This week, Off-Kilter continues our ongoing series of conversations with social justice leaders 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. As we’ve explored a good bit in recent weeks as part of this series, the disability community harbors some of the greatest wisdom when it comes to radical self-care—with disabled people as modern-day oracles, as activist Alice Wong often puts it.
Last week, Rebecca talked with Lisa McCorkell of the Patient Led Research Collaborative and Ryan Prior, author of The Long Haul, about what we can learn from the long COVID and ME/CFS communities when it comes to self-care practices like radical pacing and more. And this week, Off-Kilter is continuing to explore what we can learn from the chronic illness community when it comes to radical self-care.
A concept Rebecca has found incredibly powerful in her own life as someone who lives with chronic illness is something called “Spoon Theory”—a framework that enables thinking about energy management in terms of metaphorical “spoons.” To dig into Spoon Theory and what we can learn from the so-called “spoonie” community when it comes to radical self-care, Rebecca sat down with Dawn Gibson, creator of #SpoonieChat and a board member for the National Pain Advocacy Center. She’s a former Episcopalean minister-turned-health activist who’s spent the last decade creating a powerful online community for “spoonies” and advocating to protect access to pain medications for people who live with chronic pain. They talked about the origins and evolution of Spoon Theory, the story behind #SpoonieChat as it celebrates its ten-year anniversary, what we can all learn from spoonies when it comes to radical self-care, 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 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 this week, we’re continuing Off-Kilter’s ongoing series of conversations with social justice leaders, 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.
As we’ve explored a good bit in recent weeks as part of this series, the disability community harbors some of the greatest wisdom when it comes to radical self-care, with disabled people as modern-day oracles, as activist Alice Wong often puts it. Last week I talked with Lisa McCorkell of the Patient Led Research Collaborative, and Ryan Prior, author of The Long Haul, about what we can learn from the long COVID and ME/CFS communities when it comes to self-care practices like radical pacing and more.
And this week we’re continuing to explore what we can learn from the chronic illness community when it comes to radical self-care. A concept I’ve found incredibly powerful in my own life as someone who lives with chronic illness is something called Spoon Theory, a framework that enables thinking about energy management in terms of metaphorical spoons. So, to dig into Spoon Theory and what we can learn from the so-called spoonie community when it comes to radical self-care, I really enjoyed sitting down with our next guest, Dawn Gibson, creator of Spoonie Chat and a board member for the National Pain Advocacy Center. She’s a former Episcopalian minister turned health activist who’s spent the last decade creating a powerful online community for spoonies and advocating to protect access to pain medications for people who live with chronic pain. We talked about the origins and evolution of Spoon Theory, the story behind Spoonie Chat as it celebrates its ten-year anniversary, what we can all learn from spoonies when it comes to radical self-care, and lots, lots more. So, without further ado, my conversation with Dawn Gibson. [upbeat music break]
Dawn, thank you so much for taking the time to come on the show, and welcome to Off-Kilter.
DAWN GIBSON: Thank you! It’s great to be here.
VALLAS: Well, I have to say, we were saying this before we got rolling, but I wanna say it on the air as well, I have been such a fan of Spoonie Chat for a really long time, so I feel like it’s a long time coming to have you on the podcast. And I’m really, really excited for all the places that this conversation will go. But before we get into talking about self-care as political warfare and what that means in the context of the spoonie community and all of that, I’d really love to give you the chance to introduce yourself to Off-Kilter’s listeners and to talk a little bit about your journey from the Episcopalian Church to health and disability activism.
GIBSON: Thank you. I’m Dawn Gibson. I’m best known as a health advocate, a disability community organizer, family caregiver for skin cancer and dementia, and of course, as a writer. My day job is as a writer and as a board member of the National Pain Advocacy Center. I founded Spoonie Chat in 2013, and we’re still growing strong.
VALLAS: I love it. And we’re gonna get lots into Spoonie Chat, and that’s actually really kind of where I wanna go with the beginning of this conversation. I wanna give you the chance to talk about the story behind Spoonie Chat and how you got it going. But I’m gonna bring in some of your words as I make that segue. You’ve been quoted as saying, “I was handed a fistful of pamphlets and left to figure it out” when you first got your diagnosis of something called spondylitis. Talk a little bit about how you came to start Spoonie Chat. How did that idea come to light? What’s the origin story?
GIBSON: Well, Spoonie Chat is kind of like the ultimate Plan B situation. Plan A was to work for my church for the rest of my life. And I started with that. I already had arthritis, but I didn’t really understand how serious arthritis was and how it was gonna disrupt my young adulthood and everything that comes with young adulthood, like going to graduate school and all that stuff. So, when I decided to focus more on spondyloarthritis, which is the umbrella term for the family of arthritises that encompasses ankylosing spondylitis, psoriatic arthritis, and a bunch of other baddies. It didn’t work. Part of it was the technology was not there. I got sick in 2001. I started looking at advocacy, I would say, around 2004, 2005. But the other problem is that the community did not have a place for Black women. And part of that is just outmoded concepts of race as a biological concept, and that somehow, having African ancestry would prevent someone getting spondyloarthritis. And then part of it was there’s kind of like, for some people—and I wanna be very careful saying this—it’s some people have kind of like a mean girl situation going on. So, this disease is their club, and they did not want Black women in their club. And they were gonna do everything to keep us out.
