As Off-Kilter continues our ongoing series of conversations with leaders across the economic justice movement digging into why, in the famous words of Audre Lorde, self-care is political warfare—and the role radical self-care plays in their own lives to sustain them in this work—Rebecca Vallas had a ton of fun sitting down with her next guest in the series, who’s a dear friend and colleague of hers and who’s been on this show enough times she really needs no introduction. Rebecca Cokley is a longtime disability rights activist who serves as the disability rights program officer at the Ford Foundation (whose support of TCF and the Disability Economic Justice Collaborative makes this show possible week to week). They had a far-ranging conversation about disabled people as modern-day oracles when it comes to radical self-care; the role of philanthropy in supporting self-care across social justice movements; the story behind why she started doing daily Twitter reminders to the disability community to eat lunch; and lots more.

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Follow Rebecca Cokley on Twitter @rebeccacokley to get her lunchtime reminders to eat (and lots more)

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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 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 as we continue Off-Kilter’s ongoing series of conversations with leaders across the social justice movement, digging into why, in the famous words of Audre Lorde, “self-care is political warfare,” and the role radical self-care plays in their own lives to sustain them in this work, I had a ton of fun sitting down with our next guest in that series, who’s a dear, dear friend and colleague and who’s been on this show enough times that she really needs no introduction. And that’s Rebecca Cokley, a longtime disability rights and justice activist who serves as the disability rights program officer at the Ford Foundation, whose support of The Century Foundation and the Disability Economic Justice Collaborative makes this show possible week to week. We had a far-ranging conversation about disabled people as modern-day oracles, especially when it comes to radical self-care, the role of philanthropy in supporting self-care across the social justice movement, requesting accommodations in the workplace as a form of self-care, the story behind why she started doing daily Twitter reminders to the disability community to eat lunch, and lots, lots more.

And as a quick programing note, in the spirit of recognizing disabled people as modern-day oracles on the subject of self-care and so much more, several of the disability community’s visionaries whose names Rebecca Cokley invokes throughout our conversation—from Vilissa Thompson, founder of Ramp Your Voice, to Alice Wong, founder of the Disability Visibility Project, and more—are some of the very leaders I’ll be sitting down with in the coming weeks as Off-Kilter’s series exploring self-care as political warfare continues. But without further ado, my conversation with Rebecca Cokley. I hope you enjoy this conversation half as much as I did. [upbeat music break]
Cokley, it is always a pleasure to be in conversation with you! Thank you so much for taking the time to come back on Off-Kilter.

REBECCA COKLEY: Thank you so much, Vallas. It’s always fun to be here.

VALLAS: Well, my only regret is that we’re not doing this in person because I miss you. I miss you on a human level. I miss being down the hall from you in so many different ways. So, I guess we’ll have to make Zoom work for now. But I do miss seeing you in person.

COKLEY: Same here, same here. It’s been way too long.

VALLAS: It has. And I have to say, it was actually memories of back when we used to work together at the Center for American Progress that actually were kind of the original inspiration for the conversation that we’re having as part of this overarching series that Off-Kilter is doing around radical self-care, because fun fact, you used to feed me [chuckles] quite literally when we used to work together down the hall from each other at the Center for American Progress. And that was because I was in the stretch of my life, the multi-decade stretch of my life, where I was not doing a good job or any level of intentional job at taking care of myself. And so, I’ll just be very out about this as we frame up this episode.

I would go whole workdays without eating anything at all. And part of that is related to the fact that I live with invisible disabilities that include chronic illness that impacts my digestion. And so, rather than endure the complexity of what might happen when I eated—“When I eated.” There we go. Off to a great start—when I ate, I would avoid eating during the workday so that I wouldn’t be held back or slowed down by what it actually took to nourish my body. You were really one of the people who was instrumental, particularly at the moment in time where I was starting to actually see myself as part of the disability community, you were instrumental in, on a daily basis, making sure that I actually fed myself when we were at work. And now you’re a person who actually reminds everyone in the disability community to eat, through Twitter with a disability lunchtime reminder that you often do. So, that felt like the right place to start this conversation, and that was some of the inspiration that I had in wanting to have you as part of this series of folks speaking about radical self-care. But talk a little bit about where the role that you play for so many of us in reminding us to eat comes from. And what inspired you to start doing this disability lunch Twitter thing early in the pandemic?

