Something that gets talked about a lot in conversations about self-care is the notion of “being your authentic self.” But rarely do such conversations contemplate the structural barriers and discrimination many of us face to being our authentic selves, particularly in the workplace. So when The Century Foundation ran a commentary last month (as part of TCF’s Voices of Disability Economic Justice Project) called “The Economic and Emotional Costs of Autistic Masking,” Rebecca knew it was a conversation she wanted to bring onto the podcast. As author Alex Ashley Fox writes in the piece, “despite the cognitive and emotional costs, masking is a necessity for most autistic people. It’s a matter of social survival in a world that isn’t welcoming of the full spectrum of the human condition.”
So for the next installment of Off-Kilter’s ongoing series exploring radical self-care, Rebecca sat down with writer Alex Ashley Fox and Emily Ladau, editor of TCF’s Voices of Disability Economic Justice Project. They had a far-ranging conversation about the costs of autistic masking, as well as masking more broadly in the context of radical self-care, and went behind the scenes of the Voices of Disability Economic Justice Project as well.
Read “The Economic and Emotional Costs of Autistic Masking”
Follow Alex on Twitter @followaafox
Follow Emily on Twitter @emily_ladau
Learn more about and pitch the Voices of Disability Economic Justice Project
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REBECCA VALLAS (HOST): Welcome to Off-Kilter, a podcast about the fight for economic liberation and what it will take to set us all free, powered by The Century Foundation. I’m Rebecca Vallas, and I’m a former legal aid lawyer turned policy advocate who works with public policy and law, as well as organizing, coalition building, and narrative as tools for building a more just society, one premised on collective consciousness of our common humanity and the inherent dignity and rights that come with being human. Every week I talk with visionary leaders working to reinvigorate our shared imagination and disrupt the off-kilter imbalance of power in the US to build a society where everyone can thrive and experience the shared abundance we all deserve.
And as we continue Off-Kilter’s series of conversations with leading thinkers 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, I’m incredibly excited to share this next episode with all of you. Something that gets talked about a lot in conversations about self-care is the notion of being your authentic self. But as with so many conversations about self-care, most of what gets said on the topic of being your authentic self ends up being pretty superficial, and rarely does it contemplate the structural barriers and discrimination that many of us face to being our authentic selves, particularly in the workplace. So, when The Century Foundation ran a commentary last month as part of our ongoing Voices of Disability Economic Justice series entitled The Economic and Emotional Costs of Autistic Masking, I knew it was a conversation I wanted to bring onto this podcast. As author Alex Ashley Fox writes in the piece, “Despite the cognitive and emotional costs, masking is a necessity for most autistic people. It is a matter of social survival in a world that isn’t welcoming of the full spectrum of the human condition.”
So, for the next installment of Off-Kilter’s ongoing series exploring radical self-care within the social justice movement, I had a ton of fun sitting down with writer Alex Ashley Fox, and Emily Ladau, editor of TCF’s Voices of Disability Economic Justice Project, which was launched last year by TCF’s Disability Economic Justice Collaborative and runs commentaries from disabled writers on the economic issues that matter most to them. We had a far-ranging conversation about the costs of autistic masking as well as masking more generally and went behind the scenes of the Voices of Disability Economic Justice Project as well. You can find links to Alex’s Piece plus more info on how to write for the Voices project in show notes. And without further ado, let’s get into that conversation with Alex and Emily. [upbeat music break]
Emily, thank you so much for taking the time to come on Off-Kilter. It is super fun to have you on air since you’re somebody I really love getting to work with off air.
EMILY LADAU: This is so exciting for me because I’ve been an Off-Kilter fangirl, and now here we are having a conversation. I’m also a Rebecca Vallas fangirl, so I mean, this is like dream come true situation.
VALLAS: Well, it’s a mutual admiration society for sure.
LADAU: [delighted laugh]
VALLAS: Because I have been a long-time Emily Ladau fangirl as well. So, this is gonna be a really fun conversation. So, I feel like the right place to start is to say that you have a ton of different ways that you are a real leader within the disability rights and justice community, and in that various multidimensional leadership that you bring, you wear a bunch of different hats. And one of those hats is editor of the Voices of Disability Economic Justice Project. That’s part of what we’re really gonna be focusing on for this conversation. But you’re also an author, you’re a speaker, among a whole bunch of different things. So, before we get into talking about the Voices project, how do you come to disability rights and justice work? And maybe would you share a little bit about your path of how you got to where you are today?
LADAU: Yeah, absolutely. I’m happy to give a little background, and I would say that background is probably the exact right word for how I come to a lot of this work, because what is really important for me is not centering myself in conversations around disability, but rather talking about disability with the acknowledgment that I am only one person and that I approach this work as someone who exists at the nexus of privilege and of marginalization. And so, I’m really, really passionate about storytelling. And yes, I do share my own story from time to time, but what’s most important to me is amplifying stories of disability from as many different perspectives as possible. And so, I acknowledge that I am a white woman who has a physical disability, who identifies as the gender that I was assigned at birth, who is someone that has not experienced things like housing insecurity, like food insecurity. And it is because of that privilege in a lot of ways that I am able to do the work that I do in a way that feels sustainable. But because I have that privilege, what is really, really crucial to me is using it to make sure that I am supporting disabled people with a multitude of diverse backgrounds to share their story. So, as much as I may be part of the conversation, my goal is not to be the center of any conversation because I only know about my own experience. But I use what I’ve learned from my experience to help other people convey their experiences in a way that feels accessible and approachable and in a way that allows them to take what they live every day and educate people about disability in a way that really welcomes people into the conversation rather than feeling like they are not welcome to be a part of it.