So, I started Spoonie Chat as an alternative to being a part of my own community because it was so unlivable to be a part of that community as a Black woman. So, the Spoonie Chat got going as a kind of generalist rheumatology chat in 2013. And after a while, we were getting people who were not necessarily seeing a rheumatologist or who were seeing a rheumatologist but had other health concerns such as mental illness, cardiac disorders, that kind of thing. So, we kind of snowballed just into any situation where your inside and your outside don’t match. So, if there’s a reason that you might have a disability or a chronic illness that is life limiting or life altering, but people couldn’t necessarily tell by looking, then Spoonie Chat is for you. And then it got even bigger for people who are using mobility aids or other things that would visually mark them as living with disability. But then there’s still something where the inside and the outside don’t match. People wouldn’t understand, or people needed help understanding themselves. So, that’s how we got going.
VALLAS: Before we get too much further into this, I have to ask you to talk a little more about this really powerful concept of the inside and the outside not matching. Talk a little bit about what you mean by that. That’s an incredibly profound way to put it.
GIBSON: Oh, thank you. The main idea is that ableism is so pervasive that we feel that we can tell by looking at somebody what they can do and if their access needs that they may be expressing are legitimate. And that is a widespread cultural belief. And a lot of it goes back to the idea that there must be some risk of fraud, that a person using a wheelchair who doesn’t necessarily exhibit all [sighs] kind of the nonsense culturally perpetuated ideas about what a legitimate wheelchair user is, that somehow there’s, they’re trying to get away with something. Or somebody who, they are wearing a mask, and people don’t want them to wear a mask or whatever. It’s just that somehow there is this undercurrent of people trying to get away with something or trying to get something that they shouldn’t have. And that is a very strong barrier to identifying with disability.
So, a person who is good hearted and very well educated and they’ve taken the time to understand their illness, they’ve taken the time to understand everything, they’ve been offered every advantage and opportunity, they might still say, “Well, I’m not disabled because I can walk. I’m not disabled because I can see. I’m not disabled because I don’t need oxygen,” whatever it is. When that’s, it’s not, disability is, is not validated and understood by these visual markers. That’s just not true. It’s not right. It’s not the experience of our community, but it’s such a powerful, powerful barrier to understanding ourselves, to creating community, to seeing ourselves as part of a community that is already existing. It’s so bad. So, I try and swing an axe at that every day.
VALLAS: I love that. I feel like we could probably have an entire podcast episode just unpacking that set of themes. And maybe there’s more that we’re gonna come back to in this conversation that pulls on some of those threads. But I feel like before we get too much farther into this conversation, we need to talk a little bit about what Spoon Theory is. And for anyone who’s not familiar with Spoonie Chat and maybe anyone who’s hearing this and going, “Spoonie Chat? What is ‘spoonie’ a reference to?” Well, without further ado, folks, here we go. We’re gonna explain it. And, Dawn, I have to say the inspiration for me in having you on the podcast, finally, as part of this series that we’ve been doing about self-care as political warfare, and in particular what we can learn from folks across the disability community when it comes to self-care was I really wanted to get into the concept of Spoon Theory. And I can’t think of anyone better than you to come on and talk about it given your leadership in creating community for spoonies, and really, in expanding the concept of Spoon Theory in ways that you will talk about it. It’s a concept that was originated by someone named Christine Miserandino in a book that’s called You Don’t Look Sick. We’ve got a link to that in show notes. Talk a little bit about what Spoon Theory is, and then we can also talk about how you’ve come to actually expand and broaden and make more inclusive that very powerful concept and term.
GIBSON: Yes. Spoon Theory is the reason I am still here, I think. Because when I was first really coming to grips with what does it mean to live with arthritis, which is basically to hurt and feel tired all the time and to be stiff and nothing works on your body all the time, but you look so-called normal, and maybe nobody believes that you’re sick. And by the way, you’re in your 20s, and you just have to keep living your life and go to work and work enough not to get evicted from your apartment! Like, that’s the experience of having arthritis in this country as a young person. The Spoon Theory is basically a lingua franca, so a way for a community to speak about their experiences. And in this case, we can make an analogy between spoons and money, and we make this analogy of money and resources and spoons, because Christine, when she was sitting in a diner with one of her closest friends, ended up describing what it means to have a budget of spoons because they were at a diner, so she had spoons and forks and knives. And she said, “Look, you’ve got a limited number of spoons or resources in terms of energy and motor skills and just vitality, the ability to do things, an ability to live. And you have more things to do than you have spoons. So, you will have to spend more spoons than you have, or you will have to cut back on your activities so that you don’t reach into tomorrow’s spoons and run out of your energy.” So, in that way, it’s an analogy to deficit spending. It’s an analogy to cutting away at the foundation of your vitality tomorrow by living today.
