For this week’s episode of Off-Kilter, Rebecca sat back down with Emily Ladau. She’s the editor of the Voices of Disability Economic Justice Project and the author of Demystifying Disability: What to Know, What to Say, and How to Be an Ally: She’s someone who’s done an immense amount throughout her career to shift narratives on disability in the United States and is a master storyteller whose many superpowers also include supporting other people in telling their stories. They had a far-ranging conversation about the Voices of Disability Economic Justice Project as it comes up on its one-year anniversary; why it’s so important for people with disabilities to get to tell their own stories; why storytelling is critical to policy and culture change; how she ended up on Sesame Street; why she wrote her book Demystifying Disability; and lots more.

Links from this episode:

[bright theme music]

REBECCA VALLAS (HOST): Welcome back 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, as you know, I go behind the music with visionary leaders and lightworkers working to reshape America’s off-kilter economy into one where everyone can thrive and access the shared abundance we all deserve. I think of it kind of like a weekly trip to the Marvel Universe, but the superheroes I get to talk with every week work with law and policy.

And for this week’s episode, I am really, really, really excited to sit back down with someone who I feel really lucky to get to work with at The Century Foundation. That’s Emily Ladau. She’s the editor of the Voices of Disability Economic Justice Project. She’s also the author of a book called Demystifying Disability. And just generally, she’s someone who has done more than most humans, in my experience, to shift narratives on disability in the United States. And she’s a master storyteller whose superpowers include supporting other people in telling their stories. You can find lots more about her work, her book, and the Voices Project in show notes. But Emily, welcome back to Off-Kilter, and it’s lovely to see your face.

EMILY LADAU: Hi! I’m so happy to be back. I feel like I might’ve said this last time, but I used to listen to this podcast before we even really knew each other. And now this is my second time on this podcast, so I just, I feel like I have moved up in the world a little bit.

VALLAS: Well, the mutual admiration society is real because I think I knew who you were before I got to know you, too.

LADAU: [laughs]

VALLAS: And so, it goes both ways. We are gonna cover so much terrain. I’m so excited for this conversation on a whole bunch of different levels. But before we get into it, for folks who are not familiar with you or maybe for newer listeners of Off-Kilter, I wanna give you the chance, as I always do with guests, to reintroduce yourself to Off-Kilter’s listeners and to talk a little bit about how you come to disability rights and justice work. I think the last time you were on the show—And Kings is telling us, one of our fabulous producers, Kings, is saying maybe you’ve been on the show three times? So, maybe we’re miscounting. I’m not sure.

LADAU: Yeah. We talked about Judy. We had a lovely tribute episode for Judy, Judy Heumann. And then we also had an episode where we were joined by one of our writers for the Voices of Disability Economic Justice Project. So, I guess just to back up and tell everyone a little bit about me, I am a very passionate disability rights activist, storyteller, communicator. Everything that I do, I do through the lens of my lived experience with disability. I am a wheelchair user, and I am someone who is just incredibly invested in finding ways to bring people into the conversation about disability. I know that it’s a conversation that can so often feel alienating, and I want it to feel approachable and accessible. So, that is really why I get up in the morning, cheesy as that is. It’s what I love to do, it’s what drives me, and I’m just pumped to be able to say that somehow this is my career. That’s pretty amazing. So, yeah, I’m stoked to be talking with you today.

VALLAS: I am always stoked any day that you are on my calendar and someone that I get to be in space with. I wish we were in person, but Zoom, as I often say, will have to do. And I’m really excited for a lot of the pieces of the conversation that I know we’re gonna have, some of which you and I have talked about off the air, some of which are questions I actually have never had the chance to ask you. So, I’m really excited to see where some of this goes.

So, I feel like the right place to start is to say you wear a lot of hats. And one of them, as I mentioned, is with The Century Foundation, who powers this podcast. And you are one of the members of the Disability Economic Justice Team that I am very proud to be part of. One of our core flagship projects [laughs] is the Voices of Disability Economic Justice Project. I’m laughing because Kings is telling us you look really great in hats too! This is why it’s super unfair that people don’t get to see the chat and the conversation that we’re having because—

LADAU: It’s really adding so much life to this conversation.

VALLAS: It really does. So, Kings, thank you, as always, for making me laugh on air. So, one of the hats that you wear, as I mentioned, is editing the Voices of Disability Economic Justice Project. And really, you and I, we talked a little bit at the beginning about it being something of mutual interest. But this has been your baby since it started nearly a year ago. It’s amazing to me that a year has already flown by. It has grown so much and really kind of blossomed into this incredible platform for storytelling. What is the Voices of Disability Economic Justice Project? How does it work? Why did you wanna get involved with this when I called you up and said, “I think there’s a thing that you should do?”

LADAU: Well, first of all, you are very convincing. So, don’t underestimate the power of you when it comes to bringing me into projects. But more than that, I really, really love being able to support people in sharing their story. More than talking about my own story, I really like to see other people shine. And getting to edit and bring stories to life is what I thrive on. And so, this felt like my perfect sweet spot. And people need to be having conversations about disability economic justice, and those conversations were not being given the mainstream platform that they deserve. And so, the fact that The Century Foundation was willing to be the host for these conversations, for these dialogues, for these narratives is really essential.