So, for me, all of the work that I do has been shaped by the power of storytelling. And maybe that sounds cliché, but it’s just what drives me. It’s my passion. It’s what I love. And I really love that moment when someone says, “Wow, this has been inside of me for so long. And to be able to communicate with someone the emotion behind what I have been experiencing throughout my life,” I mean, that’s what makes me get up in the morning to do the work that I do.
VALLAS: Oh, I can’t think of a better way to start off this conversation. And in just a few minutes, we’re actually gonna get to speak with one of the contributors to the Voices of Disability Economic Justice Project. And some of that conversation is gonna bring us into kind of how this conversation flows with the rest of this season that we’re doing, focusing on how we show up as advocates and leaders in this work for ourselves so that we can show up for the issues and the causes and the communities that we that we fight for.
But before we get into that next piece of the conversation, I would really love to give you a little bit of space to talk about the Voices of Disability Economic Justice Project. In full disclosure, I have the great pleasure of getting to work with you off the air, as I mentioned. You’re a member of the team, the Disability Economic Justice team at The Century Foundation. You serve as editor of the Voices of Disability Economic Justice Project. And I’ve had the great pleasure and a lot of fun of getting to launch that project with you as something that I’ve been excited to bring in to form for quite some time with, we should shout out, the support of the Ford Foundation. Talk a little bit about the project and why you and I wanted to start it at The Century Foundation as a project of the Disability Economic Justice Collaborative. What are some of the goals of the series? Why is this something we both felt needed to exist?
LADAU: Gosh, I remember when you sent an email, and you said, “Hey, I have something I’d like to collaborate with you on.” And I knew in that moment that whatever you had in mind was going to be exciting. But I want to express my gratitude, first and foremost, for taking this tiny little brainchild and turning it into a full-blown baby that I get to raise from the ground up in a lot of ways, if we can personify our project for a moment. It really feels like we are fostering the growth of something.
And the Voices of Disability Economic Justice Project is really a chance to put a human face to so much of the policy conversation that we’re having around disability economic justice. Because what we know is that the US economy leaves disabled people behind. But what we don’t always have a clear picture of is how that actually impacts people on an individual level, especially people who hold multiple marginalized identities. And so, the Voices project is really an opportunity to bring in first-person perspectives on a variety of economic issues. And we have covered things that I think are fairly central to the disability experience that perhaps people don’t always think about, whether we’re talking about Social Security benefits, whether we’re talking about the overall workers’ rights movement, or even things like how the holidays impact disabled people, or maybe we’re talking about what it’s like to exist as a disabled person in a workplace setting, or we’re talking about what it’s like to require help in order to care for yourself or for your home. And all of these things come up regularly when you are disabled, especially when you are a multiply-marginalized disabled person.
But non-disabled people aren’t always thinking about the ramifications and the economic implications of what it means to be disabled. And so, it’s really exciting to me to get to support people with a range of different identities, to share their direct lived experiences and call attention to the fact that we cannot leave disability out of the conversation when we’re talking about economic justice. Otherwise, it’s not really an economic justice conversation at all.
VALLAS: Yeah, I feel like you’re laying out beautifully some of why this series, it felt to us and to lots of other people, needed to exist. And you’ve highlighted some of the topics that I’ve been really excited that contributors to the series have been able to hit on, even in the series’ short life so far.
One of the questions I wanna kind of bring in next to pull on some of the threads that you just lifted up are what are some of the narratives that persist when we don’t include, let alone center, disabled people’s voices and perspectives in economic conversations? There’s a phrase that gets sort of raised up as a clarion call within the disability rights and justice community, which is “nothing about us without us.” It sometimes gets said in a way that maybe people don’t quite understand what that means, and it’s obviously a lot more than just people being in the room for, say, conversations about policy or advocacy strategy. Because what we’re also talking about here in this conversation is who’s shaping the narratives that end up being the wallpaper in the room that we all live in together, sort of as a society. So, what are some of the narratives that are out there that continue to persist and get perpetuated when we don’t have disabled people actually speaking for themselves?
LADAU: Well, I’ll say that I actually learned from you the phrase “makers, takers, and fakers,” that sort of overarching thread of narratives that tends to follow disabled people around in terms of how we are perceived when it comes to economic contributions or employment or the support that we need financially, things like that. And so, thinking about that phrase, that is constantly the narrative that is driven forward in the media: that disabled people are a financial burden, that disabled people are a drain on the economy, that we are incapable of working, but also that our worth lies in whether or not we can work, rather than in the fact that we are a human being who exists on this planet. And then, of course, there’s the narrative about perhaps we are lying about what we can and cannot do. And there’s the narrative that we are simply being lazy. And all of these are so deep-seated in how people think about disabled people. The best way to push back against that is to have disabled people in charge of sharing their own stories. And you brought up the phrase “nothing about us without us.” And I think that’s such a crucial thing to keep in mind, because I remind people that it’s not just nothing about us without us, but it really should be nothing without us. Because every issue is a disability issue, because every issue impacts disabled people. And so, whatever aspect of the economy, whatever aspect of life you are talking about, it is related to disabled people because we are also existing on this planet and living our lives in this society.
