This week, continuing Off-Kilter’s ongoing series of conversations about the limiting beliefs that we as a collective must release and replace to pave the way for economic liberation, Rebecca sat down with two dear friends and leaders within the disability rights and justice movement to talk about one of the most toxic limiting beliefs underpinning large-scale oppression in the United States today: the notion that a human being’s worth comes from their work. They ended up having a far-ranging conversation about why disability leaders know this is not a moment to be seeking to return to “normal,” who the American dream was and wasn’t designed to include, and some of the key limiting beliefs constraining the modern American philanthropic sector. Rebecca Cokley is the program officer for disability rights at the Ford Foundation, and Keith Jones is president and CEO of Soul Touchin’ Enterprises.
For more from this week’s guests:
- Learn more about Keith’s work here
- Learn more about Cokley’s work as the first U.S. disability rights program officer at the Ford Foundation here
- Follow Cokley (@rebeccacokley) and Keith (@dasoultoucha) on Twitter
- And get caught up on the permanent economic recession facing the U.S. disability community in this TCF-CEPR report
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REBECCA VALLAS (HOST): Welcome to Off-Kilter, a podcast about the fight for economic liberation and what it will take to set us all free, powered by The Century Foundation. I’m Rebecca Vallas, and I’m a former legal aid lawyer turned policy advocate who works with public policy and law, as well as organizing, coalition building, and narrative as tools for building a more just society, one premised on collective consciousness of our common humanity and the inherent dignity and rights that come with being human. Every week I talk with visionary leaders working to reinvigorate our shared imagination and disrupt the off-kilter imbalance of power in the U.S. to build a society where everyone can thrive and experience the shared abundance we all deserve.
And this week, continuing a series of conversations about the limiting beliefs we as a collective must release and replace to pave the way for economic liberation in the U.S., I sat down with two dear friends and leaders within the disability rights and justice movement, Rebecca Cokley and Keith Jones, to talk about one of the most toxic limiting beliefs underpinning large-scale oppression in the U.S. today: the notion that a human being’s worth comes from their work. We ended up having a far-ranging conversation about why disability leaders know this is not a moment to be seeking to return to “normal,” who the American dream was and wasn’t designed to include, and some of the key limiting beliefs constraining the modern American philanthropic sector, and much more. Rebecca Cokley is the program officer for disability rights at the Ford Foundation, and Keith Jones is president and CEO of SoulTouchin’ Enterprises. You can find more about their work in show notes. [upbeat music break]
Cokley, Keith, thank you so much to both of you for taking the time to come back on the show. I’m really looking forward to being in conversation with both of you! I don’t know that the three of us have ever actually been together in conversation at the same time.
KEITH JONES: No, I don’t think so. And thank you again for having me.
REBECCA COKLEY: Thank you so much, Vallas. Yeah, anytime I can be in a space, whether virtual or real life, with Keith, it’s never a dull moment.
VALLAS: And Cokley, you were actually, I think, the person who first put me on to Keith and introduced me to Keith’s work, so I get to thank you for introducing us. But before we get into where we’re gonna go with this conversation and part of why I’m very excited to have both of you on the show, I wanna give each of you a chance to remind our listeners a little bit about how you each come to this work and some of the hats that you’re each wearing now within the disability rights and justice sector. You’ve both talked a little bit on the show about your work before, but especially for our newer listeners, would love to start there. Cokley, do you wanna pick up first? Which is kind of perfect since you were the last guest on last season’s season closer of Off-Kilter.
COKLEY: Thank you so much. So, I have the pleasure of serving as the U.S. disability rights program officer at the Ford Foundation, where I’ve been for about the last, almost, it’ll be two years in January. And before that, had the joy of being the co-founder of the Disability Justice Initiative over at the Center for American Progress with Vallas. Really grew up doing this work, and I think the conversation around disability, economic justice, liberation, all of those sort of connected threads is one that really hits home for me. Both of my parents had the same disability that I do, which is dwarfism. And when my dad became paralyzed when I was about a year and a half, my parents went to a state office and asked what sorts of programs they could use to help them stay on their feet, figuratively. And they said that they would only provide my parents with vocational rehabilitation services if they put me up in foster care. And it wasn’t something my parents ever talked about until I was much older, and my mom brought it up to me when I was in high school and looking at Voc Rehab. And she was like, “I don’t trust that program. This is why.”
And I hear today, I mean, I think there’s just so much that hasn’t changed. I mean, several years ago, there was an intern at the White House that had been accepted for a full ride to Harvard Law, and he had to turn it down because he wouldn’t have the same hours of home care in Massachusetts that he would have in his home state of Illinois. Now, he went to a state school and did fine and is doing well for himself, but he’s not doing as well as he would’ve been doing with a Harvard law education and no law school debt. And so, I think that there is just this…. It’s beyond just like what are the policy fixes? Because we know the policy fixes are one thing, but we know that it’s, you know, it really is such an example of the structural ableism and the ableism compounded by racism, compounded by sexism and homophobia that puts these systems in place that feel like— I mean, years ago there was that book, The Undeserving Poor, that really had this fundamental belief that there are people in this country that deserve to be poor and deserve to be burdened. And it just gets me really pissed off.
VALLAS: [laughs] And that’s exactly where we’re gonna end up going with this conversation, is to that deserving/undeserving binary that it is, of course, at the heart of the invisible limiting belief that governs so much of American society at this point of human history, which, of course, ties human worth to work. We’re gonna go there momentarily. But Keith, take the mic next. Talk a little bit about how you’ve come to this work for our newer listeners who might not be familiar with where you sit in this sector.
