Nobody Should Believe Me - Introducing: At Liberty

Episode Date: May 22, 2025

Seventeen. That’s the number of states suing the US government to end federal protections for disabled individuals. 880 billion. That’s the amount of money that Congress is primed to cut from Medicaid funding. One in four. That’s the number of adults in the US who report having a disability. The math, well—it isn’t adding up. This week, W. Kamau Bell is joined by advocates Zoe Brennan-Krohn and Nicole Jorwic to discuss the current state of disability rights in the US, how we got here, and what a just, equitable system could look like—both for individuals needing care and their caregivers. Zoe Brennan-Krohn is Director of the ACLU’s Disability Rights Program and Nicole Jorwic is a disability rights activist and the Chief of Advocacy and Campaigns at Caring Across. At Liberty is a production of the ACLU, and hosted by W. Kamau Bell. This episode was executive produced by Jessica Herman Weitz and Gwen Schroeder for the ACLU, and W. Kamau Bell, Kelly Rafferty, PhD, and Melissa Hudson Bell, PhD for Who Knows Best Productions. It was recorded at Skyline Studios in Oakland, CA. At Liberty is edited and produced by Erica Getto and Myrriah Gossett for Good Get. *** Listen to At Liberty: https://podcasts.apple.com/us/podcast/at-liberty/id1396174920 Donate to the ACLU: http://www.aclu.org/action Learn more about your ad choices. Visit podcastchoices.com/adchoices

Hello, it's Andrea and we've got something special for you today. An episode from our friends at the ACLU's fantastic podcast at Liberty with W. Kamau Bell. And our very own superstar Mariah Gossett is also a producer on the show. Now we are big, big fans of the American Civil Liberties Union over here. We are actually partnering with them this month. With more than 1.1 million members, 500 staff attorneys, thousands of volunteer attorneys, and offices throughout the nation, the ACLU is at the forefront of fighting government abuse and defending the freedoms we all hold dear.

We love that. And something we care about very deeply over here is rights and protections for disabled folks, which is the subject of today's episode. The news is overwhelming right now, to put it mildly, so I really love At Liberty because it makes the issues accessible and importantly tells you what you can do about them. So go check out their other episodes wherever you listen to podcasts and while you're at it head over to aclu.org backslash action to donate and or volunteer with the ACLU. We will be back next week with our conversation with Dr. Mary Sanders about the rainy children's case and we are less than a month away from our season six premiere

and once again you will get all 8 episodes the day of launch if you subscribe on Patreon or Apple Podcasts. You'll also get access there to our twice monthly subscriber only show, Nobody Should Believe Me After Hours, where we are talking this month about the notorious Elizabeth Finch. And with that, here's At Liberty with W. Kamau Bell. Just a quick reminder that my new book, The Mother Next Door, Medicine, Deception, and Munchausen by Proxy, is on sale right now wherever books are sold. The book was an Amazon editor's pick for nonfiction, and the Seattle Times called it a riveting deep dive into

MBP. And if you are an audiobook lover and you like hearing my voice, which I'm assuming you do since you're listening here, you should know that I narrate the audiobook as well. If you have already read the book, which I know so many of you have, thank you so much. Please let me know your thoughts and questions at helloandnobodyshouldbelieveme.com and we will bring my co-author, Detective Mike Weber, on for a little book Q&A and post-retirement tell-all special. Thanks for your support.

Hey everyone, it's me, W. Kamau Bell, America's favorite W. Kamau Bell. Welcome back to the ACLU's podcast at Liberty, where I am the official host. Every episode, I'm asking the big questions on the big issues affecting our big country. And we're especially focusing on the hardest hit and most vulnerable communities. And of course, as always, I'm calling on the experts, experts from the ACLU and experts from beyond. And they're here to give us guidance. Last episode, we covered immigration rights, and I'm still thinking about a line from our guest Marybel Hernandez Rivera. Our love, she said, is never going to end.

My family, whether here or elsewhere, we're going to still be a family. Damn. As we all know, it's a tough time right now, but we have the power to love and care for each other. I really believe that. I got a wife, I got a mom, I got three kids. It is important to love and care for each other and give each other some grace. And today's episode is all about care.

We're talking about disability rights. We're here on Monday, March 10th, and as of today, here's the latest. Congress is primed to cut more than $880 billion in funding for Medicaid. So that's not like a big number, it's a big number. 17 states are suing the US government to end federal protections for disabled individuals. Meanwhile, more than one in four adults in the US report having a disability.

Are we really trying to leave behind a quarter of our country and their caregivers? Is that what we're trying to do? All right, let's take a breath. You've got this, and the ACLU's got you, and they've got a little bit of me, and I'll get a little bit of you, you get a little bit of me, we'll all get each other. Now, let's get into it. We have two incredible guests joining us today, and I don't use the word incredible lightly.

Zoe Brennan-Crohn is the director of the ACLU's Disability Rights Program. You may recognize her from At Liberty's episodes about Britney Spears and conservatorship. And Nicole Jorwick is the chief of advocacy and campaigns at Caring Across, an organization that is working to build real, helpful, thoughtful care systems. Thank you for joining me today.

I really appreciate it. It's great to be here. Glad to be here. Before we get started, let's just sort of at a basic level, introduce yourself and what it is you do in your life and your favorite flavor of muffin. Thanks. It's great to be here. I'm Zoe Brennan-Krone. I'm the director of the Disability Rights Program at the ACLU and I

Love a chocolate muffin Now you mean chocolate all the way through or chocolate chip? Okay, all right, that's with the chocolate chips to Nicole That's the double get all the sweetness in there. It's almost like a morning cupcake. I like that. Nicole Jorwick, I am the chief program officer for Caring Across Generations,

lifelong disability advocate, and I think my favorite would be probably Banana Nut. I hate to do this, Zoe, right off the bat, but Nicole gave the right answer. Oh, man. I sort of called balls and strikes right at the top. Wow, all right. I'm the underdog now.

I'm gonna try to win this podcast. I hate to start this in a contentious way, Zoe, but this is where we're at in America. Needless contention. Just kidding, I've had both of those. So let's talk about why this is the work you each choose to do, because I think as we talked about before we started, you know,

this is a conversation talking about disability in this country and people who live with disabilities. It's a conversation a lot of people don't have, even though they don't even understand how it touches their life or how it will eventually touch all of our lives. And so I just want to know personally and start with you, Zoe, why is this the work that you choose to do? Yeah, so I became a lawyer to do public interest work to be helpful in some way.