COKLEY: Thanks so much, Vallas. Yeah, it actually started shortly before the pandemic. It was ADA Week, probably 2019, I think, now that I think about it, and it had been a really hectic week. And I got to the end of the week, and I realized I hadn’t eaten lunch at all that week. And I had joked with a friend of mine, Claudia Gordon, who’s over at T-Mobile, and I had said to her, we had joked about how a couple of years previously when we were in the Obama administration, we made it to the end of the week with similar results, realized we hadn’t eaten. And then we went and drank way too many mojitos and margaritas and ate nachos at Rosa Mexicana. And so, I sent Claudia a text like, “Made it through ADA Week. Did you eat lunch at all?” And she wrote, she texted me back and said, “No.” And I was like, okay, this is a problem. And so, then I texted a few other people, including Emily Ladau and Tarin Williams, and just specifically, like a list of about 30 disabled women. And I asked everyone, “Did you eat lunch today?” And everyone responded to me with, “No,” and it really shook me. And so, several folks I asked, “Well, why didn’t you eat lunch today?” And they’re like, “Well, the week has been a lot.” Or “I felt like I,” you know, the number one excuse I heard was like, “I felt like I hadn’t done enough to take a break to eat lunch.”

And I realized that we were, as a community of disabled women leaders, equating a basic meal with a reward. And it just seemed so, like, f-, I’ll use my one bleep. It seemed so [bleep] up to me. And it really made me do some serious thinking about the relationship with food that the community has to a certain extent. And so, I started checking in with people regularly about lunch. I’d send emails every now and then. Then I started really tweeting about it. And it’s, you know, I think it’s one of the things that actually has sort of cracked me up where, sometimes, life gets hectic. Or for example, one week we moved, and I didn’t tweet about lunch at all that week ‘cause we were moving. And I got to the end of the week, and my phone rang, and it was my friend Katie Porter. And Katie said, “Hey, is everything okay? I haven’t seen you tweet about lunch this week. I’m worried about you.” And it totally cracked me up because I had thought it was just sort of this little thing in the disability ethos and hadn’t realized that it had become a thing. And to me, just the point of making it a thing is, to me, part of the work. It’s, you know, we’re no good if the only conversation around sustainability that we have doing disability rights work is one about how much money we’re bringing in. The sustainability conversation has to be so much deeper than that, has to be, “How do we take care of each other? How do we maintain access to high quality health care? How do we maintain access to food?” And it really just demonstrates, I think, the significant toll that capitalism has taken in terms of all of us, that this continues to be something that we have to do.

VALLAS: Katie Porter, obviously, a member of Congress who represents a district in California, the 47th District in California. So, thank you, Katie, for [chuckles] reminding Cokley the importance of these tweets, which we can laugh about it, and it seems like maybe kind of it’s a whimsical thing. But I will say I am one of the people, and I know there are dozens and dozens of people out there, who actually really appreciate that you do that. Because it isn’t just what it seems like on the surface; it isn’t just a reminder to eat. It’s, as you were just starting to unpack, it is symbolic of such a deeper problem and part of why I really wanted to use that as the kick-off point to this conversation and to have you as part of this series about radical self-care.
And I’ll note just it resonates so deeply with me the way that you put it: the idea of treating a meal as though it’s a reward. It’s like, “Well, okay, I’ll let myself eat after I finish this report that I’m writing, or I’ll let myself get to lunch or take a break and have dinner or whatever it’s gonna be once I’ve finished reading this thing and sending a whole bunch of emails or getting through all the things on my to-do list.” And that is such a common way of engaging with our work. It’s certainly something I know that I have done in various forms. I’ll confess I even sometimes will do that with, or I’ll catch myself doing that with, even going to the bathroom because I have to pee, right? It’s like, “Well, I’ll let myself go pee once I finish this email.” And your words often ring in my ears because I’ve heard you say what you just said before about how these are basic human needs. These are not things to treat as rewards for ourselves and certainly not tied to our work output. So, is there anything else that you wanna say on that piece before we kind of start to get a little bit deeper into this conversation?

COKLEY: So, Vallas, what did you eat for lunch today?

VALLAS: Well, so, a thing that I have started to do that is really working for me as sort of an in-between that allows me to nourish myself throughout the day while not ending up in a place where I feel like I’m doing food roulette, or it’s like I don’t know if I’m gonna be out of commission for the entire afternoon because of shutting down my digestive system, is I have started eating a particular type of protein bar that really works for me. I’m not trying to do product placement here. They are not a sponsor of the show, but I happen to eat Lärabars. They work really well for me. They’re just all like fruits and nuts, and super-natural. It’s gluten free. And so, I eat a couple of those throughout the day, and that is what I was having just before we started to record.

COKLEY: That’s awesome. I am just finishing up a turkey and Gouda sandwich and a bottle of bubbly water.

VALLAS: Ah! I fully support that, and I feel like it’s perfect that you should be eating that while we’re having this conversation, so please feel free to eat while we talk. Mouth full, very welcome. And you already used your one “bleep” with Troy. But I figure given that this conversation is so important, maybe we can give you a second one if you need it.