So, what we’re doing is we are working with people from all different parts of the disability community who want to share their story about a particular disability economic justice issue. And the Voices of Disability Economic Justice Project is a commentary series, and it shines a spotlight on all of the economic disparities that disabled people are experiencing. And then we use those narratives as a way to support the overarching mission that we have around shifting policy and shifting practices so that we can actually achieve economic justice and economic security for disabled people across the United States. So, the goal with the Voices Project is really to feature voices of disabled people, especially multi-marginalized disabled people who exist at multiple overlapping points of oppression, and to talk about the realities of being a disabled person in America and what that’s like day to day and the impact that the flawed systems that we’re operating in have on people’s actual lives. And so, the fact that I get to help bring these stories to light and to fruition is something that I don’t take for granted, because I know that people are trusting me with that.

And then I think the other component that I just wanna make really clear is the fact that this is not unpaid work. We’re not looking for people to give away their narrative because your story is something that you have lived, that you have earned, that you have worked for, and that you have the right to decide how you share. And so, we pay our writers $500 a piece for what they write for us. And I think that’s essential because you have to live your values, and that, in my mind, is living our values of economic justice for disabled people.

VALLAS: So, I wanna just note, if folks are listening—and we’re gonna plug this again at the end of the conversation—but just to say right now, if folks are listening, and you are interested in writing for this series, if you’re a person who is disabled, if you are a person who has a story to tell about economic injustice, about any level of intersection between disability and economic policy, the economic realities of your life, if this is speaking to you, we have information in show notes about how you can pitch Emily to write for the series. As she mentioned, it pays $500 a piece. That’s something we actually would love to have increase over time. But I just wanna say upfront, this is not an invite-only series. This is not like, oh, you have to know us. This is an open-pitch series. We’ll plug that again at the end, but just wanted to say that upfront.

Emily, it feels like one of the right places to sort of lay the foundation for this conversation is to bring in one of the most common and most important values-based refrains that really exists in the disability community. And that is something that maybe folks have heard before, it’s “nothing about us without us.” What happens when writers or reporters or folks in the media or really anyone with a public platform talks about people with disabilities versus people getting to tell their own stories? I’m curious if you wanna reflect a little bit on that “nothing about us without us” phrase, which sometimes kind of is out there only at a surface level, and maybe people who aren’t part of the disability community might wonder, well, why do people say that?

LADAU: I think that we lose so much nuance when disabled people are not at the helms of telling our own story. And there are a few plays on “nothing about us without us” that I’ve heard. I’ve heard “nothing about us without us for us.” And then I’ve simply heard “nothing without us.” And I think that those are just as powerful as “nothing about us without us” because if you are not including us, then you cannot say that it is for us. And if you are not including us, that’s a problem, period. Because every issue is a disability issue, because every issue impacts disabled people. And so, when we’re talking about economic justice, it cannot be siloed from the disability conversation; it is very much overlapping, interconnected, interrelated.

And I think that when non-disabled people take charge of conveying the stories of disabled people, we too often lose what happens in those little in-between moments of lived experience, that emotional nuance, that sense of frustration, that feeling of triumph. Whatever the case may be, it’s so often painted by non-disabled people in the media in a way that can feel objectifying or exploitative, right? It doesn’t feel authentic. It feels more like we are using these emotions to try to appeal to a human-interest story rather than saying, “This is my very real experience. I am not here because I am putting on a show for you. I am not here because I am trying to make you feel a certain way. I am telling you that this is my lived reality day to day. And what you are reading is a snippet in a piece of reporting is what I experience every morning when I wake up.” And so, that’s why I think it is so essential for disabled people to tell our own stories.

But that also means making it accessible to tell our stories. And right now the mainstream media has such a high barrier to entry in so many cases, they don’t welcome disabled people who are saying, “I have a story to tell.” Or they’ll take that story, but it will be in such a way that the disabled person is giving, giving, giving and not receiving anything in return, not receiving the support in telling their story, not receiving guidance in how to use that story as a jumping off point to really create change. And so, when we are telling our stories and when disabled people are supporting other disabled people to tell our stories, I think it removes that layer of objectification and exploitation, and it really digs down into the heart of things, into the authenticity. And it says your story has value, and we want you to share it, and we want you to show up as you are.

VALLAS: Yeah, I love that. And as you were speaking to that, part of what was coming through was I was thinking back to some of the episodes that we’ve done of this podcast over the years about narrative and why narrative is a form of power and why stories are actually a tool for change. And so, I think we’re probably gonna put in the show notes ‘cause I wanna be able to point to a two-part series we did a couple years ago about narrative shift and why it matters, why it’s connected to policy and culture change, and why narrative is actually a form of power. That’s part of what I was thinking about as you were describing that. There is power and a reclamation of power, right, in taking the mic and in telling one’s own story.

