Not Going Quietly (with Ady Barkan)

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Julián and Sawyer marvel at Trump’s public admission of trying to use Mike Pence to help overturn the 2020 election results and comment extensively on President Biden’s quest to place a Black female judge on the US Supreme Court. They also sit down with healthcare advocate and ALS patient Ady Barkan to talk about the nation’s troubled healthcare system and his new documentary ‘Not Going Quietly.’

Follow Ady online at @AdyBarkan.

Keep up with Julián on Twitter at @JulianCastro and Instagram at @JulianCastroTX. Sawyer can be found on Twitter and Instagram at @SawyerHackett. And stay up to date with us on Twitter, Facebook, and Instagram at @LemonadaMedia.

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Ady Barkan, Julian Castro, Pres. Joe Biden, Sawyer Hackett

Julian Castro  00:13

Hey there. I’m Julian Castro.

Julian Castro 

And welcome to OUR AMERICA, where we tackle some of the week’s leading political headlines impacting your community. This week we chat with renowned healthcare activist and the subject of the new documentary Not Going Quietly. Ady Barkan about the state of healthcare under a Biden presidency. And we’re also going to discuss Trump’s visit to Texas over the weekend, where he suggested that Mike Pence could have overturned the election. But first let’s talk about Supreme Court Justice Stephen Breyer retirement and the continued push by Democrats to have him replaced with a Black female judge. Sawyer, what’s happening on that front?

Sawyer Hackett

And I’m Sawyer Hackett.

Sawyer Hackett 

That’s right late last week, Justice Stephen Breyer announced that he’s going to retire from the Supreme Court after 28 years on the bench. His retirement comes after this month-long campaign by Democrats and progressives urging him to retire to ensure like-minded justice can replace him and tease up a confirmation battle for President Biden just at the start of the midterm year. So while Breyers retirement won’t necessarily change the ideological balance of the court, it does give President Biden the chance to fill the seat with a much younger, you know, more progressive justice who could serve for decades. folks remember that on the campaign trail, President Biden committed to nominating a Black woman to serve on the court if there was ever a vacancy. Speaking on Thursday, President Biden reiterated his promise in a ceremony honoring Justice Breyer, let’s take a listen.

Pres. Joe Biden

Choosing someone to sit in the Supreme Court, I believe is one of the most serious constitutional responsibility a president has, our process is going to be rigorous. I will select the nominee worthy of justice Breyer’s legacy of excellence and decency. All I’ve been studying candidates backgrounds and writings, I’ve made no decision except one, the person I will nominate will be some of the extraordinary qualifications, character, experience and integrity. And that person will be the first Black woman ever nominated to the United States Supreme Court. It’s long overdue in mind. I made that commitment during the campaign for president, I will keep that commitment.

Sawyer Hackett  02:30

Biden also said during the ceremony that he expects to choose a nominee before the end of February, but a number of names have already surfaced on the shortlist. It’s unclear whether Republicans will mount any sort of serious opposition to the confirmation, Biden will almost certainly nominate somebody who can get the 50 votes from Democrats needed to confirm the nominee. And we’ll probably try and pick up one or two Republicans as well. But Republicans have already sort of shown their hand and their strategy, they’re going to try and paint, you know, whoever this nominee is as being a radical liberal or being beholden to the left. But you know, it seems like all around people are generally pretty happy with this news about the retirement and the chance to have this confirmation battle heading into a midterm year. So Julian, we finally got some good news. This is a big deal. Big deal for the Biden presidency, big deal for the Supreme Court. What did you make of this announcement?

Julian Castro

I mean, to begin with, I was glad with Justice Breyers timing. There were a lot of folks were hoping that he would make this announcement in time for President Biden to successfully appoint his successor. All of us remember what happened with Merrick Garland. The hypocrisy of Mitch McConnell and his Republican Senate buddies in stiff arming Merrick Garland running out the clock, then Donald Trump gets elected. And then right before the 2020 election in record time, they appoint Amy Coney Barrett to the Supreme Court. So, you know, the danger here was that if in January of next year, Republicans control the Senate, then it’s night and day, trying to get an appointment through that Mitch McConnell lead Senate, who knows? You know, I was happy about Biden’s commitment during the campaign to take the historic step of appointing the first Black female United States Supreme Court justice. That’s a big deal, because it would be a first, it would be groundbreaking. It’s long overdue. And maybe most importantly, and this goes to, you know, hypocritical criticism that Republicans are aiming at this choice of Biden’s, there are many eminently qualified Black women who could fill this role. There are a number of leading candidates if you believe you know, the write ups out there and all the folks who do the parlor game of looking at thinking through jockeying on who’s going to be the next Supreme Court justice. I mean, you’re talking about people who have served on appellate courts, are serving or have served on district courts at the federal level, people who have been law professors, you’re talking about folks who have distinguished themselves through their education that went to excellent schools.

