With the Senate announcing they’re heading into recess without passing the Build Back Better Act, we figured why not get out of the news cycle for Off-Kilter’s last episode of the year and instead have a far more good-news conversation that Rebecca Vallas has been meaning to have for a while with her dear friend Rebecca Cokley about what she’s got underway at the Ford Foundation, in her history-making new role as the first program officer to head a U.S. disability rights portfolio at a major U.S. foundation.
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REBECCA VALLAS (HOST): Welcome to Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by The Century Foundation. I’m Rebecca Vallas. With the Senate announcing they’re heading into recess without passing the Build Back Better Act, I figured why not get out of the news cycle for Off-Kilter’s last episode of 2021 and instead have a good-news conversation that I’ve been meaning to have for quite some time on this show, and sit down with my dear friend and colleague, the one and only Rebecca Cokley, who is the program officer in the Office of the President who manages the U.S. disability rights portfolio for the Ford Foundation.
And this is a conversation I’ve been wanting to have for quite some time because in that role, Rebecca Cokley is the first-ever program officer at a major foundation in the U.S. who oversees a portfolio dedicated to U.S. disability rights. And I’ve been eager to give her an opportunity to talk a little bit on Off-Kilter about what she’s got underway in that exciting and historic role.
So, Cokes, I’m really thrilled to have you back on the show, and finally, for an extended sit down about this really important topic.
REBECCA COKLEY: Thanks, Vallas. It is so wonderful to be back here on Off-Kilter just like the good old days. It’s great to be in conversation with you as always.
VALLAS: I really do miss those days when we were at least in the same radio studio, and we could sit there and do those things we called Disability Justice Initiative takeovers of Off-Kilter. So, I think in some ways this is kind of in that spirit.
COKLEY: Definitely. Definitely. Let’s get into it.
VALLAS: Well, so, I feel like the place to start is to say you’re now at the Ford Foundation. That’s a role that you’ve been in now for about a year, maybe a little under a year. What is time? Time is a flat circle in the COVID era. But I think it’s about a year. And I’d love to give you an opportunity to talk a little bit about what the Ford Foundation is, how the institution operates, and sort of at a top-line level, how the disability work fits in before we get into what you’re pioneering there in that new role.
COKLEY: Definitely. Thanks so much. The Ford Foundation is one of the storied foundations in the United States, founded by Henry Ford and the Ford family, and has had a variety of different priorities over the years. The foundation itself has both a U.S. and an international focus, or global focus, as we call it. And when our current CEO, Darren Walker, joined the foundation back in 2015, he really set forth a focus for the foundation’s work that centers on social justice. And when he issued his initial press release, talked about LGBT equality, talked about racial equity and racial justice, talked about immigration issues and gender issues. Disability wasn’t at the table. And Vallas, I’m sure you remember well—we all remember well—that there was a significant outcry from the disability rights and disability justice communities, saying there is no justice without disability. There is no equality or ending of poverty without centering disability in those conversations.
And to his credit, and to the credit of the Ford Foundation, they took some significant time to unpack their bias and to sit and think about not just why should they fund disability work, but why haven’t they to that point? And part of that conversation, as you and I remember well, was them bringing in people to talk to them and them joining conversations like the ones that we had hosted back at the Center for American Progress, with funders looking at engaging on disability issues. And to their credit, they started by bringing in some phenomenal consultants: Catherine Hyde Townsend, who pre- or prior—eh, I can’t even talk—prior to her time at Ford, was at the Wellspring Foundation, and Judy Heumann of Crip Camp and Section 504 protest fame, to help advise their work, which was largely directed by Noorain Kahn. And then in January brought me onboard to helm an actual U.S. disability rights portfolio, so in addition to Ford dedicating funding across all of its existing program areas to disability.
So, for example, in our natural resources and climate change portfolio, there are disability-centered grants. Within our civic engagement and government portfolio, there are disability-centered grants. They dedicated this specific fund out of the Office of the President (it’s an $8-million fund) specifically to funding disability rights and justice work with a focus on both organizations that are led by people with disabilities with a disability focus, as well as sort of an inclusion model looking at what organizations may not necessarily do disability work, but wanna actually start expanding their work to be more inclusive of people with disabilities.
VALLAS: And if I remember correctly, that announcement, which really was the Ford Foundation leading the way within U.S. philanthropy in a really big way and with a pretty huge megaphone, was not just the creation of a disability rights portfolio, again, for the first time at a major U.S. foundation, but was also an announcement that they were going to specifically and explicitly make clear that disability is a priority across their other issues within the foundation, and that a certain percentage of the grants that come out of each of their other programs would also explicitly have some kind of disability lens or intersection. Am I remembering that correctly, and is that still in force?
COKLEY: Yes, you are, and yes, it is. My role at the foundation and the portfolio that I manage is in addition to the grantmaking that’s been happening for the last several years across all of our programmatic areas, across both our U.S. programs and our international programs. And so, just as there’s this very explicit work happening on the ground in the U.S. that we’re funding, my counterparts across the foundation, not just in the New York office either, but across the world in our various offices have a dedication towards ensuring that funding the disability rights and justice communities is one of their priorities as they make grants.