So, Cokes, just to start to get underneath some of what you’ve already started to put on the table there, in a lot of ways—in my opinion, and having done social justice work in a variety of different capacities and worked with a variety of different movements, including the disability movement along my career—in a lot of ways, in my opinion, it really is the disability community, which you and I lovingly call the disco, that many of us have the most to learn from when it comes to radical self-care. And so, another person whose words I often have ringing in my head, a person we’re gonna be speaking to in just a couple of weeks as part of this series for Off-Kilter’s conversations about radical self-care, Alice Wong—an incredible activist and author of multiple books and founder of the Disability Visibility Project—I often have Alice’s words ringing in my head because, as Alice often puts it, disabled people are oracles. And so, I’m curious to hear you talk a little bit, Cokes, about what you see as the significance of radical self-care to the disability community and why members of the disability community are so often positioned truly as literal modern-day oracles when it comes to a subject like radical self-care.

COKLEY: That’s a great question, Vallas. And I think for me, a lot of the conversation around self-care has to be parsed out from the conversation around fulfilling basic human needs. I think this notion of self-care in some ways has been Columbused by spas and mimosas and sort of all of these things. And I think in some ways, we’ve watched non-disabled people elevate self-care to a place where it’s economically also not viable for a lot of disabled people. And so, I think part of it is really just unpacking the fact that we all have needs for rest and to rest when we are tired. We all have needs to feed our bodies through whatever means we need to feed our bodies. We all have the need to go outside and touch grass or take a walk or get a breath of fresh air. And so, I think in many ways, the pandemic, for some folks, made those things more achievable because they were home. They were able to take a conference call while taking a walk or things like that. But at the same time, it also wasn’t accessible for a lot of folks. People that require a certain level of personal care services and saw those services impacted during the pandemic might mean that they’re not able to do the same things that they were able to do before.

And furthermore, I think the notion of actually taking a break from work and closing the laptop, hitting “ignore” on the call that comes in at 7:00 in the evening or in the morning—if it’s Judy Heumann, she’s usually calling you at 7:00 in the morning—and actually allowing your brain to rest or allowing your body to rest and centering yourself, it may mean saying no to going to X event. That, for me, was a huge thing, the ability to say no to things, because I am a person, as a double Sagittarius that lives with a certain amount of FOMO that feels like I should be everywhere, and as a Catholic Sagittarius, there’s a certain amount of guilt that comes with that. And it’s like I should be everywhere, and I feel bad that I’m not everywhere.

VALLAS: I’m getting you—

COKLEY: And not having to—

VALLAS: I’m sorry. I’m getting you business cards that say, “I’m a Catholic double Sagittarius.” [laughing] “What do you want from me?!” I love it.

COKLEY: [laughs] My default is, “No” and really pushing myself to say no. Like, “No, I’m not going to go into the city for this thing that was a last-minute thing that I feel like I should be at.” Or “No, I’m not going to double book myself.” Or no, I’m going to sit down with my amazing assistant at the beginning of the year and communicate to her that I need to block off Monday and Friday mornings just to have time to think. And that I keep my lunch blocks free unless it’s an in-emergency-break-glass sort of meeting that I need to have. And so, I think one of the hopes that I have coming into this next phase of COVID, ‘cause we’re not out of it yet, is really thinking about what does that look like? And how do we move out of the “Am I deserving of this” conversation? But how do we actively embrace what it is that we need to take care of ourselves?

VALLAS: No, that’s beautiful. And there’s a lot to come back to and to unpack in that. But I’ll just note that the last time that I had you on Off-Kilter, we were in conversation with a friend of both of ours who is also a disability activist named Keith Jones, who, if folks are not familiar with, they should go check out on Twitter, at DaSoulToucher, @DaSoulToucha. Let me get that right. And you can check out the episode from last season. It’s called Your Work Is Not Your Worth. And I have to say, in hearing you speak to us now about that kind of that deservingness mythology, which is so deeply ingrained in so many of us because of the sort of neoliberal underpinnings of pretty much everything to do with our economy and our society at this point in human history, that deserving/undeserving conversation is very much related to some of the blocks that some of us have around taking care of ourselves in these ways. You were describing that in the context of like, “Do I deserve to take this break right now or do I deserve to have lunch? Have I done enough work today?” And I have to say, I was thinking a lot in prep for this conversation today about that last conversation that we had, you and me, with Keith, about how your work is not your worth. And so, I don’t know if there’s anything you wanna pick up on that about how that conversation ties into this one and to a broader conversation about radical self-care.
COKLEY: Oh, absolutely. I think Keith is just such an incredible friend. And having people like him in your life that are willing to check you when they see that you’re doing too much or you’re being extra-extra, I think is really helpful. I think, yeah. I think we’re tied up in this notion of produce, produce, produce, produce, produce. And I remember I had a math teacher in college who used to say, “I’m not….” What did she say? “I’m not a procrastinator. I’m just crisis oriented.”