Julian Castro

I mean, you could just match up the credentials of any of Trumps picks or any of the other Supreme Court justices. And the pool of Black women from whom Biden could choose to appoint, their credentials would match up, and in some cases, exceed most of the people that are serving on the Supreme Court. Let’s just take one example. You know, maybe the leading candidate is a judge name Ketanji Brown Jackson . She is currently serving on the DC Court of Appeals, which is an appellate federal court, that’s considered to be the most prestigious Federal Court along with the Second Circuit, which is the court basically out of New York, the appellate court. She recently was appointed to that court last year, she served from 2013 to 2021, as a federal district court, went to Harvard, went to Harvard Law School, she actually clerked for Justice Breyer. And so she has that experience. She was also a public defender. Remember, Biden made a big point out of saying we want to have a diversity of experience here, because you have this tendency to have judges appointed to the federal benches who have a lot of corporate experience, they’ve worked at these big law firms, you know, they have a certain point of view, a lot of prosecutors as well, but you didn’t have as many public defenders. And so she served as a public, Federal Public Defender, right. I think that’s a great background, invaluable experience. And that’s just one example. Um, you find many of these examples. So the idea that some have brought up like, Mississippi Senator Roger Wicker, that somehow this is an affirmative action pick, and it’s just meeting a quota and this person won’t be qualified. I mean, that’s bullshit. You have, what’s been happening is, really, there’s a bottleneck of these folks, because they haven’t gotten the opportunity. Haven’t been appointed as much as they should have been in the past. And Trump was a great example of that, I think something like, you know, more than 85% of his appointments to the federal bench. We’re not persons of color.

Sawyer Hackett  07:52

Yeah, I mean, I mean, it’s interesting, because I think that saying it’s an affirmative action pick or that this is a political choice. They’re essentially just saying the quiet part out loud, which is that they don’t believe that there’s a single black woman in the United States who is qualified enough to be supreme court justice. You know, never mind the fact that Trump appointed you know, Justice Cavanaugh not too long ago, a man who credibly accused of sexual assault by multiple women. But you’re right. I mean, this is this would be historic choice for so many reasons. There’s only been two African American justices in American history, Thurgood Marshall and Clarence Thomas, and only one woman of color, Justice Sonia Sotomayor. And you know, when Biden took office, I read that only five of the nearly 300 Sitting federal appellate judges were black women, according to the Federal Judicial Center, and Biden has already doubled that number, placing five more on the bench. He obviously, you know, needs to nominate somebody who’s on the younger side, somebody who’s experienced and somebody who can, you know, get the support of every single Democrat in the Senate to make sure that they’re confirmed. But you’re right, you know, pretty much virtually every list of potential names that have come out has included DC Circuit Judge Ketanji Brown Jackson, who, by the way, also had the support of Senator Lindsey Graham, Senator Susan Collins and Senator Lisa Murkowski when she was confirmed recently. So I think that she’s an interesting choice not only because she’s a favorite among, you know, criminal justice reformers, former public defender has recently been confirmed, including with by, you know, with Republican support, that seems like a Grand Slam choice for potential Supreme Court nominee. There’s also California Supreme Court Justice Leondra Krueger, who is also you know, very young 45 years old top DOJ lawyer, acting Principal Deputy Solicitor General at the DOJ, the highest-ranking Supreme Court advocate in federal government. She’s much more of a moderate sort of incrementalist type pick, but you know, would be historic in her own right.

Julian Castro  09:52

We’ll see you know how long this is going to take. They only took what like a few weeks a month or something for Amy Coney Barrett and at least the talk. The other talk out there among Democrats has been well, these guys set a new blueprint for how it can be done, how quickly it can be done. Now, you know, admittedly it does, it probably doesn’t need to be done that quickly, as long as you have the support in the United States Senate, then again, you never know what happens in the Senate, that if there’s something that Joe Biden is expert in, its Federal Judicial Appointments, as senator, he served on the Judiciary Committee for more than three decades. And so every federal judicial appointment from district court judges, to Supreme Court judges had to come through him in that committee. And because of that, I have no doubt that this is something he has a handle on his administration, has a handle on and they’re going to be able to make a great appointment. I think with relative ease, somebody that’s gonna make everybody you know, everybody who’s I think open minded and fair, very proud.