And the focus of my career has been on disability rights work. I'm a person with a disability myself. I have a lot of family members with disabilities, including family members and loved ones who rely on Medicaid. And I think that disability is often sidelined and not seen as the really core civil rights and civil liberties issue it is. And that's part of why I really love doing this work at the ACLU, to really integrate disability rights into the world of civil rights and civil liberties where it belongs.

Yeah, and for me, disability, I've been really lucky that disability has been a through-line thread in my life. I have a brother who has autism, he's 35, but actually before he was even born, his name's Chris, I'm sure I'll talk about him a lot because he's also my favorite Medicaid recipient. But before he was even born, I was in the first included school district many decades ago in the first classroom in our school district where we had people

with disabilities in our classroom, in our regular ed classroom. And so for me, the term disability integration and community integration is really something that I've been lucky to live at so many different phases of my life. And the term integration is based in the Latin root, Latin root integrari, which means to make whole.

And for me, every part of my existence wouldn't have been whole without my friends and relatives and colleagues with disabilities. Nicole, I'm not going to let that go by that just without highlighting. You just went full on Latin root. Like that's- Making my mom proud.

You know what I'm saying? No, that's- you're making somebody proud because that was you. You were like, I'm getting my Latin root knowledge in. So, and I just want to highlight that that was impressive. That was- and you did it easily. It was not even like a reach. highlight that was impressive. And you did it easily. It was not even like a reach. Good job. Thank you, thank you.

I always have to shout out Alice Wong, who's the person who really schooled me on disability and people who live with disability. She did it on television on my show, United Shades of America. And also has just been a mentor throughout my, since we've met about all these issues. Actually, the first time I met Alice, she was on my Denzel Washington podcast,

which I had to bring up because we were talking, me and my cohost, Kevin Avery, we were talking about there's a movie where Denzel Washington plays. And I'm going to get this wrong, but he plays, I think he's a quadriplegic confined to a bed and he plays a police officer and the name of the movie is escape me, which is going to make my Denzel fans crazy. Angelina Jolie is in it. Zoe, you can make up some points you lost with the muffin thing if you know.

I don't have it, I was just thinking the same thing. Yeah. The Bone Collector. The Bone Collector! The Bone Collector, yes, yes, okay. Points on the board. So, this is the first time the podcast has had points, so we'll see where this goes.

So on The Bone Collector, he plays a guy who's a quadriplegic, and he's also a cop, and it's sort of ostensibly the movie showing you that he can be a valuable contributing member of his team, even though he's a paraplegic and he's living with a disability. But Alice pointed out, he also must be a rich person living with a disability because of all the things he has

that most people who live with disabilities don't have, like a 24-hour aid and the level of equipment that is around him. And so she reached out independently and just said, I would love to come on the podcast and talk to you about that. And I was like, come on here and talk to us about it. And so through Denzel Washington,

another reason he's the greatest actor of all time period, we got to talk about how movies portray people living with disabilities. And so I think that, and confuse the portrayal. And so again, I always have to shout out Alice Wong, but the thing that I always, that I really remember from learning from her, and I grew up during this era, so you think I would know,

but in my mind, if somebody had said, when was the American with Disabilities Act instituted, I'd have been like, I don't know, the 1900s? Like the 20s? Like, you know, like the 1800s? It seems like we would have already been on top of that. And to find out that even though I lived through it, wasn't aware of it, that it was a Clinton era policy just really shows how slow America has been to understand this community.

Anything you want to say about that, I'm happy to. That's something that always sort of strikes me how little we know about this and how little we even know the history most of us. Yeah, I think there's a lot there. I think in terms of the history, the fact that it is so recent that disability rights has been enshrined in law is quite striking. There was the Rehabilitation Act of 1973 and then the ADA was actually signed by George Bush. It was a bipartisan bill. And I think that's also in this moment in time quite remarkable

that the ADA is and the Rehabilitation Act are unique frameworks within civil rights laws because they're not just about equality. They're not just saying you can't exclude people with disabilities. They're also saying you have to take steps to include people with disabilities. They're more like equity than equality, saying you have to build a ramp.

You have to make reasonable accommodations. People kind of know that phrase, but what that really means is just saying, oh, we treat everyone equally actually isn't always enough in the disability space. And I think that's, you know, just really interesting. And there's so much potential there. Yeah. And it isn't always enough. And also part of why it does seem like it's so recent in time. And unfortunately it is, is because for so long, when you think about the history

of the disability movement, I also am lucky to have learned a lot from people like Alice and others before me, is that people with disabilities were so often hidden, right? I'm not that old. I'm in my early 40s and I was in the first included school district, right? My brother is 35 and he was the first student

with autism included in our school district. And that's a very recent history and that's because so often for cultural reasons and just medical reasons and the medical industry saying that people should go into institutions until the 70s and 80s, That's what parents were being told. So, so often people with disabilities were this unseen, unheard, at home if they were anywhere

or warehouse in institutions. And that's part of why things like the ADA and Individuals with Disabilities Education Act really are relatively new in history because that integration piece is actually relatively new. And yeah, and thank you. I didn't realize it was George Bush. I don't want to look like I'm not giving Republicans credit. So that was just, again, shows my ignorance around these things.

So as somebody who's, I think, is learning and knows more than I think many people do because of the community I'm around with, Alice and Imani Barburn is another person. Yeah, still, like it's, I don't have access to all of it. But so let's just start at the basic what and we'll start with you Zoe and Nicole please fill in. What would you like people who don't engage with this stuff every day like you two do? What is the basics you would like people to know about disability in this country? Even down to like and I think this is important too and I've talked about this before like

the preferred terms, you know, I think right now we live in a time where there's a real push to like take away everybody's preferred use of language and everybody's preferred identifier. So I think, and this is a community that hasn't had that much access to that, so please, let's, we can start there, Zoe. I think the most basic thing that I want people to know about disability is that it is very widespread, somewhere around a quarter of the country are in the US are people with disabilities, and that it's a broad umbrella term.