JONES: All right. Amazing story, and it’s hard to follow. But I come to this work honestly and by happenstance and had no idea what the hell I was doing. [chuckles] Essentially, I have, you know, I came to the work when I was looking for a job. But the reason I was looking for a job is ‘cause I had run into all the barriers, much like Rebecca had talked about in terms of how people saw my educational attainment, how people saw my humanity. So, quick where I come from and how I got here. Born in St. Louis, Missouri. For those that don’t know, Missouri was the northernmost Confederate state. Hence the reason you have the Missouri Compromise. When Section 504 got passed, we are that first generation that was living through the implementation as well as the bussing. So, from St. Louis, Missouri, going from 1st to 4th grade, being in completely segregated schools, you learn that racism dropped away once you got on the quote “short bus.” And then when you’re in school, it didn’t matter because everybody was quote “crippled.” But there was no instant, there was no desire to elevate us in terms of what our dreams, hopes, and aspirations are.
Leapfrog a couple more years. Was one of the first kids to quote “mainstream” Ithaca School District and then going on to being like the only Black anything in an entire school in Lansing, New York and facing ableism and racism at the ages 9 and 10. And people talk about how everybody likes to show the little Black girl being guarded by the MPs to go to school. What is beyond that is that there were kids with disabilities that didn’t get that kind of security. We didn’t get that kind of let you in so you can not be stupid. And then after that, moving to Boston, and then that 766, that major legislation that fixed mainstreaming again, and then being one of only two kids in my entire class that had, again, special education, there was only two of us that got to go to quote “regular” class. Get to high school, again, only two or three of us got “regular” classes. Coming to my graduation in high school, it was tacit. It was, “Oh, thank you so much, Keith. You’re so smart, but we think you should come back to high school for another year.” Who the hell wants to be a fifth-year senior in high school by choice? But again, it was this subtext of ableism, racism, classism, and low expectations where your teacher was like, “We got your SAT scores.” And ladies and gentlemen, there was a time when SAT scores were only 1600, right? I get the SAT score, and she goes, “It was really good. You were really smart. But we think you should come back to school the next year because your spelling wasn’t too good.” I’m like, “I got the third highest score in the class.”
Then you skip ahead a couple decades coming into the independent living work. I started noticing the chasm within the disability rights community and how racism, even when we all have disabilities, is prevalent and foremost. How there’s homophobia, transphobia, xenophobia, all of those things. And so, for me in this work is to, you know, I say it a lot on social media, we are not a fully realized movement until we are a fully inclusive movement. So, the way I come to this work is, I get it. You ain’t got to like everybody, but collective liberation takes a collective. And if we can’t have that kind of conversation or work in that kind of fashion, we will just keep perpetuating funding cycles where people go, “Oh, the poor Negroes in the South Side need Wi-Fi. Here’s $10.” So, that’s how I come to the work.
VALLAS: Keith, I can’t think of a better place to start for this conversation. Thank you so much for starting us off with the level of real talk that I think we’re hoping to get to for where we spend the balance of our time. You and I, just for continuity, I’ll share with Off-Kilter’s listeners that actually the idea for having this conversation as part of this series of conversations on Off-Kilter around the shifts in collective consciousness that it will take to ever have a shot at collective liberation as you’re describing, you and I were actually on a panel recently that Cokley roped us both into!
JONES: Yes! [laughs]
VALLAS: So, we get to blame her and thank her for that, for The Disability and Philanthropy Forum, which was doing a webinar series, and I think they still are, on disability intersections with other issue sets that philanthropy better understands are areas for them to make grants for impacting things like public policy. And so, you and I were on that panel. And I wanna namecheck our friend, Mia Ives-Rublee, who was part of it, too. We asked her to be part of this conversation today, but she’s gallivanting abroad and doing fun traveling.
VALLAS: So, we’re sad to miss her. But in that conversation, we were talking about, frankly, what it’ll take to achieve economic liberation for disabled people in the United States more than 32 years after the Americans with Disabilities Act, or ADA, became law, and collective limiting beliefs were a really big part of that conversation. So, that was actually really what inspired me to make this next episode in this season into a conversation with you and to bring Cokley in, ‘cause we’ve been having it with her behind the scenes. We’ve talked a lot about disability economic justice and long denied economic justice for the disability community in this country on Off-Kilter at different points over the years. So, long-time listeners will be very familiar with some of the stats, for example, that people with disabilities in the United States are more than twice as likely to live in poverty as people who don’t have disabilities. We have a huge earnings gap that actually, Century Foundation research has put a number to. People with disabilities are paid just $0.74 on average on the dollar compared with non-disabled workers in this country. So, we could lay out lots and lots of the why we need to be having a conversation about how disability features in a collective liberation conversation. We could spend all episode doing that, but that isn’t what I wanna do.
What I actually really wanna do with the two of you, and part of why I’ve been really excited to have this conversation with both of you as part of this series, is to get into some of the limiting beliefs, and frankly, some of the most toxic limiting beliefs that we as a collective most need to release and replace vis-à-vis people with disabilities in this country if we’re ever gonna have a shot at achieving economic liberation that is truly collective and doesn’t leave disabled people behind. And the core limiting belief that I wanna dive into first with you both that I feel like it’s gonna create a whole set of directions we could go—and I’d love to go anywhere you both want to go—is around that human beings’ deservingness or worth comes from our work. And that was really a big part of that conversation, Keith, that you and Mia and I were having as part of that webinar in front of a whole bunch of philanthropic leaders. So, Keith, I don’t know if you wanna pick up there with some of what you were sharing in that conversation to help us start to get into that particular limiting belief and its toxicity.