Sawyer Hackett

It seems that Breyer is at least acknowledging that, that he wants somebody who’s like-minded justice to fill his vacancy when he steps down, and that he feels more confident stepping down now than trying to potentially hold out for, you know, another four-year term for President Biden or another Democrat. It’s a smart move to step down now to get this done to make sure that his legacy is protected in that court. And also, you know, what I think this sets up is interesting is there’s still this legal battle over the issue of abortion. And if President Biden nominates a Black woman, you’re going to have a court where three women are going to be dissenting on an abortion case, where the Conservatives on the court are trying to dismantle the rights to reproductive care. I think it’s interesting political dynamic that I think the Biden administration is keen on making sure that it’s, it’s a woman, and especially a Black woman who, you know, obviously are underrepresented in the courts right now.

Julian Castro  12:07

Yeah, this appointee will likely have the opportunity to serve for three decades or so. It’s a six to three court right now, six conservative justices, three liberal justices. And it will remain that way, you know, even after this appointment, because Breyer was firmly on the liberal end of it. But still, I mean, you’re adding somebody who’s going to be there a long time, and you never know how many appointments come up during a president’s term. I mean, Donald Trump, who was a one term president, got three Supreme Court appointments. This also, I think, puts a spotlight on reforms that should be considered in the future for the Supreme Court, whether it’s removing that lifetime appointment status, people have talked about more justices on the court, or figuring out other ways to reform it, because Mitch McConnell and his buddies in the Senate have constantly tried to game the system to stack that court with these right-wing ideologues. And we may unfortunately see the consequence of that when they take up Roe v. Wade, same thing on the affirmative action, they’re going to take a case related to Harvard’s affirmative action policy, all of these precedents that had been set, one of those in 1973, and Roe and the other one in 1978, and Bakke, the Bakke legal decision, perhaps, overturned, just like that, because over the last few years, they were able to remake the court into this right wing ideologues dream, I think there should be more stability. And in fact, this whole Supreme Court it you know, it’s supposed to be based on starry decisis or respect for precedent. They’re turning that over completely, and just going to wipe away decades and decades, generations of precedent because they feel like it and at the same time claim, in the same breath, that they’re not being political. They’re not being partisan. They’re not being ideological; they just consider these legal arguments. They consider the Constitution and you know, what the Founders intended. And I mean, come on.

Sawyer Hackett  14:24

Yeah, you’re totally right. I mean, I think a lot of people have sort of lost faith in the Supreme Court, Susan Collins, went on one of the Sunday shows and said that Biden was being political by picking a Black woman after making that commitment during the campaign trail, but that because he made that commitment as a candidate that this was a political decision. I mean, does anybody think that the Supreme Court is not a political institution anymore? I mean, this is a court that has shown no willingness to protect precedent. And also by the way, Susan Collins, you’re the one who casted that deciding vote for Justice Cavanaugh for justice Gorsuch and For Justice Amy Coney Barrett, and look what they’ve done to the precedent of Roe v. Wade. I mean, she has been had completely she was completely conned in those confirmation battles. And now she’s talking about the Supreme Court being political. It’s just ironic.

Julian Castro 

Well, and is many folks have pointed out. Yeah, I mean, like Biden’s not the first candidate to do that, and then follow through as President, Reagan promised when he was running in 1980, that he would appoint the first female justice. And then he did that in 1981, when he appointed Justice Sandra Day O’Connor. And so this is nothing new. And Collins and senators like her, some a few still consider themselves like, you know, Reagan Republicans, people, I’m sure some people may be criticized Reagan, but I don’t think that all of these Republicans back then were criticizing Ronald Reagan, the way that they’re criticizing Joe Biden, think one of the things that’s different, maybe the main thing that’s different now is, this is a Black woman. And people like Roger Wicker, are playing to their base in Mississippi, and they’re playing the race card, exactly what they always accuse others of doing. I mean, they’re doing the same thing they’ve been doing for generations of playing this race card.

Sawyer Hackett  16:19

And we should just put it on the record right now that they’re going to try and paint whoever he names. And I’ve heard a number of people talk about this, all of these potential choices are, you know, they’re not radical. They’re not, you know, far to the left. They’re very experienced, knowledgeable people, and including, you know, could Circuit Judge Ketanji Brown Jackson, I mean, she’s considered, I think, probably the most aggressive on criminal justice reform. And she also sat on that panel for the house investigation into January 6, that essentially greenlit, you know, taking Trump’s records, so it she may be somewhat political choice, but she’s extremely capable and experienced and was confirmed by three Republicans for the seat that she currently holds. So I think this, this confirmation battle is just going to expose how hypocritical these Republicans are about the process. And I think it’s a battle that Joe Biden welcomes into midterm year after a couple, you know, battles that haven’t gone his way on policy on the hill. So I think it’s a good thing. It’s a good step.