So, we’re coming up on the one-year anniversary, as I mentioned, of this amazing project that you have just done such a beautiful job with building out and with recruiting writers for. I know we’re gonna be doing a lot to mark that anniversary and to celebrate that anniversary. This episode’s probably gonna be going to air a little bit before we hit that one-year anniversary at the end of October, early November. But what are some of your favorite pieces that have come through the Voices Project so far, and do you see trends in terms of the pitches that you get when it comes to like, what are the economic themes that writers are most interested in uplifting through this series?

LADAU: I think it’s really important to debunk something, which is that when we talk about economic justice, we’re not just talking about employment. I think that is probably the greatest misunderstanding that people have when they’re first considering what it means when we’re talking about the economy. They’re thinking, oh, well, getting jobs, right, making money. Yes, that is an essential part of what we cover. But pretty much every issue, just as it’s a disability issue, is also an economic justice issue. And so, some of the most powerful pieces that we’ve had have really talked about things that we don’t think about as being both a disability and economic justice issue but absolutely are. Reproductive health, for example, is a big one. The time cost of requesting accommodations, navigating the experiences of homelessness, what it’s like to encounter both misogynoir and ableism while trying to survive.

I mean, we have published really a broad range of pieces on different topics, and I’m very excited that it’s not just employment focused because having a job, yes, we live in a capitalist society. Absolutely. And we unfortunately need to find a way to sustain ourselves financially. But so much of what our writers talk about is not just that, but it’s the barriers to entry that are created because of the asset caps if you receive benefits. It’s the barriers to entry that are created because you are looked down upon as someone with a disability; you are seen as somehow a burden or a drain on society. We’ve had people who have talked about feelings of shame because they receive support from their family. We have people who have talked about feelings of shame because they receive housekeeping services, right? So, this is rooted really deep in lived experiences and emotions that people have that come with living in a capitalist society.

And I don’t know that I can pick a favorite piece because I think that everybody has shared something really valuable and made me think about something in a new way, and that cannot be understated. So, honestly, if I could recommend that you read anything, I would just say go back and read the entire archive of pieces from this past year because you will gain perspectives on things that you hadn’t previously taken the time to consider. And it’s a reminder that there is work to be done.

VALLAS: And we make it pretty easy to find all the pieces. Or I should say you’ve made it pretty easy to find all the pieces on the site. So, we’ve got a link in show notes to the main page where you can pitch, as I mentioned, but that’s also where all the pieces live. So, you can literally scroll through, and I don’t know if folks have a weekend to burn, right? You can literally go through and just read one piece after another. I mean, to me, that’s some of my, one of my favorite things to do is just when I’ve got downtime, to just go through and actually explore some of the pieces because everyone is really incredible. I mentioned that the last time that you were on this podcast, you were part of a panel with one of the contributors to the series, a writer named Alex Ashley Fox. That was one of my favorite pieces that has run. I’m not gonna pick one favorite, but that was one of my hands down favorite pieces that this, has been run through this entire series. It was about the costs, the economic as well as emotional costs, of autistic masking, right? People trying to hide that they are neurodivergent in the workplace to try to pass, right, as neurotypical. That’s just one example of something that might surprise people as an issue, might surprise people as a piece. But all of it comes back and has those economic connections.

Emily, I wanna zoom out just a little bit. And you referenced some of this before in describing some of how you come to this work, but I really wanna give you a chance to talk a little bit more about this, because I really love having this conversation with you off the air. And you often like to say that your favorite thing isn’t to tell your own story but is actually to help other people and to create the conditions and the platforms and the supports for other people to tell their stories. How did you come to find that that was one of your particular superpowers? And how do you do that? You make it look so easy. I mean, people might not be thinking about what it actually takes to make these pieces. Just the voice of each writer just shines through, right? It’s not like there’s one consistent voice that you’ve edited it all down into. In fact, quite the opposite. I’d love to give you the chance to talk a little bit about how you came to find that that was something that you love doing and how you’ve learned to do that so beautifully.

LADAU: Gosh, I appreciate that. First of all, that’s a really big compliment. And I don’t even know if I would call it a superpower just because I haven’t wrapped my mind around that. But it’s just something that I’m very, very passionate about. And I think it stems from the fact that when I was little, I was constantly looking for myself in the media that I was consuming and wasn’t really finding it. In my book, I tell a story that when I was a kid I had these two little children’s books, and they were called Andy Finds a Turtle and Patrick and Emma Lou, and they were old books from like the ‘80s. They were these like, black and white books. And I would flip through them constantly because the characters had disabilities. They were little kids, and they were going to physical therapy. And that was kind of the vibe. But I loved those books, and I still have them on the shelf literally right next to me. And it wasn’t until I started to get a little older that I realized that it shouldn’t have been just those two books that I was flipping through. There should’ve been more, and I wanted to see stories of people like me.

And then fast forward a bit of time, but when I was ten, I had the opportunity to appear on multiple episodes on a season of Sesame Street. And suddenly I was, in this very small way, this representation that I had been looking for! That, in hindsight, I think was this moment for me, even though I was ten, and you take everything for granted at ten. But as I got older, I realized if that meant so much to other people, there has to be a way to sustainably do this so that we’re not looking for ourselves so much and that we’re easier to find. And believe me, I take no credit for the trend of making that happen. There are so many disabled people who are doing this incredible work to bring about more visibility and to bring disability to the forefront of every conversation. But what I love to do is support people in sharing their story, because I think that so often people kind of send the message when you have marginalized identities that your story doesn’t really mean anything to anyone, that your story doesn’t matter, that it’s not going to leave a mark or make a difference.