And you have no choice. You have to figure out how to shower. You have to do your laundry and fold your towels. I find folding towels one of the most challenging parts of being alive, honestly, ‘cause I get so tired. And there’s always a minute, midway through folding all the towels where I’m like, I just wanna lay down now, but the towels [laughing] will not let me lay down! And then I have to put the towels away, and then I have to make dinner. So, any of these tasks cost spoons, and I don’t get to decide how many spoons I have to spend. No patient does. The disease is always, no matter what the disease is, and the life circumstances are always reaching into the drawer and pulling some out. And then you might not know how many you have either. So, yeah, it’s all about this impending collapse of the ability to live your life. And that could come any time of the day.
VALLAS: And then on the flip side, it ends up being a tool—and this is what I’m hearing come through as you’re saying this—for planning your energy management in a way that is intentional and that allows for sustainability, and if not predictability, at least intentionality. And so, I wanna spend some time on Spoon Theory because this, it just, it’s always felt to me to be an incredibly, incredibly valuable framework, not just for folks who identify as disabled or chronically ill, but really, for anyone who’s trying to engage with intentionality around energy management, which honestly, should be all of us. And it’s been a theme that has definitely shown up throughout this series of conversations about self-care in the social justice movement. Talk a little bit more, if you would, about how you actually work with it. You mentioned folding towels, and I am also not a fan of folding towels, although now I’m gonna think about you every time [laughing] I fold towels!
VALLAS: So, thank you for that. But how has Spoon Theory—you mentioned you’re here today because of it—I mean, how has it shown up in your life as actually a tool for radical self-care?
GIBSON: I think the main thing is that learning the Spoon Theory and accepting it meant accepting myself. So, my divergent body does not do a good job with making enough energy. My divergent body does not do a good job with unpredictability, and I have to make choices. I cannot let other people make choices about how I spend my time, how I spend my energy. If I do that, I will just have no energy left, and then I will have days of feeling like something the cat dragged in. But when I say something she dragged in, it’s like she dragged something in after running a Tough Mudder mountaintop road race. And then I was the thing dragged behind her [laughing] over all through the peaks and valleys. I would be destroyed by letting a system around me decide what I’m doing and how I’m going to do it. I have to decide, and I have to be ruthless in my choices about who I’m gonna engage with, what topics I’m going to engage on, all of that stuff. And if you see me doing something, it’s because I chose to do it. I really wanna do it.
VALLAS: I love that. And just staying with Spoon Theory for just a moment, do you think in literal terms of spoons? And this is a question I’ve actually asked other people who engage with Spoon Theory, too. And so, I’m genuinely very curious and interested in your answer. Is there a way that you’ve put it into practice that takes the general and takes the abstract and actually starts to quantify it in any particular way? Or do you think about like, this activity is gonna take me this number of spoons? I’m very curious how it actually shows up as a tool for you.
GIBSON: Not any more. I have been sick for 22 years, so that’s almost half my life has been spent with arthritis. So, I just kind of check in with it. If I’m going to go grocery shopping and put away my groceries, that’s gonna be the big thing that I do that day because I know it’s just gonna be so energy intensive. If I’m going to do my laundry, that’s not gonna happen on the day that I go grocery shopping. So, I tend to just make lanes for myself now. So, one day a week I’m doing chores. Another day a week, I might run errands, that kind of thing. But the main thing is trying to reconcile in my mind, in myself, is the energy there today? If the energy is not there, then I have to make a choice. Am I going push myself? ‘Cause sometimes I have to, because I’ve made an appointment, and I need to keep that appointment, so I’ll have to push myself to that appointment. But then I know that for the next couple days I will have to really keep it, keep my energy expenditures low. So, that’s where I’m at. But that’s after so many years of this and also learning how to work with my diet and how to work with rest and restorative practices.
But somebody early on who is just figuring it out maybe doesn’t even understand their own body in any comprehensive way may really benefit from making a budget, writing out a budget and saying, “Okay, I use one spoon on I’m doing this. I use ten spoons doing my laundry.” I know I keep coming back to the laundry, but it’s just so bad! ‘Cause I have to walk down to my basement and try not to fall down the stairs with all my stuff. And then I’ve got to get all the stuff in there. And God help me, I’ve got to pull the wet clothes out of the washer and get them into the dryer and not drop them on the floor. That is a lot, so, yeah.
VALLAS: No, and I love the analogy, right, of thinking about it like a budget. And you mentioned that before in invoking how Christine Miserandino had actually come around to bring spoons in as the visual aid for the framework, right, sitting in a diner and saying, “Let’s think about it like this,” or let’s analogize it to budget, to deficit spending, as you mentioned before. But I love thinking about it as like, you have a budget of energy, and how do you wanna think about then how you spend the energy that you have?
And I have to say, I think I’ve been somebody who has lived with chronic illness for a long time, not quite as long as you. I’m not quite at 22 years, but I will just confess. And I’ve been very vulnerable and out throughout this whole series of conversations about radical self-care on this podcast. But I’m actually fairly new to actually engaging with any intentionality around how I care for myself in that way and to thinking about energy management in these terms. And so, I’d say I’m probably still at the stage of needing to think about it in terms of a literal budget. And I still have days, not that infrequently, where I run out of steam, and then there’s more things that I said I was gonna do. And then I’m in that place of having to say, no, I have to go ahead and tell people, “Sorry, I can’t do this stuff today because I’ve hit a wall.” And so, it’s not like just because you’re pushing 40, you’ve necessarily figured this stuff out. So, I love how you put that, and that’s part of why I’ve been looking forward to this conversation.