Julian Castro 

Yeah. It does seem like something that’s gonna unite Democrats.

Sawyer Hackett 

Yep. And so over the weekend, we want to talk about Trump a little bit. So over the weekend, Trump visited your home state of Texas and gave a speech, a rally alongside your sitting governor, Governor Greg Abbott, in which, you know, he teased another run for the presidency, he lamented the treatment of the January six writers. And he even suggested that he could pardon the insurrectionists if he takes office. Later in the weekend on Sunday, I think it was he put out a statement saying, that ended by saying, Mike Pence, quote, could have overturned the election exclamation point. He is just openly saying out loud. What we have been talking about for months, you know, Democrats have called this a coup attempt. They call it an insurrection. How can this not be a coup, when the former president who tried to overturn the election is blatantly putting in writing that he wanted his vice president to overturn the results? I mean, it’s just astounding to hear it, to actually hear it come out of his mouth.

Julian Castro  18:33

If you read that statement, and you didn’t know what country that was coming from, you would think that that shit was coming from some country where their democracy had fallen apart, or they had a sham democracy. With this guy talking about overturning an election, that’s the first thing that came to my mind, like what in the hell, this guy is trying to turn our entire democracy into a joke, trying to turn our entire democracy into a vehicle for his control, you know, use it solely for his purposes. I want folks that think out there. If somebody had read you that statement 10 years ago, and said this is going to come from a former president, who’s going to run again for president, he would have said, come on, overturn an election. It is a measure of how far down the rabbit hole, how far off the rails, whatever analogy you want to use. So many people in this country have gone and how much this guy’s authoritarianism and craziness has been normalized, that people can even read that statement about the vice president overturning an election and think, okay, I mean, you pointed out that this is something that should have been on page A1 of the newspapers, it should have been leading cable news. But it’s become so normalized like, yeah, that’s who he is. That’s what he is. This guy is a danger to this democracy. That was an admission of that in that statement.

Sawyer Hackett  20:17

I mean, think about how breathlessly the political media covered Hillary Clinton’s emails. And, you know, the breach of confidential information and how she handled that. And you know, how disrespectful it was to the office and corrupt or whatever. I mean, this, I saw a New York Times, New York Times had it on their front page, I’ll give them credit. But I checked all the other major papers in the country, it was not top of the fold headline news. It was not breaking news on any of the cable networks this morning. I mean, this is a president admitting that he wanted his vice president to overturn the election result, and we’re talking about whether Biden’s gonna name Kamala Harris to the open Supreme Court seat. I mean, that is what they’re talking about on political media right now. It’s absurd. It’s absurd, because, of course, they know that Joe Biden’s never going to name Kamala Harris to be Supreme Court nominee, her office has essentially said that that’s not going to happen. And yet they want to talk about it, because they know that it fires up the left and the right. It’s clickbait nonsense. And instead of talking about how there’s an ongoing attempt, an ongoing coup from the former president, a president, who is, by all means considering running for President, again, they want to talk about the drama in DC. I mean, it’s just it’s the perfect example to me of how broken our political media system is today.

Julian Castro 

Well, and it’s also to me, it’s the fact that he can get away with that and still be so popular with that base and the Republican Party, in fact, I mean, he is the entirety of the damn base of the Republican Party. Just shows you how many people actually believe that, believe that the election was rigged, was stolen, should have been overturned in the first place. It’s ridiculous. You know, it’s wrong. It’s dangerous, but that represents today’s Republican Party.

Sawyer Hackett  22:09

Yeah, we talked a little bit about this with Mehdi, in our last episode about how, you know, the media just is not prepared to cover an anti-Democratic candidate for president. I mean, I think Trump has always been anti-democratic. But now it’s are they prepared to cover a fascist running for president? Are they prepared to cover a man who does not acknowledge his recent loss and is prepared to do everything possible to stay in office as long as possible? I mean, it’s just silly to me. I, I wanted to get your thoughts though. Did you happen to see Greg Abbott’s? Did you see him be announced to the stage? Did you see the videos from that?

Julian Castro 

I heard about I heard he got booed. I did watch video of him saying Donald J. Trump every two seconds to try and avoid getting more boos.

Sawyer Hackett 

You know, they announced his name on that stage. And it was a chorus of boos. It was so loud in his home state. Those are his constituents. He’s getting booed by.

Julian Castro 

Yeah, this was in Conroe, I think, right? Like this was in Conroe, Texas, which is outside of Houston.