And once I realized that my story was making a difference and that other people’s stories were making a difference for me, that was energy that I just wanted to bottle, and I wanted to do something with it. And so, that is really kind of how I came to this work, because I realized that storytelling is how we meet people where they are. It’s how we humanize things. And so often, disability is dehumanized because we just don’t understand it. We don’t think about it as a natural part of the human experience. But if I can be there in the background to help someone be their authentic self, not change their voice, not change their narrative, but just help them get it ready to go out into the world, that is everything to me. And it came from wanting to be what I could not find.

VALLAS: I’m getting chills as you share that, and just the power of wanting to be what you could not find, I mean, it’s amazing. And also, folks should go back and watch you on Sesame Street because it is amazing! It’s also part of why a lot of people know you. You’re someone who, yeah, to go to an ADA anniversary event with you, right, is for people to come up and be like, “I need a selfie with you,” right? Because you have become a representation in so many spaces for people that they otherwise could not find. I love you telling that story.

I wanna dig in a little bit more deeply into how you so beautifully do work with writers to tell their stories. What’s the process of working with writers for the Voices Project? The end product is very visible, and you were just describing some of the passion and the motivation for it, but I would love to pull the curtain back a little bit on the how. How is it that you actually work with writers in addition to saying, “Hey, pitch me” and then, “Hey, here. We’re gonna pay you for this?” What happens in between?

LADAU: I think it’s important to be very upfront that not every pitch gets accepted. And I know that might be an unpopular thing to say, and it is not because I think that someone’s story has more value than someone else’s story. It’s because that is how pitching works. I’m not really here to coddle anyone. And I know that this is going to be a very complex thing to say, but I very much believe that I want disabled people to have access to the process of pitching and engaging, but I don’t want to treat disabled people as though they require some kind of special treatment. I want it to be just like a typical publication. The difference, however, is that whereas typical publications, mainstream publications are so often screening for things like grammar, sentence structure, or they’re looking for certain language, right, I’m not looking for that. I’m still looking to make this process as accessible as possible. I don’t believe that you need to have perfect grammar in order to have a pitch accepted. I think that’s a very ableist concept, and I think that that really shuts a lot of people out from the process.
And so, what I’m looking for is not, are you the world’s most polished writer? I’m looking for, do you have a unique angle? Do you have a story to tell that will make people think in a way that they haven’t really thought about something before? And so, that’s my process. That’s my thinking. When somebody sends an email with a pitch, that’s what I am looking for. I don’t want to tell the same story over and over. And the reality is that a lot of disabled people do have very similar stories. And so, sometimes that’s very challenging for me because I have to say, “I’m so sorry. We have published something like this.” That doesn’t mean that your story is not important. It just means that we’re trying to give a platform to a diversity of voices, and that requires being a little bit selective so that we can ensure that we’re actually living up to our values of displaying a multitude of experiences.

So, once somebody pitches me and I accept it, the goal is really to get them to feel like there is a trust established, that I am not going to alter their story, that I am just here to support them in how they communicate their story. And so, once you write something, I will go in, and I will edit, I will make comments, but I’m not going to change your voice. That’s not what I’m here to do. I’m really here to say, “Your voice needs to shine. Here’s how we can ensure that that happens.” And so, it can be a bit of a back-and-forth process in the comments section of a Word document or Google document. We send some emails back and forth. I’m available to answer questions. And then we get to a point where I say, “Hey, take a look. These are, I think, the final edits, the final comments, and then I’ll send it over to editorial, and we’re good to go.” And so, it’s an iterative process. It’s a very back-and-forth process because my job is not to control your narrative. My job is to make sure that your narrative is exactly what’s coming through.

VALLAS: I love that. And God, I just, I also just wanna say, one of the things that’s been one of my favorite parts of being part of this Disability Economic Justice Team at TCF has been this series, but it’s also been the feedback from so many of the people who get to write for it, right? I mean, it’s just like it’s part of why you can’t choose favorite pieces, right? Because they’re all powerful. And the experience that so many people then relate of what it felt like to be able to share their story and to not have it rewritten, to not have the narrative controlled, as you were putting it, and to be heard and to feel seen, right? It’s really powerful on a lot of levels. So, I’m really proud of what you’ve been able to build.

We’ve talked a little bit about what the series is and how it works. I wanna zoom out a little bit further and connect it to some of the broader work that you’re a part of and that the Disability Economic Justice Team at TCF does. The Team and also the Disability Economic Justice Collaborative—which any listener of this show will have heard plenty about the Collaborative because we bring it into this podcast at a whole bunch of different points—the larger goals are bringing about the policy change as well as the culture change that’s necessary for everyone with a disability in the U.S.—and that’s about one in four Americans—to finally have the economic security and opportunity that we all deserve. And I every time I say that, I always have Ayanna Pressley, congresswoman from Massachusetts, words ringing in my ears from an event that she did with the Collaborative where she said, “We’re not fighting for scraps. We’re fighting for liberation.” Why does storytelling matter as part of that? And how is it a tool for achieving those bigger-picture ends that are not ends that end with a story being told?