VALLAS: Before we get into talking about what your funding strategy is and some of the work that I know you’re really excited and I’m really excited that you’re seeding and that you’re growing there at Ford, I’d love to actually get into a little bit of story time with you about what things looked like before Ford took this step within the U.S. philanthropic sector. And I say that in part—and I wanna kind of roll back the clock here a little bit—in part because for folks maybe who don’t work in the disability space and who maybe work in other sectors, but are somewhat aware of how, in recent years, we’ve seen more and more attention paid to how every issue is a disability issue, a clarion cry that you and I and others have made for some number of years leading up to finally seeing, say, the likes of Senator Elizabeth Warren make that just a regular talking point or Congresswoman Ayanna Pressley and others.
So, for folks who sort of don’t quite remember a time before there was this broad, and I would say increasingly, pervasive understanding that every issue is a disability issue within U.S. policy circles, there was a time when funders in the U.S. pretty much said, “We don’t fund disability,” right? I’m putting kind of big quotes around that as the standard response that you and I actually received back in the day when we were first starting to seed some of this work at CAP. Tell a little bit of the story of what things were like back then and what you see as some of what’s allowed that to shift, much of which has had a lot to do actually with work that you’ve been leading the way on, including at the Center for American Progress, where you and I used to be colleagues.
COKLEY: Definitely. I think in the early days—back in the day!—I’m thinking about even my earliest days in the D.C. non-profit space, I remember foundations coming to the non-profit that my husband and I both used to work at, both got our starts at in D.C. That’s a 50-plus-year-old education policy non-profit. And the foundations would come through, whether it be Ford, Atlantic Philanthropies, Robert Wood Johnson, sort of like all of the usual suspects, and they would wanna hear about the programs that the non-profit had. And the program that we had that was growing the largest, that had some of the most significant policy outcomes was a technical assistance center funded by the U.S. Department of Labor to move the needle on employment outcomes for people with disabilities around providing technical assistance in the employment space.
And the minute we would say the word “disability,” the funders would just like, the light would vacate their eyes. They would suddenly find some important note that they needed to scribble in their peachy folder, and they would very quickly, when it came to the Q&A section of the conversation, direct all questions to the non-disability programs and very quickly say, “Well, we don’t fund disability.” And I really remember just feeling really crappy about it, quite literally, I mean, as a redhead, feeling like the stereotype redheaded stepchild of the non-profit space. Because it also led to folks not wanting to have disability programs in the room for pitch meetings with foundations because they saw us as a distraction from them being able to receive the funding that they wanted. And so, it was really problematic.
And I think that over time, and in particular, I do give a lot of credit to what we saw building up to 2020, sort of the mobilization of the disability community around the Affordable Care Act fight, the advocacy by groups like National ADAPT, Little Lobbyists, the Center for Public Democracy, and all of our partners on really being strategic and being visible out there, putting our lives on the line, being dragged out of wheelchairs, having our heads dropped on the marble floor of the Rotunda in some cases for a number of activists, and really reminded people of the power of the disability community, not of us as victims or as those people suffering, but as a visible reminder that this is the community that got the ADA passed. This is the community that was responsible for the longest sit-in of a federal building in United States history. And funders and others definitely took notice.
And I think building off of that, going into the previous administration, we were ready to keep fighting because we haven’t stopped fighting. And seeing the visibility of the community pushing back on every bad rule or regulation, watching the community organize on public charge, which, you and I have talked about how historic that was, that we had never seen the disability rights or justice communities engage on an immigration fight until that moment. And it really makes—
VALLAS: And just to remind folks what that is, that was, of course, a Trump-era attack on immigrant families that was using actually centuries-old immigration laws as something of a cudgel in a whole range of policy spaces, including threatening people’s well-being by taking away public assistance, health insurance, but also effectively threatening to keep people with disabilities out of the country because of sort of blowing up that centuries-old policy in immigration law to be not just a ban on people who were considered “likely to become a public charge,” antiquated language, but also people with disabilities explicitly.
COKLEY: Definitely. And I think going into 2020, as we saw, I mean, I remember in the early days of talking about the 2020 primary, you and I saying, “Well, if we’re lucky, we will get maybe two or three candidates to develop a disability platform, or maybe we’ll get each candidate to move the needle on sub-minimum wage and HCBS, Home and Community-Based Services.” Those were the two things. I remember us sitting there and being like, if we walk away with every candidate talking about those issues, we’d won something. And it was the opposite.
I mean, we had 12 candidates, including Senator Warren, including Secretary Castro, Vice President Harris, Senator Sanders, and others really develop thoughtful, comprehensive cross-disability community-informed plans, and it still sort of boggles my mind. And I think the attention that you duly noted that was paid to that, I mean, we saw a question asked about disability engagement at the debate. We saw reporters post-debate talk about Crip The Vote. There were things that we thought were maybe 5 or 10 years off that we saw come out of 2020. And I do think that it caused, obviously, forward stepping into the space. But obviously, seeing the public discourse around the disability community and the issues that matter to them increase at a mass and a volume that they previously hadn’t seen really caused a lot of funders to sit up and take notice.