COKLEY: And I mean, I even think about when I worked in the White House, and then I left the White House and was working in a federal agency, and everything just seemed so slow. And I was so frustrated that it just took forever, it felt like, to get anything done where, having been in the White House and been on the campaign before that, there was just this pace that I found that I thrived in. But I also had to recognize—and I know you and I talked about this a lot at CAP—that that pace isn’t, you know, as much as we might feel like we’re thriving in that pace, it’s not always healthy. And it may mean, in fact, that we’re just going so fast that we don’t have time to think about the things we should be thinking about.

VALLAS: Yeah, for sure. And there can be something really—I mean, I really resonate with that—and there can be something really addictive about moving at that kind of a pace, right? Because you’re quite literally getting hits of dopamine from moving at that kind of pace when you do become addicted to it. “Oh, another email came in that I have to deal with. It’s super urgent.” Or “Oh, we’ve got another crisis. Let’s go into Olivia Pope mode.” But I think whether or not it’s something that folks listening feel like, “Yeah, that describes me. That’s my favorite way to work,” it’s certainly not sustainable. And that is the thing that I certainly learned the hard way as I moved through my own first experience with burnout actually before the pandemic and overlapping with some of the early part of the pandemic. You can learn to run at that pace or to move at that pace all the time and forget that you actually need to learn the inhale and the exhale and to take breaks and to not always be at that pace, even if it does seem like it feels good. So, I appreciate you saying that and also your candor and in sharing your own experience with feeling, in contrast, like something else might be a little bit too slow, even if what it actually is, by contrast, is healthy and is sustainable and does give you that kind of spaciousness to be more intentional about what you’re doing and when, rather than constantly being in respond, respond, respond right now mode.

How does radical self-care show up in your life as a disabled person and as a disability activist in particular? And I ask that question, Cokes, I think, taking us to this next part of the conversation where you really started to kind of to take us there with mentioning the pandemic, right? This has been a—we’re heading into the fourth year of the pandemic now, right?—this has been quite a stretch of all of our lives. It’s not over. It’s not going anywhere anytime soon, it seems pretty clear. So, this is not a post-pandemic question; this is a mid-pandemic question. But how have you been navigating self-care in an ongoing pandemic that has hit the disability community in particular extra, extra hard? Obviously, it’s impacted everybody who is alive right now or who is no longer alive right now as a result of it. Curious what that brings up for you, especially given the very justifiable feeling of urgency that so many of us feel that can make it feel like it isn’t actually safe to rest while our people are literally dying or are living in deeply unsafe conditions such as a pandemic?

COKLEY: That’s such a great question. And I think, as I think about it, I mean, a couple of things come to mind. The first for me is not denying the things that bring me joy. And people that know me well know that one of my most significant vices is Legos and building Lego sets. And there was a period of time shortly after my mom passed away that I dove really heavily into buying very large, very expansive Lego sets. And then a few years later, I sort of held back on that. And with the pandemic, I found myself needing to do that again, like, needing to return to it because I’m not crafty. I’m not a, you know, my mom could knit and crochet and needlepoint and could do all of those things exceptionally well. And I can’t do any of those. I can barely, like, I can fake a hem on one of my kids’ dress pairs of pants if they need it for like a presentation or an assembly. But even then, I’m much more comfortable stapling it and then coloring Sharpie over the staples, you know? But I can work the heck out of a box of 2,000 Legos. And so, I just—
VALLAS: Quick side note, Cokley. I have to interrupt you to say we’re gonna need to have you tell this story to Indi Dutta-Gupta at some point, who runs the Center for Law and Social Policy, because he has never let me live it down that I once stapled an article of my clothing that had a hole in it in front of him. And he was like, “Vallas, what is this?” And I was like, “Well, I don’t sew.” And so, I just need to say it’s not just me, Indi. Cokley did this too. There we go. Sorry. Keep telling your story! [laughs]