Sawyer Hackett 

I saw somebody tweet that he said Donald Trump’s name 27 times in 6 minutes. He just used, just like Donald Trump. He didn’t just say Trump, he didn’t say President Trump, he say Donald J. Trump. 27 times.

Julian Castro

Go look that up on Twitter. Yeah, or wherever you can find that. I mean, this guy is a cartoon character for of a politician. He is like say whatever he needs to say, you know, finger to the wind, you know, no guts whatsoever, he’s totally empty in the fact that these folks boo him. I think, look, I’ve been saying it’s Sawyer, you know, I’ve been saying this for a long time, he could lose that primary. Nobody believes me. And now we’re getting a few weeks away. We’re a few weeks away from the election. I keep saying I’ve heard for years, these conservatives don’t like the guy, they don’t trust him. They don’t think he’s true to the MAGA base that he really believes it they think he’s a fake pretender. And you know what? He is and so I think that that could catch up with him in that March primary. Maybe he’s got a lot of money and all that stuff. We’ve talked about all that before but that moment where they booed his ass in his own home state now not only that his own home community because he came out of the Houston area if I remember right, he was like a practicing lawyer there forever. And then may have served as a judge around there. To me is just one more little, little demonstration along the way like red flag warning sign for his campaign, that on election night. Things may not go the way he wants, even if he wins, he may not win with the percentage that people think he’s gonna win with.

Sawyer Hackett 

Well, and if you look at everything that Abbott has done over the last couple years, whether it’s, you know, leading the charge to ban abortion in the state, whether it’s facilitating an audit of the 2020 election results, whether it’s his attacks on the public school curriculum, you know, removing the requirement that we have to teach about Martin Luther King in public schools in Texas, if you look at everything he’s done, I think a lot of people assumed a while back that it was because he has ambitions higher than governor of Texas, that they think that he wants to run for president one day. I think it’s more that he recognizes that he has no control whatsoever over this MAGA base that he is not liked, that they see right through him as a fraud. And, you know, like you said, a finger in the wind politician, that he’s just doing these things to protect his own job because he could lose it. And, you know, even if they don’t, even if he makes it through this primary, he still needs all of those people’s support to actually win that governor’s race in the general election. He still needs that base to show up. And if there’s 7% percent of Trump supporters in Texas who don’t show up in the general election, just because they just don’t like Abbott, and they voted for West or they voted for Don Hofheinz in the in the primary and they just say I can’t cast a ballot for Abbott. He could lose that general election to Beto O’Rourke for sure.

Julian Castro  26:24

Yeah, no, that’s true. Look, a poll over the weekend, on the governor’s race here in Texas, had Abbott a head by about 10 points, you know, mid 40s, for him, mid 30s, for Bethel, but there’s still a lot of time until November. And as I say, it’s not a guarantee that that he’s going to win that primary it had him blowing out, Hofheinz and West. So he may well get through it. But you’re right, if he doesn’t have an enthusiastic base, that can always cause problems for him down the road.

Sawyer Hackett 

Well, in the polls that are taking this early in a head-to-head between Beto and Abbott, they show you know, 10% to 15% of people who are undecided or you know, they’re supporting somebody else, or they’re just not sure whether they’re going to vote. If he spent the next however many months just continually appeasing the far right. MAGA base and just doing everything that they want, and kissing Donald Trump’s feet like he did over the weekend that those 10 to 15% of voters who aren’t sure might just say, yeah, screw this guy. Like, I’m not voting at all, when they previously have voted Republican or you know, I might actually pull the lever for Beto though this time around.

Julian Castro 

Yeah. Or if the grid goes down again, which is a very distinct possibility.

Sawyer Hackett 

We’re coming up on the anniversary of that in a week, I think of when, you know, 5 million Texans lost power. And still to this day, nothing has been done to actually fix the power grid. And so you know, Texas, I hear Texas has some cold weather coming this weekend getting down in 20 degrees.

Julian Castro  28:00

It is yeah, I mean, it’s been the usual Texas up and down over here. I think he got up to like 70 degrees yesterday in San Antonio. But we’re supposed to get quite a freeze in the days to come. And my hope is that this time, the Abbott administration is going to actually be half competent, because we saw what happened last year. And it really instead of spending all of his time at these Trump rallies, or on the campaign trail, he should be hunkering down making sure that the grid is working, but that’s not what he’s up to.