JONES: Yes. Well, thank you. And when we were talking about the limiting beliefs, it’s like, what’s at the root? When people say, “I’m being philanthropic,” right, they’re giving something because it gives them an emotional feeling, or it sets somewhere on their moral compass, and they feel compelled, particularly in the disabilities space; however, a lot of those things are driven by, “Oh, snap. I had a kid with a disability. What the f—?” And then get out and realize that this utopic American dream that has been packaged and so does not exist once you have a disability. And so, then you are set up in foundations, non-profits. Then you have the funding network, and it turns into a machine. And for myself and the toxicity that I’ve seen is that at its fundamental core, saying, “Here’s a proposal to serve people who need servicing, but you need to pick their needs over this other community in this other proposal.” And how do you weigh that, right? And then at that point, it becomes subjective. So, the toxicity, at its core, is that it makes you have to, you need to be more desperate than the next person in order to receive any kind of funding. And then at that point, you are receiving funding for a short amount of time, and you’re asked to multiply fish and loaves of bread.
And I mean, people have done amazing things with small amounts of money. But it goes to a history of understanding that in order to get a non-profit up and running, to have a fiscal sponsor, to have a 501(c)(3), to do these things in order to even get to the point where you have a development officer who can write the grants, who can submit the grants, there’s all that before you even get to the money. And so, what are the tax codes that can be changed? What are the policies that can be changed to free up and release some of this money that can go to nontraditional organizations or people who are literally doing the work as we speak? And I think one of the more toxic traits is that there’s just the subtext of racism and misogyny within philanthropy, and that’s just ubiquitous, whether you’re talking about corporate America, whether you’re talking about banking, whether you’re talking about housing. And those are the things where we keep thinking that people are coming to this work, leaving themselves behind. If you are racist, misogynistic, xenophobic, but you have a call to be philanthropic, that doesn’t change the fact that you’re racist, misogynistic, and xenophobic, but it does direct how you give out your money. So, that’s some of the underlying traits that we need to discuss and talk about.
VALLAS: I love that, Keith. And actually, you’re taking us into a whole related set of issues here around some of the limitations, too, with how philanthropy works in concert with, or not so much in concert with, movement and often with leaders on the ground. And I feel like that’s an important piece of this conversation, too, and one that I know Cokley’s gonna have a lot to say about it as well, given her perch these days, sitting within philanthropy instead of as an advocate on the outside with us.
But Cokley, where do you wanna take this conversation thinking about your worth comes from your work kind of notion? Obviously, that has a lot of relevance for and impact on people with disabilities, but it’s got toxicity that really, frankly, impacts all of us. Where does your brain go when you hear the deserving/undeserving conversation in a way that gets to that limiting belief around human worth coming from one’s work?
COKLEY: Thanks, Vallas. I think about this a lot, and I think about this both sort of historically and also in terms of just the emerging role that philanthropy is having in this space. I think that it would be impossible to have the conversation around your worth is your work if we don’t actually talk about slavery and talk about the connection between slavery and disability and productivity. The fact that early pseudoscience, whether it was phrenology or the creation of specific mental illnesses like drapetomania that was known as, or in plain language would be considered a “runaway slave syndrome,” that there was this fundamental belief that there was a group of people, in this case enslaved folks, who were meant to do work. And disability was also often the cause and consequence of a belief that they were not working. And the types of work that people would get given would be determined by folks’ impairments and disabilities, and their economic value would be determined by their disabilities and impairments. And so, this is part of, as Keith laid out, people having disabled kids and being like, “Holy crap,” the American dream is inaccessible to them. But the American dream was never meant to be accessible to them.
I think about so many of the policies that have codified the state of poverty that people with disabilities are forced to live in came out of the New Deal. And the New Deal is often held up as this beacon of progressiveness and this North Star. People are like, “What would the new New Deal look like?” I don’t want a new New Deal! ‘Cause the New Deal screwed disabled people in so many ways, and I think that it’s worth having that conversation around what does it mean that the first sort of universally recognized disabled president, because of all of his wealth and privilege, felt that there was a certain class of people that deserve X and a certain class of people that didn’t deserve X? Or if we were going to give them supports, we means tested them, we behavior enforced them. We had requirements about where they could be, who they could live with, what they could do, where they go to school, all of those things.
And when it comes to the philanthropic angle, the piece that is particularly interesting to me is that for over a century, philanthropy basically acted like the disability community largely didn’t exist, and so it was left up to the federal government. And when you leave something up to the federal government, as most of us know, with an administration that changes every four years, the wills and desires of what that funding looked like changed every four years. I remember being in the George W. Bush administration and—not working in it, but helping manage a grant from the Bush administration—and there had been a case going on about a number of young girls with disabilities at a segregated school who’d been sexually assaulted. And so, we were bringing young people with disabilities together in DC for a week, every year, and we wanted to do a training about sexual assault and consent. And we were told that we couldn’t do it, that we had to focus on, instead, the only framing that we could do is how to have healthy and safe and abstinent relationships. And so, what does it mean when all of the funding or a majority of the funding going to your movement works comes from a federal government that changes every four years? It’s actually, in many ways, fundamentally led to a slower rate of growth and like it’s…. I’m just gonna say it. And Keith, I feel like I say this with you. It crippled our movement.
