[08:09] DeRay Mckesson: So the contracts is like a two to five year strategy, which is a little more complicated because contracts have to be negotiated between the city and the police union. Minneapolis is actually in the middle of negotiations right now. But it’s a great example of what happens with a contract. In Minneapolis, half of the police officers who get fired, get rehired. And that’s because you can appeal to an arbitrator in Minneapolis. The research is actually clear, and it is newer research, that shows that the presence of arbitration in police unions specifically almost guarantees that there won’t be any accountability. Because what police contracts did really well over sort of 15, 20 years of negotiating is that they put a ton of procedural roadblocks in place. 


[08:52] DeRay Mckesson: So you’ll see cities — like, Chicago has a clause that says that when an officer is interrogated, only one person can speak to the officer at a time, and only two people can be in the room. And on the surface, that looks really innocuous. It’s like, oh, who cares? But the moment that two people start speaking to that officer at the same time, they’ve actually committed a procedural violation. And it’s those sort of things that are pretty tiny, but it can undo a whole process when it gets to arbitration. Because an arbitrator is just a fact finder. It isn’t a whole lot of nuance often, and they are limited to the facts before them. Like, they don’t do wide, sweeping investigations. It’s not a courtroom. So we find a host of causes all across the country that are really bad in these police union contracts that almost guarantee officers won’t be held accountable. And we think about the use of force policies. The good news with them is that they are much more easy to change. In most places, the mayor or police chief actually has the power to change a use of force policy. And there are eight things that we track in use of force policies, and they’re all common sense. And so it’s like banning chokeholds, requiring a warning before shooting, requiring de-escalation, logging every time you point your gun at somebody, or threaten to point your gun at somebody. So these are like they are much easier to move things, but they are still hard to get enacted. So today, only 28 of the 100 largest police departments in the country even ban chokeholds. But we manage the only database about these in the country. And have been working with people associate the past two weeks to figure out how they changed them in their hometowns. 


[10:21] Andy Slavitt: There’s 28. Is that up from zero a few years ago? Are all of those new policies that have been implemented? And what’s been the best way to get these changes made? 


[10:32] DeRay Mckesson: We don’t really have the data about what happened before the 28 because we were the first people that ever did the 28. 


[10:39] Andy Slavitt: What were the methods to cut that progress? Was it public protest? Was it working with departments or the mayors? What’s the most effective way?


[10:46] DeRay Mckesson: 28 is the baseline. So we don’t really know what happened before that with any of these policies because we created the first database of them. But we know that in places since we started, so like Minneapolis is a great example. In 2016, activists pushed to get city leadership to enact a duty to intervene clause. And that’s how those other three officers got fired. Because in Minneapolis, it is policy that if you see another officer engage in misconduct, you must intervene. And that was really just lobbying the city council in Minneapolis, lobbying the mayor to change the rules. And they did it, which was really incredible. So that’s really the best way to do it is putting pressure on mayors and city council people. Because often they don’t stand up to the police department because the police chief will say, you know, you’ve never been an officer. You don’t know how hard this is. We have a job that’s unlike any job. And if you restrict our ability to do insert here, then you actually endanger our life and endanger public safety. And the reality is, is that that’s not true. So, you know, what we find is that in the places with the most restrictive use of force, officers are safer and communities are safer. And it makes sense, right, that using force is essentially getting in a fight with somebody, and the likelihood of getting harmed when you get in a fight with somebody, especially when guns are involved, is actually pretty high. But most of what the police are even called to do isn’t something that the average person thinks a gun should be involved in anyway.


[14:53] Andy Slavitt: DeRay, the first time you had me on your podcast, the first question you asked me was, explain the difference between Medicare and Medicaid, which I thought was a good question because it helped me realize there were some fundamental basics that people don’t understand. So I’m going to try to do the same to you because I hear a lot of mythology out there, and so much of it is wrong. And I think so many people know so much of it is wrong, but they don’t have the precise answer to why some of these things are wrong. So there are bad apples in every police force versus there is a systematic problem. What do you say, or what should someone say, or what should someone know when they hear someone say that this is just a bad apple? 


[15:45] DeRay Mckesson: A couple of things. The first is that all across the country, the outcomes have remained the same. So a bad apple, we would think that, you know, there’d be some dips because obviously shouldn’t be like bad apples in every batch, every time, consistently across time and place. But the data shows that this is actually a consistent problem. Same set of numbers, same racial disparities. So we have to think of this as systemic when the outcomes are literally the same over and over. That there’s actually something happening that is producing the people who keep killing people in ways like this. The second is I always want to zoom out and sort of like swap it for something that’s not a police department. So if I walked into a school and no kid could read, but all the teachers are really nice, I wouldn’t be like, you know what? They just like should be able to read, I guess they’re just dumb kids. I would probably be like, I don’t know what is going on in this building, but like something is off. This doesn’t mean that all the teachers are bad people. This doest mean that, like, we need to figure out something because the kids need to learn how to read. And that’s all we’re saying about police departments is that I don’t know what’s going on with the people. Like, I don’t know the people. So this is not about good people or bad people. This is about the outcomes that keep being produced, and the outcomes that keep being produced are so bad that something has to be done, and we need to figure that out. So that’s sort of like the way we think about this is not a bad apple, but a bad batch, because there’s something being produced over and over and over again that’s leading to the same results across time and place in a way that’s really consistent. 