LADAU: I often say to people that you can create a policy, but you can’t legislate an attitude. And I think that has become even more true in very divisive, heated political times. And so, for me, what I want to do is shift the attitudes because no matter what the policies say, it’s really about shifting perspectives. Because the laws are in place, and yet people do not necessarily follow them. Perfect example being the Americans with Disabilities Act, which I’m sure a conversation that people listening to this show have heard ad nauseum, but it warrants constant repeating that we’re 30+ years past the passage of this landmark civil rights legislation. The law is in place, and people still want nothing to do with the spirit of it. And so, when we pare that down from big, broad, sweeping policy conversations to, hey, there are real human beings that this is impacting, I do think that that has an effect. And that is why storytelling is so essential: Because you can create any draft legislation that you want, but if you’re not thinking about how it is really going to affect human beings day to day, then you’re entirely missing the point of what it means to create change.

And so, I often say, too, that data and storytelling really go together like peanut butter and jelly. Unless you have a peanut allergy, in which case, please be safe. But [laughs] the numbers are important. We wanna know the big picture. But in that big picture, the individual human being can get lost too often. And so, if we have a story that backs up these numbers, if one in four Americans with disabilities suddenly becomes here is actually the story of that one American that we are talking about, I really do believe that that is what changes hearts and minds. And that is what moves us closer to liberation. I am very much the type who wants to see someone’s humanity and not just see them for a statistic. I am very much the person who wants to understand what someone’s life is really like. And you can’t deny the power of that. And this is very different to me than the act of tugging at heartstrings for viral clickbait, right? This is really about digging into the nuance that I was addressing earlier in the episode. We cannot miss the nuance. We cannot miss those little in-between bits and pieces of a person’s story that will really strike a chord with someone. So, that is why storytelling, I think, is so essential to policy change for me, because that’s where we find each other’s humanity.

VALLAS: I love that. And I wanna stay with this theme just for a little bit longer before we talk a little bit about your book and also about you as an advocate, as an activist, as a storyteller. What makes for a compelling story, and in your opinion, what’s the secret to good storytelling? You speak about this all the time. You often do workshops. You do panels. You talk to all different types of audiences. And you yourself are an experienced storyteller. But as you work with writers and as you share with others your own experience, what have you learned about what makes a compelling story?

LADAU: I have an actual process that I will bring people through in workshops, and it’s a series of questions that I ask people to ask themselves before they are conveying a story. And I realize that that can sound very rigid and very structured. And I realize that sometimes you just wanna be free flowing and you just wanna get the words out on the page. And I am all for that as well. So, I’m not looking for some kind of overly put together outline. What I’m looking for is some self-reflection before you communicate a story. And I think that’s what makes for a compelling story. So, an example is really asking yourself who you’re trying to reach. That’s a big one because you’re not going to reach everybody, and that’s okay. Think to yourself before you share your story the impact that you want to have at the end of sharing that story. Where do you want this process to go? Who is this for? I think that that really helps when you are shaping how you’re going to communicate something. Because there are billions of people in the world. You’re not reaching everybody. Who’s your target audience? I think that is essential, really having that vision to think towards the end before you’ve even gotten anything on paper. And I know that that can feel very scary and overwhelming to people. I’m not looking for a definitive answer here. I’m just looking for you to think, what is the impact that I would wanna have with this story?

And then really, another big question that I ask people to think about is, what is the response that I’m aiming for, and what responses might I receive? And so, this isn’t about me telling you how to tell your story. This is about me asking you to anticipate what might come from sharing your story. What are the critiques you’re gonna get? What’s the positive feedback? Who are the trolls gonna be? Who are your supporters, right? Think this all through beforehand. And I’m saying this in the context of sharing your story in connection with policy change and advocacy, right?

I also wanna clarify that sometimes sharing your story means just putting it down on paper for you, and it means that you don’t owe anything to anyone. And so, forget all the structure and forethought that I just told you about, because this is just about you. And that’s compelling because it’s yours. And then also, sometimes you just don’t owe anybody your story at all. So, I wanna be clear that there’s layers here. I think that good storytelling, if you are using it for a very specific purpose, does require that forethought. But don’t forget that sometimes your story is just for you.

VALLAS: I love that, and I feel like that’s a really powerful added layer of this as well. Obviously, there’s a lot of different contexts in which one shares a story. We very rarely talk about it being something that one puts down just for oneself, right? And I will confess I am an avid journaler. I am a person who finds a lot of power in writing my own thoughts down and has found a lot of healing through that. So, I think that’s a really important addition to all of what you just shared. I also just wanna note everything you just offered is also just really good, brilliant tips and wisdom when it comes to communicating with the goal of persuasion, right? So, I think there’s a lot of overlap between storytelling and advocacy, right? And we often don’t talk about or think about advocacy as a form of storytelling.

