Zoe Brennan-Krohn
Appearances
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
And there's some difference in the community between whether you say like a person with a disability or a disabled person, or like person with autism or on 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.
Nobody Should Believe Me
Introducing: At Liberty
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. Yeah.
Nobody Should Believe Me
Introducing: At Liberty
Exactly. It has happened. 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.
Nobody Should Believe Me
Introducing: At Liberty
So I wouldn't want people to not talk about disability because they're afraid they're going to do it wrong.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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. 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.
Nobody Should Believe Me
Introducing: At Liberty
It's really about how you live in the world, which is what sort of distinguishes disability as an identity from the kind of 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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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
Nobody Should Believe Me
Introducing: At Liberty
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
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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
Nobody Should Believe Me
Introducing: At Liberty
I do think it's striking what 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 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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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 it's Section 504,
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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, I think it's important to emphasize how extreme these proposals are.
Nobody Should Believe Me
Introducing: At Liberty
That if you talk about like 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 39 hours of care instead of 40 hours of care services or something.
Nobody Should Believe Me
Introducing: At Liberty
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. Both of those are examples of that threat.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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 And so taking away one of these key tools to protect against that discrimination would be a really big harm.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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,
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
I didn't mean to be correcting you. I was just adding to it.
Nobody Should Believe Me
Introducing: At Liberty
So that's the case that's trying to challenge, trying to say that Section 504 is legal. 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.
Nobody Should Believe Me
Introducing: At Liberty
Educated guess. 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 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 50,
Nobody Should Believe Me
Introducing: At Liberty
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 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 support.
Nobody Should Believe Me
Introducing: At Liberty
Thanks. It's great to be here. I'm Zoe Brennan-Krohn. I'm the director of the Disability Rights Program at the ACLU, and I love a chocolate muffin.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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 no. 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.
Nobody Should Believe Me
Introducing: At Liberty
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 and or not almost inevitable, make them completely inevitable.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
Disability and Medicaid in particular are important. poor 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
Nobody Should Believe Me
Introducing: At Liberty
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. So that's the foundational piece to be able to enjoy and exercise the rest of your civil rights.
Nobody Should Believe Me
Introducing: At Liberty
Basically the same thing, the way, 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, your voice heard. There's a,
Nobody Should Believe Me
Introducing: At Liberty
a lot of of action and organizing by a lot of groups including um as we've said within the aclu the national political advocacy department is really working hard on making these um the costs of cutting medicaid clear to members of congress and be part of that what's giving you hope right now nicole
Nobody Should Believe Me
Introducing: At Liberty
No, I think this, you know, 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.
Nobody Should Believe Me
Introducing: At Liberty
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 or 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.
Nobody Should Believe Me
Introducing: At Liberty
I'm the underdog now. I'm going to try to win this podcast.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
Yeah, I agree with everything Nicole said. I think on 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 want to 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.
Nobody Should Believe Me
Introducing: At Liberty
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 what's working for people, what help they might need. And 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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
Nicole's stuff is great. I highly, highly recommend the Medicaid Minutes. They're great.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
I thought you'd be happy to tie. I should be grateful.
Nobody Should Believe Me
Introducing: At Liberty
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
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
I don't have it. I was just thinking the same thing. And yeah. The Bone Collector.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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 just really interesting. And there's so much potential there.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.
Nobody Should Believe Me
Introducing: At Liberty
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.