COKLEY: It’s totally me, and you can totally judge me with your cool, quirky sock collection. There you go. And I think for me, it became one of those things where it was like, no, this is something that allows my brain to quiet itself and allows my hands to stay busy and allows me to have some distance from all the terribleness that’s happening outside. And so, I just started building my Lego sets again. And as so many of my friends in activist spaces across different movements have kids, and I find their kids are into Legos, then I become the bad auntie and start buying their kids Lego gift cards. And so, I have a whole bunch of movement nieces and nephews and niblings whose Lego addictions I am extremely enthusiastic about supporting.
It also, yeah, I mean, it meant taking naps. It meant, honestly, it meant asking for an accommodation at work. And as we’ve returned to the office, the policy at the Ford Foundation is three days a week, and it meant putting in a reasonable accommodation request with my boss and our People and Culture team for two days a week. And I’m not gonna lie. I was nervous doing it. I felt weird putting in an accommodation request for an increased level of telework. And it’s actually funny because I’m gonna mention another member of Congress in this conversation. I actually had the conversation, the day I turned in the accommodation request, I had a conversation with Congresswoman Pressley. And we were talking about a litany of different things, and I was like, “Yeah, AP, I had to put in an accommodations request, and I was really nervous.” And she kind of laughed at me and was like, “You’re nervous? Why are you nervous?” And it actually made me sit and unpack my own concerns and my own double speak when it comes to how I view my job, how I view my productivity, and frankly, also the limits that my disabilities are putting on me as I get older. I’m 44 now, and I can’t walk multiple miles a day in heels in a big, foofy building in midtown. My knees won’t do it. My back won’t do it. And having to take into consideration that I don’t wanna be…I don’t wanna be one of those people that works until their body completely breaks down. Because I see it in our elders, and our elders have done it without any choice in the matter. And that really scares me and really frustrates me.

VALLAS: And I have to say that was a message that you used to deliver to me quite frequently in the aforementioned days where I was choosing not to eat at all during the day, because that would, that seemed to me like a better choice than what I’ve called food roulette. You were not shy in sharing with me stories about people who are no longer with us in the movement, in the work, as a result of not having nearly as much choice in the matter as many of us do today. So, I appreciate you bringing that into this conversation as well.

I’m curious because, Cokes, you’re somebody who identifies as a second-generation civil rights activist. Your parents were also in the movement. Was there anything—and you’re, in particular, you’re a second-generation disabled civil rights activist—was there anything that you remember learning from growing up with parents who were in the movement when it comes to not just how they did the work, but how they showed up for themselves in doing the work?

COKLEY: I don’t think my parents did it well. I don’t think my parents are a positive example of setting boundaries. I mean, they were amazing parents and amazing people in their own rights, but my parents didn’t have boundaries. I mean, my mom would take calls from work all hours of the day and night. My father would go into work when he was in extreme levels of pain and discomfort. He would go into work and sit in his wheelchair all day, even though he might be fighting bedsores, because he felt like he had to be there for, in the case of my dad, the people with disabilities that were coming to the Center for Independent Living that he worked at, and in the case of my mom, students who were dependent on her to access accommodations at a community college. And I remember watching my mom just be so tired. And my mom passed away. My dad passed at 40. My mom passed at 51. And I remember my mom getting sick, and from the time that she was sick to when she finally saw the doctors and got a sort of a preemptive cancer diagnosis, she moved her doctor’s appointment on like four times because she had students that had finals.

And being on the other side of that now and getting closer and closer to the age that she was when she passed, I don’t want that. I plan on being here as long as I can. I don’t want my kids to grow up without me. And so, it’s required me to do a lot of radical rethinking about, you know, I’m gonna shout out Vilissa Thompson, who is the never-ending Patron Saint of Boundaries, as I lovingly refer to her, and say it’s required me to think about boundaries. It’s required me to think about what are the standards that I’m gonna set for myself, and how am I gonna hold myself accountable to them?
VALLAS: And I swear I didn’t pay you to give a plug for our next episode of the series because Vilissa’s literally coming on to talk about boundaries as part of radical self-care. So, yes and yes and yes. And she deserves that title of Patron Saint of Boundaries and more.

Cokes, I wanna also stay with the theme of accommodations here for just a moment, because it also feels like that’s worth digging into on its own right a little bit as well. And we’re gonna have a number of guests from the disability community as our next several set of guests to lead the conversations in our upcoming episodes as part of this radical self-care series that that feels right. It also started to happen organically with the people who I was thinking about as some of the, really, the leaders whose wisdom I have most benefited from on these fronts over the years. But it feels like it’s worth diving just one more moment into accommodations as a form of radical self-care. And that actually is part of what was in my head while I was thinking about people with disabilities as oracles when it comes to a conversation that has, as you put it, been Columbused by not just the spas and the makers of mimosas, but it seems like pretty much there’s now a self-care industry basically that’s all kind of fluff and which, as we talked about in the kick-off episode to this series with Aisha Nyandoro, it’s just completely whitewashed and papered over what Audre Lorde and other leaders who pioneered this concept of radical self-care decades ago were thinking about and were looking to invoke in bringing forward the concept. So, what else do you feel like needs to be said around accommodations as a form of self-care, for anyone who identifies or doesn’t identify as a member of the disability community, but who is covered by the Americans with Disabilities Act?