And so, when I think about how disabled people are able to sort of shift the narratives about the disability community, it’s not just on disabled people, it’s also about ensuring that we are making room at the table for disabled people to meaningfully be part of conversations. I use the table metaphor quite often because the question is not just who’s at the table. The question is really is the table accessible? And then once you get to the table, who’s leading the conversation? And then once we’ve left the table, what are we doing about the conversation that we just had? And so, for me, the Voices of Disability Economic Justice Project is one way that we can begin to flip the script because disabled people are not only at the table, they are central to the conversation that is being had there.
VALLAS: Yeah. Yeah, that’s beautifully said. And just to also kind of further underscore one of the points that you made, right, ‘cause it can’t be said often enough, just every issue is a disability issue. And yet, that is something that has only in fairly recent memory started to become something that people outside the disability community are aware of. It started to become a call and a phrase that we heard at national scale in the 2020 presidential election. That was actually an historic presidential cycle for the disability community in that it was the first time that we saw every Democratic candidate for president release a disability plan, something that had never happened before in American political history. Excited for 2024, when, of course, I’m just gonna be the optimist and say we’re gonna see every Republican candidate put out a disability plan, too! But these are shifts that are taking place not just within our lifetimes. And I’d like to say you and I are not that old yet. We’re getting older, but we’re not that old yet.
VALLAS: But these are shifts that are taking place within even just the past several years. And obviously, media and the sort of national debate, which media plays such an outsized role in shaping, has so much to do with what people outside of the disability community understand when it comes to what issues impact who. And so, that notion that every issue is a disability issue, every economic issue is a disability issue, these are things that reporters and folks in the media didn’t understand and many still don’t understand until fairly recently. And so, you would see not just the unfortunate and stigmatizing and ableist narratives that you were outlining—that makers, takers, fakers kind of paradigm—but you would also just see, and you still do, lots of, say, economic media coverage that doesn’t even contemplate people with disabilities at all. So, there’s also just a dimension of people being left out because of a lack of awareness that, yeah, if we’re talking about an economic issue, it impacts people with disabilities in disproportionate ways.
So, we’re gonna get into a conversation in just a minute with Alex Ashley Fox. I’m so excited to bring Alex into this conversation as well. But Emily, I’m gonna throw you one more question before we start to dive into really the meat and potatoes or maybe the tofu and tempeh of this episode, depending on one’s meat or non-meat-eating habits.
VALLAS: I’ll put myself in there as someone who doesn’t eat a lot of meat. But what makes this project, this Voices of Disability Economic Justice Project, different from other ongoing commentary or op ed or first-person perspective series? That’s something I’ve been glad to see a lot more of in recent years, multiple news outlets realizing, and blogs and platforms online, realizing that first-person perspective is really, really important. How does this project differ from those other kinds of series? And talk a little bit about how you write, excuse me, how you work with writers for this series.
LADAU: I feel that what differentiates us from so much of the coverage that I see out there is the fact that all of us who are part of this work identify as disabled, and we are filling the gaps that are so often left in mainstream media. And so, yes, there’s absolutely coverage of disability issues and economic issues, but I think that the nuance tends to get lost in a lot of mainstream outlets. Or disability gets a passing mention or it’s a special feature. You know, it’s not something that is covered with any sort of depth and regularity. And so, the fact that once or twice a month, every month, I get to support a writer to put out a story that is specifically and distinctly related to an aspect of disability economic justice is miles apart, I feel, from the way that disability is covered by so many mainstream outlets. Because for us, it’s not that we are necessarily just looking to cover it here and there. It’s that this is our passion, this is central, this is important, and we recognize there’s a gap in mainstream media. So, we are here to do what we can to help fill that gap and reach more people about these crucial issues.
And in terms of working with writers, one thing that is really important to me is recognizing that mainstream media so often passes the microphone to those who are most privileged, even as they are marginalized. And for me, I am not about looking at a pitch for perfect grammar or looking at what someone submits and saying, “No, I don’t see a story here. You didn’t try hard enough. This doesn’t interest me.” What I’m really looking for is how do we dismantle the ableism that exists in so many spaces that creates stories and look beyond things like grammar, sentence structure, you know, all of those rigid requirements that we have and say, “There is a story here. Above all else, there is a story, and there is a human being who wants to tell this story.” And I wanna support this person to tell their story, and I wanna do it in a way that’s most accessible to that person. So, it’s not about having so much rigidity of structure. It’s about saying, “How can I make this writing process accessible to you?”
And very quickly, I wanna put out there that one thing I really value is acknowledging that the process of writing is not always accessible to people, but that doesn’t mean that they don’t have a story. And so, one option that we do offer for people when they pitch us is supported storytelling, which is a concept that I’ve come up with over the years to allow people who may not find writing accessible to them, to work with someone who can support them to write their story. So, I’m very open and flexible in terms of format, in terms of content, in terms of how we reach a final product. And what excites me is that people respond to this. People are hungry for this. People want that space to share their story. And so, I would honestly love to see people start to copy us in some way, although I’m happy to be the originator of the Voices of Disability Economic Justice Project. But hey, more disabled stories, not less. More.
