Welcome back to the disability squeeze. What if a program designed to fight poverty actually made life harder for disabled people? That's exactly what my guest Kevin gachin explores in their recent report titled crip coin, disability, public benefits and guaranteed income. In this conversation, we talk about how guaranteed income programs which are meant to provide financial security and which are gathering steam around the world can leave disabled people behind because of outdated benefit rules. This conversation is packed with big ideas and fresh perspectives. I really, really enjoyed this conversation, and I think you will too. Here's Kevin, hello, hello. It's great to be here. Thanks so much for coming. So what got you interested in guaranteed income? Yeah,
well, there's interesting disability histories to the to this movement, which I can say in in a moment, but really took a job with a pretty interesting organization called creatives rebuild New York. It was set up. It's a sunset organization. So it was established to do one thing and then go away. The one thing was support the lives and livelihoods of artists and culture bearers in New York State and its tribal nations. So that that happened through artist employment and guaranteed income and then a bunch of research and advocacy initiatives. So we're actually in the process of sunsetting this organization. But when I joined, I was working on issues that are specific to deaf and disabled artists in both of these programs and in general. And so yeah, when I started thinking, what are the specific things that deaf and disabled artists who maybe applied, maybe couldn't apply to receive guaranteed income. What's happening for them? So guaranteed income, maybe we should just kind of, yeah. I
was gonna say, let's step back and because this program are running for 2400 New York artists received $1,000 per month for 18 months. That's
right, yeah, that's a pretty and that's a good example. That's pretty much how guaranteed income works. If you if you see pilots or programs around the US, you know many have sprung up, maybe over 150 I think, since 2020, and they look a lot like that. So it's unrestricted, no strings attached. Cash, usually on a regular monthly payment, and usually for a short, or not short, but limited period of time. So yeah, we had 2400 artists for receiving $1,000 a month for 18 months. And my interest immediately went to well, how do these new forms of income affect means tested public benefits program.
This is a growing movement, but neglected in that advocacy is what impact this might have for disabled people, and so blame more about that issue? Yeah,
I might even go a little further and say, What? What makes the movement for cash for guaranteed income right now seems so radical and so common sense, like just trust people give them cash, it the outcomes are have been very common sensical. It's like, yes, people are able to meet their basic needs. People choose to spend their money on what they need to survive. The reason that all of that is so common sense is because public benefits have become so nonsensical, and disability benefits in particular are just bonkers. And they're so bonkers that people are like, you know, be radical. Give people cash, even though, actually, since 1974 so now, over 50 years, the Supplemental Security Income program has been doing that with huge restrictions on how you remain eligible to receive that. But that SSI came into law under President Nixon, who had actually proposed a huge omnibus bill that would replace public benefit systems, with what he called the negative income tax, but it was really a universal basic income program that he proposed, and SSI was really the only thing that survived. He was very confident. He thought everyone's going to love this. There was huge racism happening. People felt he felt like it was important for his political base, the Republicans to act in some way on what was seen as the waste of these welfare systems. If we could just give everyone, you know, cash directly, wouldn't that be better? This is a tradition that continues today, and definitely part of what Andrew Yang was proposing in his idea about the freedom dividend is what he called it. But actually, disability benefits have been the thing that has survived from this political legacy of continue, of considering a negative income tax. And so there's, there's disabled folks have been kind of the proving ground. For why cash works, and also right so we look at SSI and the intense limits on resources and assets to remain eligible. You know, folks can't, like, fundraise. They can't, you know, receive funds directly through a GoFundMe if their wheelchair breaks, or if they need to move, because often they would go above the resource limit of benefits, right? Yeah. I mean just, I mean even, not even benefit cliffs, which, you know, I mean those are typically understood in terms of, like earning, incremental increases in earning, and how that affects benefits. But here we're talking about just like people can't fundraise to get a new wheelchair without losing their SSI checks. I mean, it's really a fundamental trap of poverty that cash program has created, and here we are now in 2025 saying, like, wow, we should really give everyone cash, but the way they're designing these programs leaves disabled folks out, especially folks who use public benefit programs. Quite simply, some people can't afford to be in a guaranteed income program, and a lot of program administrators, people who are designing pilots, people who are the researchers, who are collecting data, just don't think about how public benefit enrollments are affected when we see a new increase in income.