COKLEY: Vallas, I’m really frustrated with the framing of accommodations solely as a compliance issue. I mean, I find myself thinking a lot about Neil Romano, who used to be the assistant secretary of the Office of Disability Employment Policy at Labor during the Bush years. And Neil really hated the conversation around compliance because one of the things that frustrated him was that as long as we relegate accommodations to a compliance issue, it doesn’t center the conversation on giving your employees with and without disabilities, let’s be real, what they need to thrive. And so, holding back accommodations, not feeling comfortable asking for accommodations, and from a manager perspective, being a jerk or an [bleep] about your staff’s need for accommodations, it’s actually harmful, both physically and emotionally harmful. And it also, frankly, to go back to the capitalist language, it harms the work.

And there’s this notion that people accessing accommodations are getting around on something or that people who are accessing accommodations don’t really need them, and that’s gaslighting. It’s really harmful, and it’s really detrimental to the workplace, to an employee’s relationship with other employees, and to the individual that needs them. It’s saying, “I’m not going to give you what you need to not kill yourself in doing this job, to not actually cause you physical or emotional pain to do this job.” And as we talk about the return to office—‘cause it’s not return to work because I think that’s an important clarification, because people have been working this whole time, and people have been ridiculously more productive this whole time throughout the pandemic while having increased workplace flexibilities—and it really feels gaslighting or it feels emotionally abusive when I hear these stories of friends and colleagues of mine who are being given the runaround, who are having their work ethic or their quality of work questioned because they need an accommodation as we enter this next phase of COVID.

VALLAS: Yep. That’s really well put. And it does feel incredibly timely given the shifts and some of the navigation that we’re watching organizations and leaders and entities all move through in terms of trying to figure out what does it look like to work and to do our work potentially somewhat differently in light of a continued pandemic that is not over, that is still continuing, that is just moving into new chapter after new chapter, given that there are a lot of folks for whom in-person work five days a week is, it’s just it’s not gonna work as a matter of their health and their wellbeing.

So, I wanna to switch gears a little bit and talk a little bit about the role of philanthropy in supporting self-care and particularly for people doing some kind of social justice work. And so, I’m gonna ask you to put on your philanthropic hat for a minute here, Cokes. You are the disability rights program officer at the Ford Foundation, one of the many hats that you have worn over many years in the disability rights and justice movement. And as we have this next part of the conversation, I wanna give a plug to an episode that we had earlier in February as part of this series of conversations about radical self-care with the brilliant, amazing labor journalist Sarah Jaffe, who’s the author of a book called Work Won’t Love You Back. And we actually talked a lot in that conversation about the role of philanthropy in social justice work more broadly.

But for purposes of this conversation, I would love to give you the opportunity to share thinking that you have, maybe ideas that you have, observations, reflections—now that you’ve been inside philanthropy for a couple of years, as opposed to being on the outside asking for money—about what it could look like, and to the extent that it does, what it does look like for philanthropy to show up as a part of this work, as a leader in this work, that could and possibly could do a better job of supporting self-care for the people who are doing the work on the ground. So, where do you wanna take that first?

COKLEY: I feel like this is one of those things that because of philanthropy’s eugenics-based roots, it tends to be hesitant to have the conversation about. But I do feel like as more activists and advocates transition into philanthropy, I think that there’s a sort of turning of the Titanic in some ways in this conversation. I mean, something I find myself doing a lot of times in talking to prospective grantees, particularly if they’re bringing in people with disabilities as contractors, is I ask those people with disabilities about their retirement plans, like do they have retirement plans? Are they saving for retirement? What does that access look like? I think I find myself watching the Baby Boomers with disabilities continue to have to stay in the movement work because they don’t have retirement, because they built the structures as they were working in them. And so, something that, yeah, I do find myself oftentimes in conversations with elders, or to quote my friend Alex Thomas in the Bay Area, “yelders,” young elders, about like, what is your retirement plan? What do you do? What does the future look like for you? Because I actually wanna put in their heads that it is really messed up that a majority of them think that they’re gonna have to work to their deaths. And that we actually have to fundamentally shift how we think about this work in the disability rights space to create an alternative.

I think a lot about, and I often ask organizations about, their sabbatical policy and what does their sabbatical policy look like. I had a great conversation before I came into philanthropy. Actually, when I was still at the National Council on Disability, I reached out to my friend and avowed futurist Trista Harris and asked her, “How can we shift the conversation around mental health care and organizations? And what can,” you know…. And at the time, I mean, Vallas, you and I were even then having the earliest conversations around disability and philanthropy. And I remember saying to Trista, “Are there funders that ask these questions? And what are the right questions that, as a grantee or a prospective grantee, folks should ask of funders?” Like, ‘Can I use these dollars for X?’ Or what would it mean to ensure that staff of color in majority white organizations have access to mentors? What are the mechanisms, as a funder, that you can use to drive the kind of organizational change that you know is needed for, frankly, the survival of your community?”