VALLAS: And that was all sort of what led up to then the Ford Foundation actually bringing you on, poaching you effectively (sorry, CAP) from the Center for American Progress, where you were leading the Disability Justice Initiative, which itself actually was the first of its kind in being the first ever dedicated disability project at a U.S. think tank. So, from one history-making project, you step into another. Talk a little bit about what you’re building out at Ford. You actually just launched your portfolio and your program formally this fall, I believe in October. Talk a little bit about what you’ve got planned for the new year and some of what you’ve been doing already in terms of starting to support some of the work out there in the field.
COKLEY: Vallas, it’s been so incredible. Quite literally three weeks after I landed at Ford, back in January of this year, we had the responsibility of pushing out funding from Ford’s social justice bond to the disability rights community. For those of you that weren’t aware, the Ford Foundation issued, freed up $1 billion to the social justice sector during the pandemic to help stabilize the organizations that so many people in this country depend on for the preservation of their rights, for their very survival in a lot of cases. And so, I hit the ground running, moving social justice bond dollars out to the field. And then what we quickly moved into was the development of what our U.S. disability rights program strategy was going to look like, and we decided to do something different. We decided to do something very participatory.
We pulled together a series of roundtable conversations, what we called Disability Community Strategy Consultations, with roughly 50 stakeholders from across the community. This included people with disabilities that work in the Disability Cabbage Patch, as I lovingly call it, people with disabilities that work outside of the disability community in progressive spaces, in social justice spaces, people with disabilities who started out as activists and are now elders or yelders (young elders) in our community. We were thrilled to bring together family members and siblings. Because it’s important to remember that in the earliest days of the disability rights movement, our people were locked up, our people were institutionalized, our people didn’t have rights, and so the early foundation of the community, even though it’s evolved quite a bit since then, was the role of parents and families. And to sit down and say, “What should we fund? What works and what doesn’t work? Where could we yield the greatest impact?”
And I think hearing directly from people that the first thing we really needed to do was combat the disability-poverty nexus, which you and I have talked about forever. It’s its own little ouroboros or self-eating snake where poverty and disability as you— Vallas, I swear it should be your own hashtag, disability is a cause and consequence of poverty. And knowing that we couldn’t get to that without a field that could drive the kind of change that we needed. And so, really going back and forth between how do we build the field of current and next-generation disability advocates to be able to push for the kind of change to drive economic justice for the disability community?
VALLAS: And there’s so much that we could get into there. But I feel like one thing that we’re probably remiss in doing, and which we did actually for the first episode of Off-Kilter’s relaunch with The Century Foundation earlier this year, an episode were where you were joined by Judy Heumann, who you mentioned before, who is really one of the godmothers of the disability rights movement, as well as Mia Ives-Rublee, who is now actually heading up the Disability Justice Initiative at CAP. So, I’ll send our listeners back to that episode from early September of 2021 for a little bit more of some of the ancient history in the decades leading up to now, the modern disability rights and disability justice movement and conversation, but also for some of the kind of basic facts and figures.
But I realized for purposes of this conversation and with folks listening right now who maybe haven’t heard that earlier episode, it’s probably worth just doing a few of kind of the basics, the 101: how many people in the U.S. have disabilities, how many families are impacted by disability. Because all of that is what is just such a huge, it underscores how absurd it is that it’s this recent and this historic for a foundation to actually isolate disability rights and say, “You know what? We think that should be one of our focuses.” And also, why it’s absurd that it took this long for a major think tank like CAP to also launch that type of project dedicated to disability policy. So, the top-line statistic is 1 in 4, but talk a little bit about what disability looks like in America and how you define disability, for folks who may not be familiar.
COKLEY: Thank you, Vallas. I think that’s a really great question. And I think the power of the definition of disability is the fact that it is forever evolving. When the definition was set in stone in the 1990 legislation, the Americans with Disabilities Act—and I always give credit to Congressman Major Owens, who was very much focused on the definition—they determined that to qualify as a person with a disability, it was any person who experienced a physical or mental impairment that impacts activities of daily living (which obviously vary depending on who you are and what those activities are), a history, or a record of such impairment. And that’s really, that latter half is really important because it means that if you are a cancer survivor, you still count. If you have a condition that is a chronic illness that flares or comes and goes, for example, for me, my migraines. My migraines are not a constant, but when they come, they definitely knock me on my butt. My migraines count as a disability because they do have that impact, and my migraines are just as valid as my dwarfism, you know?
And so, I think when we think about who counts in this box, in this really broad box, or under this very large umbrella, depending on the metaphor that you like, it is people with sensory impairment: so, the blind community, the D/deaf community. It is the neurodiversity community: so, folks with learning disabilities, the autistic community. It is people living with mental illness. It is people with mobility disabilities and mobility impairment: So, people with dwarfism, people who are amputees, people who may need a mobility device to move around either permanently or if they’re an ambulatory wheelchair user, they still count. And it’s also those conditions that have always been treated a little bit more murky that have been discriminated against: Things like Crohn’s and IBS, eating disorders count as a disability. I was really thrilled to watch the Congressional Black Caucus last month do a luncheon discussion about the impact of fibroids on Black women as a major health condition. And there’s a lot of buzz on it right now, given a recent episode of the show Harlem and a number of characters talking about experiencing fibroids.