So I feel the urge to step back into thinking about this fundamental distributive dilemma that Deborah Stone, in her book The disabled state really laid out historically and right, which is that we in capitalist economies, work is the fundamental means at which people should, you know, are expected to earn their living. But in every society, there are people who will not be able to work. And so societies develop categories of need and disability as an administrative category. Was one of those categories of need that was, that was created, and disability benefit programs, then are the administrative policy that distributes resources to those who fit into various categories of need and disability being she argues the primary category of need, and earlier you talked about how the determination of access to The category of need was medical a guaranteed income program usurps this dilemma, right? It says we are not going to determine work or work versus need. We are going to say everyone is entitled to a basic income to sustain themselves and achieve a decent standard of living, right? It's a it's a kind of a solution that rejects the question of this fundamental distributive dilemma that stone put so, I think, forcefully in her in her book from 1984 now and and so if we were to jump ship and reject the question, like many advocates might argue, right, the real question then is, well, what Do we do we do with the existing system that's already here, right? And I think what's so what I find so praiseworthy about your report that I'll post in the Spotify is, is how deeply you engage into those questions around really, what does this mean? What would it mean to do this? You're not just saying, you know, I think a lot of people in guaranteed basic income movement, haven't thought as deeply about these kind of challenging issues, and particularly haven't thought about the challenges that disabled people are going to face with this, right? And, you know, one of the things that was really interesting when I published some of this research is seeing the basic income guarantee people try to understand, you know, well, what does it mean for if people with disabilities have more expenses? Because if they get the same disability, same basic income as a non disabled person, that money is not going to go as far for them, because they have to spend additional so I'm curious if you're in favor of this wholesale user change. To a guaranteed basic income program? Or because right now, there's definitely a movement towards guaranteed income programs, but they're piecemeal, and they're local and they're state, and you come up with, really on the ground ideas for how to, you know, handle these issues of asset limits and income limits. But is your larger, is your grander vision a national Basic Income program, and how would that work? In your mind?
Yeah, these are you're getting right at the heart of, like, where, you know, folks refer to it as the cash movement, like folks who are working toward guaranteed income. Yeah, as a political project, there's a lot of fragmentation politically that is really important, because people are coming to this from very different perspectives, and there's a lot of excitement that there's this broad coalition of people coming together. I tend to worry. That the distinctions are really important. So, so for what you've just identified, there's a huge fault line universal basic income. So UBI, that's usually described as the whole everybody, right? Everybody in a community, whether that's a nation state, whatever, everybody gets this income floor so that they can meet their basic income. No one should be too poor to live, is often the thought, and that is one approach. The other approach, usually called guaranteed income, is thinking about where we should put the cash first, because we know that poverty is not equally distributed across across an entire population. So I am very much of the group of folks who are saying we already know where this where cash could be really helpful your work. You know the understanding the disability squeeze and how much more it costs to live in an ableist world like we know that the money could be used much better for addressing entrenched problems that have often been created by public benefits, these dilemmas and So, yeah, I think that that's the way to go. And I think that getting a disability specific Guaranteed Income program going, you know, is a way to go. We'd basically just recreate SSI without these, these intense, punitive limits, right? So yeah, that that fault line is really important. There's a lot of people out there thinking huge about what basic income could be, but guaranteed income is where we should start, because we can't ignore these major stratifications of access to resources, and it wouldn't make sense to start giving $1,000 to, you know, Nepo babies who have a trust fund, right? I mean, to me, that's obvious, but other folks make other cases about the political buy in and the possibility of a national for me, I just want to be very clear, I do not think that that's good. I don't think