VALLAS: Yeah, I love that. And I feel like the concept of a sabbatical may be the closest that we ever get to the idea of funding rest, right, [laughs] of normalizing rest as part of the work and as necessary to the work. But it really is something that doesn’t get talked about nearly enough and which remains a concept that is within reach, an opportunity that is within reach for so few people and something that often comes far too late in someone’s career and far too infrequently, the concept that it’s something that you only get once or that you only get once after decades. And I was actually just this morning having a conversation over text message with a close colleague in this work who I will not name, I will not out, but she was saying how excited she is to have a sabbatical finally coming up. She’s been doing public policy work now and law reform work for, I believe, 24 years. She’s got a two-month sabbatical coming up with the organization she works with this summer, and she’s so excited for it. And it just hit me. It washed over me and thinking about all the time that it took to get to this moment where she’s gonna have two precious months, and then it’s gonna be gone. And that’ll be the one chance that she’s gotten to actually have not just the rest, but also the space that comes with not being in the grind every single day.

And thinking from my own experience about what happens when I take time away from work that’s more than just a weekend or more than just a one-week vacation, something that I’ve been fortunate and extremely privileged to have the ability and the flexibility and the autonomy within my work in the past few years to be able to do is to try to take the month of August not entirely off, but a chunk of it off, or at least not to have meetings. No Meetings August is a thing I have done at different points. And like, oh my God, the difference in my quality of thinking, in the creativity of the ideas that I’m able to bring, but also just the level at which I’m able to show up in the work after I take that kind of a break. And that’s not even a full sabbatical.

It just, it makes me so passionate about the conversation that we should be having and that I would love to see philanthropy having more, and more visibly and at a higher volume decibel of what could it look like for, instead of just the goals and the deliverables and the outcomes-driven funding that is the model that is so predominant within our current philanthropic model, which is one which is basically just funding nonstop, nonstop productivity all the time—produce, produce, produce, produce, like you were saying—what could it look like for philanthropy and for the organizational cultures who respond to and often cater to what philanthropy lays out as what dollars are on the table for? What could it look like for us to actually see a philanthropic movement that, a philanthropic space, that recognizes rest, that values rest, and that sees and names rest as part of the work, too? And yes, sabbaticals might be part of that. But with burnout now emerging, as Alex Lawson said in one of our recent episodes as part of this series, the episode called Finding the Technique That’s Relevant For You, he described burnout as enemy number one when it comes to the social justice movement. I’m curious what your reaction is to that. How radical a concept is it for philanthropy to come to recognize, and to visibly and vocally recognize, rest as co-equal with productivity, and if not co-equal, at least on the board?

COKLEY: Vallas, I think it’s the next corner. I think it’s the, or it’s the thing coming around the corner. I mean, I find myself thinking about it a lot, particularly given the level of activism that is produced by but also, frankly and unfortunately, expected from women of color, from disabled folks. I mean, whether it be fighting three rounds of SNAP cuts or the fight around the public charge or the ongoing attacks on proposed immigration reform, I think every movement is exhausted. And I think at the same time, when the personal is professional and when the professional is the personal, when you’re working for the cause of the betterment of your own community, we don’t often stop and think about, or we don’t—from philanthropy. I don’t wanna say we don’t—stop and think about the additional labor, the toll of that labor, the impact of that labor that’s expected of folks. And so, it’s like, okay, that campaign wrapped down. Now, what’s the next thing? What is the next thing we’re focusing on? And really thinking about, is there something philanthropy can be doing? Is there some sort of structure or mechanism by which we can support people in having a bit of a soft landing? Can we help people think? Can we support people in centering themselves for a period of time?

I keep going to the example in my head of the MacArthur Fellowship, which mind you only goes to a handful of people every year. But it’s really the type of dollars that it would take for somebody to take off a substantial period of time from capitalist-centered employment to breathe, to rest, to sleep. And I think that there needs to be some serious thought about that. I think that there needs to be a concerted effort by philanthropic institutions who are equally responsible for the demands that are placed on sort of the non-profit industrial complex to say, “We have to structure things differently. We need to think about how we do things differently.” And I think it’s something that I’m very lucky that my direct supervisor comes out of activism as well because it’s the kind of thing where, as she and I sort of bat around ideas about what grantmaking should look like, it’s the kind of thing where we’re both like, “Man, something like that would be really helpful. How do we think about, you know, how do we invest in our movements beyond just operational costs?” Like I said, how do we actually shift the conversation around sustainability to one that’s not just focused on budgets, but one that’s focused on the well-being of our people?