COKLEY: Like, we have disabled movement because we were not afforded the same resources and the same tools that other social movements had because of philanthropic investment that we just didn’t have.
JONES: Right. Right. Thank you, ‘cause it’s true. And it’s one of the things that how do you elevate yourself out of abject poverty with programs that restrict you from having assets? How are you…? When you’re talking about unemployment, what is gainful employment, if coming out of school, teachers don’t think I’m worthy of being taught? What is the American dream if the American society has practiced eugenics forever? What does it mean? I remember we were working on one of the grants on the New Freedom Initiative coming out of the Bush administration.
COKLEY: Oh, my God. Did you just bring up NFI?! Wow!
JONES: Yeah! Because yes, lady, I am one of the people who did the Control Planning and Implementation Grant Group where we did the whole this is how CMS should do it. But again, it was coming down to funding. It was having to sit across from funders. Or even later on when we were doing impactability and talking about people with disabilities learning self-defense and how to protect themselves against sexual assault, and going to funders and talking about vulnerable populations, and to have the funders say, “[gasp] I didn’t know disabled people got sexually assaulted or were vulnerable.” Wait, what?! How? I’m taking a deep breath. So, what do you mean you didn’t understand that? But you’re controlling hundreds of millions of dollars. And this is where the gaps are.
Where I guess for me, coming from the community is we’re expecting people who stepped into this space to be cognizant of the space that they’re stepping into versus making it up as they go along. So, if you’re coming into the disability justice space, you can’t come in and say, “Well, we’re gonna give you $10,000. Go hold an event,” when you understand that the access needs alone could be four times that amount. Yes, we live in the world of Zoom, but we need online interpreters. We need actual CART recorders. We’re gonna need language interpreters. We’re gonna need graphic recorders. There are multiple ways. And if you are a funder and you don’t understand the underpinning of the architecture that’s needed to do what you’re funding, then what the hell are you doing?
VALLAS: I wanna pull on the thread—there’s so many threads here to pull on—but I wanna pull on the thread of dreaming for just a moment, because you’ve both spoken about it, and you’ve both invoked the American dream as something that was, by design from the beginning, not accessible and inclusive to all people in this country. If that’s something that is a surprise to anyone listening, [laughs] we don’t have time, I think, to have that whole conversation here. But it should hopefully be fairly straightforward to anyone who knows anything of American history. And Cokley, you started to describe some of how the conversation we’re having today has to start with the role that slavery played in effectively creating a whole genre of policymaking that we are frankly still living with, even if it’s been somewhat whitewashed and poured into new bottles over the years, the likes of which we talked on the show at length, such as work reporting requirements in public assistance programs and so forth. But I’d love to give each of you a chance to talk a little bit about the role of dreaming in both of your work and in the work of the disability rights and justice community. Here we are talking about some of the limiting beliefs that we as a collective are continuing to reinforce and to feed and to nourish in ways that hamstring our collective dreaming capacity from building a new economy and a new economic reality, including for disabled people.
But as I mentioned in our episode last week in the opening monologue, something that I’ve been doing a lot of thinking about, that I know each of you does a lot of thinking about all the time, gets back to the notion of dreaming and its place in policymaking, but also, frankly, in larger work that impacts whole systems and culture at scale. And I noted last week that this is a moment in human history where modern-day oracles are increasingly talking about the time that we’re living in as a battle of imaginations—
VALLAS: —in which oppression is what happens when an individual or a whole group of people are living in someone else’s dream instead of being free to dream their own dreams. And I talked about that last week with Jeremie and Solana from Liberation in a Generation. But as we talk now about the American dream and who it was for in the beginning, I’d love to give each of you a chance to talk a little bit and reflect on how dreaming and vision work shows up in your work. And then we’ll come back, I think, to how we replace some of those limiting beliefs we’ve started to get into. And Cokley, I don’t know if you wanna pick that up next.
COKLEY: Sure. I think where I would sort of start is pulling on a thread that Keith had mentioned earlier about the role of positioning in terms of how you get funding, how you get people to buy in to your work. And I think there’s an activist named Jim Sinclair who coined it best when he said, “Often we’re forced to be self-narrating zoo exhibits” when it comes to getting funding because that’s what the…. It’s very Oliver-esque, very much like, “Please, sir, can I have some more?” Like, what is the, how do I make myself sound like a Sarah McLachlan soundtrack SPCA commercial with sad puppies to convince the people on the other side of the table to cut a check to invest in the dignity of disabled people? And it starts at it’s very earliest age. I mean, I don’t know a single person with an apparent disability that wasn’t told in high school that they should write a sob story about their disability for their college applications. Like, write the worst story possible so that you can get the most financial aid. And so, it’s actually trained by the system in order to perpetuate itself.
And I see it as a funder, and this is where the dreaming piece comes in. Often when I’m talking to folks, and I mean, I think, Vallas, I’m gonna tell a story from our past, which is when we first started the disability work over at the Center for American Progress, or started building out the initiative. I remember the first email we got from the amazing Noorain Khan at the Ford Foundation around specific dollars. And I remember where I was. I was in my car coming back from Delaware, and Noorain said, “I have a little bit of money for you all to start something.” And I remember in my headspace, I was thinking a little bit of money is like $10,000. Maybe she’s got $50,000 that we could play with at the most, but oh, my God, how would we spend $50,000? And then getting the grant letter and seeing what we were being given was an actual tangible, real investment. And I remember calling her and saying, “Oh my, God, when you said ‘a little bit of money’.” And she said, “Well, that is a little bit of money.” She’s like, “I would invest like bazillions in what you all are doing, but I don’t have a bazillion checkbook right now.”