[17:22] Andy Slavitt: When there is police misconduct, and particularly that results in the death of someone, particularly results of a death of a black person, the outcome that I think we seem to seldom hear is that justice was served in a satisfying way. What I think we’re used to hearing is some technicality, some version of the officer was under threat. Something in the chain of evidence is off. And so therefore, it plants doubts into the public’s mind as to, well, we didn’t see what was off camera, and he was really provoked and the officer felt like his life was in danger, etc. First of all, are those the right outcomes? Do I have that right or wrong? And secondly, what can you dispel about that narrative?


[18:16] DeRay Mckesson: So black people are three times more likely to be killed by the police in general. They’re also 1.3 times more likely to be unarmed than white people. So it is a complete myth. It’s like police propaganda of the armed person attacking the police is just not true. That is, the data doesn’t even bear that. We even have to go back and double-comb through the armed data, because if you remember Philando Castile in the Twin Cities is that he technically, according to the police, was armed. So when we look at the data, we’re like, well, yeah, he did have a gun. He had a license for that gun. Even if he didn’t have a license for the gun, he wasn’t using it in any threatening way. He told the police officer he had a gun and he still was shot dead. So the armed data is always really interesting because black people are just way more likely to be unarmed, every way we cut the data, a way more likely to be unarmed than white people when they’re in these encounters. It’s like police propaganda this idea of the armed black person, it’s just not true.


[19:10] Andy Slavitt: That’s very helpful. That’s so important that you’re keeping this data, because I think there’s so many people’s opinions that bear into their views here. If we can, let me turn to the protests. There are the protests that everybody loves, the “peaceful protest.” There is the protest that turns violent. There are protests that begin peacefully, and then the police come out with tear gas and other things or start making arrests, which you have experience with, needlessly. And then, of course, there are a bunch of other things that we’ve seen that have overtaken some of the protests here this last week. Can you give us a bit of a primer? Again, this is a more fundamental question. How do the protests get organized? How does one lead to another? What happens out there that changes the dynamics? 


[20:09] DeRay Mckesson: You know, just to, like, define the terms at the beginning is that we think about violence is harm against people, and property damage is harm against things. And when we think about the protests, what we see the majority of the people are frustrated by is property damage. And that makes sense to me. The frustration makes sense to me. But I’m always hesitant to call it violence because it’s not violence. The violence that caused anybody to be in the street in the first place was actually the violence of the police. And we have seen them be continually violent. So I have a friend who lost her eye in the protests a couple of days ago because she was shot with a rubber bullet in her eye. I think about so many other people who actually have two friends who were shot with rubber bullets, one in the eye, one in the cheek. 


[20:50] DeRay Mckesson: Both had to have deep medical attention to them so that they would live through the encounter. That’s violence. You know, that’s not what we’ve seen at all happen on behalf of the protesters. We’ve seen the exact opposite. We’ve seen protesters be in the street, be really thoughtful. And the police come in and kettle them, which is when you box them into a corner and then arrest everybody. Or tear-gassed them or threw flash bangs at them. So, like, I think we have to be really mindful of even the way we talk about these things. And the news certainly participates in it. But one of the good things is that, you know, in 2014, we were telling people the police really are just wild, like it wasn’t us. We didn’t do it. And people were like, yeah, you know, we like you, but, you know, we know how crazy things get. That’s really the tone that people would take. And I’m happy that, you know, the police are just out here arresting reporters, shooting, tear-gassing reporters. It’s like we told you that this wasn’t like a thing you had to do something to deserve. It was just like they will just attack you. And I’m actually happy that there’s so much footage and all these reporters are actually seeing it in real time because they are being targeted. And it’s sad that that is what it takes for the news to actually believe black people, for them to be victims, too. But it’s like it worked. And I remember when people like Don Lemon — I remember when Don got tear-gassed the first time. And he didn’t think that, like, the police would ever tear gas his van. And they did. So when I talk to people, it’s like go out, push, challenge. People ask me why are people in the street? It’s like we tried everything else. We e-mailed, we voted, we called, we testified. We did all those things. And you didn’t pay attention. We shut down the street and then all of a sudden it’s like, I think this is a real issue. So, you know, the next step has to be for there to be real courage from leaders. I don’t really know what’s going on in Minneapolis, why the mayor hasn’t just come out and said that they’re banning chokeholds tomorrow. That feels like a failure of leadership to me. But maybe there’s a backstory I don’t understand. But it’s like mayors and police chiefs can move on the policy front really quickly.