VALLAS: Yeah, I love that. I love that. And so, Emily, that’s just, it’s such a great place to start for this conversation. And also, just really excited to get to have you on the podcast and to have you on to talk about this amazing series now that it’s been out in the world for, I guess, going on about six, seven months now. And there’s been just so many amazing pieces that have run as part of this series. So, check it out. We’ve got links in show notes, and you can also just Google “Voices of Economic Disability Justice Project,” and you’ll find it. It’ll come up it at The Century Foundation, TCF.org. So, lots and lots and lots of great content that has already run as part of this series. And part of what we are selfishly hoping comes out of this episode is also that folks will pitch you. And so, before we’re done with this conversation, we’ll make sure that we talk a little bit about how folks can pitch you, and we’ll have a link to that in show notes as well.
But Emily, you’re gonna be sticking around. And at this point, we’re gonna have a sort of a part two of this conversation, which I am so excited for. So, Emily, don’t go anywhere. Stick around with us. But Alex, I am so excited to welcome you on to the podcast and to get to be in conversation with you. You are a psychology writer, and you are the author of a piece that ran a couple of weeks ago for the Voices Project called The Economic and Emotional Costs of Masking. Alex Ashley Fox, thank you so much for being here with Off-Kilter.
ALEX ASHLEY FOX: Oh, thank you so much for having me. This is so exciting for me. I love podcasts, and being on them is just a dream come true. So, thank you.
VALLAS: Well, it’s a dream come true for me to get to be in conversation with you because I have to be super, super honest, that piece that you wrote! And I wasn’t familiar with your work. I wasn’t familiar with you until you pitched the series and until we ran the piece. But when you ran that piece, when you wrote that piece, I mean, it was like actually just full body chills for me getting to read it, getting to resonate with it. And I went, “Oh, my God. Emily, we have to do a podcast episode about this.” So, I’ve been excited about this for quite some time. But before we get into the piece, let’s introduce you to Off-Kilter’s listeners. You are a psychology writer. Part of your Twitter bio actually says that you write about “how our brains let us down.” How did you get into writing, and how did you get into writing about psychology and the human brain?
FOX: Yeah. Well, writing has always been, for me, a way to express what was going on inside of me in a world that didn’t have a lot of space for that. You know, writing provides a lot of opportunity to investigate kind of your own mind. And as someone growing up autistic with a complicated brain and very few people to talk to about that, I found it really invigorating to be able to explain to at least like a page what was happening. And like a lot of autistic kids, I developed this big fascination with psychology and the human brain, ‘cause when you’re on the outside looking in like that and you just have this knowledge that I am not part of whatever this team is that I can see most people are part of, you get fascinated with how does the brain work exactly? Why are we like this? And for me, I got really fascinated with why do we mess up the way we mess up? Why do we make the same kind of mistakes over and over again? What about the brain keeps us in that position time after time? So, that’s kind of what I think about as how to our brains let us down, right? Like, what kind of errors do we make over and over again that we can learn to stop making if we’re clever?
VALLAS: Ah, that’s so interesting. And before we get further into this and into the piece, maybe give an example. What do you mean when you say, “the mistakes that our brain makes”? A lot of folks could be maybe filling in the gaps and guessing, but I’m curious how you would define that.
FOX: Well, one of the things I love to talk about is airplanes, and I think that airplanes can be a metaphor for a lot of things. But if we think about airplane crashes in particular, they are very much like a story of the kinds of errors we encounter in very high stress, high control situations, you know? When you’re thinking about pilots in these airplanes, right, and they are super well-trained people. They know exactly what to do in every situation. And yet somehow, the airplane can still crash, right? And a lot of times when that happens, pretty much all the time, it’s because something about the pilots’ brains prevented them from flying the plane in a way that was safe or correct.
The example I think of a lot is this one plane crash that occurred because the crew got obsessed with a light bulb being out on their landing panel. Plane was totally fine. There was nothing wrong with the plane. But as they were trying to fix the bulb, they accidentally turned off the autopilot, and the plane just slowly descended into the ground. They had no idea, no awareness of what was happening ‘cause their brains were so laser focused on one thing. And that’s how our brains work, you know? They get focused on things. Our attentional resources are finite. And it’s writing about stuff like that, trying to bring awareness to here’s what can happen. Even when we think we’re doing a really good job, our plane can be slowly descending into the ground, and that’s something to be aware of.
VALLAS: And oh my God. I can’t think of a better segue into talking about your piece because, I mean, it just it’s like that’s a beautiful way of, I think, laying a little bit of the foundation for some of what you describe so beautifully and so eloquently in this piece. The piece that you wrote I mentioned for the Voices series is, it’s titled The Economic and Emotional Costs of Masking. And I wanna give folks a flavor of the piece and also just lay a little bit of foundation for this conversation, including for folks who might not be familiar with masking, a word that is generally used in the context of neurodivergence and autism. So, I’m gonna ask if you wouldn’t mind reading the opening two paragraphs of that piece. And then that’ll get us into a little bit about what you were just saying about what happens when the brain gets laser focused on one thing.
FOX: Yeah, that would be great. “My boss is talking to me, and I swear I’m trying to listen. That’s what I’ll tell myself later, when I realize he was talking to me for nearly fifteen minutes and I hadn’t heard a word he’s said. Ever since he criticized me for failing to make eye contact I’d been on high alert, carefully laboring to administer what I imagine is the “just right” amount of eye time. I’m autistic, so it’s not easy. In a precisely segmented dance, my eyes darted from the center of his forehead to his earlobe, from his mouth to the tip of his nose. I hoped I was doing a good job. I really had no way to tell.