And I find myself having that conversation now with a number of grantees, with people who wanna talk about funding. I remember talking to somebody who’d been running a really phenomenal youth leadership program for young people with disabilities in the rural U.S., and over a third of people with disabilities live in rural America. We don’t want to talk about it, though. And I remember saying to them, “You’ve been running this program for like 15 years on art sales and donations. What would it be like for you just to take some time to think about the work?” And they looked at me like I had grown like a second head out of my neck. And they were like, “What?” And I was like, “You all have worked so hard for so long. Think about it. Have you had time to think about if you could do anything with this program, what would it be? Have you had time to think about if you wanted to evaluate it, not like I’m saying you do have to, but if you wanted to do an evaluation, see what have you learned over this 15 years, you could do that. Take some time and just think about it.” And that’s a luxury. And they really looked. They were like, “Are you sure?” And they’re like, “But what if we don’t produce?” And I’m like, “I don’t want you to produce. I want you to think. I want you to dream.”
And Keith, I’m gonna kick it over to you ‘cause I’m sure you have thoughts on this. But as disabled people, we’re not often told, we’re not often given that luxury, the chance to sit and think about the work, to iterate, to just like, for me to hop on the phone and call Keith, and be like, “Keith, let’s just shoot the [bleep] for an hour about what’s some cool stuff that we could collaborate on.” Maybe we’ll come up with something, maybe we won’t. Maybe the conversation is just the point. And while that’s completely normative and accepted in non-disabled spaces, the perception is of disabled people, if you’re not—and I would say not just disabled people, let’s be real, any marginalized community—if you’re not producing widgets, you’re wasting folks’ time.
JONES: Yeah. Yeah, it’s funny that we’ve been talking about dreaming in this space. And Rebecca, we’ve had conversations, and it’s like, oh, dreaming is what we do when we wake up and try to exist in this space. Before you start talking about social justice and philanthropy, I just dreamed that I get off the curb in order to go get a cup of coffee. And if I’m in New Jersey, I’m really dreaming that in the winter, then somebody’s smart enough to shovel the curb cut. So, just basic dreams on just being able to exist. But in the philanthropic space, it’s always the stuff that works on the streets, whether it’s dealing with youth, whether it’s suburban over the rural, whether it’s working with seniors, understanding how people define themselves is more important than how funders need them to be defined. And that has always been the challenge. So, when we talk about dreaming, at least in this, I’m kind of, I’m guilty of being an insanely huge dreamer and thinker. And I encourage every person that I come across, at least intentionally, in a space, like, imagination is yours. Let it run. And but again, like you said, Rebecca, as a person with a disability, we’ve always been told not to dream. The American dream or even in this space, if we come up with something that’s innovative that we know that will directly impact the community in the affirmative, then we have to dream up how do we sell it, [chuckles] right?
And so, the conversations at least in certain circles now is that people don’t wanna prostitute their pain. They don’t wanna have to pimp out their pain and to take on their tragedies in order to get some kind of financing to do something in order for them to self-elevate. And the dreams are there, but they often run up against the jackhammer of doubt and depression that whether people will be told, “Your dream is ‘unrealistic’.” Which is kind of funny, considering it’s a dream, right? But dreams are reality if we do the work to bring them into existence.
And I think for the philanthropic space, this is a time for funders, programs to dream. Like you said, we are in a battle of imaginations. We have been living in a imagination constructed by white, cis-heterosexual men that has everything tilted towards their ascension and their retention of power. That is not debatable. That is quantifiable and quantitative. And so, how do you dream and imagine yourself outside that construct? And you have to if you’re part of a marginalized community because you need every day to wake up and find something and choose joy. We celebrated Indigenous people yesterday. You wake up on the land where you are witnessing the rolling Holocaust that has decimated your people for five and six centuries. But you finding joy, and you’re dreaming for that other day. You’re a person with a disability who literally gets, if you’re lucky, $1,100 a month, and you’re dreaming on how can I survive? How can I get a PlayStation? How can I get a juice? So, there is always dreaming.
Where we are having problems is that there is a subtext that our humanity isn’t really human; we’re not really the epitome of what human existence should be or can be. And thus, people are making those cost benefit analyses about, “Well, the Negroes is gonna die anyway, so maybe let’s give them this.” Or, “We would love to help you, but we’re looking for something with a more impactful presence.” And that is not, you know, for collective liberation, I can’t fight for the disability rights to be elevated and not talk about my rights or talk about women’s rights or talking about reproductive rights or education or how do we push for recidivism? So, the dreaming is there. It’s just making sure that we can help people get over those barriers that try to often crush those very dreams.
VALLAS: Oh, Keith, there’s so much there. And I could just sit back and listen to you talk all day and be a happy and much smarter person for doing it any time we get together.
VALLAS: But I love so much how you put one particular piece of what you just said, talking about how being told that your dreams aren’t realistic, right? Because, boy, does that just say everything about, in so many ways, our modern sort of policymaking sector or philanthropic sector or whichever component of reality creation you wanna dive into, right? The notion that a dream isn’t realistic. Well, I would just say to anyone listening—and I know we have a lot of folks who are public policy advocates of various types who listen to this show—if the dreams that you are out there pursuing are realistic, then you’re not dreaming big enough!