So, I wanna get into your book a little bit, and then we have some other things we’re gonna talk about, too. And these obviously will connect. But Emily, you are the author of Demystifying Disability, as I mentioned, and you started to talk just a little bit before about some of what you share about your own story in that book. Would you tell a little bit of how you came to write the book, why you wrote the book, what your goals were? Here you were just laying out, like, thinking through all of these different, you know, who’s the audience and what are your goals and what are the consequences with anyone who writes a story. But I know that that means that there was a lot of intentionality behind your writing this book. I’m curious if you would talk a little bit about why you wrote it and how you came to write it.

LADAU: I absolutely followed my own process for that, because I think that when the prospect of even writing a book was first presented to me, I was so utterly overwhelmed by it that I had no idea how to condense what it was that I wanted to say into X number of pages. And the book actually came to be because I was on a podcast with a friend of mine, and we were telling stories, and we were having conversation. And a literary agent heard the podcast and realized that she had read something else that I had written, and she reached out to me and asked if I had ever considered writing a book. And initially I had thought maybe I would write a book connected to my personal story. My mom shares the same disability that I do, and so we thought that would make for a compelling book. But the further I got into that process, the more that I realized that something I’ve always felt was missing from the broader collection of information on disability is just a place to go when you have basic questions that you want answered about disability.

And I am not saying that I am the expert on disability. I did not write the Bible on disability, the encyclopedia on disability, none of that. I am not the authority. I am one human being who just wanted to offer a place that people could go to pick it up and even just read a small section of the book if they have a question and feel like they won’t be judged for not necessarily having specific knowledge about etiquette, about media, about a term, right? I don’t want people to feel unwelcome to the conversation about disability. And so, that was really where the book came from. It was my contribution to a much broader conversation about how to think about disability, how to talk about disability. Because if we don’t have those entry points, if we don’t feel like we can have these conversations, we’re not going to have these conversations. And so, what I did was I tried to interweave storytelling with a broader overview in the hopes that it would just give people that first moment of feeling like, “Oh, okay. I feel a little bit more comfortable talking about this because it’s been humanized now.” And that came with its own set of critiques, and that came with its own set of positive feedback, just like I was talking about. I have been absolutely subjected to the process that I laid out. And so, I hope that I can then take that and use it really to inform my own practice as an editor and as a writer moving forward.

VALLAS: I love that. And again, the book is called Demystifying Disability. We’ll have a link to it in show notes so folks can check it out. It’s certainly not new by any stretch, but it is absolutely evergreen. And I love your framing it up that it creates really a resource, I think, for folks who might have questions where they don’t really know who to ask or where to go. It also is very evocative to me of a lot of what we actually do through that Disability Economic Justice Collaborative that I mentioned, right?

LADAU: Yeah.

VALLAS: Creating safe spaces so that folks can learn and have an entry point, right? As opposed to feeling like, “I don’t know how to talk or think about this issue without stepping in it or doing something wrong.” So, I definitely highly recommend the book. What has the response been in the years since you put it out?

LADAU: So, it came out in September of 2021, so my baby’s about to turn two. I would say overwhelmingly positive, and I don’t say that lightly. I never take it for granted when somebody says, “Oh, we’re using it in our classroom or for a book club” or, you know, “I’m a new mom of a parent of a…. I’m a new parent of a child with a disability, and I found your book.” And…I just feel like it is wild to me every time somebody says, “I took the time to read this.” I still can’t believe it. I genuinely mean that. But there have also been very fair critiques where people have said, “I don’t feel that my experience is represented. I don’t feel that you have encompassed me in this book. I feel that you have missed a particular point.” And that is something that I take very seriously, because what I say in the book is that we all still have learning to do. None of us are absolved of that. That includes me. I have work that I need to do and learning that I need to do, and I cannot and will not ever speak for anyone. And that, I think, is the challenge of storytelling, is balancing in such a way that you’re saying, “My story is my own. I cannot speak for anyone else.”

There’s a very common refrain that if you’ve met one disabled person, you’ve met one disabled person, and it’s so true. So, there’s no way that I could say that my experience is representative of everybody else’s. But when people say, “I don’t feel seen, I don’t feel heard, I don’t feel represented,” I take that seriously. And that means that in my work moving forward, that is something that I can be conscious of. But at the same time, I also feel incredibly lucky that there are so many people who say, “I feel like you’ve welcomed me into a conversation that I was told I had no part in.” And that’s exciting to me because I don’t want disability to feel like it’s something scary. I want people to understand that it’s just another part of what makes people who they are.

VALLAS: And as you were saying before, and just to bring it back around, right, a totally normal part of life and something that most of us will experience at some point if we are lucky enough to age, right? That is one way that people become disabled. It is also the only marginalized minority group that anyone can join at any point in time, right? And just something that’s worth reminding.
So, a question that I love to ask guests on this podcast is—and it’s sort of unfair to ask people to pick one or two, especially given the line of work that you’re in. But I am gonna put you on the spot and ask this question—if you had to pick one, or I’ll give you two, if you had to pick two, what are the most toxic limiting beliefs that we as a collective most need to release and replace in order to build an economy where everyone is truly free, including disabled people?