I was doing what’s called ‘masking’: compensating for and concealing my autistic traits so I can meet the expectations of a neurotypical environment. In addition to managing eye contact, masking can also include mimicking gestures and facial expressions, self-policing posture and speech, suppressing sensory discomfort, and “scripting” social encounters. For myself and many other autistic people, masking allows us to carve out a way to exist in a world that was not designed for us. It’s often the only way we can succeed in typical work environments. While a number of us successfully ‘pass’ as neurotypical, none of us do so without cost.”
VALLAS: So, those are just the first couple of paragraphs of your piece. Folks can find a link to the entire piece in show notes, and I would encourage people to go and read it. It’s not a long read, but it is a deeply powerful read whether or not someone is familiar already with autism, with neurodivergence, with masking. But Alex, “masking” is a term that has particular resonance for the neurodivergent community, and I feel like that read aloud that you just did included a really helpful definition for folks who might be hearing about masking for the first time or might’ve heard it, but they weren’t super familiar with what it meant. So, with some of the definitional work out of the way, I would love to get into some of the aforementioned economic and emotional costs of masking that you write about so beautifully in the piece. How is masking harmful to neurodivergent folks? You write in the piece about your own experience with masking to pass, as you were just saying, as neurotypical at a previous job. Talk a little bit about those costs, both emotional and economic. Help make that real for folks.
FOX: Yeah, and that’s a great question because I think the emotional costs are interrelated to the economic costs in a really deep way, and it doesn’t really get talked about enough. But the emotional cost is very much a psychological burden that you are bearing when you are forced to present as something that you truly are not. You’re essentially playing a role. It’s like being an actor the entire time you’re at work or wherever you have to be to perform the role you need to perform. And if you can think about it as perpetually devoting like 50 percent of your brain to something else, [chuckles] you can see how that would really burn up resources you might have to do things like be a creative problem solver at work, give your full effort on a complicated task, you know, really dig into material you need to dig into if you’re always thinking about like, “Oh, wait. Am I looking like the person I need to look like? Am I performing the way I need to?” So, not only do you have to bear that burden, but companies don’t get the full benefit of your ability because you’re kind of constrained by this additional requirement that you’re carrying as somebody who doesn’t really fit in to the place they have to be.
VALLAS: So, I wanna ask a question now to you, but I’m also gonna bring Emily back in on this question as well. And, Emily, I’m really excited that you’ve stuck around for this second part ‘cause I suspect you’re gonna have some thoughts about some of these pieces as well. So, Alex, first to you, is masking a phenomenon that’s specific to autistic people, or is there broader applicability here? And part of my reason for asking that question is when I read your piece for the first time and I had the great privilege of getting to read it before it was published—I mentioned this before, but I’ll say it again—it had real resonance for me as someone, not just as someone who identifies as a member of the disability community, but as someone who, even though I don’t identify as being on the spectrum, I do—and I’ve been more public about this on the podcast in this season—I spent a long stretch of my own life feeling really immense pressure to hide really significant parts of myself—and I know I’m not alone in this, but we don’t talk about this a lot—to fit in, to be like everyone else, and particularly in workspaces. And as someone who has spent most of my life living with multiple chronic illnesses and disabilities that are invisible and that I spent a very long time hiding from the world before I started to identify as a member of the disability community, just the concept of masking is something that I’ve always wondered, and I especially wondered reading your piece, is this something with broader applicability? I’m curious how that lands with you. And then, Emily, I’m gonna be interested to get your thoughts on this as well.
FOX: Yeah. Well, I mean, yes. Oh my God, yes! I think that masking is something we all end up doing in one way or another, I mean, if you think of masking as more of a tool we use to present as something we are not, maybe momentarily or maybe for a longer period. You know, autism is just one of the things you can mask. You can mask pain, you can mask resentment, you can mask frustration. If you think about all those times someone’s talking to you and you’re making a face that does not represent your feelings, that’s a type of masking. And for autistic people, because we have so many things in us that we have been told by society aren’t good or don’t fit, we do it a lot. It becomes more of a full-time obligation. But I think everybody engages in this to a certain degree. And whenever it’s done too much, it’s corrosive no matter what you’re doing it for.
VALLAS: Emily, what thoughts do you have on that point? A notion that I’ve heard a lot of folks in the disco, as we lovingly call it—the disability community— describe is pretzeling, right? Some folks describe pretzeling to fit in to certain spaces. Or sometimes the word that gets used is “passing.” How does this question land with you when we start to talk about masking as having broader applicability, including for the disability community, but possibly beyond it?
LADAU: For me, as someone who is physically disabled, I would say that masking is something I do more in a metaphorical sense, perhaps, and definitely not so much anymore. But when I was younger, the biggest compliment that you could pay me was that you forgot that I was a wheelchair user or that you didn’t think of me as disabled. And so, even though there was no way to mask my disability in the sense that my wheelchair enters a room when I enter a room, it is part of me, and you will notice it, I wanted to completely disassociate myself from being identified as disabled. I wanted to create an illusion for people that I was quote-unquote “just like them.”
And so, I think for me, it was sort of emotionally masking a part of my identity. And it wasn’t till later in life that I began to realize that I was doing all of this labor to fit in with other people, and yet there was no eliminating my disability from me, and nor should there be, because it makes me who I am, and I want to embrace that. But for years—years!—all I wanted was for people to ignore this visible and inherent facet of who I was. So, masking resonates with me, even if not in the literal sense, in the sense that I very much tried to hide aspects of who I was.
