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
Chapter 1: What are the current challenges in disability rights?
True Story Media. 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 Rainey Children's case. And we are less than a month away from our season six premiere. And once again, you will get all eight 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 MVP. 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 helloandnobodieshouldbelieveme.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. Ich bin Charissa und meine Empfehlung an alle Entrepreneure, startet mit Shopify erfolgreich durch. Ich verwende Shopify schon seit dem ersten Tag und die Plattform macht mir nie Probleme. Ich habe viele Probleme, aber die Plattform ist nie eins davon. Ich habe das Gefühl, dass Shopify ihre Plattform kontinuierlich optimiert.
Alles ist super einfach, integrier- und verlinkbar. Und die Zeit und das Geld, das ich dadurch spare, kann ich anderweitig investieren. Vor allem in Wachstum.
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Chapter 2: How does Medicaid support individuals with disabilities?
OK. All right. That's with the chocolate chips to Nicole. Super.
That's the double. Get all the sweetness in there. It's almost like a cup, 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 Nicola gave the right answer. Call balls and strikes right at the top.
All right.
I'm the underdog now. I'm going to 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, 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.
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Chapter 3: What is the importance of language in discussing disability?
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-
uh 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 issue.
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. 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. I think the most basic sort of tips I'd share about language are that disability is not a bad word. 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.
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Chapter 4: How can we improve care systems for disabled individuals?
You get a prize. I actually mean that. I actually do mean, yeah. I like being accepted in 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. Like 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 disability
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 like people don't often think about about like there is the there is the person living with a disability and depending upon the disability there is the community around them that that sort of is also a part of that person's life and how they interact with the world and
and how we don't necessarily always have a good, as a government, I'm not trying to put it on 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.
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Chapter 5: What does the future of disability rights look like?
And you can feel free if there's other countries that do it better, which of course there are, or if there's other, or if there's, 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 that, what would the system look like?
Well, right now, we know that 95% of disabled people want to 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 that would be one way to quickly address the almost million people that are on waiting lists for these services.
Yeah, it's interesting because I'm at the age now of like me and a lot of my friends are like basically into like, 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 history, 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, right?
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. We're at the point now of like, okay, me and my wife, we need to find a house where she can be with us. And we're at a level of privilege where we can actually do that, although Oakland is still crazy expensive.
So we can't get the house we want. We have to get the house we would like and then fix the roof. And then I talked to a friend of mine yesterday who was like, his parents do halftime one place, halftime another place. And he's like, we're sort of trying to slowly talk them into a retirement community.
You know, because like the traveling across the country and the living by yourself where you're not near your community, it's not. And so then is that like we have to sort of encourage them to move into a retirement center that you, of course, know is not the dream. It's just the reality, you know, and they're again, these are people who are lucky enough to be able to make those choices.
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Chapter 6: What are the personal experiences of caregivers?
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. And of course, it gets harder and harder the less privilege you have, but almost no one is sailing through these kinds of decisions 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 him. 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 this. Give us your takes on Medicaid. So we'll start with you.
Sure. So Medicaid is. a system funded by states and 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, like what you would think of for what insurance would provide. It can cover 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. Turquoise care in New Mexico, also kind of cute, kind of on brand. And so people don't always know it. And part of that I think is really because of how much stigma there is about
about the term Medicaid that states don't want, you know, 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 they, because of all these different, because it's constantly different.
They may be, they may some 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.
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Chapter 7: How does society perceive disability?
Woo, I've seen that image, but you just really sort of highlighted it now with like a disabled man. I mean, you know, I feel like 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 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 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.
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Chapter 8: What role does the government play in disability rights?
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, you know, in the early days of COVID, this was very extreme that, you know, when we were 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. 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, you know, 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 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, 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.
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 but in this, and you referenced this earlier, the idea of the disability community being intersectional before that was a word. 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 a woman who's like, all of those are me. Those are all me. Those are not three separate communities. And I think that 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 at 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,
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