And I remember being at the Women’s March Annual Conference and asking how many people identified as people with disabilities, and a smattering of hands being raised and then asking, “How many of you experience a major health condition that you’ve been told is all in your head or you’ve been told that your doctor doesn’t believe you?” And a whole bunch of hands went up, and fibroids are one of those conditions, just like myalgic encephalomyelitis, otherwise known, or previously known as chronic fatigue syndrome. Which leads us into the fact that we’re talking about roughly 61 million people pre-COVID. And that’s really important because when you think about the fact that the data tells us that roughly one third of people who have experienced COVID will have long-haul COVID, we’re talking about a minimum of at least 20 million newly disabled people in the U.S. alone. That is the biggest disability population bump likely ever. And so, how we think about who counts in this conversation really does matter.
And when we’re talking about the nexus of poverty, as you hinted to, we’re talking about the fact that I mean, disability is present in one third of households in this country. One third of SNAP recipients who receive nutrition assistance are households that include a person with a disability. The number one third keeps popping up, and I think we need to do something around that.
COKLEY: One third of GoFundMes in this country—and this is my boss, shoutout to Darren Walker, this is his favorite and least favorite statistic—over one third of GoFundMes in this country are for a disability-related expense that insurance doesn’t cover. One third of GoFundMes for something, it might be a new wheelchair for someone. It might be getting your home modified to be made accessible. It might be an airline ticket to be able to go see a specialist to finally get the answers that you and your family need, but it’s not covered by current insurance policies.
VALLAS: And you mentioned disability being a cause and a consequence of poverty, which is another one of those sort of truisms or phrases that one sort of hates to have to continue to repeat over the course of many years because it continues to remain true. But a little bit of what that means for folks going, “Well, what does it mean for disability to be both a cause and a consequence of poverty?” Well, it’s a cause because disability can lead to job loss, to reduced earnings, it can present barriers to education, and it comes with lots of significant additional expenses, something that many people in the community call a “disability tax,” all kinds of things that can actually cause economic hardship. But it’s also a consequence because poverty can limit access to healthcare, to preventive services. It can increase the likelihood that someone lives and works in an environment that can adversely affect their health and on and on. So, you often say, and I often say, poverty and disability unfortunately go hand in hand in the United States.
And some of the statistics that result, to add to some of what you were starting to throw on the table there, include that half of all working-age adults who experience at least a year of poverty have a disability, and about two thirds—so, I’ll see your one third, and I’ll raise you another third and say that—two thirds of Americans experiencing longer-term poverty have a disability. So, the statistics continue, but we don’t wanna make this just a laundry list of stats. But it is a lot of why we cover disability as much as we do on this show, because disability and poverty really do go hand-in-hand in the U.S., even though we are 31 years after the signing of the Americans with Disabilities Act or ADA.
Cokes, you started to get into something I would really love to hear your take on and which actually, I don’t know that you and I have really talked much about off the air either, so I’m legitimately interested to hear your thoughts on this. I’m curious your read on the changing politics of disability in the COVID era. You started to mention that we’re on the brink of, or possibly in the middle of, the largest influx of new entrants to the disability community in modern history for certain, possibly ever in U.S. history, as you speculate. And obviously, researchers don’t have a great handle on some of the numbers yet, but some of the estimates that are out there seem to make that statistic seem more than certain at this point.
Talk a little bit about what you see as the influx of COVID long haulers doing to the disability narrative, the disability conversation, and the disability policy conversation in the U.S., one that has, despite the statistics that you shared, 1 in 4 Americans with a disability, somehow always really been a conversation of us and them, rather than a conversation of us. And I ask that question in part because of some of the particularly maybe cause-for-optimism indications we’ve seen because of so much more conversation about chronic illness in particular and disability with those types of numbers and so many people impacted, but also because of some of what I know I’ve seen as concerning in the form of the beginnings of what sounds a lot like gaslighting to people who are COVID long haulers who maybe don’t present with proven anatomical symptoms that can be verified with some kind of a blood test, which we know this society has often required when it comes to whether someone falls into the deserving or the undeserving bucket, when it comes to whether people are viewed as “being truly disabled.”
COKLEY: Vallas, I’m really glad you brought this up. This is really timely. I was watching the news yesterday around the conversation tied to what they’re calling Havana Syndrome, which is the illness that has been acquired by people working in diplomacy and international security spaces that they’re still trying to get a handle on what causes it. But they suspect it’s some type of high-pitched sound that impacts a person’s mental and neurological system. And there was a lot of press talking about how those people are now eligible for certain types of supports and services, and it kind of blew me away that I’m like, so, this new condition, which came on the radar over the last 5 to 10 years, let’s say, because I remember I was talking about it during the Obama administration, is now quote-unquote like somebody “rubber stamped it.” It is now fully credentialed as a disability. People believe these people that were initially told that this was psychosomatic or that it was all, it was something that they were imagining. And the administration has come out completely supportive of these folks, etc., which it should. And let’s be real. It should. This is a real thing that is having a significant impact on a certain section of the population, and it’s horrible what they’ve experienced.