VALLAS: Yeah, no. You just put that beautifully. And just the word “invest,” right? It so rarely gets associated with anything that can’t be numerically reduced to some kind of deliverable, right, the whole concept of ROI, return on investment. And so, the common, the predominant model within philanthropy today is how many papers are you gonna be publishing? How many events are you gonna host? How many people are you gonna reach, etc., etc.? Those become the deliverables that go along with a grant proposal and what you get measured against when you end up reporting on what you did with the dollars. But investment, as you’re describing so eloquently, investing in a movement is something that takes a level of thoughtfulness and a level of strategy that goes beyond just what did you get out of an individual grant cycle in terms of very specific, numerically quantifiable deliverables, right? It’s what did you do to support this movement in a way that is going to ideally redound beyond just the immediate period during which dollars changed hands? And I think that’s a lot of what I hear you saying there. So, I’m very interested in this conversation and very hopeful that as you look in your mug and read the tea leaves and say you think this might be coming around the corner, I am very hopeful that that is the case with so many people around us who are the leaders whose vision we so desperately need in this global paradigm shift moment, burning out one after another and trying to just make it to tomorrow when what we need is for them to be at their best. And what that takes is being able to rest, right? It shouldn’t take somebody having COVID to get to take a couple of weeks where they’re not produce, produce, producing. And yet, there is so little understanding of that now.

So, Cokley, I wanna stay for just another moment in this with you, with your Ford Foundation hat on, and ask if you have anything particularly exciting coming down the pike. I know you’re always working on lots of amazing, exciting projects. You fund a lot of really incredible, fantastic, and visionary work. We at The Century Foundation and the Disability Economic Justice Collaborative are eternally grateful that the Ford Foundation is a supporter of our work. Is there anything you wanna give a preview of that might be coming that folks might be interested in?

COKLEY: I find myself thinking a lot about banking and economics in the disability community. I mean, we’ve obviously had numerous conversations around the need for increases or elimination of asset limits, elimination of the marriage penalty. But I find myself thinking also about the fact that we can’t get small business loans because we don’t count as a marginalized community to the Small Business Administration. And what would it look like to sort of take the reins of capitalism and reframe things and do something differently? I mean, I don’t know what that looks like yet. I’m sort of in the early stages of throwing spaghetti against the wall and seeing what sticks. But I find myself thinking about what would it look like to go into a bank and have the bank staffed by people who are also benefits planners, who can help you figure out what can you save? How can you access these services? Or maybe they’re not, you know, the bank staff are not benefits planners, but there are benefits planners on staff. What would it mean to be able to move from a place where we’re paying GoFundMe a ridiculous service fee for every person with a disability who’s just trying to fundraise to be able to pay for a service animal or pay to have a wall removed in their home? Or I mean, we know that over one third of GoFundMes are for uninsured disability-related expenses. What would it mean to take that business from them and invest that in our community?

VALLAS: I am so excited about that, that project, that idea, and it feels just so eminently scalable. It’s like you’re starting a conversation that then becomes a model that then could completely transform disabled people’s access to capital and in a way that is actually also very connected, I think, to this conversation about radical self-care, given that sometimes what people need comes with a price tag, and one that for a lot of people is in some cases something that they can’t afford and that there might not be public policy responses that are adequate to help them meet that need. So, I’m really excited by this. And I always know you got something good that you’re cooking up. Is there anything else that you wanna name just as we close out this conversation about radical self-care when it comes to any other practices that are important for you, that’ve been important to your success, to your sustainability in this work, radical or otherwise? And I know there’s a lot of folks out there who probably could benefit from learning from you the way that I and so many others have as well.

COKLEY: I will say that the intentional scheduling is a big thing. So, the last meeting of the day, every day should be with someone that you like, and you should only meet with people you like and who feed your soul on Fridays. Because nobody wants to go into a weekend as a Debbie Downer.

VALLAS: Oh, I love that. I love that. So, you’re bringing together the creating and choosing joy as well as the intentional scheduling practice as well. I love that.

Rebecca Cokley is the disability rights program officer at the Ford Foundation. She is one of my dearest, dearest, dearest friends in this work, and I always love being in conversation with you, Cokley, on air and off air as well. Thank you for all that you do, for your incredible leadership in this movement and for always reminding me to eat, and for being such a model to so many of us when it comes to showing up for ourselves in this work so that we’re able to continue to show up for the work itself. And just a lot of love to you and to the whole family. I miss you. [theme music returns]

COKLEY: Miss you, too, Vallas. We’ll talk soon. Take care.

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 phenomenal Kings Floyd, who keeps us all in line week to week. Transcripts, which help us make the show accessible, are courtesy of Cheryl Green and her fabulous feline coworker, RouRou. Find us every week on Apple Podcasts, Spotify, or wherever you get your pods. And if you like what we do with the podcast, send us some love by hitting the 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.