So disability encompasses both in the law and in the community. We consider people with disabilities to be people with a really wide range of disabilities, people who have mobility disabilities, who might use wheelchairs, people who have sensory disabilities, who are blind, who are deaf, people with psychiatric disabilities or mental illnesses, people with developmental disabilities, people with chronic illnesses. There's a lot of people who may not think of themselves as people with disabilities, but would be protected under disability rights laws. And also age-related disabilities. And this is a huge part of our population that, again, doesn't always sort of self-identify as part

of our community. But disability is a fluid identity. It can happen to you if you're not already disabled. And not only it can happen to you, you hope it happens to you in that if you die having never had a disability, chances are you had a very short life. You hope that you live long enough to age into the kind of disabilities that come with living a long life.

And so I think it's very often viewed as this very other thing and this very tragic thing. And there are things that are difficult about living with a disability, and a lot of those are difficult because of how society sets up care and we're going to talk about all of that. Some of them are difficult intrinsic to the disability. There are not, you know, having a disability isn't all like puppies and rainbows necessarily. That's true. That's part of life too. But that it's just part of the neutral, natural, inevitable fabric of society. And in terms of language, I think people get very anxious talking about disability because they don't want to say the wrong thing.

And I think it very much comes from a good place. And I think the most basic sort of tips I'd share about language are that disability is not a bad word. It's that is a neutral thing to say. And it's actually a better thing to say than euphemisms, which is sometimes what people try to do to not say disability to say, well, you're specially abled or you're handy capable.

These are terms I've heard, people don't like those, disabled people do not like this sort of like, pretending it's something it's not. You have a disability, and by using these euphemisms, it's actually sort of entrenching that like, this is bad, so we have to use this funny euphemism.

It's just, you have a disability. And there's some difference in the community between whether you say like like a person with a disability or a disabled person or like a person with autism or an autistic person. And sort of my rule of thumb is that when I'm talking generally like here, I would kind of use those terms interchangeably,

person first, person with a disability, or disability first, disabled person. If you're talking about a specific individual, it's good to use the terms that they prefer, as you started with, Kamau. So if they say, I'm an autistic person, definitely don't tell them, oh no, no, you're a person with autism.

I'm sorry, let me correct you. Exactly. It's happening. Try to assume that people know what works for them. And also, you know, I think when you, as a general matter, if you ask questions, if you come from a place of curiosity and respect, people want to meet you where they are. We want to have more people in our world talking about our issues.

So I wouldn't want people to not talk about disability because they're afraid they're gonna do it wrong. I just want to point out for people who can't see this, who are listening to this, Nicole, you're nodding along. There's like a sort of a silent amen choir over here about a lot of the things that Zoe's saying. So yeah, it would be different if you were like looking like, no, no, no, everything she's saying wrong, but you're actually like,

that would be a different podcast. Extreme agreement. Yeah. Extreme agreement. That's the new name of it. Extreme agreement. So, yeah. So, Nicole, feel free to fill in any there or say or restate it or however you want to put. What are your thoughts on what you want people to know about the disability community and anything else?

Not a ton to add. Just really leaning in on special needs. I have an ear worm for it. If I hear it, it makes my skin crawl. Because there actually isn't anything special about being disabled. As Zoe said, it's a high percentage of the human experience for a lot of our community members. And the more that you get nervous about it or try to call it something else, the more it actually takes away from the reality of the existence of the person. This wouldn't be the ACLU without questions of legality. Because as you just said, Zoe, This wouldn't be the ACLU without questions of legality because as you just said Zoe, you know People may be may fit the definition of this of having a disability without even knowing it or and I think about myself sometimes Like let's see I got asthma

If I don't have my contacts and glasses on I can't really see much, you know, like and you know, I have high blood pressure I'm black. There's all these things I have and I'm joking about the last one But like but like the idea of like am I and not that I even need to know I'm black. There's all these things I have, and I'm joking about the last one, but like the idea of like, am I? And not that I even need to know I'm living my life, but it's also like, but maybe there's something I am not getting in my life because I don't define myself that way. So can we talk about the legal definition of disability?

Yeah, so in disability rights laws, disability is defined as a physical or mental impairment that substantially limits a major life activity. So it's a little clunky. Or having a history of that impairment or being treated as though you have a disability is one. If people perceive you as being disabled, even if you don't, and they discriminate against you,

that's also sort of a flavor of disability discrimination. But I think what's important about the definition is that it's not a list of conditions. It's not saying if you have this diagnosis, you're in. If you have that diagnosis, you're out. It's really about how you live in the world, which is what distinguishes disability as an identity from the medical terminology. A lot of people, probably most people with disabilities, have or could have some type of medical diagnosis. But that's not the question for protection under the law.

It's that there is some physical or mental impairment. That's the word in the law. People don't always love that terminology, that sort of what's wrong with you terminology, that limits something that's part of life. So asthma is an impairment that limits the major life activity of breathing. Like that's real. You're in. Welcome. If you want it. Yay! You get a prize.

I actually mean that. I actually do mean, yay! I like being accepted among new groups. I like having new communities. Yes, welcome. We're delighted to have you. Thank you. So it is really broad and it is inclusive of a lot of types of experiences and people, as I said, who wouldn't necessarily

think of themselves that way. As a lawyer, sometimes I talk to clients who I see in my lawyer hat, okay, what you're describing to me is a disability and you're protected by disability rights laws and there's some sort of discrimination. But that's sometimes a conversation you have to have with people to say, what you're telling me about your experiences, about your conditions, your illness, there are laws that protect you,

and that we want to use those laws to do X, Y, or Z. And that is a real shift in thinking for a lot of people. Some people come and they say, I'm a disabled person protected under the law. And some disabilities, you don't have the option of not seeing as a disability or not talking about because everyone tells you for your whole life that you're disabled.

So there's a real range of experience of whether there's a choice about like being out about being disabled or not. But it's a very broad definition. Let's talk about the care side of this, Nicole, and the side of this that people don't often think about. There is the person living with a disability, and depending upon that disability, there is the community around them that is also a part of that person's life and how they interact with the world and how we don't necessarily always have a good, as a government, I'm not trying to play real society, we don't have a good system set up for care.