[22:48] Andy Slavitt: My understanding is they were banned in 1993 in Minneapolis. Is that wrong? 


[22:52] DeRay Mckesson: That is wrong. So the way the policy reads in Minneapolis is that it essentially says if somebody is actively resisting arrest, a chokehold can be used. So it uses some other language to say if you’re not actively resisting, then this isn’t a tactic. But it is really clear that, like, if somebody is actively resisting, then they can use chokeholds. So it is not banned. It’s the same sort of spirit that happened in New York City. The language actually says they’re banned, like it literally is, like these things are banned and then it is like chokeholds. And then on the next page, when you look at it, it says everything that was banned on the previous page can be deemed unbanned on a case-by-case basis by a committee of four police officers. You’re like well, that’s not really a ban, you know? I want to read the Minneapolis use force policy. It literally says it says “a conscious neck restraint,” which is what a chokehold is, “may be used against a subject who is actively resisting. The unconscious neck restraint show only be applied in the following circumstances. Neck restraint shall not be used against subjects who are passively resisting as defined by policy.” So they differentiate between a conscious neck restraint and an unconscious neck. So passively resisting means that you can’t be actively as you can. And conscious and unconscious is just like a chokehold versus a stranglehold. A chokehold is your Adam’s apple, a stranglehold as the muscles on the side of your neck. 


[24:25] Andy Slavitt: Thank you for explaining that. I bet a lot of people didn’t know that. I didn’t know that. 


[24:29] DeRay Mckesson: Absolutely. So what I anticipate the officer is going to say in Minneapolis is that there’s something we didn’t see, like the video doesn’t capture everything. You didn’t see him kick me, hit me, yell at me, spit at me. And that’s why I used the force that I used. And that’s not a violation of the policy. 


[24:46] Andy Slavitt: What do you think about these curfews? The idea that these governors, mayors are saying seven o’clock, eight, everybody in. Then we have license to say we warned you and here comes the tear gas and here come the rubber bullets.


[24:58] DeRay Mckesson: The curfews seem like a setup to me. I don’t know how you expect people like in Chicago, they got, what, 35 minutes to adhere to the curfew? You’re like, you know people can’t get home. Even if they wanted to, you know a lot of people just can’t get home that quick. So if the consequence of not adhering to the curfew is suddenly that everybody is able to be arrested, like, that’s not fair. And I think that what you saw was an immediate curfew put in. Then it was declared an unlawful protest, and then the police get really wild. And it’s like that can’t be the solution. That’s not a fair way to think about this stuff.


[25:30] Andy Slavitt: There is all this talk of other people potentially using these protests to their advantage. Antifa, right-wing organizations. 


[25:44] DeRay Mckesson: It’s not lost on me that there are people who benefit from what we think of as a race war. And also people who want to exploit the righteous anger that is in the streets. Not lost on me, especially in some cities around the country where there are a lot of white supremacists or people like that. But when I think about the first thing, I’m mindful that nobody would be in the streets if the police didn’t kill people. So that, like, the whole situation was avoidable. The second is that people in communities have always been really excellent about making sure that people don’t exploit what is started in a righteous way. And I don’t want it to get lost that like I think that in so many places, when we see it veering off and going in a different direction that’s not productive, people are really quick to intervene. That’s happened in Baltimore. It’s happened in Chicago. It’s happened in a lot of cities across the country. But we are mindful that people are trying to exploit this moment in ways that are unproductive and don’t serve any of the goals that we want. 


[26:38] Andy Slavitt: And not only that, but it feels like it aims to make the protesters look bad in the eyes of the public. Like they are doing something other than what their intent has been out there. At least it feels to me like that. Finally, President Trump came out of the White House yesterday in what most accurately describe as a photo op to show force. He had a call with the governors where he suggested, also yesterday, that they were weak and they need to dominate the streets and either said or implied that they should be making arrests and putting people away for a long period of time. He did not call for unity. He did not address the original sin, as you just pointed out. So I’m not going to ask if you thought that was a good idea or a bad idea. But I am going to ask you what happens, what’s the trickle-down that happens from something like that? Where does that leave us? And since you’ve got to run, I’m going to ask you to finish up with any other thoughts that you want to share that I didn’t ask you that need to be said.