VALLAS: Yeah, I love that answer. And Alex, I’m gonna turn back to you also just to make sure that we really do a full treatment here—and obviously, folks can read your piece and you should—of really bringing out the emotional but the economic costs, which you also write about, and which is in the title of the piece of this kind of masking. Is there any more that you wanna say about how this ends up showing up as economic costs, not just to workers but also to their employers?
FOX: Yeah. Well, that’s a good question. The cost to organizations, I think, is difficult to quantify because data on this is challenging to come by. Unfortunately, it’s one of those effects of disability community being marginalized, is we don’t have all the data we might like about ourselves. But for companies, you’re dealing with, it’s like you’re spending money on a 100-watt light bulb and only getting 50 watts out of it is one way to think about it. Like, you’re paying employees to do work and only getting part of their capacity. And the great thing, the amazing thing about autistic people is that we have such incredible capacities, but we need to be in environments that allow us to express those capacities, allow us to reach for those capacities. And when we do, we can be 100-watt light bulbs that shine at 150 watts, you know?! So, we’re losing out on a lot of just dollars and cents of productivity in employees, people being able to do the work they need to do effectively and successfully and have the kind of insights that drive organizations forward and produce competitive advantage. A lot of that stuff is creative work, and it requires emotionally successful places in order to produce that kind of insight.
VALLAS: Again, you spoke before, and you write about this in the piece, about that eye contact example, right? Getting told, “Oh, you should be making eye contact more.” And then it’s like, boom, that’s where your brain goes. And it’s like, “Am I making eye contact? Am I making eye contact?” And then everything else not being able to be part of the picture. Obviously, that’s just one example, but it ties in so beautifully with that opening analogy you made with the plane crash, right? Of like, being focused on the thing that, relatively speaking, is not actually that important, whether a light is on, on the dash when the plane is starting to crash, right? So, I think it is just such a useful example for folks who might be new to this concept.
Alex, staying with you for a moment, this has been a series of conversations we’ve been having on the Off-Kilter podcast about radical self-care. And part of what I, in thinking with Emily about why this conversation with you would be just such a good fit for that series, both of us were like, “Oh my God, this totally fits.” But I really wanna give you a chance to talk a little bit about how masking fits into a series of conversations about radical self-care for anyone who might not be seeing that connection in an obvious and straightforward way. And so, I’ll add that the notion of being your whole authentic self at work or elsewhere is something that comes up often enough these days to be something of a cliché, but I can’t say I’ve ever heard masking come up, and certainly not masking for neurodivergent folks, I haven’t heard it come up in what can often be really one-dimensional or superficial or worse conversations about what it means to be your whole self or your authentic self, whether in the workplace or elsewhere. So, what are your thoughts about how this conversation fits into a series of conversations about radical self-care?
FOX: Well, I think you’re right about the level we often have these conversations at, that they often occur at this kind of Instagram ad level of complexity where it’s sort of like this stamp that says, “Be yourself!” that we just stick on things, that it doesn’t mean a lot to people ‘cause like, that comes with no instruction. What if it’s hard to be yourself? What if yourself doesn’t seem to be a thing people want around for some reason? That’s a lot more challenging. And I think because of that and how personal this can be, the word “radical” is really the right word here. I know Audre Lorde, who’s one of my favorite authors, talks about this a lot. But she talks about this quote I think about a lot, which is that self-care is an act of political warfare, you know. To really care for yourself, to really prevent overextension of yourself, to really value you and what matters to you is saying like, “I am a being that matters and has value in the space that I exist in,” whether that’s political or economic or emotional. And you’re really staking out your own position in the world. And not masking is about accepting what that is for you and doing your best to find a way to live it that’s satisfying and productive and meaningful to you individually. It’s about really tuning in to what’s inside of you. And in a world where conformity is so valuable and so easy to fall into and so necessary in so many situations, to really focus on the self in that way, on like, “what do I need?” is a very radical act.
VALLAS: And for anyone who has not listened to the first episode of this series of conversations, I’ll give a little plug to go back and listen to the episode titled Self-care is Political Warfare, with the brilliant, amazing Aisha Nyandoro. We get into what are the origins of that famous quote that so many people know but so few people know the real story behind and the fuller context of, and what are the origins of radical self-care, and how has it become watered down and commercialized over recent years. So, go listen to that first episode if folks are looking for a little bit more of that context.
But Emily, I wanna take the same question to you. And you and I both immediately went, “Oh my God, Alex would be so great to have on,” talking about this piece as part of this series. How, in your opinion, does masking fit into a broader conversation about radical self-care?
LADAU: I think what resonates so deeply with me is the fact that we put the burden on ourselves to twist to fit some kind of arbitrary mold, when in fact, if we were really taking care of ourselves, we would allow ourselves the space to just be. But the problem is that even if we allow ourselves that space, not everybody around us allows ourselves that space. And so, I think the challenge with radical self-care is that we need to get comfortable with existing as we are, and we need to get comfortable with taking that mask off and just being in the moment. And that’s a hard thing, and it’s something that I feel like I have had to not just learn once, but actively practice every single day in a world that says, “It’s not okay for you to fully be yourself. It’s not okay for you to show up exactly as you are.” And in order to truly embrace radical self-care, I’ve had to learn to flip that script for myself and say, “No, you don’t need to resist your identity. You don’t need to resist showing up exactly as you are.” And that is something I probably will be working on for the rest of my life, but it’s something that I believe is so incredibly important because we are all worthy of taking care of ourselves.