Can we talk about the care side of this, Nicole? Yeah, we really don't. And the reality for the vast majority of disabled people is that they're relying on either an incredibly underpaid workforce or unpaid family caregivers. The direct care workforce that is paid for via Medicaid, which I know we're going to talk about in a little bit, is historically has been underpaid, predominantly a workforce made up of women,

predominantly women of color and immigrants, partially because of the makeup of the workforce, and also the makeup of the people that are receiving care. So disabled people and aging adults who, as we've already discussed, historically have not been part of policy conversations or sometimes part of society as a whole. You have a very underpaid workforce. And then you have over 105 million people who are providing some type of care. So that's over 40% of the country that's providing some type of care because of

the lack of government systems to do so. And that comes at a great financial costs per the national partnership on women and families, $1 trillion of unpaid care is provided to the economy because of the lack of systems in place. That's impacting young people. That's impacting disabled people, that's impacting disabled people who are also acting as caregivers. And that's also, you've kind of been hearing more

in this, especially during the camp, the presidential campaign about sandwich generation caregivers. Oftentimes you're thinking about parent of a young child and maybe somebody who's also helping to care for their older adults, but it takes on a lot more different looks. It can look like me who was caring for a brother,

an adult brother with disabilities and my aging grandparents. The longer the lifespan, the more sandwich generation caregivers that there are. And so it's not just a disability issue, it's a care issue when it comes to the systems that we need to create. Yeah, can we focus a little bit more because I think it's something I would imagine, and I feel this way,

that the people who are doing it for free almost wouldn't even understand that it's unpaid labor. Because it's also just part of it. You define it as like, this is what a good family member does Without understanding also, this is also work. It also taxes your resources, whether those are your financial resources or your physical resources. 100%, and I can say this, I'm coming out of a two week period

of doing actual direct care myself for different generations of my family. I have my grandma who has Parkinson's, I was down taking care of her, came directly to help my mom who had her knee replaced, and stayed with her for a few days, and then had my brother come and stay with my husband and I so that my mom could have a break. And let me tell you what, I did not have anything left to give.

And I'm somebody who knows what caregiving is. So I knew I could name it, but that doesn't mean that it isn't hard. But there's so many people that can't even name it. I have sat in so many conversations with journalists or with consultants that we're working with where they'll say, yeah, I'm not really a caregiver though. I just like schedule the appointments, take them to them, make sure that they have food. And I like watch the realization

that they realize that they're a caregiver. And while it doesn't have to be an identity that everybody takes on, it actually is really important that we recognize it and also name it because it is hard. And it doesn't have to be that way if we had systems that were in place to actually care so that care was a choice, right? If every disabled person and every aging adult

in this country had a system in place to get that home-based care that they need when they need it, then family members can just be filling in the gaps instead of being the actual system. All right. So I'm going to, here we go. I know we're going to get into the Medicaid thing soon or next, but I just want to say right now I'm handing you a magic wand so you can create the system that you would like to see of care in this country. And you can feel free if there's other countries

that do it better, which of course there are, or if there's just a thing that you, as a person who does this work, knows we could need even if it's not necessarily possible, what would the system look like? Well, right now, we know that 95% of disabled people wanna stay in their homes and communities, and 90% of older adults want to age in place.

That is not what the funding structure looks like. So if I could wave my magic wand, I would at least make sure that the funding for long-term care in this country matched what people want. There have been decades, including a lot of work from the National Political Advocacy Department at ACLU, trying to make sure that we're working on rebalancing, getting more money into the home and community. But even in the best performing states like the New Yorks and the Californias,

it's barely maybe 60% of the funding that's going to that. So that would be one way that I would change it. And I could go into the whys, but I won't go into it. But we but that would be one one way to quickly address the almost million people that are on waiting list for these services. Yeah, it's interesting because I'm at the age now of like me and all a lot of my friends are like basically into like, what do you what do you do with your parents? And I think one thing that has changed significantly in the history of this world,

and maybe just in this country specifically, but certainly his role, is that there was a time where all those things you said about taking care of people, you all would have lived in the same village. So at least you were going across the village to take care of somebody and not like getting on flights. And so I think that there's like,

my mom's 87 and she's the healthiest 87 I can imagine. She will Facebook friend you if you want her to. She's engaged, she's in a dance crew, but she's also 87. And you know, and so we're at the point now of like, okay, me and my wife are like, we need to find a house where she can be with us. You know, and we're at a level of privilege

where we can actually do that, although Oakland is still crazy expensive. But like, so we're not, we can't get the house we want, we have to get the house we would like and then fix the roof. But, so, but I just think, and then I talked to a friend of mine yesterday who was like, his parents do half time one place, half time another place, and he's like, it's time, we're sort of trying to slowly talk them into a retirement community, you know, because like, it's time. We're trying to slowly talk them into a retirement community.

Because the traveling across the country and the living by yourself where you're not near your community, it's not. And so then there's that we have to encourage them to move into a retirement center that you, of course, know is not the dream. It's just the reality. And again, these are people who are lucky enough to be able to make those choices.

Definitely. And long-term care is so expensive, especially facility-based care is exponentially more expensive than community-based care. But then you need to have the housing units and you need to have the direct care worker support. So all of that has to come together. And yes, I empathize with all of those scenarios.

It's something that I think, these are the conversations that are happening at every kitchen table, but it's unfortunately not what we're seeing reflected in the policy conversations in DC right now. Summer is coming. The days are getting longer and warmer even here in Seattle, except for when it's still rainy and gross, which it can truly be any time of year. And with the seasons changing, I want to save my money for summer fun, not my wireless bill. And if you too want to save your money for patio margaritas and vacations, you've got to ditch your overpriced wireless and hop on Mint Mobile for three months of premium

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their actual appointment openings. Choose the time slot that works for you and click to instantly book a visit. So no phone tech. So stop putting off those doctor's appointments and go to Zocdoc.com slash nobody to find an instantly book a top rated doctor today. That's Zocdoc.com slash nobody. Zocdoc.com slash nobody. You can find all of that info at the link in our show notes. And remember that supporting our sponsors is a great way to support the show. Yeah. And I just want to again is a great way to support the show. Yeah, and I just want to again highlight the fact that me and my friend are the lucky, privileged ones who get to sort of make some choices based on the fact that we're lucky enough and have enough resources to make these choices.