On the other hand, I hopped onto Twitter and watched this series of threads from people living with long-haul COVID, talking about going into the doctor and being told that, “Oh, you’re just lazy. You don’t wanna work. That’s why you wanna go on SSDI. You wanna go on disability because you don’t wanna work because you have nothing to add, or you just wanna collect a check.” And they’re like, “But the symptoms I have are very similar to myalgic encephalomyelitis or chronic fatigue syndrome,” which has existed for decades. And watching the people in the ME/CFS community reply, “Welcome to the community. People still don’t believe our condition’s real.”
And we were really thoughtful in the first year of grantmaking and were really excited to be able to actually award a grant to ME Action, which was founded by Jen Brea, who is a phenomenal advocate and currently serves as an advisor to the organization. But we provided a grant to ME Action specifically to help provide supports, help train up this generation of long-haul COVID as advocates, help understand how to navigate both the healthcare bureaucracy and the policy bureaucracy in terms of thinking about how do you drive change for a condition that people believe that you’re making up or people believe that it’s too much?
I had a recent conversation with someone where they were telling me that they felt the disability definition was too broad. And they were like, “It’s too broad. You all let in everyone.” And I looked at them, and I said, “So, who do we kick out? Do we kick out the people with Havana Syndrome? Do we kick out the kids in Flint, Michigan that are 2,700+ days without clean drinking water and who have acquired skin conditions and learning disabilities as a result of lead contamination? Do we kick out the veterans? Who do you suggest we throw off the island?” If this is Survivor, who gets voted off?” And Vallas, you know I love making people feel very awkward in these conversations, and they couldn’t respond to me.
And I said, “Disability has always existed and will continue to exist and evolve.” And as Congressman Major Owens said, the power of the definition in the ADA is that it is broad enough to include everyone who counts, and it believes people. And I think that’s the most important thing, especially for people from marginalized communities. Whether you be LGBTQIA, whether you be a woman, whether you be a person of color or an immigrant, all of us from those multiple marginalizations have always been told that if we felt something was wrong with us that it was in our head or that it was something that we were, it was a lifestyle. It was caused by our lifestyle. And I think that there really is the need, and COVID’s gonna continue to push us to have this conversation about what’s real and what isn’t real. Let’s remember 40 years ago, we told veterans coming back from Vietnam that there was no such thing as Agent Orange. And we have a reckoning that we have to do as a country about trusting people in relaying their experience.
VALLAS: And I will confess that a domain of federal policy and federal administration of critical government programs that I’m especially worried about this type of response in is, of course, the domain of income security and in particular, Social Security Disability Benefits, which you mentioned, Cokes. It’s already incredibly difficult to qualify for disability benefits. We have the strictest definition of disability in the entire developed world, according to the Organization of Economic Co-operation and Development, or the OECD. And folks with COVID long-haul symptoms, not all of whom are being kept from being able to support themselves through work moving forward, but many of whom are starting to report that that is their reality and the consequence of having long-haul COVID are starting to turn to or attempt to turn to Social Security for what can often be life-sustaining income assistance. And I’m worried, and lots of other advocates are worried, particularly folks who are currently in legal aid or have a background in it like I do, that people with COVID long haul symptoms are likely to be systematically denied what are, in many cases, benefits that could be life or death for people, or the difference between being able to not have their home go into foreclosure and being able to keep a roof over their head because of not being believed and having their symptoms not believed because of the similarities to chronic fatigue syndrome, which you were describing, Cokes, and how folks with that diagnosis have been faring in the Social Security system to date long, long before COVID, which is to say not well.
What’s it like moving from activism—and you are a lifelong disability rights activist, as well as a second-generation civil rights activist as you often like to remind people in terms of how you came to this work—what is it like moving from being an activist to being inside of a foundation and playing the funder role, as opposed to the somewhat insistent and often loud and somewhat disagreeable (I say all of those things with great love) outside agitator?
COKLEY: It’s really funny because I remember when…I remember having a conversation with John Podesta, the founder of CAP, when he had called me shortly after I had given my notice, but he hadn’t heard that I had given my notice to come to Ford. And we were having a conversation. I said, “John, I’ve decided to take this role at the Ford Foundation.” And he kind of laughed, and he said, “Are you sure?” And I said, “Well, why?” He said, “Spending Ford’s money is more fun than giving it away to people to spend it.” And I remember kind of laughing and being like, “Well, that’s useful to think about.” And I think for me, this work has always been about having more clarity of vision in terms of what is the status of the world and what needs to be done to fix it. And coming up from the disability non-profit space, spending time in the Obama administration at HHS, at Education, and at the White House, running a federal agency, and then coming to CAP and continuing.
I think for me, the ability to pave a path in non-disability spaces for the generation to come after me is one of the most important things that I can be doing because those places were not open to us 5 years ago, 10 years ago, in some cases, even 1 or 2 years ago. And to be able to level the playing field for folks coming behind me, but also to be able to have a level of visibility that allows me to look at these situations and look at what the need is and hop on the phone with somebody and say, “Hey, this is a problem. What can we do to fix it?” And to have the bully pulpit of the Ford Foundation to be able to drive the kind of conversation, to be able.