But coming back to Spoon Theory as a framework, if I understand correctly—and this is from admiring your work and watching your work with Spoonie Chat over the years, as well as reading some of your writing and reading some of the interviews with you that folks have done at different points—my sense is that you are really one of the people, if not the person, who is responsible for taking that concept of Spoon Theory and the notion of who are spoonies and actually expanding it to include anyone who lives with chronic illness. Do you have anything that you wanna share about that story behind taking spoonies and expanding it to be a more inclusive concept? How did that happen, and what’s the story there?
GIBSON: Oh, yeah. This is a, it’s kind of a wild one, because a lot of times in life, we don’t know that we’re innovating, right? Like, it’s more just accommodating a need that is observed. So, for me, one of the reasons I’m in health advocacy is that I saw the same questions being asked over and over and over in comment sections. And I guess it’s important, too, [laughs] to point to the fact that I am a, in disability terms, I am an elder at 46 years of age. That is kind of an old person. And my work and my formation began before social media. So, there used to be kind of a brisk business in the comment sections of websites, exchanging tips and making friends and all this stuff. And there were some other platforms for that too, but it was the comment sections of websites where I really saw that people didn’t understand certain things. So, no matter what the illness was, they didn’t understand the disease process. They didn’t understand the risks that they, the specific risks, like reasons that you might need to go to the hospital tonight, that kind of thing. And that they could ask for pain management, that they could ask to manage their nausea. There were all kinds of things to be done. They didn’t have to approach life as like some type of butch Rambo situation that they’ve got to conquer all the time through their force of will or whatever. And that was almost any illness there is, it was the same questions.
So, I was just kind of like, you know what? I’m starting to see that there’s a lot of disabled people who do not know that they’re disabled. They literally don’t get it. And this is not because they were lacking care and concern for their own situations. It wasn’t because they just couldn’t be bothered, anything like that. It was because there was this giant gap between the idea of disability and the lived experience of disability. So, the idea of disability goes back to what able-bodied people can see that could cause a disability. And then there might be a little flexibility in there because some people could understand, well, there could be something that I don’t quite understand that this person has that causes an access need. But there’s, for the most part, I know it when I see it, when someone is disabled. And so, of course, people who join disability particularly later in life after childhood and don’t have a formation process of any kind, they don’t know that they’re disabled until something really bad happens. And even then, they might not understand it as disability. They might just see it as, “Oh, I should’ve done a better job taking my insulin” or whatever, something like that. So, I thought, eh, we gotta get going here. But I didn’t really know who “we” was other than some big famous people. So, I was like, ah, let me just start tweeting and see what happens. And that’s it.
VALLAS: I love that. “Let me just start tweeting and see what happens.” And the rest ends up history. So, let’s get back to Spoonie Chat then, because that’s the part that comes after the you just started tweeting. What has it been like hosting Spoonie Chat? How has that evolved over the years? What kind of things do folks share in Spoonie Chat? Talk a little bit about what a Spoonie Chat feels like for folks who maybe haven’t seen it or haven’t been part of it?
GIBSON: Yeah. So, Spoonie Chat is a scripted chat experience. So, I load up, I used to tweet, Spoonie Chat used to be two hours long. Let me say that first because I had this infotainment mindset. So, I thought, I’ve gotta just flood the zone, and I’ve got to give people lots and lots and lots of things. And yeah, so, it used to be two hours long. It used to have about two and a half times as many questions. So, now I run about seven questions, and they’re, you know, it’s all automated so that I can just focus on the people that have kindly joined me. But the main thing is that we have questions about how we’re doing. Then we have questions about a particular topic. So, it might be self-care, it might be how to use the airport, how to go grocery shopping, how to handle fatigue, how to handle when nobody believes you, what to do if you think your diagnosis is wrong, that kind of thing. Then people talk to each other as well. So, they’ll reply to me, they’ll reply to each other, they’ll share their links for their mutual aid campaigns, that kind of thing. But for me, the main thing is helping people understand that they’re disabled, helping people understand that they’re not alone, helping people to find themselves through community.
Because the biggest deficit we face other than the finances and the frayed social contract, or even we might say a collapsed social contract, that this country is operating with is that there is not visibility for our people unless we create it ourselves. And if we don’t have that visibility, then we don’t know that we exist. We don’t know that we’re beautiful. We just don’t know. You don’t know you don’t know. And that is the heart of my work. That’s what my advocacy is, is saying, “Hey, we’re here. We’re great. You’re a part of something no matter what your diagnosis is. Maybe you don’t have a diagnosis.” And some people, frankly, are never going to have one because maybe science isn’t there to diagnose them, or maybe they do not have access to medical care, whatever it is. So, there’s this idea, this terrible idea pervasive in society that if you go to the doctor, you will get some help! [big old belly laugh] And maybe! But if you go to your community, you are going to get some of the most important help you need. And it may even be finding the right doctor, finding the right researcher, that kind of thing, finding out the right test. So, that’s what we’re talking about.