[27:48] DeRay Mckesson: You know, none of us know what to make about Trump’s interaction in this moment. It’s like, is he really going to send in the military? I don’t know. Is he just doing this to posture? I think that we’re all sort of confused about what Trump is doing. And why was the chairman of the joint chief of staff there? Why was the attorney general out there with him? Why are the Republicans being wholly silent and just letting him do this? I think that I’m confused in a lot of ways. What I do know is that most of policing, the vast majority of policing, happens at the local level. This is mayors and governors. They are the biggest levers. 18,000 police departments are managed at the local level. Federal government manages three big police apparatuses. The biggest in the country is border patrol. We have ICE, and then we have the FBI. Other than that, federal government doesn’t really do a whole lot with local policing besides give them money. So I’m hoping that he’ll just fall back and let the states do what the states do. But again, I think that he’s trying to look strong for the election, to gear his base up, like to amp them up. And that is really scary. 


[28:48] DeRay Mckesson: I don’t know where we go from there. Like he is sort of the wild card. Even when I think about demands, or like how we get big wins around the police in this moment, he just is present in the space, which is so ridiculous. So, you know, I don’t know what to make of him. When I think about what I want to tell people is I think we can win. You know, when we think about the civil rights space, in the past 100 years, all the work that’s happened around civil rights, we’ve gotten a lot of good wins. The hard part is that we haven’t necessarily gotten great wins around the police. The police are sort of exactly who they used to be. And that is hard. But we’re in a moment now, we have more tools. We have the ability to connect with each other in ways that we never had. And I think that we can actually end police violence very soon. I think that we can get there in our lifetime. I don’t think this has to be a 200-year solution moving forward. The second is at the policy front — if you got a, the policy front is actually one of the easiest things that we can press. But the rewards are really great. We track these eight policies. If you go from zero of the policies to all eight policies, there’s a 72 percent reduction in police violence, which is really amazing. So these look simple. They are simple, but not small, is how we think about these. And it’s like everybody can understand them. We should be pressing our mayors, our city council people to enact them today. And the third is that this is explicitly about race. When we look at the data, black people are disproportionately killed every way that we cut it and all the data. In 2015, we used to do this analysis, but we stopped. But in 2015, there were 14 police departments that only killed black people. This is just about race. So we never want people to lose that. 


[30:21] Andy Slavitt: I can’t thank you enough for jumping on on a busy day with no sleep. 


[30:29] DeRay Mckesson: Cool. I love you guys. Woo!


[30:31] Andy Slavitt: We love you, too. All right, man. Well, that was so great of DeRay to come on the show. Thank you. He did this on two hours sleep, and I know how busy he is because in moments like this, he’s indispensable to so many. He referred to a few things that I will have up on our resource page, but I just want to make sure to mention for you, one is Campaign Zero has a push to clarify the eight things that are needed to demilitarize police. It’s #8cantwait, and the web address for that is And he also mentioned that DeRay has a campaign that I think everybody can engage in. And you can do that at Of course, following DeRay, if you don’t already, you can follow him @DeRay on Twitter. He is incredibly active. And as you can tell, if you’ve not interacted with him before, incredibly thoughtful, decent human being who was kind enough to take the time to walk us through everything going on that we needed to hear. 


[34:14] Andy Slavitt: The person that I’m going to talk to next in Segment 3 is Sinéad Burke. If you don’t know her, she is a fascinating and terrific person and voice. She is a disability activist. So we’re going to talk a little bit about the intersection of race activism and disability activism. And our original intent was to talk with her a little bit about the impact of Covid-19 on the disability community. We morphed that conversation a bit. We talked about that a little bit, but we also talked about a few other things. Sinéad has been on the cover of Vogue magazine. She gave an incredible TED talk. She has her own podcast on Lemonada called As Me with Sinéad. And I think you will love hearing from her. And I think it’s a great connection to the conversation with DeRay. Let’s give her a call. 


[35:15] Andy Slavitt: Hi, Sinéad. People just rave to me about you, Jess being at the very high end of that list. 

[35:23] Sinéad Burke: That’s because I pay them. Don’t believe a word that they say they’re all on enormous salaries from Sinéad, Inc.


[35:28] Andy Slavitt: I didn’t believe them. But I did watch your TED talk. And I thought that was super cool.


[35:34] Sinéad Burke: Thank you. It’s probably the most nerve wracking thing I ever did. 


[35:39] Andy Slavitt: Was that before or after the Covue cover?

[35:41] Sinéad Burke: Before. I did TED in 2017, and then Vogue was last year.


[35:46] Andy Slavitt: Did you ever in a billion years imagine that? 


[35:49] Sinéad Burke: No. Not in my entire life. I mean, I met Edward Enninful, who was recently appointed the editor in chief of British Vogue at the time out of fashion show. He sat beside me because he was running late and the seat beside me was empty. And I spent the entirety of the fashion show trying to come up with a speech by which I could accost Edward Enninful to introduce myself and tugged on the sleeve of his jacket at the end of it. I just told him how much I admired what he was doing in terms of diversity in fashion. I then became a contributing editor for the magazine and was included in their power list. And I remember walking down the street in Dublin, kind of around March or April time last year, and getting an email from those that said confidential. Can you take a phone call? Sure.