I remember when I was at CAP having a conversation with Ford CEO Darren Walker about a meeting I wanted to convene. And I remember very clearly Darren saying to me, “Don’t host it in D.C., Rebecca. Host it in New York. Come to Ford and host the meeting.” And I remember kind of laughing and being like, “Yeah, but Darren, everyone’s in D.C. All the CEOs I need to get to are here in D.C.” And he said, “Trust me. Try this. Host it at Ford and see who shows up.” And honestly, I kind of thought he was silly, and there’s times I think he’s very silly. And he would probably say the same thing about me. We give each other a lovingly hard time every now and then.
And so, I decided to move the meeting to D.C. or sorry, to New York. And the minute I moved it to New York to host it at the Ford Foundation in one of the conference rooms—which is one of the beautiful things about working at Ford is the ability to make our resources and our space open and accessible to our grantees—every CEO signed up immediately. And I was like, well, maybe one or two will actually take the train to New York for this meeting. Every CEO showed up at that table to have the conversation we wanted to have.
And understanding the privilege that you have at a place like Ford to be able to convene the tables like that and to rest on the assertion that no, everyone will show up because it is at Ford. And how do we use that privilege for the communities that we come from to make things a little bit more equitable? To get the phone call from someone saying, “I’m really trying to reach out to X organization, but they blow me off telling me that they don’t do disability work,” and to be able to pick up the phone and call from Ford and say, “Hi. My name is Rebecca Cokley. I’m calling from the Ford Foundation. We have a real interest in engaging with your organization about disability rights and justice issues,” and they’ll take the call. They’ll have the meeting. And using that as a bridge that previously wasn’t accessible to the community, it’s probably one of the things that’s the most fun about the job, and it’s also probably one of the greatest responsibilities of the job.
VALLAS: So, I’m gonna switch gears, and I’m gonna ask you a somewhat lighthearted question, but it’s one that actually I would love to hear you talk a little bit about. Almost every single day, pretty much every day, you tweet to remind people to eat lunch, and you’ll tweet variations on the theme pretty much every day, “Hey, disability Twitter, what’s in your lunch box?” You’ll say a little bit about what you’re eating, and you’ll sort of remind people to eat. This is something that warms my heart every single time I see it, because back when you and I used to work next door to each other in the halls of the Center for American Progress, you used to come in and remind me to eat almost all of the time. And many of the times that I did manage to eat during the day were because you actually physically came into the office and said, “Vallas! Eat lunch!” So, it’s still something I fondly remember and flash back to whenever I see your little disability lunch tweets. Why do you do the lunch tweets? I think I know, but I would love to hear you talk a little bit about it, and I think I would love for our listeners to hear a little bit about why you think that’s so important.
COKLEY: So, the lunch tweets started because earlier in the year—it was in the spring. I wanna say it was like May, April or May—I logged on to a 3:00 Zoom, and my colleague and new author, Emily Ladau (who works with us through the President’s Council on Disability Inclusion and Philanthropy) Emily and I were on a call together. And I was like, “Hey, Emily, did you eat lunch today?” And she was like, “No, no, I just haven’t had time for lunch.” And I was like, “I didn’t eat lunch either.” I sort of paused for a minute, and I said, “Hold on a second.” And we were waiting for everyone else to join the Zoom.
So, I pulled up my phone, and I text messaged about 10 or 15 disabled women leaders I knew all over the country, all doing different types of work, and I said, “OK, lunch call. Who ate lunch today, and what’d you eat?” And these are vice presidents of tech companies, these are senior advisers to international monetary organizations, these are grassroots activists on the South Side of Chicago. It was a very varied group. It was a delightfully Cokley-verse group of folks. And every single person wrote me back and said they hadn’t eaten lunch. And everyone had a reason, and largely it was, “Well, I just had one more thing to do.”
And I reflected back on when I was at the National Council on Disability, and I realized that I wasn’t eating lunch. And I would go home, and then I would eat dinner. But I was hungry all day, and I wouldn’t eat lunch because frankly, I felt like I hadn’t done enough in that day to deserve to eat lunch. And it was a friend of mine from activist spaces who called me out on it and said, “You have an eating disorder. You’re withholding food. You’re starving yourself. That’s not OK.” And I remember it actually really being jarring and being like, well, is this an eating disorder? Do I have an eating disorder? And so, I made a point of starting to eat lunch on a regular basis back then, and I realized that in my role at Ford (and it wasn’t even due to the role at Ford, it was more than anything due to the pandemic) having a kitchen in your house meant you could all, at any point in time, I could go get food. It was always something that I would push off.
And I realized it was a real problem, and I realized that it was not only a Rebecca Cokley problem, but it was a problem because in me not doing it, I made it easier for my friends also to not do it. And I wanna build a community that’s better than that, that’s different than that, that’s better to themselves than that. And so, I just started tweeting about, it started, you know, colloquially just like being on a call and being like, “Hey, everyone. Who ate lunch today?” And continuing to reiterate that any meeting that I host, any conversation I host, even if it’s a pitch conversation, that folks can feel free to bring food and snack. That’s always, I’m always open to that, you know? But I really, I started tweeting it because I realized it was a thing. It was a problem.