VALLAS: I love that. And also, in this, there were a lot of reasons why I felt like this was the right next conversation to have in this series following up on the conversation I had last week with Lisa McCorkell and Ryan Prior talking about their own work within what they describe as patient advocacy. And we were talking about some of these same themes and also, what it looks like when going to the doctor isn’t actually the panaceas, shall we say, that one might hope or expect. So, I love this as sort of pulling on some of those threads from last week. And I’ll put a plug for folks to go back and listen to last week’s episode if you missed it. We’ve got a link to it in show notes. It’s a really nice counterpart to this conversation.
But Dawn, I wanna ask you the question, and I asked the same question last week to Lisa and Ryan, and that’s how do you see, and what is the significance of, the famous Audre Lorde words that really were the origin of this series, self-care as political warfare? How do you see that concept showing up for the spoonie community? And I’m curious, do you see Spoonie Chat itself as a form of radical self-care?
GIBSON: Yeah, we are doing radical self-care. We are very aware that if we don’t take care of ourselves, we will not be here. That is just a fact. We are, depending upon our diagnosis, we have particular needs. But at the end of the day, there isn’t, like, our society does not care about keeping us around. Not really. [laughs] So, we have to intervene for ourselves. And I know for some people, that sounds hyperbolic. But look at where we’re at, you know? I mean, people can’t even safely go to the doctor right now, they are struggling with housing, they’re struggling in every possible way. So, we have to intervene for ourselves.
But the other thing is that we have to understand a different model of self-care. The conventional model of self-care basically says you have to take care of yourself to prevent getting sick. And then we fall off the map. It’s not quite antiquity, but what, 600, 700 years ago, they used to draw these massive dragons on the edge because they didn’t know what else was out there. And so, it’s just dragons. And we’re out there swimming with the dragons because once you get sick and don’t get better, it’s a completely different paradigm. And so, there’s something very radical in a society built up around earning and powerful displays of dominance through conquering, all this other stuff, if we say, “You know what? You should take a nap because you deserve a nap because you’re a human being. You do not have to earn your naps. You should eat a meal that is the right meal for you because you are a human being, and you deserve meals.” That is very radical. I didn’t understand that it would be so radical to say something like that, but it is. And it makes me sad as well that we even have to say this, but I can be sad. I can do sad. It’s fine. We’ll just keep going.
VALLAS: Well, Dawn, I think you’ve given a title to this episode: Swimming with the Dragons is what we’re gonna have to call this episode. So, thank you for bringing that in. And I think I’m gonna wanna talk off-air a little bit more about some of that imagery and where that comes from, because now I’m really curious. But staying with Spoonie Chat, do you have any reflections, now that you— How many years have you been hosting it, actually? Let me ask that.
GIBSON: This is year ten!
VALLAS: Oh, my gosh. The ten-year anniversary. Oh, I love this.
GIBSON: [laughs] Yeah!
VALLAS: I love this! This is perfect. So, ten years of hosting Spoonie Chat. As you’re reflecting back on a decade, do you have any reflections or any learnings about how it has supported your own self-care and sustainability as an activist?
GIBSON: Well, I had to grow up. That was important. In the beginning, I had no idea what we were, what I was doing or what I was headed toward. I literally just thought, let me see what I can make happen. And I kind of…I kind of discourage people from doing that kind of thing! Because it’s better to have goals, goals and visioning process, and to check in with that rather than to just kind of desperately hang on. ‘Cause there were many times where I was desperately hanging on because it was very difficult to find work as a writer. Everybody wanted it for free, of course, which is terrible and all of that. But the main thing for me was that I had to come into an alignment between what I was saying I believed about self-care, about disability organizing, and what I was doing. So, once I got to the point where I had, let’s say, 1,000 followers, and I was getting a certain amount of traction, I felt like I have to clean up my act because just pushing myself relentlessly was not consistent. You know, that was, in fact, morally bankrupt to be talking about taking, we should all take care of ourselves, but I didn’t take care of myself very well.
And I had plenty of reasons for that. I grew up in a home with a certain amount of difficulty, and then I launched Spoonie Chat a year after my mother died. And that was the worst time in my life, trying to figure out, like, how do I go on without my mother? We were not particularly close, but I didn’t want her to die. And I certainly didn’t want her to die before we found a way to get along very well. [laughs] And there I was, 36 years old, facing the fact that I was never gonna see my mother again. And, oh, my God, what am I gonna do now, right? So, I had to really figure it out, how to take care of myself and how to be the person that I was projecting and the person that the people were admiring and listening to. I thought, “Oh, my God. Now people are listening to me. What am I gonna do now?!” That was kind of crazy, or bananas, that people were listening to me. So, yeah, it was messy. It’s less messy now. It’s going better.
