People Behind the Plans: Disability Advocate Rebekah Taussig on Built Environment Barriers You Might Not See

Meghan Stromberg: This episode is sponsored by AARP. The home is central to individual and community well-being and should support our lives both today and into the future. AARP supports making our communities affordable and welcoming for all people, regardless of age, background, circumstance or physical ability. Visit aarp.org/livable for helpful resources on livable communities, including issue guides and how-tos, as well as model legislation on key issues and innovative solutions such as missing middle housing ADUs, the AARP Livability Index and more. Visit us at aarp.org/livable.

Rebekah Taussig: When you think about designing a space for people with disabilities or for people on the edges of average, you end up designing spaces that work better for everyone, right? You think about even something as simple as a curb cut. Those were designed for wheelchair access, right? But when you design for that wheelchair, then you also have access for people who are using strollers or pushing food carts or rolling luggage, or people whose bodies are in pain and need to take smaller steps.

Meghan Stromberg: Welcome to People Behind the Plans. I'm your host, Meghan Stromberg, editor in chief of the American Planning Association. Today's episode is being recorded live at APA's National Planning Conference in Philadelphia, where planners from across the country are gathered to learn, connect and hear from keynote speaker, Rebekah Taussig. Rebekah is an author, teacher and disability advocate whose personal stories have been featured in TIME Magazine. She's also an influencer on Instagram. You should check her out at @sitting_pretty. Here at NPC, she's challenging everything planners think they know about disability as she invites them into her lived experience. Rebekah, welcome to the podcast.

Rebekah Taussig: Thank you so much for having me.

Meghan Stromberg: I'm so glad you're here.

Rebekah Taussig: Me too.

Meghan Stromberg: You are our closing keynote speaker at NPC, and you're sharing a really engaging story with everybody who's gathered here in Philadelphia. Storytelling has been your primary medium as a disability advocate, and particularly you're sharing your stories as a way to connect, to educate, to let people into a world that they may not be familiar with. Have you always been a storyteller? Like, how have you honed those skills over time?

Rebekah Taussig: Yeah, kind of. I mean, as a kid, I was definitely the one with all the computer printer paper and my crayons and drawing little books. And my sister and I had a little library that we made in our playhouse, and we had library cards. It was called the Rose Library. So yeah, I started writing little books when I was really young, and that kind of turned into a fat notebook that I would carry around with me and write angsty poems as an adolescent.

And then storytelling has kind of just been with me and morphed and changed as I've grown. In college, I was writing slipstream YA fiction, and in my master's I was writing literary analysis. And it was not until I got to graduate school in my PhD program that I discovered disability studies, which kind of became the spark to the kind of writing that I do now. I did not go to that program to write personal writing about disability and my experience with disability, but when I found disability studies as a lens, there was this huge alignment, this shift in perspective that showed up in my writing. And so I started writing more and more about my lived experience with disability because I was thinking about it differently. And my mentor at the time, this writer Laura Moriarty, she saw that spark in me and she was like, "I think you need to lean into this." And so I did, really hard.

And I think part of what made that fit, or why that took off, or why that felt so right was that growing up visibly disabled — so I've used a wheelchair since I was 6. I've been paralyzed since I was 3 — growing up in this body, I think sort of meant that there were lots of stories written over me or about me as I moved through the world, especially as a child in a wheelchair. You move through a public space, and everyone who sees you has a story about you and what your life means. And even in my own family, there are stories about who I am and my family and what this has meant for my family. And culture at large, thinking about the symbolism of a wheelchair. And so I think that so much of what felt right or my drive to write my own stories was to be able to reclaim that narrative and say like, "This is what this experience actually feels like, and this is what it actually means to me." Which is something I'm still working to hone because it is difficult to hold on to that narrative in a world where there are so many loud, prominent, mainstream narratives about disability and what that means.

So yeah, I think storytelling has always been in me. And I think, you know, when I look back at the things that I was writing in my younger years, I think so much of that was my attempt to get at that. I was writing about misfit characters and people on the edges that didn't actually fit or belong. And I think a lot of what I was trying to get at was that feeling. And as I've gotten older and written more and honed that voice, a lot of that has just been trying to tune more and more into what this is actually like, what the truth of this experience really has been for me.