Sawyer Hackett 

Well, yeah, and I’ll just say one more point on it. I saw this this morning, the Texas Tribune had an article that said I think it was close to 190,000 Texas students across all Texas, high school, elementary school, middle school, students have tested positive for COVID and something like 60,000 teachers and staff have tested positive for COVID. And students are walking out in masks from Texas schools, protesting asking for more protections asking for better masks asking for ventilation asking for virtual learning. And Abbott is you know, at rallies with Trump in super spreader events with Trump kissing his feet and spreading this big lie. I mean, it’s just embarrassing. There’s just no leadership. There’s no competence. It’s just embarrassing for the governor of the second biggest state in the country.

Julian Castro 

Definitely an understatement and November can’t come soon enough in terms of hoping to get a new governor in place. Coming up next, we’ll be joined by healthcare activist Ady Barkan whose personal journey is featured in the new documentary, Not Going Quietly, which is available to stream now. Just a program note, because the advanced nature of his ALS diagnosis, Adi now communicates through a digital computer voice will ask him how he’s doing and what his fight looks like a year into the Biden presidency. After the break. Ady Barkan was working as an advocate for economic justice when he was diagnosed with Amyotrophic lateral sclerosis, commonly known as ALS, a neurological disease that deteriorates motor function, doctors told him that he only had three or four years to live. But he spent every day since then, on the frontlines of the fight for healthcare justice, his new documentary Not Going Quietly follows his path from his diagnosis, to becoming one of the most prominent healthcare advocates in the country, even being called, quote, the most powerful activist in America. The film is out now on streaming platforms. And I hope all of our listeners will check it out, after our conversation with Adi. Ady, thank you so much for joining us on our America. I want to jump right in, you know, I had a chance to visit your home a couple of years back when I was on the campaign trail, and you told me then, about your struggles to get your private health insurance to cover care, and equipment that would have helped you live. Can you tell us a little bit about those struggles with private insurance? And why so many people in our country have similar experiences?

Ady Barkan 

Wow, that was a great time. I appreciate all that you do for our nation and democracy. Thank you for speaking with me then, and for having me on your podcast today. You know, I knew our health care system was broken before my diagnosis. But having a serious illness clarify just how cruel our system really is. ALS is a progressive, degenerative disease that puts into perspective how time is the most valuable resource we have. But my wife, Rachel, and I wasted away so much of that early, precious time on the phone with our insurance company, navigating infuriating bureaucracies that are set up to deny us care. My insurance denied me a ventilator, stating that it was experimental. And then two weeks after that, they rejected access to an FDA approved ALS drug. I protested inside their headquarters and sued them and eventually secured 24-hour care. As too many of us know, even good health insurance, which I have, does not cover the cost of my care. And paying out of pocket would have left us bankrupt. My outcome is the exception. But the challenges we faced, fighting insurance companies for services we are rightfully owed are not. And as long as we operate a for profit system, as long as private insurers exist, these injustices will continue.

Sawyer Hackett  33:04

So Ady, you’ve talked a lot about how your resilience and activism following your diagnosis wouldn’t have been possible without the quality homecare that you received. As you know, there’s hundreds of millions of dollars in home care funding that’s sort of stuck in limbo right now under the Build Back Better bill, which senators mentioned in cinema holding up that package? What would you say to them about the importance of homecare if you could talk to them today?

Ady Barkan 

Home Care makes my beautiful and full life possible, but because it is prohibitively expensive, my reality of care is not available to all. When homecare is not accessible, patients are forced into nursing homes, dangerous institutions where seniors and disabled people are merely warehouse and isolated from their loved ones. Since the pandemic began, over 140,000 disabled people in nursing homes have died from the Coronavirus. Over the past few months, we have been a hero have collected hundreds of homecare stories from Democrats, Republicans and independents in Arizona and West Virginia, you will agree that we must expand home and community-based services. Polling is consistent with what we found, as 77% of all likely voters across the political spectrum are in favor of expanding these services. Not only would supporting funding be the morally right thing to do, but it would be the politically smart move for both Senators Manchin and Sinema.

Julian Castro  34:31

Before President Joe Biden was elected president, you actually had a conversation with him about health care and about social justice, in which he outlined a number of goals and made some commitments to you as well, if I remember, one year in to the Biden administration, how do you feel he’s lived up to those goals and commitments?