[36:33] Sinéad Burke: Like, what did I do now? Why am I in trouble? I remember standing in the doorway of just like this shop that had shut down and getting this phone call. And they told me that they were doing this new project with the September issue of Vogue. And there was going to 50 women on the cover and would I be one of them? And of course, I said yes, despite not knowing what really to say. And then they told me I had to keep it a secret. I couldn’t tell anybody. I was like, okay, great. That’s going to be the hardest thing I’ve ever had to do my entire life. 


[37:01] Andy Slavitt: It’s kind of like out of a movie.


[37:03] Sinéad Burke: Yeah. And I think in many ways, you know, it’s for me, the success of that moment wasn’t being able to be on the cover of Vogue, even though it is enormous for me personally and professionally. But I was that kid who asked for a copy of Vogue every year for my birthday. My birthday’s in September. And always wanted to see someone who looked like me, even when I wasn’t able to articulate that lack of representation. And now being able to be the vehicle by which other people see themselves in that magazine, even just once, and realize how long it’s taken us for a little person who is white, straight, cis-gendered, you know, poor and working class has moved to middle-class. And yet still, I was the first one ever, of any of the Vogue titles. And for me, success is now, how long does it take for a second person? 


[38:02] Andy Slavitt: Do you feel some burden with that representation?


[38:05] Sinéad Burke: I think it’s a necessary burden. For me, so much of the reason why I began to be involved in this work — and it was most definitely a choice. I think activism is a choice, it has to be. Your purpose is always to make yourself unemployable. You have to work until you’re no longer required and of service and have value because the world is fixed. The problems are solved. I’m not sure if that will happen in my lifetime. I really hope so. But I think if it was just focused on me, if the solution was just me, then that’s not sustainable. And it’s not fair. And for me, my responsibility, and what drives me, is making sure that I’m not the exception. But that everybody else collectively will get to be the rule.


[38:54] Andy Slavitt: How do you look at the United States right now, if you’re willing to say? How do you look at what we’re going through? And, you know, there are some problems that we’re mildly successful at wrestling with. And it seems like there’s some problems that we’ve just never, ever been able to put the focus on, care enough about. I’m not sure what the right diagnosis is. Racism, discrimination, ableism. I was born in 1966. I feel like at some level, my generation is done just as poor job as every generation before ours. 


[39:31] Sinéad Burke: I think as a European, and as somebody who lives in a country like Ireland, we look to America and to the United States, and we hope to follow in your example so often. I think, in disability, there is a real irony, because your legislation, the Americans with Disabilities Act, which celebrates a large anniversary this year, is still the most advanced piece of legislation as regards to disability rights. And that is both comforting, but also creates a disillusionment because it was never supposed to be, and it was never created with the intention that it would be an overwhelming solution to the challenges around civic rights and human rights that focused on disability. It was a starting point. And yet, 30 years after the creation of that legislation, there is still so much work to be done. If that’s the best we have internationally, how do you continue the fight in countries where it seems even more impossible to create change? I live in a politically neutral country, or so we say. And it’s interesting in terms of the differences around services that are provided for disabled people. What you often find in countries like in the United States, there is a greater allocation for accessibility, particularly for war veterans, for people who come home from war and are disabled by service to their country. We feel an obligation by which to provide accessibility for them because they’re disabled out of honor. Whereas people who are born disabled or who acquire a disability in a way that’s external to those situations, we don’t feel the same responsibility. Why is that? Do we feel that they’re less deserving of access, that because they became disability due to a genetic mutation or a condition that was instigated when they were born, it’s not our responsibility. Do we further create that barrier between us and them? 


[41:39] Sinéad Burke: And I think in this moment in which we are currently existing, that interaction between Covid-19 and what’s happening in the United States in relation to the protests of police brutality, particularly against black people. Now is the moment in which the conversation surrounding disability in the midst of those intersections has never been more important or essential. I think what we’ve heard around Europe and particularly coming from the U.K. is this notion that Covid-19 was this great equalizer, that it affected everybody. And that’s true, but it didn’t affect everybody equally. In Italy, in the U.K. and in so many countries, even in the United States. hospitals and medical practitioners were creating these lists, literally a pecking order of who deserves to be treated. And that wasn’t even because they didn’t have insurance or healthcare. It was because of how likely they were to survive. What they deemed to be a viable existence, it was eugenics in action. Why do we still talk to and about disabled people in that way? I think there is so much work to be done and this moment magnifies it even further. 