VALLAS: I love that honesty in that answer. And I have to say I really resonate with a lot of what you just said. And actually, I have a similar story with why I ended up deciding to even bring self-care and radical self-care as a concept into this podcast. And it honestly came from an awareness that I started to gain around how I had modeled really, really, really bad behavior and choices throughout my own work. And it started coming into my awareness how many people had maybe learned not-good practices from me working way too much and not taking care of myself. And then I feel like in a lot of ways this series and this new frame on the podcast has actually been me kind of not just getting right with my own relationship to the work and to myself, but it has also been a little bit of evening the scales, shall we say, of bringing in some of the right practices and creating platforms from that because of a really similar realization. So, I really appreciate you sharing that and being so honest in how you just said that, Dawn.
I’m curious your thoughts on what folks who don’t identify as chronically ill or as members of the disability community might be able to learn from spoonies and from the concept of Spoon Theory when it comes to energy management and to sustainable work and life practices. I mentioned before that this is something I’ve certainly thought a good amount about and in the context often of bringing up Spoon Theory to people who are not people who identify as members of the disability community. And I’m curious what your view is. Do you view this as a framework and as a way of thinking about energy management that has broader applicability for folks that are looking to engage with self-care but who maybe don’t identify as members of the disability community?
GIBSON: Yeah, there’s so much there. To me, the main thing is if you’re not disabled, it’s okay to be catalyzed and inspired by the Spoon Theory and the conversations that members are having. But keep it to the catalytic rather than the appropriative because we are the ones experiencing the crashes when things go wrong. We are the ones struggling every day with the uncertainty of what will our bodies be able to do. And that is a source of deep anxiety and trauma. So, if you’re not experiencing that anxiety and trauma, maybe limit how much you refer to the Spoon Theory for yourself, but instead, focus on elevating the voices of others who are living this and validate what folks are saying. Put that out in public, that kind of thing. If you’re a researcher, a health care provider, or a journalist, certainly pay close attention. See how you could include the work of others in your own work. Again, elevating those voices and making it clear that this is a source of expertise to be respected. These are experiences to be respected. But it’s important not to intrude.
And I say this as someone, I’ll give you the, I guess I can give you this example. I have two best friends. One is Ukrainian. One is Polish. Ukrainians and Poles are going through a lot right now. I am able to support. I am able to elevate Ukrainian and Polish voices. I am not able to speak as though I’m Ukrainian or Polish because I am not Ukrainian or Polish. So, that boundary is important to me.
VALLAS: Yeah, I love how you framed that. And also, I kind of wanna get you a t-shirt that says, “Keep it to the catalytic and not be appropriative!” [laughs] ‘Cause that sums it up beautifully, that boundary. I love that answer.
GIBSON: The one thing I’ll sneak in here is that the main thing that the Spoon Theory can offer anyone is the reminder that there are limits. So, every human being will eventually run into the limit of what is possible. We might run into it sooner. We might run into it later. We might be able to kind of tweak with enhancements. Like, I could conceivably shotgun a bunch of coffee and Coke Zero, and I could stay awake for two days and write some big, probably very weird novel, for some people.
GIBSON: People would be like, “I smell Coke Zero.” But that is not the same thing as taking good care of myself. That is not the same thing as being a good steward of my gift of writing. That is not the same thing as being a good example for the people around me! That’s terrible to do. And so, we’re living in a culture that valorizes busyness and exhaustion and so-called no limits. And it’s all such nonsense. And I use “nonsense” intentionally here because it literally does not make sense. If we sit down and we think about what is the best way to take care of a human being, what is the best way to take care of a community, what is the best way to live into something worth believing in, what we’re doing ain’t it. So, nonsense. I know some people think of nonsense as talking about something that is frivolous or flighty or just a little thing that is annoying. No. No, nonsense is threatening. In my opinion, nonsense is life threatening. Because if we have thoughts, or if we have a framework, I should say, that is not based in reality, it can’t go anywhere good.
VALLAS: It’s beautifully said. And it is part of where we are right now in this Kairos moment where we’re all sort of being pushed through the birth canal, as it feels, right, of some kind of massive societal paradigm shift.
Dawn, along those lines, I’d love to actually switch gears for this next part of the conversation and bridge some of the micro with the macro, which I feel like is actually sort of where the conversation is starting to organically head. And so, I wanna take it there. And this is something we’ve been looking to do throughout this series, right? Self-care very frequently only gets talked about as an individual thing, right? It’s bubble baths and clay masks and all of that, the way that it usually gets talked about.
VALLAS: But at the same time, right, part of what we need to be explicit about as we also have a deeper and more rigorous conversation about what radical self-care looks like that’s more in keeping with what Audre Lorde meant when she said her famous words, we also need to be talking about and thinking about what are the structural barriers that folks face to being able to actually take care of themselves? Because rest and other forms of even basic self-care before you get to the radical are not actually equitably distributed and accessible in this society the way that we’ve built it. That’s something we’ve talked about a lot on this podcast throughout this series and especially in recent weeks, but I’d love to bring you into that ongoing conversation thread as we sort of bridge some of the macro and the micro to hear a little bit about what you’ve heard and seen through Spoonie Chat and also through your own experience when it comes to what are the structural barriers that folks face to being able to, say, rest when they need to or to otherwise take care of themselves?