Ady Barkan 

In my conversation with then presidential candidate Joe Biden. He promised me that if the US discovered to vaccine first, he would commit to making sure that no patents block other countries from producing their own vaccines. He stood by that promise when the administration announced that it would support waiving the ability of companies to enforce their patents through the World Trade Organization, but Germany and Europe have not agreed, and so the vaccines remain bottled up and unavailable for too many billions of people. We need to make sure that vaccines are accessible and available to the rest of the world. We can do this by regulating Big Pharma. For example, the Moderna vaccine was created in partnership with the US National Institute of Allergy and Infectious Disease. 100% of the funding for their Coronavirus vaccine project came from American taxpayers and American taxpayers provided $6 billion in late-stage development funds. But now, Moderna continues to exacerbate vaccine heartache by refusing to share the technologies that the public helped create. To bring the issue of the unchecked pharmaceutical industry down to a domestic level. Prioritizing profits has led people in this country without lifesaving medication. It’s entirely within the federal government’s power to force pharmaceutical companies to bring down the cost of drugs. And that’s what the American people need our government to do. What about you? Do you feel like President Biden has lived up to his campaign promises?

Julian Castro  36:27

Yeah, I think that the jury is still out on some of them, I think for sure, there are a good number of campaign promises that the President has lived up to. And I think we’re seeing the fruits of that. Now. There are also some particularly on issues I think of things like immigration, police reform, and canceling student debt that he has yet to live up to that my hope is that sooner rather than later, he’s going to live up to. To you, what is the biggest tangible difference in how the Trump and Biden administrations have handled health care?

Ady Barkan 

The difference is that the Trump administration actively worked to rip health care away from Americans. They tried to repeal the Affordable Care Act, whereas the Biden administration has tried to expand eligibility and health insurance benefits.

Sawyer Hackett 

So, Ady, you are obviously active in advocacy work before your diagnosis. What inspired you to become an activist originally?

Ady Barkan 

I think what inspired me is probably a lot of what inspired you to go into activism, what inspired me to go into politics was trying to make a difference in people’s lives, especially people who struggle every day to get by, but who have the same big dreams that everybody else does. And, you know, speaking of that, of inspiration to go into politics and inspiration to go into activism, I mean, you have been an activist, as you said, for a number of years now. You’ve been described as one of the most powerful activists in our country. You’ve also been around a lot of politics and politicians. What do you see as the different roles or similar roles that activist play versus politicians?

Ady Barkan 

Most people primarily know me through my activism for Medicare for all and healthcare justice. But I was an activist well before I was diagnosed with ALS, I spent my 20s in the struggle for economic and racial justice, fighting against powerful special interests as a young lawyer in New York City. There, I helped a federal judge and a racist policing program of stop and frisk. But a few blocks away from the court. The Occupy Wall Street encampment was happening, and it inspired me. After my clerkship, I decided that being a courtroom attorney wasn’t for me. I wanted to be involved in organizing and movement building and politics. I co-authored the New York City paid sick days law, I led a national campaign to reform the Federal Reserve so that our economic policies would actually reflect and support the lives of everyday Americans. I have been very lucky to get to spend my career in movement politics. What inspired you to run for San Antonio city council, way back when?

Ady Barkan  39:29

The difference for me is that as an activist, I get to push from outside the system. In American law and politics, progress has often been driven by agitators outside of government, clamoring for reform, taking outrageous ideas and making them seem reasonable, and then seizing the reins of power, or at least grasping onto one rain for a few moments and pulling hard enough to turn the horse of state in a slightly different direction. My message to the younger generation of political activists and those who want to make positive change is that it is not enough to elect brilliant, compassionate leaders. The work of building a more just society must continue after the election is one. We must work every day to hold our elected representatives accountable to the transformative change they promised. And then Americans desperately need.

Julian Castro  40:20

Speaking of the next generation, Ady, you and your wife, Rachel, have a son and a daughter, Carl and Willow. What do you hope that they take away from your journey?

Ady Barkan 

As a father, I find myself thinking a lot about the kind of world my children will inherit. I want Carl and Willow to be proud of me. One of the best gifts I can leave behind as a father is a world that is more just, more equitable, and more loving. Of course, my children know me as their silly dad. But I also want them to be able to know who I am, and how their existence motivated me to fight for a better world until my last breath. I wrote my memoir and agreed to build the documentary so that I could create lasting mementos for them.

Ady Barkan 

Ady, as a parent, you know, speaking of your kids, how do you explain the complicated nature of our health care system to your kids, if you do at all, have you tried to shield them from some of the chaos of the experiences that you’ve been through?

Ady Barkan 

My kids are accustomed to my team of caregivers, and have beautiful relationships with many of them. They know that I require care, but they don’t know how difficult it was for me to secure this care, so that I could live at home and participate in their lives. Carl features prominently in my documentary, and you’ll see him grow to understand what I was in am fighting for. But for now, Carl and Willow just get to be joyful, silly kids, as kids should be. You have two kids as well. Right? Are they political?