We're not people who are just like, what do we do? We can't we we we don't know. We have to move them into a place that's not big enough for us or we have to give away, you know what I mean? So I just want to be clear about that too. I do think it's striking what you're saying, Kamau, that even the best case scenario, the most privileged people in a lot of ways are making hard choices and none of them are great. Like there are, other than some like extraordinarily rich echelon of people, even people with a lot of privilege,

are having to make compromises or make choices that aren't great for them or aren't great for the aging or disabled family members. That is really typical, that it's hard for everyone. Of course, it gets harder and harder the less privilege you have but almost no one is sailing through these kinds of decisions and because it's just so much money. Thank you for yeah I think it's a lot and I feel lucky because my dad is 80 but he's sort of like he's newly remarried I'm like okay she'll handle it. I'm sort of like, he's your responsibility now. Let's dig into the thing that Medicaid is in the news more and more. And I really mean this.

What is it? What is Medicaid? I just want to get to the vet. And then what does it do now? What is it not doing that it needs to be doing? You know, we can get back into the what should it be doing, but just like, just give us your takes on Medicaid. Zoe, we'll start with you.

Sure. So Medicaid is a system funded by states in the federal government that provides a wide range of care to a wide range of people in this country. And it provides sort of regular medical care, of care to a wide range of people in this country. And it provides sort of regular medical care, like what you would think of for as, what insurance would provide. It can cover, you know, doctor's visits

and prescriptions and things like that. But it also covers a lot of, we've alluded to this already, covers long-term supports and services. So home and community-based services for people who have disabilities and rely on support workers to help them bathe or eat or get out of bed in the morning. That's covered by Medicaid. But it is much broader than people recognize in that it's low-income folks, it's people with

disabilities, it's aging adults. There's a lot of children. I think there's 40% of births are covered by Medicaid. A huge amount of care and support services in schools are covered by Medicaid. And one kind of, I don't know, quirk or something about Medicaid is that it's called different things in different states. So there's a lot of people who rely on Medicaid and don't know they rely on Medicaid because they rely on badger care, which is what they call it in Wisconsin, which is kind of cute. Oh, of course they do.

Right? Turquoise care in New Mexico, also kind of cute, kind of on brand. Oh, that's funny. And so people don't always know it. And part of that, I think, is really because of how much stigma there is about the term Medicaid that states don't want. They use these terms to make it not seem like what it is. And so there's a bunch of people who rely on Medicaid but don't realize it because of

all these different, because it's called something different in the state. They may politically be into a place where they're like, suddenly they're, I don't want Medicaid, but I like my turquoise hair because of the way politicians work. Yeah. Yeah. Yeah. Well, that's that is the unfortunate reality is that so much I get daily emails or phone calls from folks that will say like, Oh, I'm not on Medicaid. I'm on in California. I have Medi-Cal or IHHS. That is Medicaid. And like the biggest thing, and Medicaid has been my like bread and butter work for the entirety of my career outside of when I practiced law for a little while.

And the bane of my existence is the fact that nobody knows what it's called. Even the people that are benefiting from it. And that is, as Zoe said, it's because it is this federal program that is administered by the states. State and federal dollars go into it. And Medicaid historically hadn't necessarily pulled well, but actually now pulls almost as well as Medicare,

which I never thought I'd see the day, but I'm very happy. But I think it is because we have an understanding now, and there is more of an understanding of all of the different services that it covers. It is that essential health program for 72 million people. It does provide long-term care home and community-based services for 10 million disabled adults and even more older adults.

And it provides all half of all kids their healthcare. So it's this healthcare program, it's this long-term care program, it's also a workforce program. It pays the wages of direct care workers. Also one in four childcare workers rely on Medicaid for their own health insurance coverage. So it's this web.

Medicaid is a web of care that's really complicated. And I do, to Zoe's point, think sometimes that's by design. But frankly, I think that legislators are understanding that they might have f'ed around a little too much and they're about to find out because more people are... Is that the legal term? That's the legal term, yes. Because we are seeing the fact that they're proposing some of these big cuts and they're forgetting about the way that the disability community

rose up in 2017 when they proposed some of these same things. And we're gonna remind them. The FO part is coming. Yes. And that's Latin, I wanna be clear. Exactly, the Latin root, yes. So let's talk about the threats. And like you said, it's coming, I want to be clear. Exactly, the Latin root, yes. So let's talk about the threats.

And like you said, it's coming, well, it's here. Let's talk about the threats, the things they want to defund or cut. Let's talk about the breadth of what's going on there. I have the luck or, on luck of dealing with Congress most days. And so what is currently being proposed is almost $900 billion in cuts to the Medicaid program,

which, frankly, that's like how much the country spent, more than around how much they spend per year to cut the entire program. And what that would do is shift a ton of that responsibility, fiscal responsibility to the states. There is not a state in the country that has the amount of money to make up for any cut of that size in federal funding. And so ultimately what that would do is completely rock the

foundation of the Medicaid program. And right now, they've passed step one. So one thing that's really important to know is they're trying to use this really wonky budget reconciliation process. And the reason that they're doing that is they only need a simple majority. So they only need, in the Senate, 51 and a simple majority in the House.

And they've passed step one, which is a framework. So the house passed their version that does include that 880 billion in cuts. But for those of you who might not have been watching C-SPAN two weeks ago, they actually almost didn't because of Medicaid advocates, because people are being loud, because people understand

that they're gonna lose health insurance coverage, that their family member isn't gonna get those home and community-based services anymore, but we need to be louder because now they have these warring two different bills. There's a Senate version that doesn't have the cuts and a house version that does, but now they have to actually write it.