And it’s been, Vallas, it’s been one of the funniest things. I get, you know, people tell me that they remember to eat lunch because I tweet. They remember to take their meds because I tweet about it. And there are other activists and advocates in the disability community, specifically on disability Twitter, that are phenomenal about reminding people to take their pills or to drink water, and I give them all the love and all the shoutouts. But it really, it became funny— And I’m not gonna lie. Probably the funniest response I’ve ever gotten to it was, well, first I had a couple of colleagues at Ford notice it, and we were on a call together. And we were talking about access intimacy, which is a term that Mia Mingus in the disability community uses to talk about your level of intimacy typically around disability-related issues and other people. And my good friend and colleague said to me, “It’s just like Cokley reminding everyone to eat lunch every day.” He’s like, “I eat lunch because Cokley tells the disability community to eat lunch.”
And then somebody else, actually, it was funny. I didn’t tweet for about a week when Patrick and I and the kids were moving, and I got a text from Congresswoman Katie Porter, who was like, “Hey, Cokes, is everything OK? I noticed you haven’t been tweeting about lunch this week.” And Vallas, I fell down laughing. It was the funniest thing on the face of the planet. And I was like, “Oh, everything’s cool, Congresswoman. I just happened to relocate. We’re living in Jersey now, and I didn’t have time to tweet lunch.” And she’s like, “I always use it to remind people I know. It’s like, ‘Have you eaten lunch today’?” She’s like, “We all watch for your tweet.” And it cracked me up to think that something as little as a “Hey, did you eat lunch today” could reverberate the way that it has.
VALLAS: Well, I appreciate it immensely, and I know lots and lots of other people do as well. But also, I appreciate the story behind it and also, you are often one of the people who reminds that eating disorders are another facet of the disability community and often are coincident in the lives of people with disabilities and chronic illnesses with other conditions. That has been my experience personally and something I’ve talked about on the show at different points and try to be more out about because of that being part of my history of chronic illness.
Cokes, we’re gonna run out of time not that long from now, but there are two last questions I wanna make sure to make time for before I let you go back to the Cokleyverse. And one of those questions is, are other funders coming along? And what does success look like for the initiative that you’re building at Ford, but with a lot of, frankly, replicability potential when it comes to the rest of philanthropy in the U.S.? So, are other funders starting to come along? What are you seeing in terms of the impact that Ford’s leadership here is having for the broader philanthropic community? And where are you hoping that this work goes in the next 5 to 10 years?
COKLEY: I’m so glad you asked that question. One of the parts of my job that I love is the fact that I also get to help staff what’s called the President’s Council on Disability Inclusion in Philanthropy. And Vallas, this is an initiative that’s co-chaired by my boss, Darren Walker, and by my other favorite foundation CEO, or one of my other favorite foundation CEOs, Dr. Richard Besser over at Robert Wood Johnson. And the goal of the council is to bring together funders that are dedicated to being inclusive of disability in their grantmaking and within their organizations. Part of what they have done in this work is to be a member of the council, each foundation puts in a certain amount of funding that goes to what’s called the Disability Inclusion Fund that’s based at Borealis that does participatory grantmaking to grassroots disability rights and justice organizations, which is hugely powerful. To date, there are 17 members of the President’s Council.
In addition to that group, there is a, earlier this year, the council issued a pledge around disability inclusion that did not require those that signed the pledge to contribute to the Disability Inclusion Fund but allowed any foundation that committed to being inclusive of people with disabilities and disability rights organizations in their grantmaking and their organization to sign on to this pledge and be part of this broader network. And it has been phenomenal. To date, we have roughly, I think, 57 or 58 foundations that have signed on to this pledge, and we’re seeing the change happen.
I was thrilled this year, and I really wanna give a loving shoutout to our colleague John Palfrey over at the MacArthur Foundation because we saw Joshua Miele, who was a blind scientist, awarded a MacArthur Fellowship this year. And the last time that a disabled person, a disabled activist, was awarded a MacArthur Genius Award, as they’re called, was when it was Ed Roberts, who was the director of the Vocational Rehab agency in California when Section 504 was passed and founded the first Center for Independent Living in the country. So, it’s been a really long time. And so, we’re seeing it happen. We’re seeing foundations start to make significant grants in the disability space, whether it be some of the great work in the health space that our colleagues at Doris Duke are doing, that our colleagues at the California Wellness Foundation are doing, that Robert Wood Johnson is doing. Whether it be the work that groups like the WITH Foundation and CEO Ryan Easterly are doing to help support the next generation of self-advocates. It’s really been exciting to see, and I hope that we continue to see more of it as we move forward.
VALLAS: Are there any other groups that you feel like are worth a mention? We don’t have enough time to list every single disability group that’s worthy of mentioning and of following and of learning more about in this episode right now, but are there any groups that you feel like are particularly worth calling out because they’re either newer to the scene and might be groups that folks aren’t familiar with or who have particularly interesting models that are maybe breaking the mold right now of how this work has been done in the past?