I so appreciate that distinction. And, you know, it's really I'd never heard that, and I think it's really educational for me. So let's, let's go into this SSI program. Let's dive into this program. Okay, this is, you know, I tell my students all the time that, in my mind, this is the most important social welfare program in our country. That's not health insurance, like I would I would say Medicaid and Medicare are vital, but SSI, as in terms of cash assistance, post welfare reform, this era that we're living in, post 1996 I think really is the bedrock of our social safety net for a lot of people in our society. And yet this is a program that has been clearly neglected, right? The asset limits have not been indexed for inflation, right? So you can, you know, eligibility criteria are getting tighter and tighter. Benefits are very minimal that I've done work showing that, you know, people on SSI really are struggling to make ends meet. Often are not. You know, these benefits are not enough for many people. So you're, you're, if we were to take this program and, you know, remove or enhance these asset and income criterias and increase generosity. I think the question that sticks for my mind is, how would you determine eligibility in terms of disability? Because I, you know, this is kind of question of, if you're going to move away from a medical determination process, right, we actually have, I think, the largest adjudicative system, legal. Adjudicative system in the world is the disability determination process that is administered by the Social Security Administration in the world. I've heard that before, and it's underlined by medical decision medical decision makers doctors who often make these determinations at the scientific or medical level. I won't call it scientific necessarily, but it's a more complicated than that. But I want to know what would be your vision for how we could determine disability for this SSI guaranteed income experience?
Yeah, and just to, just to kind of put a fine point on the ways that's involved in this, you know, Byzantine process of very administrative judicial process of determining who is disabled between 2010 and 2020, the Social Security Administration paid more than $390 million in plaintiffs legal fees after Federal judges found the agency improperly denied disability claims in 2020 alone, the agency paid more than $51 million to attorneys in its administrative court system. That's just a huge amount of money. Think about how the guaranteed accounts programs we could run. So one question is just to say, Well, let's look at what has been described. As the absolutely arcane, totally, you know, impossible process of determining who is disabled, and we just look at the resources that have been dedicated to the narrative that this Byzantine system is we
need. Can we call it? Can we call it the disability industrial complex, right? Exactly,
yeah, absolutely. There's, it's so first of all, we just need to see that as a choice of how we have dedicated resources, right? It's similar with the for profit welfare management system. This might be something folks don't know about, really, some wonderful reporting that has shown that the folks who are managing the requirements around work for certain welfare systems are, you know, it's a, it's a, I think it's a 50 billion, excuse me, $50 million industry to make money off of managing folks requirements of doing certain kinds of job training in order to remain eligible for welfare. It's a similar question, like, we Yes, we have certain difficult decisions to make about, for example, how do we define disability and how does that change and stay updated? But we've also already committed an incredible to an incredibly wasteful system that is already like we have to call it ableist by design, $51 million in one year given to lawyers, is what you know. So I just want to name that that's already, you know, the process. We've already kind of made fundamental commitments to waste when that should be understood as a as money that should be going to the distributive dilemma itself. And great
point people, great, great point 51 million is actually small, if you think about the larger administrative apparatus, right? And yet, adjudicative systems totally.