Julian Castro

Yeah, I do. I have two kids. Sawyer is working on that hopefully soon. Maybe not so soon. I do, I have a son who just turned 7 and a daughter who is about to turn 13. And you know, both of them have been around politics since they were born. And I think they follow it; they understand some of it. But if I had to say right now, I don’t know that either one of them will actually go into it. Who knows that could be, you know, a good thing or not, but they follow it. They’ll watch some of it. And I think they understand some of it, which I’m proud of, because my mom tried to make sure that we understood it, too.

Sawyer Hackett  42:39

So, Ady, we talked a little bit about this before, but you were an activist, obviously before your diagnosis, fighting for economic and racial justice. Your diagnosis has obviously put the issue of healthcare front and center for you. But I’m sure you and your team at BIA hero, you know, stay active on a number of issues as well. What do you see as the most important fights in the advocacy and activism space right now?

Ady Barkan

Right now, my attention is focused on CalCare. A bill that would guarantee comprehensive, high quality health care to all California residents. On the day we are born. And on the day we die. And in so many days between. We all need medical care. And only a single payer system. We possess the scale and resources necessary to guarantee the care all of us need. All our struggles are interconnected. Healthcare justice is a disability justice issue, and economic and racial and gender justice issue.

Julian Castro 

Not going quietly is the title of the documentary about your life. It’s already been a huge success, and I know has uplifted and inspired so many people. It’s been nominated for various awards. For those folks who haven’t seen it yet. And if you haven’t seen it, y’all I hope that you do. It’s called Not Going Quietly. But for those who haven’t seen it, what do you hope that they’re going to take away from this film?

Ady Barkan  44:05

I hope people come away from the movie understanding that I’ve found great joy and meaning in the struggle for justice, even as ALS paralyzed my body. Being part of the movement has given me purpose, a community and the chance to nudge our society in the right direction. It’s allowed me to transcend my dying body and find personal liberation. And I honestly don’t think those things are just for me, that purpose, that opportunity to give back. Those are things available to everyone who strives to guarantee human dignity for all people. I hope that’s what those who watched the movie take away from it. And I hope they get involved as a result. I don’t think they’ll regret it.

Sawyer Hackett

So Ady, in keeping with the title of your documentary, not going quietly, what is the quiet part about our health care struggle that actually needs to be said out loud?

Ady Barkan 

The cruelty of our system is by design and it has failed all of us. Except, of course, the millionaire healthcare executives and lobbyists that profit off our suffering.

Julian Castro 

Ady, thank you, not only for joining us, but more importantly for the work you continue to do very powerfully each and every day, that makes a transformative difference in people’s lives. And I know when the health care system that you’ve been fighting for, when it does come to fruition one day, it will be in no small measure, because of your efforts. So thank you for that. I hope that folks will check out the documentary about your activism in life called not going quietly. Talk to you soon.

Ady Barkan 

Thank you for this conversation. And again, for all that you do. This was fun. And I hope we get to do this again, sometimes here.

Sawyer Hackett 

Before we go, we wanted to talk quickly about just one opportunity out there for folks. You know, recently the Biden administration announced their effort to send COVID test to every American in the country. You know, they have this website up now called, where you can get your free at home COVID-19 tests, every house is eligible for four free tests. I ordered mine the first day that they were announced. I already got mine. Julian, have you ordered yours?

Julian Castro  46:39

Yeah, same here. We ordered ours. We got ours a few days ago. I encourage folks to order theirs. What was that website again.

Sawyer Hackett 

it’s And of course, you know, these at home tests, they’re not perfect. If folks aren’t sure about their testing, they can go find an antigen test or find a PCR test at the same website. But these at home tests can really save you time and hassle of just making sure that you’re not COVID Positive before you go about your day or you come in contact with somebody who might be positive and just want to test yourself to be sure so it’s a huge resource available to folks. So definitely go check that out.

Julian Castro 

Don’t forget to leave us a voicemail sharing the stories you care about most right now at 833-453-6662. And don’t forget to subscribe to Lemonada Premium on Apple podcasts.

Sawyer Hackett 

We’ll see you next week.


OUR AMERICA is a Lemonada Media Original. Our Producer is Xorje Olivares, with executive producers Jessica Cordova Kramer, Stephanie Wittels Wachs and Julian Castro. Mix and scoring by Veronica Rodriguez. Music is by Xander Singh. Please help others find the show by rating and reviewing wherever you listen and follow us across all social platforms at @JulianCastro, at @Sawyer Hackett and at @LemonadaMedia. If you want more OUR AMERICA, subscribe to Lemonada Premium, only on Apple podcasts.

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