LADAU: Whew, gosh. Okay. So, I think that we very often limit ourselves by playing games of Oppression Olympics with one another and creating false hierarchies and deciding that some people just don’t belong at the table in the conversations that we are having. And when I say this, I do not mean that everyone always should have equal space at all times. I’m talking more about equity than equality here, and I do think that we need to be taking into account who is being shut out from the conversation. This is not my call to action for us to uphold the typical cis-hetero patriarchy over here, right?! This is my call for us to dismantle that by not playing these games of, “Well, I have it harder than you do, and my voice matters more than yours does.” It’s how can we actually all come together to figure out whose voices are missing from the conversation and jointly uplift those voices and bring them more to the center of the conversation? And that requires some people to step back. It does. And I think that the longer that we assume that if we uplift one particular person or group’s perspectives over another, that that means that only they will get what they need instead of that we will all get what we need, that becomes the problem. And I think really what I’m pointing to is, I believe it’s Audre Lorde, “None of us are free until all of us are free.” So, this is not some original thinking here by a long shot! But it is to say that that is something that is constantly on my mind. We need to stop being in competition with each other.

VALLAS: I love that answer. And it is evocative also of another metaphor that’s been brought into this show at different points by different folks, the idea of crabs in a barrel, right? Everyone’s trying to get out, but some crabs are pulling down the other crabs and saying, “Oh, you know.” So, it’s Oppression Olympics is another metaphor that I think really does have space in this.

I’m gonna do a quick lightning round with the remaining time that we have that’s a little bit more focused on kind of who is Emily Ladau and a little bit less focused just on the high-level issues, although, of course, the two are very much related. So, I’m really excited to hear the answers to some of these questions as someone who’s known you for quite some time. So, thank you for indulging me on a few of these questions. Question number one in the lightning round is, what is your personal mission statement, and how did you come to find it?

LADAU: It’s lean into the messiness.

VALLAS: Love that!

LADAU: [laughs]

VALLAS: Not just ‘cause I have a super messy house. [chuckles]

LADAU: I came to it because I finally realized that nothing has a clear-cut, straight answer. At all. Ever. At any time. And if I accept that and lean into it instead of fighting against it, then it’s not gonna make it easier, but I am hopefully going to have an easier time accepting what’s coming to me.

VALLAS: I love that so much. A friend of mine who has also been on this show and who’s very related to the show because of a radio network that he is responsible for, Alex Lawson, he often likes to say, “Maintain maximum flexibility,” which I feel like goes hand in hand with “lean into the messiness.” I love that. And I’m gonna borrow that.

The next question I’m gonna ask is another one that I like to ask folks as part of these lightning rounds. And I know you’re gonna disagree with me when I say you’re a superhero because you’re very modest, and you get uncomfortable, and you start to blush when I say things like this about you. But I believe that everyone that I have on this show is a superhero who works with law and policy, as I always mention in the intro. So, if you accept my premise that you’re a superhero, what are your superpowers?

LADAU: I’d like to think that my superpower is bringing out what other people have to say. People love to tell me stuff, so maybe it’s that I’m a good listener. Maybe it’s that I am a good communicator. People confide in me quite often, and I don’t take that for granted. [laughs] So, yeah, maybe just communicating and listening.

VALLAS: I love that. And to bring our side chat, the notes that are being passed during this recording, into the recording itself, Kings, one of our fabulous producers who also knows you very, very well, has also added “modesty and humility” as two of your superpowers! I think that’s actually perfect, given some of what I just said, and so I wanna add those in.

How does self-care show up for you as a leader within the disability community? This is a question that I have pledged to include in every episode to keep alive the themes from our self-care series that we did earlier this year. I know that there’s nothing in your life that, at least from where I sit, that you do without intentionality, and I know that you bring that to self-care as well. Do you have any practices or tips that you wanna share that others might be able to benefit from?

LADAU: This is a relatively newer one for me, but leaning into radical honesty. So, if something is happening in my life, it’s not that I feel that I owe that information, but I share that information with people who I am working with or connecting with in the hopes that that will give them some insight into what’s going on in my head, and hopefully they will give me some grace. And so, that looks like telling people that I work with that I’m dealing with a particular medical issue. It looks like being honest if I am just completely underwater and overwhelmed. And I’m working on this. I’m not preaching from the top of the mountain here. Like, I am under the weather as we did this podcast. But I was like, I’m gonna push through. And so, sometimes I can be honest, and I’m still gonna push myself, right? Because we’re all just human beings and trying to figure out what’s self-care looks like. But I’m really, really trying to be more honest with people.

VALLAS: I love that answer so much. And also, I can just say I’ve seen you model it, right? And it’s something I really appreciate that you do. And it sometimes is, it can take a lot of courage. And also, we should note, it also sometimes requires some level of privilege in certain spaces and can’t always be safe to do. And so, all of that should be acknowledged. But I watch you do it and I so admire and appreciate it. I’ve learned from it because we certainly, especially as women, especially as disabled people, I mean, you get conditioned to need to look really buttoned up all the time and to never show any vulnerability. So, it actually can take a lot to bring that level of honesty. And I know you’re gonna say more now.