GIBSON: Yeah, there’s so many, [laughs] so many barriers people are facing. One of the most fundamental barriers, though, is adverse childhood experiences. So, when people come of age in environments that do not teach or allow rest and a vision for life other than survival, they are starting life so far behind. People living with adverse childhood experiences tend to be poor, they tend to be insecurely housed, they tend to not have good health care. So, this is synergistic, of course, too, because these difficult situations create ACEs, and then they are life limiting as time goes on. And it’s tempting with self-care and conventional wellness culture to look at people who seem to do such a bad job living their lives and say, “Well, they just need to do a better job.” And of course, we all have some responsibility, according to our abilities and everything, to take good care of ourselves as best we can. But we’re really, in the spoonie community, we’re looking at a generation of people who have been traumatized, who have been neglected, in many ways, and do not have even the secure attachment styles that would be required to pursue help.
On the other hand, I think the fact that we’re living in a time with social media that allows access to information, just to understand that an adverse childhood experience exists, to understand that it’s possible to have anxiety that you don’t even know you have, all of these things, we have opportunities now that we didn’t have before. But that doesn’t make up for poverty, that doesn’t make up for health disparities that are geographical in nature, any of that. So, that is huge. But I think the other thing is looking at the way that disability and poverty go hand in hand. So, poverty can create disability, and disability can create poverty. And I see that the overwhelming majority of the membership is poor in one way or another and cannot get what they need.
VALLAS: Yep, that’s often a refrain on this podcast, right? Disability is a cause and a consequence of poverty. And actually, what you just said is exactly the origin story of the Disability Economic Justice Collaborative and the way that we approach this work at The Century Foundation. So, I love that you brought that in here and weaving that into that broader conversation. And I’ll also, again, plug the episode that we did last week because there’s a lot of policy discussion in that as well when it comes to the huge, huge, huge share of our population who does not actually have access to paid leave or paid sick days. That’s a huge part of the conversation too. So, for folks who are curious about a little more of the public policy side of this, check out show notes, and we’ve got a link to last week’s episode.
Dawn, we mentioned up top just briefly, but I wanna go back to it because I really, really wanna see where this next part of the conversation goes, and I’m really excited to hear more about some of your story of moving from the Episcopalian Church into the work the way that you approach it today. But something that I have noticed is that every Spoonie Chat ends with an affirmation. And so, I mentioned before that before becoming a health activist and starting Spoonie Chat, you were in the Episcopalian ministry, and I’m curious to give you a chance to talk just a little bit about how spirituality shows up in your understanding of this work and the community that you’re a part of, but also your relationship to this work.
GIBSON: I was a lay chaplain in the Episcopal Church. I worked with youth and young adults. So, some of my charges were little kids, pre-K through grade eight, and then I worked with college students. And the most important thing about chaplaincy is that we are speaking to a deep human truth that every person matters. No matter what their life circumstances are, there’s something essential and transcendent about living life. And so, if you’re poor, that doesn’t make you less valuable. If you’re rich, that doesn’t make you more valuable. If you’ve been completely debased and traumatized, you are still a person, and there is a future for you. And so, depending upon your theology, there’s different views about what that means and how that would function.
So, for me, I didn’t even start Spoonie Chat with an explicit understanding of chaplaincy, although I spent years working as a chaplain, and it’s a hard habit to shake. [laughs] So, I just thought, well, how can we speak to the truth about what it means to be alive? And I believe that being disabled does not have to limit what our lives are. We come together as a community. We are important to each other. We are important even if nobody notices us. You know, all of that, I believe that strongly. But the other thing I believe is that our community needs beauty. We need to be celebrated. So, that’s where the spoonie fairy godmother comes in. She is a character, of course, played by me, although I pretend that it’s not me. [laughs] And she wants to make their dreams come true. And so, she wants to know what are their dreams, and only they can tell their dreams. Nobody else is in charge of their dreams. Nobody else is in charge of their vision of the future and of the beauty that they want for the world and for each other. And she just listens, and she is always there for them.
VALLAS: I love that so much. How did you come up with the idea of the spoonie fairy godmother? Where did that come from?
GIBSON: I wanna say it was 2016, and I was thinking of the idea of fairy tales for our people. And of course, if you’ve got a proper fairy tale, if you go on long enough, you’re probably gonna get a fairy godmother of some kind. And yeah, so, we just started there, and every once in a while, I would bring her out. And then I guess for the past three years, she’s been out all the time. I just bring her out for the conclusion of chat so people can submit their fairy godmother requests, and they can be anything. And I guess you could say it’s also kind of like a social worker/psych device where people will name their truth without having to own it entirely, so they can get comfortable understanding something about themselves over time. And they might say the same thing several weeks in a row. They might say the same thing all the time. I frequently want her to fold my towels. I also would like her to carry laundry detergent into my house, [laughs] that kind of thing. But I guess it goes with the butterflies, too, because I raise butterflies, and I release them every year. And I take pictures, and I dedicate them to our community. And that is, to me, it’s a very radical act of beauty because we are almost never celebrated as beautiful, and we are almost never centered in beauty, to say, “Hey, you know who needs something beautiful? Disabled people.” Almost never happens.