VALLAS: I love that. And I’ll put in another plug for the episode that ran in this series just before this one with Alex Lawson, who is not just the co-founder and co-owner of We Act Radio, one of the stations that Off-Kilter is really proud to be one of the anchor shows on, but also the executive director of Social Security Works. We have a whole conversation about what it means to really be yourself and to strip away the metaphorical conventional black suit that so many of us feel like we need to embody to fit into our workspaces, particularly when it comes to DC-based or DC-relevant policy work.
I’m gonna stay with you for a moment, Emily, and I’m gonna ask if you would mind talking a little bit about what made you want to run Alex’s piece when you got this pitch. You get a lot of pitches for this series, and that’s something we want. We want people to pitch us. We want people to send their ideas. But what made you wanna run this piece about masking when Alex sent over the pitch?
LADAU: Something stuck out to me immediately about the fact that Alex was not being apologetic. And that is an incredibly powerful thing for me, because in a world where we’re always expected to apologize for the fact that maybe we are struggling in a work environment or we are finding something particularly challenging, I felt like this speaks to my understanding of disability economic justice. Because if we are to create a working environment that is truly just and equitable, then we would not expect people to put on a performance. We would not expect people to hide parts of themselves. And so, I think it just resonated so deeply on a personal level that that was what had initially made me interested. But also going back to what you said earlier, this is not a conversation that we have very often. I mean, yes, we talk about the ways in which disabled people are judged because of requesting accommodations at work, and we talk about all of the ways that disabled people are left out of recruitment and hiring processes, and we talk about navigating accommodations. I mean, we have so many of these conversations over and over and over again, but we’re often doing it from that economic standpoint, and we’re not doing it from that very deeply human standpoint of talking about the emotional toll that all of this takes on us as we’re trying to navigate the workplace. And so, to me, it felt like it was digging deeper into another layer of a story that we’ve already been told.
VALLAS: Yeah, I love that. And that was certainly my intention in wanting to have this be one of the conversations as part of a series, ‘cause it is that sort of deeper layer that we’re looking to kind of get down to the bottom of as we have these conversations that are around topics that are usually at that superficial and often sort of, you know, they’re-trying-to-sell-you-something kind of level, as Alex was referencing, right? That Instagram image level.
So, Alex, I’m gonna bring it back to you and get us into a place as we start to close out this conversation about what the solutions are. And that’s something we always like to lift up on this show, not just lifting up the problems, but also talking about the solutions. For you, and you write about this in the piece, self-employment as opposed to being in a working for an employer in the traditional context structure has been at least part of the answer. And you report in the piece that self-employment for you has, “unleashed enormous productivity.” So, the light bulb metaphor is kind of very much in my mind thinking about your wattage that you’re metaphorically able to radiate in your current situation, being self-employed now. But obviously, just to acknowledge, self-employment isn’t an option for everyone. And so, you write, “Until we give autistic employees the self-determination to create working environments that work for us and reduce the pressure to mask, society will continue to lose out on the full contributions of autistic people, contributions that could change the world.” What does this look like in practice? And I ask that question recognizing that our audience is kind of a diverse audience. There might be folks who are listening who are people who are working in these spaces. There might be people listening who are employers of people in these spaces. What is your message to employers? What is your message to neurodivergent workers? What are the solutions here?
FOX: Yeah, and I think there’s a lot of potential solutions here because I think everybody kind of comes to environments that work for them in their own way and kind of in a very literal sense. But from a very broad sense, what I wanna see from employers is a greater sense of trust in your employees to know how they can get their work done best. I’ve worked in a lot of places where the biggest concern of management has been control over their employees and monitoring their productivity, and I have found this really corrosive to a lot of people, but especially to me. Whereas an attitude of trust can cause people to not only be loyal, but to work harder for you. And that can be difficult in an organization where you have a lot of people, and maybe not everyone is worthy of that trust. But I think you can be astonished what will happen when you give people the tools they need to create places that can function for them and not just for your autistic employees, for all of your employees, you know? It’s very easy to dictate top down kind of what we feel is comfortable as a working environment. But a bottom-up approach can be much more successful.
And for neurodivergent workers, I guess my call is unite and take over. [laughs] You know! I think having us get together and discuss what makes working hard for us, what could change, it can help us create ideas that can be implemented successfully. Instead of just having individuals trying to seek accommodations, like, actually having a discourse about what is this like for us, what do we like, what do we dislike, what could be better, I think all of that can move us forward.
VALLAS: Yeah. And I wanna stick with you for another moment, Alex, before bringing Emily in on this question, because obviously, accommodations aren’t the entire picture, but they are part of it, right? And that is something that folks who may not know a ton about disability law and disability policy, most people are familiar with the Americans with Disabilities Act at a minimum, right? Something that we at least as a society talk about every July, even though we should be talking about disability policy every month, because as Emily was saying before, every issue is a disability issue. But clearly, accommodations are part of this, too. And you write about that a little bit in the piece, what does it mean for autistic people to have the right accommodations for their specific needs? For folks who might not be familiar with what those accommodations might look like, maybe talk a little bit about that in a little bit more detail to make this a little more concrete for folks.