COKLEY: I’d really like to shout out a couple of our amazing grantees. We were really thrilled this year to be able to make a grant to Crushing Colonialism, which is going to be one of the first, if not the first, Native American Disability Justice Organization. We know that the disability rates within the Native American community are significantly higher than any other community, and yet there is such a lack of resources in that space. We are thrilled to be able to have them as one of our inaugural grantees. We’re also really excited to be supporting the work of Andraéa LaVant and her shop that are actively building out what we’re calling the Disability Wikipedia Project, which is going to be focused on ensuring a greater and more equitable presence of disability on Wikipedia, both creating pages for disability leaders and activists, and also ensuring that the disability narrative within our history is present even when it’s been neglected or erased.
To be able to sit and have the conversation with our colleagues and our friends and say, “What’s missing? What do we need,” and to actually be able to be thoughtful about how we fund that. And that’s one of the things that we’re so excited about the work that you’re gonna be spearheading at The Century Foundation. The work of Dr. Kate Caldwell out at UIC in Chicago, starting down to hopefully crack the nut on some of the income inequality issues around the disability community and equal pay day. It is a dream to have this job to be able to fund the critical work that needs to be done, but also the work that for so long we’ve all sat around and been like, “You know, the only thing holding us back from doing X is the funding we need to do it.” And for that no longer to be the thing that holds us back.
VALLAS: And I’m incredibly, incredibly excited, as always, to have opportunities to work with you and to get into good trouble together. I feel like you’re mentioning some of the work at The Century Foundation is probably as good a time as any to preview a little bit of what some of you and I are gonna be doing together next year, a partnership between The Century Foundation and the Ford Foundation and lots of our other friends as well, some of whom have been mentioned already in this episode. We’ll be launching the Disability Economic Justice Collaborative, which will be the first of its kind type of project, bringing together groups in the research community, the think tank community across D.C. and New York, together with groups from the disability community, so that the two sets of groups that are often somewhat siloed and don’t really have the relationships and the bridges that they should have can start to work together and row in the same direction towards a shared disability economic justice agenda.
And there’s so much that the research and think tank community has to learn from the disability community, but a lot that will go in the other direction as well in terms of bringing disability more to the fore within think tanks, within multi-issue, multidisciplinary organizations that have not seen disability as a focus worthy of investing in until fairly recently. That’s something we’ve seen a lot of improvement on in recent years. Lots of groups now starting to say, “We wanna deepen our work in disability, but we have a lot to learn, or we don’t know where to start.” That’s some of what this group is going to be doing in co-creating a way of working together. And I’m incredibly grateful to the Ford Foundation and to you personally, Cokes, for wanting to do this work together. And it’s gonna be a lot of fun, I think, given some of the folks that we’re gonna be bringing together for the first time.
COKLEY: Definitely. I can’t wait. And I think this is just the beginning, and we look forward to continuing to grow this work both at Ford and across philanthropy. We look forward to seeing this issue and the priorities of the disability community continue to be mainstreamed. And I can’t wait to see where it goes from here.
VALLAS: Well, it’s been an honor getting to work with you, getting to become such close friends. I count you more of a sister than anything at this point, Cokes. And while I miss our law firm of Vallas and Cokley/Cokley and Vallas, we’ve now got a law firm without walls in some ways, so the work continues. And I always love having you on this show. Always love getting to bring you into these conversations. And I’m so grateful for the work that you’re doing now at Ford, really leading the way within philanthropy. So much that will come from it that I’m incredibly excited to watch.
Rebecca Cokley is a program officer in the Office of the President at the Ford Foundation, where she manages the first ever U.S. disability rights portfolio at a major U.S. foundation. And you can find her on Twitter, follow her on Twitter if you’re not somehow already, @RebeccaCokley (that’s Rebecca Cokley) on Twitter. And Cokes, we’ll have a couple of links in our show notes as well, so folks can learn more about what you are doing at Ford. Thank you for taking the time, and happy holidays. And please give all my love to the kids, and I look forward to hearing more about the new addition to the family that will be a feline addition to the family when there’s news to report.
COKLEY: Yeah! Thank you so much for not leading people to assume that I was having a fourth child. I was like, holy buckets! I’m not pregnant, no. Our daughter is absconding with a kitten from my mother-in-law. And so, there will be much debate on name, and I’m sure she would be happy to make her debut on the podcast.
VALLAS: I would be honored, and we can start the episode by my saying, “I’m not a cat.” But she won’t be able to say the same, so we’ll see where that goes.
COKLEY: Sounds good! Sounds good. Thank you so much, Vallas. [theme music returns]
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 Abby 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 or wherever you get your pods. And for the super fans, you can find a full archive of all past episodes and transcripts over at TCF.org/Off-Kilter. Got an idea for a topic you’d like to hear us unpack or a guest you’ve been wanting to hear on the show? Send us a note at [email protected]. Or if social media is more your bag, give us a holler on Twitter @OffKilterShow. 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. It really does help. Thanks again for listening and see you next week.