VALLAS: Dawn, I love this, and I don’t think I knew this about the butterflies. This is beautiful. And also, it feels like it’s just such an apt metaphor for some of what you do with the spoonie community. Do you think about yourself as someone who raises butterflies in other parts of your work?
GIBSON: Yeah, I do. I’m doing butterfly stuff all the time. So, right now, I literally, I have five chrysalids in my dining room. They overwinter in my dining room. I had seven. Two of them released early, and I had to go over to this store that I will not name that they have these potted flowers that are for gift giving and whatever. And I had to release these early butterflies surreptitiously in the store because it was too cold. They would’ve died if I put them outside, you know. So, these are the type of capers that I’m up to most of the time. [laughs] It is not something that makes sense to be doing, sneaking a butterfly into a store! [squeal of delight] Yeah. So, I’m just like this all the time.
VALLAS: Oh, my God. I love it. I love it so much. And I feel that fairy godmother energy from you, too. So, she’s in you all the time, not just during Spoonie Chat. That much is clear. That much is clear.
So, Dawn, we would be remiss if we didn’t make a little bit of space to talk about some of the work that you’ve done over the years when it comes to protecting access to pain medications for people with chronic pain. This has particularly become an issue in recent years as policymakers have sought to grapple at all levels of government with the opioid epidemic. But there have been crackdowns that have gone really, really, really a lot too far, in the opinion of folks who come from the chronic pain community. And you are, in addition to the creator of Spoonie Chat, you’re also a board member of the National Pain Advocacy Center, an organization I’m a huge fan of, and which is actually a member of the Disability Economic Justice Collaborative. So, I have the privilege of getting to work with that terrific organization in my day job as well. How do you see the conversation around pain medications relating to the conversation about self-care? And I’m gonna bring in a few of your words here. Something you’ve been quoted as saying in a number of different places is, “It’s not okay to make chronic pain patients suffer.” What are your thoughts about the relationship between that debate and the conversation about radical self-care or just self-care more broadly?
GIBSON: There’s definitely a lot of overlap between the two conversations. For the most part, I see that the discourse around pain is centering blame, skepticism, kind of the laziness/fraud concept that we discussed earlier, saying that pain patients just don’t try hard enough. And when we stigmatize an entire population to say that they are just insert-bad-word-here, and if only they would insert-ethereal-magical-thing here, we’re in real trouble because it’s not real. It’s not based in reality. The fact is that some pain patients are never going to get better, and they are always going to be in pain unless we do something about it. And it is not okay with me that we have chosen just to make pain patients suffer, and we write that off as a cost of doing business in this policy framework. So, I take that very seriously.
And with self-care, at the end of the day, some people can do everything right and not benefit very much from it. They’re not gonna feel better, or they might feel such a tiny bit better that it’s not worth the money that they’re spending, or it’s not worth the effort, in their minds, because they’re not seeing anything. But we have to push a culture that says that everybody deserves good self-care, and it shouldn’t be so hard. Because everybody’s a person, and people deserve to be taken care of. That’s what being people is about, is needing and receiving care and giving care and exchanging care. That’s the interwoven thing of life, right? But there is this, [sighs] I don’t know, kind of doom, there’s an acceptance of a doomsday that, “Oh, yeah, some people are just gonna be left behind, and it’s unfortunate. But yeah, you’re gonna lose a few people, blah, blah, blah.” No. [scoffs] No, we do not have to lose anyone if we are providing proper care, if we are advancing the science, if we are doing everything within our power, and then finding new things within our power to make thriving possible. We just have to keep going.
VALLAS: I love that, and I can’t think of a better note to end on. I wanna plug Spoonie Chat again. Folks can find more information about that in our show notes. And Dawn, before we close, how can folks join Spoonie Chat, when does it happen, and is there anything you wanna plug before we wrap?
GIBSON: Yes! Thank you. Spoonie Chat is most Wednesday evenings at 8 PM in the Eastern time zone on Twitter. We have a newsletter that is just getting going. It’s called The Spoonie Chat Newsletter. It’s on beehiiv. And I also have a website coming out in the next two months for Black women with spondyloarthritis. So, super excited about all of that.
VALLAS: Oh, so exciting. So exciting. So, we’ll have to have you back at some point to talk more about that next chapter of your work. But Dawn, this has been so much fun for me to get to be in this conversation with you. And I am really grateful to you for all the work that you have done and do and all the community that you create, and I really look forward to continuing to be in touch. And just a lot of gratitude for your leadership within the community.
GIBSON: Thanks. Me too. [upbeat music break]
VALLAS: Hey, Off-Kilter listeners, help us change the future of health. The American Association on Health and Disability has partnered with the All of Us Research Program. All of Us has a simple mission: to speed up health research. To do this, they’re asking one million or more people to share health information over time. In the future, researchers can use this to conduct thousands of health studies. This could improve health for generations to come. The American Association on Health and Disability hopes that All of Us will support health research to benefit the disability community. That can only happen if people with disabilities join All of Us. Learn more about the AAHD inclusion statement, No Research About Us Without Us, at JoinAllOfUs.org/inclusion and find out how you can become one in a million. More information in show notes. [theme music returns]
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.