FOX: Yeah. And I wanna give a shoutout to the ADA as being just a really valuable law that exists. It protects a lot of disabled people and gives us opportunities to work in places where we might not be able to otherwise be because of these accommodations. Having the right to seek a working environment that’s functional for you based on your disability is really invaluable. And for autistic people, every autistic person has their own kind of experience of autism. But in general, things I’ve seen from a lot of autistic people is like being able to control the sound or being able to control the kind of visual environment or how many people are around me. Having that ability to be in a space that feels comfortable to me when I’m doing my work and allows me to focus the way I need to focus. You know, limiting my interruptions, not having to go to meetings four hours out of the day, things like that that can really help us just navigate the world a little more comfortably. Some of those are accommodations, some of those are employers being decent. It varies, I think, kind of on a legal basis. But I think it’s about seeking environments that can be functional for us with whatever tools we have available to us.
VALLAS: And just to be super brass tacks, a lot of what you just described is also just like a healthy work environment for people who may or may not be neurodivergent, right?
FOX: Yes. Yes!
VALLAS: I don’t identify as neurodivergent. Maybe I should. Maybe that’s a conversation I should have at some point with folks because it’s new. My own journey has been, as is pretty customary for folks, one that has had many chapters in it in terms of identifying as part of the community and in a number of different ways. But setting that aside for now and saying I don’t identify today as neurodivergent, I will say a lot of what you just described are really important working conditions for me and probably for a lot of other folks who are listening for us to be healthy and sustainable in our relationship to our work and to our work environment, even though they might be accommodations that are very specifically and urgently needed for folks who are autistic. So, just to say that as well.
Emily, I wanna give you a chance to talk about how folks can pitch the Voices of Disability Economic Justice Project before we run out of time. Where can folks learn more about how to pitch, and are there any topics that you’re especially looking for pitches on right now?
LADAU: So, I imagine that the link to submission guidelines will be in the show notes. But we indeed do have submission guidelines, and they talk a little bit about the type of pieces that we’re looking for, the length, and it also talks a little bit about what we’re not looking for. I hope that people will consider pitching if you feel like you have a story. I have heard some of the best advice from other writers on Twitter who say, “Do not self-reject. Do not decide that your story is not worth telling before you’ve even pitched it to be told.” And so, I really welcome anyone who feels like they have a story to share with a disability economic justice angle to send a pitch along for review. And if you are curious about some of the types of pieces that we published, take a look at what we’ve already got in our archives, and you’ll see and get a feel a little bit for the type of writing that we’re looking for. In terms of specifics, we are, of course, hoping to amplify writers with multiple marginalized identities, and so that’s a top priority for us. But that being said, the goal is not to tokenize. The goal is to open up and hold space for whoever has a story to share. And so, there’s no specific urgent topics that I am calling for right now. Rather, I am calling on people to look within themselves and see if they have something that they feel called to pitch, and to reach out. And I really, really look forward to reading them.
VALLAS: And really important to say, we pay for these pieces. This is not just asking—
LADAU: Oh, my goodness!
LADAU: How could I leave out this crucial detail?!
VALLAS: So, we pay $500 a piece, and that’s something we’re really proud to do and we think is really important. Obviously, no one should be asked to work for free, even when these are important stories that need to be told. So, just needed to throw that in there as well, we pay for these pieces. And if you’re someone who, say, receives public benefits or SSI or whatever it is, we work with you to figure out how to make that work. And we have already done that with multiple contributors to the series because it’s important that we not let our broken disability policies stand in the way of people being able to participate in this project. So, I’ll just underscore Emily’s pitch there, her call for pitches. So, really excited to hear hopefully a bunch of pitches come out of this episode.
And Alex, you’re gonna get the last word. Where can folks find more of your work? And do you have anything coming out or on deck or out in the world that you want to plug before we wrap?
FOX: Yeah! Well, you can find me on Twitter @FollowAAFox. That’s probably the best place to find what I have coming out right now, which is a series I’m working on about kind of the most common errors in major disasters, sort of what goes wrong when things really go wrong.
VALLAS: Oh, I’m super excited for that.
FOX: Yeah, I think it’s gonna be a lot of fun. And I wanna give a huge shoutout to Emily, by the way, as being an awesome editor to work with. Definitely pitch her. She’s great.
VALLAS: I could not agree more, and I can’t think of a better place to end this conversation. So, I’m really, just I had a lot of fun talking with both of you. I’m really grateful to both of you for taking the time. And Alex, I’m really excited and grateful for the piece, which I hope folks will go over and read in follow-up to listening to this conversation.
Alex Ashley Fox is a psychology writer and a contributor to the Voices of Disability Economic Justice Project. His piece is called The Economic and Emotional Costs of Masking. You can find a link in show notes. And Emily Ladau is the editor of the Voices of Disability Economic Justice Project. [theme music returns] And it was just so much fun to get to be in conversation with you both for the show.
And that does it for this week’s show. Off-Kilter is powered by The Century Foundation and produced by We Act Radio, with a special shoutout to executive producer Troy Miller and his merry band of farm animals, and the indefatigable Abby Grimshaw. Transcripts, which help us make the show accessible, are courtesy of Cheryl Green and her fabulous feline coworker. Find us every week on Apple Podcasts, Spotify, or wherever you get your podcast. And if you like what we do here at Off-Kilter Enterprises, send us some love by hitting that subscribe button and rating and reviewing the show on Apple Podcasts to help other folks find the pod. Thanks again for listening and see you next week.