So President Trump and other people said, oh no no, or in Speaker Johnson are saying, no, no, we're not going to touch Medicaid. But the Congressional Budget Office, which is a nonpartisan, completely objective office of the government, said that there is no way to get to that $880 billion number without cutting Medicaid by at least 500 billion. So now they actually have to write it down. So they can't hide from it before the next vote. So we have a lot of chances to make them really scared

in the finding out phase of this fight. You sound like you're excited to make people scared. I am a little bit. No, well, let's also, are there advocates in Congress that you feel like are people who are on the right side of history on this one? There's luckily there's a lot. I mean, obviously there's a lot of outside advocacy groups, including the National Political Advocacy Department of ACLU, Caring Across Generations, Little Lobbyists, the Arc of

the United States, a lot of the AAPD, a lot of disability rights groups, but there's also a lot of legislators. And I will say I was very pleasantly surprised the day of that vote to have every Democratic member of the Senate sent a letter saying no Medicaid cuts. You had leader Jeffries in the House standing with every member saying no Medicaid cuts. You had even Jeffries in the House standing with every member saying, no, Medicaid cuts. You had even in the joint address that President Trump did to Congress last week,

you had some of the protests, and I'm using air quotes, protest signs that said, save Medicaid. Now, you know, but and then you also had Representative Green, who was the only member who stood up and one of the reasons he stood up and waved his cane as a proud disabled man was in protection of Medicaid. Who? I've seen that image, but you just really sort of highlighted it now with like a disabled man. I mean, I, you know, I feel like every old every black man gets a cane at some point, whether he needs it or not. But now I'm really understanding it. Yes, he is a disabled man who's saying no cuts

to protect his community. Yeah, okay, wow. Yeah. I didn't mean to interrupt. You were flowing, I just got excited about the green card. No, no, but that's the reality. And that's the same energy that came the last time that President Trump was in office in 2017.

They proposed cuts that frankly, almost were exactly the same size. It was around 900 billion that time. So they haven't learned their lesson. But at that time, and folks might remember the late Senator John McCain's thumbs down, which was when that terrible cut was saved, we were saved from that. And at that time, you had disabled people from different groups, including National AdapT, come and stage a die-in at Leader McConnell at the Times office. That is what you have, disabled advocates like folks like Alice Wong and folks like Amani and everybody else putting their bodies on the line, because this is literally a life-and-death issue for disabled people.

Disabled people who have fought for decades to get out of institutions. There are still institutions open in over 35 states. And that's where that that's the funding shift, the magic wand thing I want to do, getting that money out of those institutions and into the community. But that's what you're going to have to see. And that's what we know that that disability advocates and allies have lined up to fight against the Medicaid cuts this time around again. So one of the things that I just recently learned about Section 504, Zoe, can you educate me and anybody listening who doesn't know about Section 504?

Yeah, so Section 504 is the part of the Rehabilitation Act that is from 1973, that's kind of the prologue to, or the predecessor to the Americans with Disabilities Act. And so they have very similar protections and people sometimes refer to it as Section 504, which is as the Rehabilitation Act. They're sort of the same terms. And this is actually separate from Medicaid,

but is another attack on the disability community that is coming down the pike really simultaneously with the cuts to Medicaid. So Section 504, as I said, passed in 1973. The regulations kind of making it real were passed in 1977 as a result of a really extraordinary protest in San Francisco, which was the longest sit-in of a federal building in United States history. There were disabled protesters who sat in at this federal building in San Francisco for 25 days to force these regulations through that would make disability rights laws real. They were supported by the Black Panthers who came in and brought food and a lot of

other organizations. It was a real intersectional moment, I think, before people were calling these moments intersectional, but that's what it was. And so Section 504 requires non-discrimination in schools, in education, in hospitals, in medical care, in housing, in any entity that gets federal funding, which is a huge swath of entities. They are required to not discriminate and to be inclusive. And so it's, you know, a core, the core first disability rights law, civil rights law for folks with disabilities. And there is a lawsuit now threatening to, or attempting to have Section 504 of the Rehabilitation Act

found unconstitutional in its entirety, which is truly a radical and cruel approach. And I think both of these things, the Medicaid piece, I think it's important to emphasize how extreme these proposals are, that if you talk about the size of the cuts to Medicaid that are on the line here, this isn't like trimming around the edges.

It's not like, oh, people are going to get, you know, 39 hours of care instead of 40 hours of care services or something. These are radical cuts that are going to kill people that are going to force people into institutions that are going to really dramatically reshape how disabled people can live and work and play and live in their communities. And so both of those are examples of that threat. Yeah, I think the threats to 504 are really about protecting the rights of people

to be part of their communities in all the different ways that Zoe said. And then you pair that with cuts to Medicaid that actually funds the services to keep people part of their communities and on the job. A lot of Medicaid funding goes to job coaching and work supports for disabled people. So it's really when you think about the Trump administration continuing and the attacks on 504, and then the administration and congressional attacks on Medicaid, it's a real double whammy.

So just can you say, either one of you, about like what would happen if it's gone, what does that change about, you know, it says any place that gets federal funding, how would that affect somebody, a disabled person, who's in a hospital or in a federally funded school, how would that directly affect them? So it makes it, it weakens the protections that they have.

And I think it's important to know that we are not starting from the like, utopia of disability rights protections, right? It's not like everything's awesome now and then things are going to become bad. Like there's real problems with disability discrimination now and there were in the, you know, before Trump took office, like this, we have a long way to go. We know that there's, you know, extraordinary stigma and bias against people with disabilities and exclusion in all sorts of forms. And so taking away one of these key tools to protect against that discrimination would be a really big harm.

One of the things that the most recent regulation that came out and that this lawsuit is challenging is about the requirements of hospitals and medical providers. And one of the things it says is that medical providers can't make decisions about medical care or how to allocate resources based on stereotypes about disabled people's quality of life. And this is something that happens all the time,

that medical providers see a disabled patient and they think that person's life can't be worth living. And we saw this in the early days of COVID. This was very extreme. That when there were decisions about who would get ventilators and whether people with intellectual disabilities would be eligible for ventilators. You hear about it a lot that people, I've heard this story from a few people that they go into, people who use wheelchairs, will go into a hospital for pneumonia or something

totally treatable but serious and get pressured to sign a DNR. Like you don't really want to be alive, do you? And that is disability discrimination. And that is just an extraordinarily powerful thing to imagine happening to a person and like what that message is that their life can't be worth living. And so what this regulation said, that's, that's a kind of disability discrimination. And I think that is really important to think about like, how we understand the breadth of, of how disability discrimination can work. It's not just saying, I hate people in wheelchairs. And there just probably aren't that many people who would

say something like that. But you might have someone who says, Oh, you're in a wheelchair. You, your life must be terrible. And maybe they think the second part, but don't say it out loud. Sometimes they do say it out loud. Um, and there's just so far to go and can't be moving backwards on access to care, access to life in the community and non-discrimination protections. I can't help it in this, when you referenced this earlier, the idea of the disability community being intersectional before that was a word,

it's because the idea of like, I think sometimes, and you see this all the time, people talk about communities if they're all separate, and like the black community, the women community, the disability community, it's like, there's like a woman who's like, all of those are me, like those are all me. Those are not three separate communities. And I think that like when you compound the discrimination that women get, that black people get, and then

a disabled person in that one body, it's like then you really are a deficit of care in a place like a hospital just because of all the stereotypes attached to each one of your separate identities. The point of intersectionality also is important in that disability exists across society but not equally across society. Disability is disproportionately present in the most marginalized communities. In poor communities, low-income communities, BIPOC communities, there's less access to care, There's more environmental factors that cause certain kinds of disabilities. There's more, like less positive supports and therapeutic interventions. So it's not even just that everyone has multiple identities, but some identities cluster and poverty and marginalized racial identity and disability is one of those. Are one of those.