And yet, $50,000,000.50 $1 million in in the in the pockets of community, like researchers, right? So I'm thinking of, let's think about how the SSA Social Security Administration has failed to come up to date with the pervasiveness of long COVID especially among a previously non disabled workforce. Right we have, like millions of people across the US who are out of work, who had not previously considered themselves disabled, and are running into a fundamental physiological limit they can't long. COVID is debilitating for them, and by and large, the disability public benefit systems have not found ways of understanding this as a condition that deserves exactly what disability benefits programs are supposed to help with right? You lose your capacity to earn for yourself because of a disability. We think that that's wrong. That shouldn't happen. Everyone should be able to live right. And yet, here we are with millions of folks just truly with no options. And so I think there's a lot of interesting patient led collaborative research. There's a lot of community driven there's a lot of talk about how disabled people can be leading research efforts. And I think there's a lot of ways that we can apply that to the disability determination process and root our knowledge of disability in community, rather than in the kind of biomedical renderings of our bodies which goes through this administrative court system where, you know, it's kind of related to the lack of updates about SSI limits, but also the occupational handbook that these courts, the SSA, administrative courts, use to determine whether someone is truly disabled, is super outdated. Hasn't been outdated in decades, and is ridiculous, and you can find any job that a person possibly could work as, and that's grounds for denial of SSI and so very often it's like, oh, this person could be a greeter at Walmart. So sorry, no. SSI, here, right. It's just a injustice on so many
anachronistic determination system. These are really tricky questions administering such a large public benefit program, especially if you want to keep a disability category. I've looked at other countries around the world trying to think about ways to determine disability in in light of our new, modern notions of disability, right? That are not medical based, for example, but focused on other questions. I think the country comes to mind is Denmark has done a lot of interesting work bringing in interdisciplinary teams to meet with the meet with the person, including social workers and counselors and voc rehab, and really trying to think about all the kinds of barriers that are preventing that person from working, and trying to address them through more flexible kinds of cash assistance. Often. Or flexible working hours. So I think I'd be interested, if you know the community led ideas. I really like to, if you, if you have, I would like to learn more about what what can be done and what they're doing there. But it's these are very tricky, very tricky questions for the administration of a welfare state. Well, yeah, maybe
I can. I can kind of redirect us to think a little differently about it, because yes, those these technical questions, right, are really difficult when we kind of accept the conditions around it, but we might need much less of a focus on a determination system for disability if we had more accessible work environments, if we had community led public health departments that were pandemic prepared, for example, like so there's a kind of surround that accessibility forms. It is kind of our everywhereness. And if we cared about everyone, and especially disabled folks. I think we would actually and in the design of our our all of our social systems and cultural systems, political systems, I think we would find that the pressure to finesse a determination system is just less right, because we would be investing in people's access to the things that they already need, right, that they should already have, that the determination system, right is all about like and what happens if you don't have those things? So if we, yeah, if we had a, just a broadly more accessible workforce, maybe we wouldn't really be at this pressure point. You
know, I think it's important just to recognize that cash assistance is just one modality, one policy instrument for alleviating the pressures of the disability squeeze right, you can do maybe perhaps, far more, focusing on accessibility and focusing on public health, focusing on all the things you were just mentioning I talked a few months ago, I was a UN conference, and in the hallways, I was talking to this Irish minister. I don't know how I got in conversation with him, and I was telling him, I do my research on extra cost disability. He was very interested. And he said that they, you know, because Ireland has been doing a lot of interesting research stuff on this too, that I knew about. And he said, You know, one thing we realized is we can't afford. We have really limited fiscal capacity. We can't afford cash assistance programs like an independent living supplement. But what we can do is improve our infrastructure and try to make our cities and our society more accessible. And we think that is a critical way to reduce these these costs, these extra expenses. And it's, I think, an interesting idea. And, you know, I don't know if it's enough, right? Because there are certain goods and services that a lot of people with disabilities need to not just get to work, but to survive, right? And so we need to make sure that that those goods and services are accessible.