JONES: [laughing] That’s right!
VALLAS: Because that means you are working within the status quo, and that is not the same as dreaming. So, Keith, I love how you put that. And that’s really, that’s exactly why we wanted to have this series of conversations on this podcast, was explicitly to get out of talking about how we work within the existing system to tinker at the margins, or how we cut poverty just a little bit, right, which has been the North Star of the economic policy movement for so long, particularly in Washington, DC, versus actually asking the bigger questions, like, I don’t know, how might we have an economy where everyone belongs and has enough to be able to afford a basic, dignified standard of living because we’re all humans? Which is maybe a different way of seeing the world than, say, only people who are working a certain amount or have a certain work history are deserving of assistance, which is the current model we have, the current paradigm we have, which is founded on worth coming from work.
Cokes, I wanna bring you back in here as we kind of continue this conversation, and we’re bringing back in some of the limiting beliefs parts. And so, I wanna go there ‘cause both of you have referenced really a great real-time example. So, maybe that make this a little more concrete for folks who are like, “Cool. I’m down with the idea of identifying and making visible collective limiting beliefs so that we can release and replace them. But what does that mean in the context of this ‘your work is not your worth conversation’? And what does that mean for, say, the disability community?” One very salient real-time example, and Keith, you started to bring this up by talking about disability insurance and how most people aren’t getting much more than, say, $1,100 or $1,200 per month to try to live on if they’re lucky enough to even be able to access those programs. But Social Security Disability benefits are actually a great example of the worth being tied to work for many reasons. But one that I will lift up right now is maybe an example of some of what we’re talking about, and that is that we have two programs.
We have SSI, Supplemental Security Income, which is actually celebrating its 50th anniversary in just a few weeks, and Social Security Disability Insurance. They’re both parts of the Social Security system, but Social Security Disability Insurance, which is a much more adequate, if still inadequate program and provides people thousands of dollars a month, potentially, relative to the max, which SSI brings you to no better than just over $800 a month if you’re lucky enough to receive SSI. SSDI is only for people who have a work history. It’s for people who have enough work to, we’re just gonna call a spade a spade, be considered sufficiently deserving to receive Social Security benefits, right? That’s actually the line that we’ve drawn. And SSI is a program that Congress has largely forgotten for 50 years and left to wither on the vine, not even updating key elements of the program like asset limits, which you were referencing before, Keith, which have stayed stuck at $2,000 for literally as long as I’ve been alive. I was born in 1984 for context. SSI is the program for people who don’t have a work history. And so, there you’ve got, okay, well, at best, you’re gonna get three quarters of the federal poverty line to try to make ends meet, and it’s not gonna be enough to afford housing anywhere in the country. But hey, that’s what you get if you don’t have the work history. I can’t think of a more clear example of the kind of binary that we’ve created in our society and in our policy fabric than that set of programs compared side by side and the work eligibility rules as the core of which one you get, whether you’re the good kind or the bad kind of disabled person. So, just want to offer that up and see what other threads you guys wanna pull on or examples you wanna offer of how the “your work is your worth” limiting belief shows up in modern-day American society and especially for the disability community.
COKLEY: Vallas, you hit on SSI and SSDI, I think that are very valid examples. And to build on that, I would talk about housing and talk about the fact that we know that over one third of accessible Section 8 housing units are not in the hands of disabled people who actually need accessible units. There’s no requirement that accessible units go to people that have accessibility needs. And so, it’s one of those things where it’s like, okay, great. You have this $1,100 check. What kind of housing can you access? Oh, you can access this, but we have no way of telling whether or not you’re gonna have an accessible unit ‘cause we also don’t have a database, really. And oh, you wanna be an entrepreneur? That’s great. But did you know that the Small Business Administration doesn’t include people with disabilities as a marginalized community who’s eligible for minority small business loans. But yet they include veterans.
And so, when you’re getting into that conversation about who is deserving versus undeserving, I think that there is a real interesting conversation around the notion of veterans needing supports and just regular civilian disabled folks needing supports. And when we think about how these lines are drawn, and then what these lines do is they perpetuate the silos between these communities. I mean, just as we’ve seen, as I mentioned with federal budgets, an administration could decide that Down syndrome is the trendy disability, and so we’re gonna put all our money in Down syndrome. Next administration comes in and says, “We’re gonna take all that money from the Down syndrome community, and this year, you know what? We’re gonna give it to the autism community. But we’re not gonna give it to autistic people ‘cause, Keith, you know autistic people cannot handle their own money. We’re gonna give it”—
JONES: [laughing] Right, right!
VALLAS: —“to well-meaning, non-autistic, able-bodied white folks to tell us and to design programs based on what they know that autistic people need.” So, now you have the folks in the Down syndrome community pissed off at the autistic community, and rightfully so. And so, these systems, they’re designed in such a way that we don’t get to dream. We are a widget. And when you wanna break out of the widget, people don’t know what to do with you. And I think you can look at Britney Spears and Paris Hilton being flag wavers for the disability rights movement this last year, pushing back on guardianship policies and pushing back on those really terrible mental health and behavioral bootcamps. And they have a hell of a lot of privilege to do that. But I think about the hundreds of thousands of Black and brown and LGBT and immigrant disabled folks that don’t have Paris or Britney’s access and privilege that are still being subjected to these programs.