Yeah, that's for sure. I forgot. Yeah, there's the, it's. I didn't mean to be correcting you. I was just adding to it. No, no, no, you weren't. You weren't. I don't feel, first of all, you can correct me if you want to.

But I also don't feel, I just feel like, like sort of like, oh yeah, it just, there's just so much to consider, which is why it's important that we stand up for but I also don't feel, I just feel like, sort of like, oh yeah, there's just so much to consider, which is why it's important that we stand up for communities that we don't even perceive ourselves to be a part of, because it's touching someone around you, and also, it's gonna help lift the weight off you if you stand up for others, even if you don't see yourself as being directly in that community, so.

Absolutely. That was my, like, that's like the sound you make before you lift a heavy couch, That's what that sound was like. Like, okay, there's a lot of heavy lifting I gotta do. Let's dig into the, before I let you to go, which I really appreciate this again, the legal case, Texas versus Becerra. So that's the case that's trying to challenge,

trying to say that section 504 is unconstitutional and saying that the Rehabilitation Act shouldn't be in place and that people with disabilities shouldn't be entitled to protections under the Rehabilitation Act. And let me guess Texas is on the that's unconstitutional side. It sure is. Great guess. Yeah. OK, I just just taking a shot. Just taking a guess. Just taking a shot. Texas and 16 fellow states, the attorneys general are bringing this case and

saying that, yeah, that this the entirety of this law that's more than 50 years old, they're now saying, oh, well, we hadn't thought of this till now, but now we'd like to sue and ask a court to say that this, to strike down this 50 plus year old law, which is, even if you're not like, you know, sometimes lawyers can do weird stuff that you don't expect, but I'm a lawyer, that's a really weird thing to do as a lawyer, to wait 50 years and then bring a

lawsuit. Like that is not, that is not normal. And, uh, and because it's a sort of preposterous argument, but it's an argument that they are making. Although there has been really incredible community outrage from the disability community around this lawsuit. And there's a ton of overlap between the outrage around Medicaid and the outrage from the disability community around this lawsuit. And there's a ton of overlap between the outrage around Medicaid and the outrage around this lawsuit of folks saying, what are you doing? Protect Section 504, protect Medicaid, get out of this space.

And some of the attorneys general, they haven't backed off, but they've made press statements that suggest they've backed off, which is, I think, very duplicitous in that they're not removing their request to say invalidate disability rights laws, but they are realizing that there's a lot of political cost to being in this lawsuit and saying what they're saying. And so they're trying to have it both ways. And I think it's similar to what's happening with Medicaid of trying to both say we love Medicaid, but passing these bills that make giant cuts to Medicaid almost inevitable or not almost inevitable, make them completely inevitable. And I think both of these are indicative

of this realization among politicians that there's an extraordinary political cost to coming for disabled people. And we are very organized. We are loud. We're angry. Parents of disabled kids are just like a subset of this population that you just do not want to mess with. And here we are messing with them.

And here they are messing with them. And I think the pushback on both of these issues is and will continue to be really loud and hopefully make it just impossible for these really terrible plans to continue. And I can't help but bring up the fact is just because I think it's worth highlighting, even though I don't really have much to say about after that.

Is this also, it's also just worth noting that the governor of Texas is a person with a disability. You know, he suffered through an accident or that disability got through an accident. And you would think, that's all I'll say, you would think, dot, dot, dot, dot. Nicole, unless you want to add something to the dot dot dot? Well, internalized ableism is real. And there are a lot of people who don't want to think about themselves as a disabled person and then make really heinous policy decisions along those lines. But ultimately, that I think is the role and the goal of those of us that are fighting

against the Medicaid cuts and fighting against the attacks on 504 is that anybody at any point could become part of this community. And these are members of our community that we should be celebrating and supporting and not pushing back behind closed doors. Texas also does have the longest waiting list in the country and is the heaviest institutionalized per capita state in the country. So he's supporting a tax on 504 and also has an over a hundred thousand person waiting list for Medicaid home and community-based services.

And all of the Republican members of Congress in Texas would support gutting the program. Texas, okay. Come back Nicole, we'll do the Texas Podcast, the Texas edition, because I have so much to say. I was like, and also voting, and also voting suppression, and also reproductive rights. And also, even though you're a heavily Latino state, Mexican American state, you target immigration. Okay, anyway. Yeah, yeah. Lots to say about Texas.

We're wrapping this up. This is the, thank you for doing this. I really appreciate it. If listeners remember one thing from this conversation, what should it be? Starting with you, Nicole. That Medicaid might not be called Medicaid in your state, and you should know what it's called, and that's it.

Great. Disability and Medicaid in particular are core civil rights and civil liberties issues. And if our listeners of this podcast, folks who care about civil rights and civil liberties issues should be caring about acting on educating themselves on disability rights issues and on protecting Medicaid. This isn't something apart from civil rights. This is about the right to live in the community, to be part of the community, to work in the community, the right of care workers to provide that care and for disabled people to live in their communities and out of institutions.