LADAU: Yeah. I’m really glad that you mentioned that it does require you to be in a specific place of safety and privilege, because that’s the other thing, is that often when I’m not practicing it, it’s because I’m in a place where I don’t feel like I can do that. I’m very lucky that I have colleagues who make me feel safe and people in my life who make me feel safe. But there are also plenty of moments where I’m like, I am not in a position where I, as an apparently disabled woman, am safe to actually be radically honest. So, yes, that is self-care with a major caveat for sure. And I want to acknowledge that I’m very, very aware that it’s circumstantial.

VALLAS: I’m gonna ask the next song, which is gonna switch, or the next question, which is gonna switch gears just a little bit. It’s gonna take us to a song. But one of my favorite questions to ask as part of these lightning rounds is, what is your hype song? What is your walk-up song? I know you have one.

LADAU: I do, but I’m a little nervous to say it because there’s been some controversy. But I’m just gonna say it, and please know that I’m fully aware of the controversy. But Lizzo’s About Damn Time has been a really transformative song for me. It just kind of came out in a moment in my life where it was exactly the punch I needed to keep going. But that’s not without awareness of what’s going on.

VALLAS: Yep. And with full awareness of what’s going on, we had an episode a couple of weeks ago talking a good deal about Lizzo. We had actually recorded it before some of this came to the forefront. But I feel very comfortable continuing to say that Lizzo’s songs have just extreme, extreme value no matter what’s going on with the broader controversy that we will see where that goes. There is so much about the frequency that she transmits through her music that is just truly transformative and shifts energy in really magical ways. I love that song too. It’s one of the ones I have on my morning list, and I use it sometimes at certain points in the day when I really need to. So, I love that answer for you.

And one last question I’m gonna ask as part of this lightning round, what inspires you when the work gets hard, as it so often does, and how have you dealt with challenges and setbacks?

LADAU: Finding a community has been essential for me. And yes, we are all part of a broader disability community. But finding those people who you can just go to at any hour of the day and say, “Hey, I am just frustrated right now. Being disabled is a real pain right now. Like, I need to have real talk with you.” And I think that goes back to the radical honesty thing because we’re also very much supposed to be okay at all times. But I am so inspired when somebody comes to me and they’re like, “Actually, I’m struggling right now.” That’s more inspiring to me because it means you’re a real person, and you’re living in the real world, and you’re figuring it out. Or maybe you’re not figuring it out, but you’re admitting that you want support in figuring it out. So, yeah, I’m inspired by the people who I interact with every day who are just like, “This is hard. Let’s figure it out.”

VALLAS: You’re definitely one of those people for me. I have a lot of love for you. I hope you feel it flowing as we’re having this conversation.

LADAU: But I do! I love you so much.

VALLAS: [delighted laugh] Love you right back.

We’re gonna run out of time. And so, I wanna give you a chance to plug what might be coming next for your work, what’s coming next for the Voices Project. What are your—I mean, here we are at one year, right, almost marking one year of this project—what are your hopes for the next year of Voices, in the last couple of minutes that we have?

LADAU: More stories! More stories. Please, please pitch your stories if you have them. I want to continue to give space to as many people as possible, to as many perspectives as possible. I only want to see this grow. Or I do want to be clear—and thank you to our lovely producer in the chat, Kings, for reminding us—right now it is U.S.-focused. That does not mean that we are not incredibly invested in global economic justice. That just means that at the moment we’re focusing on U.S. policies and practices, right? So, if you are U.S. based, please, please reach out. Share your story. Let’s give you a platform to tell it. That is my goal. That is my dream. And that’s what’s next for me, honestly. If a year from now I was doing the same thing, I’d be happy.

VALLAS: Well, we’re gonna have, as I mentioned, links in the [show notes] so that folks can find that pitch page. There’s a whole set of really detailed pitch guidelines to make it easy so that everybody can know what they need to know going into this if they are interested in writing for the series. And also, we’ll have links to pieces that folks can read and ways to get in touch with the Disability Economic Justice Team and with you. And we’ll have a link to your book as well.

Emily Ladau is the author of Demystifying Disability. She’s also the editor of the Voices of Disability Economic Justice Project. She wears a bunch of other hats, too, and she’s friends with all the folks on Sesame Street. So, check out all of her work in show notes. Emily, it’s such a pleasure and such a just an absolute treat and joy for me to get to work with you more closely in these roles than we’ve gotten to work together before. I am such a fan of your work, and I just have a lot of love for you and a lot of gratitude. So, thank you, thank you for taking the time. And this was really fun for me.

LADAU: Thank you for having me. Thank you for making this such a lovely space for a conversation. And next time I’m gonna come with a fedora or a fascinator. So, get ready.

VALLAS: I’m available for that!

LADAU: [laughs]

VALLAS: Yes, please! Yes! All the hats. All the hats. [theme music returns] I love it so much. We’ll talk soon.

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. Find us every week on Apple Podcasts, Spotify, or wherever you get your pods. And if you like what we do here at Off-Kilter Enterprises, send us some love by hitting that subscribe button and rating and reviewing the show on Apple Podcasts to help other folks find the pod. Thanks again for listening and see you next week.

Tags: ,