[42:50] Andy Slavitt: Yes. So what Sinéad is referring to, for those who didn’t follow it, I did for a variety of reasons very closely, is this notion that, well, we have to decide who’s going to get a ventilator if we don’t have enough ventilators. And there is this very logical sounding idea that has the underpinning of eugenics right in it called quality adjusted life years. Which is somebody making a decision, in effect, that someone’s life has more value than someone else’s life. And there was an op-ed in The New York Times, of all places, which said that even if you had someone on a ventilator in a hospital, if somebody else came in and was more deserving, i.e. the doctor believed they could have a better or longer life, that that person could be taken off of the ventilator, the first person, and the ventilator given to this other person. And a good friend of mine, Dennis Heaphy, who we’re going to have on the program upcoming has always been someone who I’ve counted on to call my attention to things that I don’t see as it reflects the disability community, because I don’t trust my own perspective. So I have to ask people all the time, because there’s so many things that I take for granted. And I have to listen to people tell me why I’m missing something important. And Dennis has always done that for me in this particular case. And so we came out with a statement and got to know quite an — the organization that I chair — got into quite a big fight with the people who authored that op-ed. And said that states cannot be making decisions that way. But this is the year 2020. And there was no bones about people saying someone’s more important than someone else. 


[44:52] Sinéad Burke: And it permeated into the most domestic of conversations. My dad is a little person like I am. I’m second generation. My brother and sisters are all average height. And at the beginning of the pandemic here in Ireland, I remember my dad saying — and telling us this story. And he said it so casually that you had to check yourself and really query what it was that he was saying. He said, if I get sick, if I get the Coronavirus, I want to get sick right now. I want to get sick in the first two weeks, because if I get sick now, I have a chance that they might heal me. I have a chance that they might find an accessible bed and a ventilator which I can use. But if it happens that I get sick in six weeks or eight weeks, and the hospitals become overwhelmed in the way in which they’re predicting, I won’t get treated. Or it’s less likely that I’ll get treated. And he said it without blinking. He said it without even offering a rationale, and left my brother and sisters and I just without words, you know, we could lose our dad. And thankfully, he is healthy and well. And he’s been cocooning for weeks and hasn’t seen another person except us for almost three months. But he believed that the medical system saw that his life was worth less. And how often are you told that before you start believing in yourself? 

[46:18] Andy Slavitt: Right. So he had had that reinforced. And, you know, it does bring us to this topic of intersectionality. We’ve been watching in the U.S. for the past week, people who have experienced enough of this message, black America, for so long. And it has inflicted such trauma that it’s being demonstrated in a way that I think is just overwhelming the country. And I think people understand it in different ways. And some people understand it very literally. Why are these people harming their communities? That doesn’t make sense. That’s not logical. And maybe you can just sort of reflect on what those messages do, and how you see that. And then as an advocate, how do you look at a situation like this, support a situation like this, being that it’s not in this particular case not happening to you, but you’ve been seeing it around you and experiencing it your whole life? I imagine.


[47:32] Sinéad Burke: My experience in my life is laced with so much privilege. And being able to spectate literally on what the United States and the black community is currently experiencing, is unquantifiable. I think what I’ve seen scrolling across my social media timelines is people, and particularly white people, asking questions like how did we get here? How did this happen so quickly? And it illustrates that they haven’t taken the time to educate themselves, to read up on the history, but to also realize that this hasn’t come about overnight. This is decades and centuries of exclusion, marginalization and oppression. This is, not to compare my dad’s experience of the hospital with black suffering, but if you were told that you are different and you are not enough and you are less enough times, systems and institutions begin to be designed around that. 


[48:40] Sinéad Burke: And from a fashion perspective, as somebody who works in the fashion industry, what we’ve seen is graffiti and tagging of a number of retail shops. And you see, again, particularly white people asking, well, what does looting solve, without ever asking the inverse question, what is the murder of innocent people solve? And when do we stop putting corporations or destruction before the lives of people? I think one of the things as a disabled person that I see from afar is the lack of conversation surrounding disability within this issue. The disability community has changed enormously within the last century. We have moved from the institutionalization of disabled people, though that still occurs in parts, particularly in the United States, to now when assimilation, where the environment is not designed for us. And disability has moved from a medical model to a social and a human rights model. But the disability community in and of itself is laced with privilege. And the people who get to speak most, and the irony that I’m very much aware of, is white, disabled people. And if you look at various different reports and statistics that come out of the United States, you know, there’s a report that says up to 50 percent of black people who are killed by the police in the United States have some form of disability. 


[50:05] Sinéad Burke: Their disability is erased in the narrative, or it’s used as a validator and a rationale for their murder. Or it’s used to instigate pity or inspiration to cultivate likes and virality on the Internet. But there’s never any questions about, why is it almost 50 percent? Where is the lack of education and empathy and diversity within the police force? Why does it have so much power and finance and resources in the first place? But looking through these issues with an intersectional lens is essential. And I’m so admiring of what you said, Andy, because we live in a biased world. We each have a prejudiced experience based on where we were born, how we were raised and what we’ve been exposed to. But so often we don’t challenge those biases. We don’t question the language and the ableism that’s inherent within ourselves. And we don’t follow black disabled activists online to reinforce or to challenge that education. And there is so much work that we need to do to dissolve that invisibility. And to be really explicit about the role that disability plays within this movement. 