And that's the foundational piece to be able to enjoy and exercise the rest of your civil rights. – If listeners, back to you, Nicole, if listeners do one thing based on what they heard here, what would you like them to do? – I would like them to reach out to their members of Congress and tell them to vote no on any bill that includes cuts to Medicaid. And even if you live in a state and are represented by all Democratic members who are currently standing, still make the calls and then make calls to your friends and family and make sure that they understand what Medicaid covers, who it supports, and that they should also make those same phone calls. So even if you live in a place like I do where your congressperson is Latifah Simon and she's

always on the right side of history, frustratingly so I never get to be mad at Latifah Simon, call her anyway. Absolutely. And yes, absolutely. Because they need to know that as deals are being made and side conversations are happening, that Medicaid can't be on the table in any way shape or form. Nice. Zoe's saying what would you say people should do? Basically the same thing. One way to do it is to go to ACLU.org slash save Medicaid

and that will give you a link that can connect you through to your member of Congress and your, whether it's the House or the Senate, depending on where the issue is right then, ACLU.org slash save Medicaid and have your voice heard. There's a lot of action and organizing by a lot of groups, including, as we've said, within the ACLU, the National Political Advocacy Department is really working hard on making these, the costs of cutting Medicaid clear to members of Congress and be part of that. What's giving you hope right now, Nicole? What's giving me hope right now is that I think that the disability rights community, including folks at the ACLU and other allied organizations, are much better organized than we were in 2017 at this time, which means we're going to be able to make

sure that the pressure is felt at every phase of this fight. And what's giving me hope is more of the aha moments that I'm seeing with folks understanding what Medicaid is, and also that they themselves are caregivers, including maybe today on this podcast. Because the more that we have those folks making those recognitions and seeing that this is something that touches their lives, it means we're gonna win. Zoe, what's giving you hope right now? That was a good one, Nicole.

You can just retweet it. You can just be like. No, I think this work is the organizing to save Medicaid to stop the attacks on 504 are frightening because the stakes are so high, but there is so much engagement around them and so much, as you said, Nicole, these kind of aha moments, the opportunity to sort of help people understand the ways in which disability and care and

disability rights protections fit into their lives. And that's what I love about doing disability rights work in general. I think there's just so much really rich ground to help people, to be part of people rethinking their own experiences and the experiences of those around them in hopefully less ableist, more accepting, more comfortable ways. That's how it has been for me thinking about my own disability over the course of my life has been becoming more comfortable with it as a sort of natural neutral part of the world, which is what disability is.

A corollary to this, I said that one more question. So this is not a new question. It's a corollary to the last question. What can people do to really make sure that their communities are accessible and intersectional around these issues on a hyper local level like in your neighborhood, what can people do?

Making things accessible to for disabled people makes things accessible for everyone. So I just want to say that out loud. I think that it's obviously important to make sure that the physical spaces are literally accessible making sure that you're not that when you're inviting someone into a space that they can actually get in, that there's ramps, elevators, all of those more maybe obvious things, but also making sure that materials are in plain language so that everyone can understand them, making sure that you have CART and ASL interpretation, and also making sure that there's ways that aren't necessarily in person for

folks to also engage. Having virtual options, I think that we got really good at that post-COVID, but for some disabled people, going in person isn't the way. So making sure that there's also multiple modalities for folks to engage is a really important thing for accessibility. Yeah, I agree with everything Nicole said. I think on a maybe an even smaller level being connected to knowing the people around you

and trying to find out how people may want or need help or support and whether you can provide that. And I wanna be really clear that this does not mean if you see a blind person, grab them. That is something that happens. And don't do that. That's not what I mean. Don't grab people's wheelchairs. Don't do that stuff. Really don't. It happens to them. But talk to people, get to know people, find out, you know, what's working for people, what help they might need. And, you know, the concept of mutual aid, I think, is a really essential one and again, something that people have been doing long before we've been calling

it mutual aid and just trying to be in your community and kind of looking out for where are the spaces where you might be able to provide some support, smooth things over for someone that can make a big difference. Thank you. Last question, where can people keep up with you and your work, Nicole? Sure, so across all channels, Caring Across Generations, just at Caring Across Gen, GEN.

I'm just at Nicole Jorwick, if you wanna hear everything about Medicaid. I do, in fact, I think talk about it in my sleep but I definitely talk about it online including we do Medicaid Minute videos breaking down some of the more complex pieces so definitely follow us there at Caring Across Jen or at Nicole Jorwick. Medicaid Minute now you're speaking my language in time frame. All right you know how to do this. Exactly like I like I like knowledge in a minute. Nicole stuff is great. I highly highly recommend the Medicaid minutes. They are. Yeah, they're great. Thank you. And Zoe, where can people keep up with you? I'm I'm where the ACLU is.

We're on all the platforms. I'm here. You know where to find us. You already found us. We're glad you found us. ACLU.org. If you're listening to this, you already found Zoe. So yes, if you're listening to this right now, welcome. You're welcome. You found Zoe. Thank you for this. I really appreciate the discussion. I really appreciate the 101 nature of this.

I think it's important to have conversations like this with people who know where you can ask this quote unquote not as smart questions. I'll just put it that way. Or you can ask the basic questions and feel free to make mistakes and say the wrong thing like I did several times today. But I think it's important to be able to have the space so you can walk out more educated and more informed and more fired up and be ready for the FO period.

So thank you very much. Thank you, it was a great conversation. Thank you so much. And I'll declare, it was our first time we ever scored points, you tied, you both tied. I've added up the points. What a cop out. You both tied. Everyone've added up the points. You both tied. What a cop out.

Everyone's a winner. No! Wait a minute! You had to come from behind. I thought you'd be happy to tie. I should be grateful. You were behind. That chocolate muffin thing was really...

Thanks to our guests and thanks to you for listening. And remember friends, friends help friends stay in the fight. Join us. And if you enjoyed listening to this episode of At Liberty, please subscribe wherever you get your podcasts and rate and review the show. It really means a lot to us. Give us five stars. We're doing the big work here. Until next time, I'm your host W. Kamau Bell. At Liberty is a production of the ACLU. This episode was executive produced by the ACLU's Jessica Herman-Whites and Gwen Schroeder, and Who Knows Best Productions, me, Kelly Rafferty, PhD, and Melissa Hudson Bell, PhD,

and was recorded at the great Skyline Studios in Oakland, California. What's up, Brian? This show is edited and produced by Erica Ghetto and Mariah Gossett for Good Git. Discover the exciting action of BedMGM Casino. Check out a wide variety of by Erica Ghetto and Mariah Gossett for Good Git. Please contact CONNECT ONTARIO at 1-866-531-2600 to speak to an advisor free of charge. BetMGM operates pursuant to an operating agreement with iGaming Ontario.