JONES: And that part right there. It’s the sexy disability this month over the arc. And I heard a birth date in the ‘80s, so I’m just gonna keep my gray hair to myself. But when you talk about this space, over the course of my life, there have been sexy disabilities. That’s the way I see it. Because I grew up in the age of the Easterseals telethons, with Jerry kids. We’ve had these things where, you know, and that was a huge thing for a long time. And so, when you talk about how do we get to the point where we’re talking about economic liberation for persons with disabilities, here’s the case example. We literally are less than a month out from elections. Not a politician is talking about the fact that there are policies that are incongruent across CMS, Center for Medicaid and Medicare [Services], HUD, Social Security, the Veteran’s Administration. There are no, like, it’s almost like people went in intentionally and saying, “This month my son has, my son has autism. So, this crowd needs to be much more important.” “No, my son has mental health challenges, so this.” “No, my son.” And it’s never looked from a how can I support my community to live the fullest life possible within the context that they self-define? That’s never been the way we’ve addressed policy. And policy in the United States, for as long as there’s been a United States, has never been geared towards solving and/or eradicating the problem. It’s always been what is the most politically expedient?
The New Deal, as you point out, was absolute, but it was a white man with money. My grandparents and my people coming from sharecropping, we didn’t get it. First Nation people didn’t get any of that. You jump, we’re in 2022. We’re having people declare pandemics being over while offering booster shots. The people who are at the top of the CDC list are the ones who are gonna die first for us. And so, how do you find joy, and how do you talk about collective liberation and economic liberation for the disability community when there’s cognitive dissonance about the things that they needed to be in place in order for that economic justice to happen? And so, I think the dreaming, the policymaking, the shortsightedness, those are all real solvable. We could do it today because it really is a choice. Are you gonna continue to intellectualize your biases and your racism and your ableism to underpin the reason you’re not giving money to particular groups, you’re not educating particular segments of our society, you’re not giving us access to affordable, accessible housing?
Those policy decisions and those actions in intentional spaces are derived from intentional conclusions about the value of our humanity. And that’s the challenge that we can have going forward, it’s because, again, people look at us, it’s like there’s this moral compass. Like, if we do it, we’ve helped you poor, pitiful people. Versus saying in order to have a stable, successful, forward leaning society, we need to make sure that everybody has the access to what they need in order for this society to be that. What’s the old saying? The greatness of the society is judged how it takes care of the least among them. And so, if that’s not reflected in our work and our policy, it’s not impossible. We just get people to do that.
VALLAS: You spend some of your time and life on Twitter. I’m just gonna acknowledge that.
VALLAS: And you’re one of my favorite people on Twitter. There’s a lot of folks that I can honestly take or leave on Twitter! [laughs] I spend a lot less time on Twitter than I did at other points in my advocacy work, but you’re one of my favorite people on Twitter. And part of what I really enjoy that you spend a lot of your time doing is actually jumping into conversations with folks that you may or may not know who are in Twitter spaces gathering within the virtual disability community, which is very active in a number of different Twitter spaces. And you often jump in, and you sort of help provide a little context or a pep talk sometimes or a personal story from your own work that just from my witnessing the influence that can have sometimes with folks that may follow you and who may not know you in real life, but who obviously are huge admirers of your work, as we all are—to know you is to be a huge admirer of Rebecca Cokley’s incredible work—but the impact can be really significant sometimes.
For example, as I saw in a recent Twitter exchange kind of late at night, I saw you hopping in, and there was somebody saying what a terrible day they had had at work and how much it had really eroded their confidence and what a toll it had taken on them, because it had been just a really, really terrible, ableist day at the office. And you jumped in, and you said—long way of saying, and this is why I’m telling this story—“Your work is not your worth. You are so much more than your work.” And you kind of offered, I think, the pep talk that this person needed in that moment, but in a very visible way and with some sharings about bad days you’ve had at the office that don’t make you any less fabulous and worthy and inherently deserving as a human.
And so, I bring that in for the last portion of this conversation, which I’m sad is coming to a close, to note that I think there are probably a lot of folks who are listening who might actually take this conversation at multiple levels. And with the words of a mentor of mine ringing in my ears as I have multiple of these conversations for Off-Kilter, a mentor said recently to me that living in this time in human history is either an affliction or an assignment, words that really landed with me, as in a lot of ways what I think a lot of us who do this work kind of need to hear right now. I’d love to give both of you the chance to close in the last few minutes that we have. And I’ll start with you, Cokley, since I feel like you were just offering a little bit of this advice the other day and often do on Twitter. I’d love to give each of you a chance to share whatever advice and wisdom you have for advocates who are working in this moment who are looking to accept that assignment, but who maybe are trying to figure out how to find their place in the work and in a way that doesn’t then cause them to define their worth by it. Cokes, I don’t know if you wanna pick that up first.
COKLEY: I’m reminded by something that Senator Duckworth said several years ago at CAP, actually, where she talked about—and I know it’s a military slogan—but she talked about embracing the suck and the fact that there are days that it really sucks. And I think, honestly, just as disabled people are expected by society to be willing to tell our worst-case scenario stories as a mechanism for obtaining assistance, we’re also meant, on the flip side, to be like shiny, sunny, happy people and act like it’s not all bad and are often asked, “Where do you find hope?” And there’s gonna be days when it’s really damn hard to find hope. And so, I think a) embracing the suck is actually very liberating, acknowledging the fact that there are days it sucks. I had a moment last week at the office at a public event where I was in conversation with my dear friend David Johns. And he says to me, “Sis, do you realize that person behind you is taking photos of you while we’re in conversation?” And I remember being like, “[bleep], are you serious?” Not only is this happening, this is happening at my place of work. What do I do in these moments?