Yeah, yeah. It's, fascinating. The IR, the Irish context, specifically for basic income, is really interesting because they actually did have publicly funded basic income for artists. So the Guaranteed Income program that I worked on was specific to artists. There's not a ton of these. Usually, there's not really a kind of like worker that is identified for these programs. So it was, it's really interesting that Ireland did that and it was publicly funded. But here we go. They very quickly, when asked, said, these are going to count as income, even though we are the government and we are, you know, also, you know, connected to the systems that could exempt certain kinds of payments for from us from your disability benefit calculations, we're not going to be able to treat this as any different than your other kinds of income sources. And so yes, disabled artists in Ireland, this will affect your disability government benefits, and that meant that a lot of people didn't couldn't apply again, like it became too It was, yeah, some people could not afford to apply at all, and then that affects a lot of the research, so we don't even know then how many people chose not to apply. A lot of time, we're seeing research design around guaranteed income that doesn't ask about public benefits, or specifically, sorts people who use public benefits out of the research, because the interactions are, they think too small or too specific, when actually this, we know the scale of the problem is much bigger. So it's interesting, yeah, that the Irish minister would say, like, Yeah, we should be thinking more holistically, because I think we could have guaranteed income as a stop gap measure, right? Something that intervenes now as we do that more holistic transformation. But here's where disabled folks are being totally excluded from the imagination of how basic income should work. So, yeah, the. The Ireland example is, like, really relevant. So,
first of all, it's so fun speaking to you and in to hear your imagination. And, you know, getting this artist perspective, this access as a form of art, ideas and in your piece that, again, I'll link below you. You do coin. This term, crip coins, as can you say? Okay, so which is a kind of currency. And I want to give you a moment to just explain this idea here.
Yeah, totally. Oh my gosh. I never thought about that coining. Crip coin. It's happening. I mean, I moved away, I will say I tried not to coin things that was like the coin of the realm in academia for me. And I was like, I don't care what y'all call it anymore, like, let's just get to work so, but yes, this is, this is, like, a term that's important for the way I'm thinking about guaranteed income, because it was a powerful realization for me. I've been going, you know, I've been circling up with a lot of guaranteed income organizers around the US and and and globally, actually, and at a conference last year, I just started noticing that a lot of people were mentioning how important it was to pair thinking about the cash itself with services, resources, Support, forms of care that come and wrap around that cash. So there's even models for this now, cash plus, as it's called, is like a model for how to distribute cash plus resources. Can you know, community. People form a lot of community. There's a lot of bonds between people when they share, when they're in the same program, there's something connective about being in a guaranteed income program. And it's, in some cases, it's actually the stuff that comes with the cash that's more valuable than the cash. And thinking about that, thinking, wow, actually, cash is kind of a vehicle. I mean, cash is important, of course, right? I just want to say, just having the money in your bank account to make rent, there's a fundamental goodness to that, that's that's important. But what we're realizing is that that alone isn't what people are reporting as, in some cases magical results people feel like really transcendent in the presence of these kinds of cash programs, and that means there's other currencies that are traveling alongside or with the cash. And I started wondering about that, you know, like, what, what would be the disability specific currency? If cash is just one kind of thing that can circulate? We also know, of course, because of the disability squeeze that resiliency on, you know, being sneaky, knowing how to show up for your community. These are all valuable currencies that are not about cash, that happen in the absence of cash, that are in many ways more life saving than cash. And so the Crip coin is kind of like, what is that? What? Yeah, what are the things that that could values and forms of care that could swirl around disabled folks to do more than just get them cash, but also to, yeah, build new worlds, to imagine new ways of being. And this is really relevant right now in 2025 because the US Mint is about to print a special set of quarters with incredible American women. It's their American Women's Program. It's the last year, and in this final year, one of the folks that's on that soon to be literally on our coin. The quarter coin is Stacy Park Milburn, who is a disability was our late and beloved disability justice activist, and disability justice the word, the words are going to be physically printed on this special run of quarters. So I was like, wow, what does it mean when disability justice is literally our currency? Of course, not so much in the quarter coin, but more as a question for communities that are already working to make sure that disabled folks are not left behind, that disabled folks can survive. It's not cash that has been circulating as most important there, because cash has not been there. It's these other forms of care. And that's what I Yeah, that's the kind of call to think about disability solidarity, to guide action everywhere you are, wherever you are, with whatever you have. And yeah, and to think about values that can inform cash programs that put disability more at the center than as we've seen, quite peripherally. Kevin
gachin, thank you so much for the meeting with me. This was a total pleasure. I really enjoyed this conversation, and I hope listeners will too. Thank you so much, Kevin, thanks