Meghan Stromberg: You mentioned disability studies and focusing on that in grad school, and there's a story in your book Sitting Pretty: The View From My Ordinary, Resilient, Disabled Body, which I really enjoyed reading. And as I told you earlier, it really has challenged the way I've been thinking about some things, which I suspect was one of your intents. But there's a story about teaching your first class to high school students about disability, and they were at best unengaged, it sounded like, and sometimes downright hurtful in how they talked about disability, how they experienced a world that included disability. And I'm sure it was personally hurtful. And you tell this story in the book about trying everything to connect with these kids. And it really reminds me that sometimes storytelling isn't easy, and we have to go at it from different ways. And I'm just wondering if you have any advice for planners as they're trying to meet diverse audiences, sometimes people who don't necessarily want to hear what they're saying. Any advice for how they can do their storytelling?

Rebekah Taussig: Yeah, I love this question because I could talk about storytelling and how we craft stories all day. I think storytelling is so powerful. I think a couple of different things: One is when we are trying to persuade people or bring people in on a vision that we have or a plan that we have that we want people to buy into, I think it can be really instinctual to start with ideas and try to explain that idea and maybe have some data to back up that idea. And I think often the thing that makes us passionate about a project or a plan or a mission or a dream is our experiences, the things that we have felt and seen and heard with our bodies, right? The things that we've witnessed and even heard about. And so I think that while the ideas and the data obviously can be one part of that persuasion or one part of conveying that message, I think the thing that seems to transform us is storytelling, right? And so I think remembering those things, like what have you seen and heard and felt and experienced that transformed you to believe in this mission or this plan? And remembering those things and figuring out what those stories are is part of it.

But I think another layer of it is when we're trying to engage a really broad, general audience, the impulse can often be to water that story down to be the most universal, right, to make that as broadly applicable as possible. The thing that I would recommend you do is actually hone down on the specificity of that story. I think when we tell deeply human stories, when we can bring people into what that felt like and what you saw and what you heard and what you experienced, that is how we tap into the most universal themes in storytelling. Safety and belonging and connection and community is found in our most human stories. So I think the principle I would approach is one, remembering what those experiences are and two, trying to go back into those moments and bring them to life for other people because I do think that the specificity and the humanness of that is what kind of transcends and communicates that larger message, even though that's not always the most intuitive.

Meghan Stromberg: It really taps into that human need that we all know about to connect with one another. And if you can find those points of connection, sometimes you're partway there, you know? If you can just find a way on a very human level to connect.

Rebekah Taussig: Yeah, yeah. It's the humanness of that. There are universal themes of humanness, right? Like we talked about, belonging, connection, community. And so I think the way into that is the specificity of that story.

Meghan Stromberg: I'm going to switch gears a little bit and talk about all the "isms" that we know about: racism, sexism, ageism. There's one that you talk about that doesn't get talked about a lot. And in fact, one of the things you say in your book is it doesn't even have that great of a definition. And that term is ableism. And I'd like to share your definition of it. You call it "the process of favoring, fetishizing and building the world around a mostly imagined, idealized body while discriminating against those bodies perceived to move, see, hear, process, operate, look, or need differently from that vision." And you also talk about how that's a learned behavior in a lot of ways. How do we start to dismantle people's attitudes and the structural constraints to foster a more equitable experience for everybody?

Rebekah Taussig: Yeah. Yeah, what a big question—an important question. You think about the disability rights movement or the work that has been done to create inclusion. The hard fight that that has been. So much of that has focused on legislation and infrastructure, like making things accessible, which is vital and important and has changed the world for the better. It's the reason that I was able to go to school with my peers and all of that, so that's fundamental. But I think that what has become apparent is that legislation can only go so far without, like, a deep cultural shift. I mean, you can see that we've had the ADA [Americans with Disabilities Act] for almost 33 years now, and there's still so much resistance from people or lack of understanding about why these things are important. And so I think that deep cultural shift has to do with addressing the stories that we tell about disability. What are the deep cultural narratives that we have about what disability is and what it means to live in a body that doesn't fit into the world? When I think about the stories that I see in the world around me about disability, as someone who lives in a disabled body, I see stories about disability being this fringe, exceptional experience, totally separate human experience.

Meghan Stromberg: Othering.

Rebekah Taussig: Yes, that's right. This is something like an unfortunate experience that you hope doesn't happen to you, but it's exceptional. It's rare. It's on the edges. So that's maybe one narrative. And another narrative might be that including disability is an act of benevolence. It's a great kindness to extend any amount of inclusion. And so I think that to combat that narrative and kind of depict disability as the honestly human experience that it is, I think comes back to storytelling.