[51:21] Andy Slavitt: I think that’s so profound. You know, I’m thinking about a couple of things as you were talking, one of which is one of the things that I noticed when I was running the Medicare and Medicaid programs is that there was a feeling in policy that was almost, when it came to dealing with disability issues, that I would describe as “we ought to do enough for people to not die. And then we should feel really good about that.”


[51:52] Andy Slavitt: So, of course, people should have to be treated. But when I had people come in and explain to me that, you know, I have a seven-year-old disabled son, I don’t just want him to not die. I want him to have a life that a seven-year-old boy should have. And that means that I need somebody to come over and play with him so I can take a shower. It means he needs to go to the playground. He needs other things that other kids can do on their own. And you’re not meeting your obligation to our society if all you’re saying is we can keep him alive in an institution, in a nursing home. Well, I don’t want that. And you wouldn’t want that if it was your child. 


[52:39] Sinéad Burke: I think it goes back to — there’s a phrase that I use all the time, and it’s who’s not in the room. So when we develop policy, when we create new approaches to medicine, and to design, are disabled people, just the clients and the target audience? Are they only considered as the people we need to provide service to and for? Or are they helping us shape that policy, are  we designing and creating with them? And so often we’re not. To give you a couple of examples, my background is in education. I’m an elementary school teacher. And for a short period of time, I taught in a school for disabled children, known as a special education school. Now, I don’t believe my needs or the needs of the disabled community are “special.” But that’s the language that we have within those spaces. And it was interesting, the entire school was accessible to me except one place. I had complete agency in the classroom when I was teaching my students, but I couldn’t make myself a cup of tea in the staff room because it was never considered that the teachers would be disabled. Why would they be? I mean, it was only the students who would be disabled. 


[53:48] Sinéad Burke: And the other example is that my parents founded Little People of Ireland when I was seven years old. And over the past two decades have created voluntarily this incredible community. And one of the things that always resonates and continues to percolate within me is the conversations that new parents have with me. They’ve just come out of a hospital. They’re pregnant with their baby. And the doctor has done a scan and diagnosed the fetus and the baby with dwarfism. How is that communicated? Most often a doctor will say something like, I’m so sorry to have to tell you, but your baby has dwarfism. Now, that is 30 seconds in a doctor’s life. They’ve probably read about achondroplasia, which is the condition that I have, and dwarfism once in a textbook whenever they were in medical school. But actually, those 30 seconds will stay with those parents forevermore, because automatically you have given them a mentality that their child is an other. And while their child is different and is disabled, there is no necessity by which to frame that with negativity. And what does a parent then do but go to the Internet and try to find some sort of inspiration? But the Internet is designed with an algorithm that will bring you to negativity first. And all of a sudden you begin to feel like you can’t cope and your child is not going to succeed. And that’s just from one conversation, because, again, in terms of the doctors, the disabled people that they interact with are patients, they’re not their peers. And this lack of diversity is intrinsic to all of the biases. And all of the disruption that we’re just continuing to see seep out of institutions. 


[55:33] Andy Slavitt: Right. Well, I’m glad you said that. And it made me feel good about one thing, which is I made a public recommendation in an op-ed to Joe Biden, which I have since said to his team, that the person who takes my job, should he win for president, be somebody with a disability. 40 million Americans with a disability, all taken care of by one agency that’s never been run by somebody with a disability. 


[55:57] Sinéad Burke: His disability policy is good, but it could be better. 


[56:00] Andy Slavitt: Well, the fact is, my dad, when I was a kid, worked on the Americans with Disabilities Act and it was the proudest thing he’d ever done. And he got sick later in life and we had push him in a wheelchair. And I remember all the things that I could see that I could never see before. All of the half a block I’d have to go out of the way to get him up on a curb. All of the things which were right there, smack in front of me, that I could have seen every day, they were there, but I didn’t see them. And now I can’t not see them because of that time. It was my dad. It was my dad. I didn’t want my dad to have one percent of his life which wasn’t as good or had to be disadvantaged to anybody else. And I’m ashamed to admit that it took an actual experience to give me that understanding. I, like everybody else, am the kind of person who thinks I have plenty of empathy. And, of course, that I am not the problem. It’s other people that are the problem. I am so squarely in that camp. And I actually can say it now because I feel like the biggest barrier is denial. The biggest barrier is not being able to square up to this and think that it’s someone else’s problem. Because you know in your heart that you’re good, you’re a good person. Doesn’t matter like how you behave or what you do, or if you go out of your way or if you’re active, or if you’re trying to change the world. Because if you know in your heart that you’re a good person, you could sleep well at night. And that got disrupted in me to some degree, at least to the point where I feel like this awareness is the first step. And I wish I knew what to do with it, Sinéad. But that’s that’s the truth. 