And I didn’t used to talk about these things. I never used to talk. I used to be like, I have to put forth this image that I’m capable, that I don’t deal with these things, or I shrug them off when I deal with them, when I encounter them. And it was honestly—and I give this person a lot of credit—it was honestly Lydia Brown over at the Center for Democracy and Technology, who I’ve known for years. And I watched Lydia’s radical vulnerability in talking about when things don’t work out, and it really empowered me. I struggled with talking about it, and it was watching Lydia openly talk about when a funding application doesn’t work, or an interview for a position doesn’t work, or you get quoted wrong in a media piece. And I found it really, like, I was in awe of them. And I was like, “Oh my.” And I reached out to them, and I said, “I never thought about talking about when shit doesn’t work.”
COKLEY: And I think that actually gives us power because it reminds us why we’re in this fight. And I think for those of us with more visible profiles, there is a value add to being vulnerable and acknowledging the ableism we deal with, because I think for so many of our young professionals and our younger folks starting out, they think, “Oh, once I get to a certain level, like, if I’m good enough, they’re not gonna discriminate against me. If I’m like, what do I need to do to get to a place where I’ve overcome ableism?” And it’s like, “Nah, they’re still gonna snatch you from behind and beat your butt when you turn the corner.”
COKLEY: “They’re just waiting for you.” But I do think that’s powerful. I’m gonna pass it to Keith.
VALLAS: And, Keith, you’re gonna get the last word in the last couple of minutes that we have. So, make it good, which you always do!
JONES: [laughs] I guess, Rebecca, you laid it out. It’s like in this work, how do you distinguish your worth from the work? I submit to a lot of people that your worth is who you are versus what you do. If you’re in this work, you’re not in this work because you’re gonna get rich. My bank account is screaming that every day. And that so, when you go into these places and you reach these levels, it is incumbent upon us who’ve gone before you to reach back and to give you the tidbits. And so, I try to commit as much as I can, but reminding people that, yes, certain disabilities get you in certain places where people can, “Oh! I didn’t know you had a disability. Oh, my God, you’re so amazing.” If I get another inspirational quote because I’m getting the damn coffee, I may lose my mind! But it’s really for those people in this space or even for the people who are working in this space who are your listeners. The way I ambulate, the way I listen, the way I see, the way I communicate, the way I process information is a part of my humanity. It is not a deficiency. It is not a detraction. It is my humanity. What is more important is that anybody who looks at you and takes a sliver of your identity in order to devalue the entirety of your identity, that doesn’t rest with us. That rests with them. And I’m quite clear when I tell people, “You get no passes for stupidity. You don’t get to say, ‘I had unconscious bias’.” Everybody knows what they don’t like. So, you need to embrace the fullness of yourself and stand in yourself, because somebody along with me is gonna pick something out about you that they don’t like. That ain’t your damn concern.
What is your concern is how you move through the space and hold yourself to what your ethos is ‘cause nobody else wakes up in your body but you. So, how can you hold true to yourself, even in the face of weathering racism, ableism, xenophobia, transphobia, holding true to the ethos that your worth is defined by how you carry yourself and how you love your own humanity in expression with others? That’s the way that we get through this kind of work because this is not about money. This is about us getting to the other side so the movement does not need to exist. Just the movement of embracing and loving our humanity.
VALLAS: I can’t think of a better place to end this conversation. And Keith, you should say also, the movement towards the party you’re gonna throw, right? ‘Cause didn’t you promise to throw a big party once we get there?
JONES: Oh, baby! Drinks, all kinds of things we can’t say on the radio, so we don’t get you kicked off the air.
JONES: But no, the running joke is we’re in the movement, but where is the movement going, and what is the end result of the movement? The movement shouldn’t consistently keep moving. We need to have a destination, and hopefully at the end of that destination, Rebecca and I and you and the rest of the community will come together and party for collective liberation.
VALLAS: Which is a party I am very, very much looking forward to. I can’t think of a better place to end this conversation, much as I would love to keep having it for another hour or two with both of you.
Keith Jones is a disability rights and justice advocate, also, the president and CEO of SoulTouchin’ Enterprises. Rebecca Cokley is the disability rights program officer at the Ford Foundation and my partner in crime on so many projects. We obviously can’t stay away from each other. Cokley, Keith, thank you so much for taking the time to have this conversation, to get into some of these topics, and for all of the work that each of you do. And for folks who are looking to learn more about each of your work, I’ll send them to our show notes as always for some links. But just sending all good wishes to both of you and looking forward to being in real space, in physical space, with both of you at some point soon, I hope. [theme music returns]
JONES: Yes. Thank you so much for having me.
COKLEY: Sounds good.
VALLAS: And that does it for this week’s show. Off-Kilter is powered by The Century Foundation and produced by We Act Radio with a special shoutout to executive producer Troy Miller and his merry band of farm animals, and the indefatigable Abbie Grimshaw. Transcripts, which help us make the show accessible, are courtesy of Cheryl Green and her fabulous feline coworker. Find us every week on Apple Podcasts, Spotify, or wherever you get your pods. And if you like what we do here at Off-Kilter Enterprises, send us some love by hitting that subscribe button and rating and reviewing the show on Apple Podcasts to help other folks find the pod. Thanks again for listening and see you next week.