[57:51] Sinéad Burke: I think that awareness is something that we need to encourage in everybody. As you said, one in four Americans are disabled. But I think what we also need to realize is that, you know, you and I could leave our house and we could trip on the curb and we could break our leg. And we are momentarily disabled for whatever time it takes for that limb to heal. And we are living in a world where our population is increasingly aging. And by thinking about disability, particularly in terms of accessibility and design, we’re not just accommodating for “them,” whoever “them” might be, if you are part of the majority. But if you need a selfish reason by which to get this work done and in turn erase the disability community and the disabled experience, but doing this work is necessary for all of us, because we’re all going to require it and need it at some stage. That may be now and that may be later. 


[58:47] Andy Slavitt: Well, look, I think a great conclusion from our confrontation for me would be in the seats of power, in this next administration, finally having the people in the room. To hiring the people in the Supreme Court. To having the people in all of our courts, to having people who live the black experience, who have lived the disability experience, who’ve lived these experiences. It’s all in the word “we.” We try this. We try that. No, it’s not “we.” We’ve defined we very exclusionary. 


[59:19] Sinéad Burke: Yeah. And I think if you want to see good examples of best practices, the Obama administration had some brilliant disabled activists who worked within that administration, be it Rebecca Coakley, Leah Katz-Hernandez, Maria Town, extraordinary people who shaped policy internally to ensure that it was inclusive and accessible. And we need more of that. We need to look at disability through a myriad of different lenses, an entire new prism. But that is the value of having people in the room. 


[59:49] Andy Slavitt: That’s right. I’m pushing for Becca to be the next CMS administrator. I think she’d be fabulous. 


[59:55] Sinéad Burke: I think she should be president. 


[59:56] Andy Slavitt: There you go. I’m gonna tell Becca you said she should be president. 


[01:00:00] Sinéad Burke: Please do. She knows I’ve volunteered to be her chief of staff. I don’t have the skill set by which to be her chief of staff, but I can do that or be her stylist or the two together. 


[01:10:00] Andy Slavitt: I think that to make a good combo. 


[01:11:00] Sinéad Burke: We’d cause chaos, it’d be great. We wouldn’t be in the bunker. 


[01:01:19] Andy Slavitt: Well, this was fun. Thank you for doing this.


[01:01:23] Sinéad Burke: Thank you so much. I really appreciate it. And before I go, it would be remiss of me in this moment to not give to your listeners. I think some people and some voices who actually they need to listen to, particularly voices of color and black disabled people. So the people that I recommend who you should learn from are Imani Barbarin, Tinu, TwitchySpoonie on Twitter. Vilissa Thompson, who created #disabilitysowhite. Keah Brown. Make sure you’re scrolling through the timeline of #disabledblacktalk. And Alice Wong and Mia Mingus are two people that I learn a huge amount from, too. You should go follow those people and educate yourselves. And do and be better.


[01:01:09] Andy Slavitt: Well, we will put all of those in our show notes. The only one of the people you mentioned that I know personally is Alice. She’s amazing. 


[01:01:42] Andy Slavitt: That was great. Thank you. 


[01:01:49] Sinéad Burke: Thank you so much. 


[01:01:52] Andy Slavitt: Wow, Zach, that was great hearing from Sinéad on top of DeRay. Both incredible activists, both people who inspire me to try to do better, and to understand how to think about things that I don’t get to see everyday. And they’ve both been incredibly generous. DeRay, particularly over the years, has been someone who I’ve been able to call on to understand the criminal justice system, the impact of racism and things that he’s been very patient in explaining to me. Hopefully you enjoyed that. That was our 10th episode. As you may know, we do a mini-episode every week, and then a main episode. Next week, we got two more coming up. Our mini episode is with Leana Wen next Monday.


[01:02:39] Andy Slavitt: And Leana is a great public health official. She’s all over TV. We’re going to be back to talking about Covid-19. But we’ll continue to talk about how the issues that we’re seeing in front of us now ,and particularly the issues of race, really are public health issues as well. And then Wednesday, our plan is to talk to former Education Secretary Arne Duncan, who served along with me in the Obama administration. And we’re at the request of many, going to talk about all of the big questions about schools and whether schools should be reopening, will be reopening, can be reopened, and all those things. Until then, I hope everybody has a great and peaceful and meaningful week.


[01:03:29] Andy Slavitt: In the Bubble is a production of Lemonada Media. Niccole Galteland is our producer and Ivan Kuraev is our editor. Music is by Dan Molad and Oliver Hill. Zach Slavitt is our co-producer and my co-host. You can find out more about our show on social media @LemonadaMedia. And you can find me on social media at @ASlavitt on Twitter, @AndySlavitt on Instagram. If you liked what you heard today, tell your family and friends, but tell them at a distance. For now, stay safe. Share some joy. We’ll get through this together. And #StayHome.


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