Rebekah Taussig: I know I'm biased, but I do think that storytelling is like one of the most powerful tools we have on Earth. I think it transforms the world we live in. And so when I think about the stories we tell about disability, I want many stories, so many stories, that reflect the lived experience of disability. And I think that we are moving in that direction. I see that the last five or 10 years there's been such a shift in social media, people being able to represent their own experiences and tell their own stories. For so long, you think about the stories we have about disability being told by, shaped by people that don't know that experience and how much is flattened through that. So I think I, firsthand, have seen the way that storytelling on social media has been empowering and transformative. And I also think that the stories we tell on screen, the stories like TV shows and films, I see these baby steps being taken by people in those spaces like directors and producers and writers and actors, recognizing the importance of authenticity in that storytelling. And I think that is thrilling, and I'm excited by that and hopeful. The steps are very small, but I'm hopeful by what I see in that. I think that when we transform form that story, when the actual narrative that we have as a culture about what it means to live in a body can shift, that's when we get into the next frontier of one, being able to actually implement the legislation and regulations that we have in place to begin with, and two, imagine an even more inclusive world that holds all of us in the bodies that we live in.

Meghan Stromberg: I love what you're saying about personal stories and the power of social media to really understand a person you might never run into — or feel you understand a person you might never run into — in real life and to really open up minds. And I'm wondering if also it could be helpful to think about what you said earlier, the fact that at some point in our lives, most of us will have some sort of mobility difficulty. You know, I think about riding transit, right, and the straps that hang from the ceiling. Well, you have to be a certain height to reach that. That's based on some idealized [height] — probably a man — and doesn't work for everybody. So maybe there's a way we can just think about the ways we encounter barriers and then how that's magnified by the choices that we make that are not inclusive.

Rebekah Taussig: Right. Well, I mean, that is absolutely true. When you think about designing a space for people with disabilities or for people on the edges of average, you end up designing spaces that work better for everyone, right? You think about even something as simple as like a curb cut. Those were designed for wheelchair access, right? But when you design for that wheelchair, then you also have access for people who are using strollers or pushing food carts or rolling luggage, or people whose bodies are in pain and need to take smaller steps. When you think about the people that are on the edges of that, all of us benefit from that approach. That's a principle that I think is useful in planning for humans, right?

Meghan Stromberg: What would you like planners to know about how you experience the world? I'm thinking about maybe navigating sidewalks. You just mentioned curb cuts or finding accessible and affordable housing. You know, what are some of those stories that you like to share?

Rebekah Taussig: I think when I try to picture the themes that come from my life as living in a city, I think that part of that experience comes down to feeling like a disruption. Like there's this whole mechanism that's in place, this system that's in place, and I arrive and then suddenly that whole system is thrown into chaos, right? We didn't anticipate you, or we're going to have to scramble to figure out how to include you here. So I think disruption. If I think about what I would want people to know about my experience in the world, that word feels prominent and prevalent. It's kind of layered because there's the disruption within the actual built system, the built world, but it's also the people that occupy that space and the way that the people in that space respond to that disruption.

You mentioned affordable, accessible housing. I've moved four times in my adulthood, and every single time I have run into this feeling of there is no place for me to live in this city. Like is there literally no place for me to exist in this city? The feeling like finding places that are affordable but profoundly inaccessible, places that are accessible but way too expensive that I could never afford, or like public housing that should be accessible and affordable, but literally has waiting lists years long. Or places that are advertised as accessible, but the parking lot is on like a giant hill or there's still stairs or you can't get into the bathroom, right? Just this whole maze. And how often I have felt my city is actually just like a playground bully, like flipping me off. And I don't actually believe that anyone that was a part of the planning is that person,

Meghan Stromberg: Of course.

Rebekah Taussig: But the cumulative effect, right, is this feeling of, "We do not think of you. We're not thinking of you here." Of the four times I've moved, every time the place I've ended up in has just been a unicorn of a home. The last place that we moved into a year or so ago, after looking for two years for a home — and I felt like we were pretty flexible. I needed to be able to get into the house, and there needed to be like a bedroom for me and my partner and our son. That's what we were hoping for. I'm not too picky, but it took us two years to find a house — and the house we ended up moving into, the woman who lived there before us had built these ramps for her aging dog. And that was the home that we, you know, that's what we found.

Meghan Stromberg: What are the chances?

Rebekah Taussig: Total unicorn, right? So all that to say, the feeling, I mentioned the word disruption, but it's also invisibility. No one is anticipating me because they don't imagine that I'm there, is what it feels like. That's a bit of it, but I think also, just to go back to what I was saying before about the people who are actually in those spaces with me, makes me think about — this is such a tiny moment and on its own, I don't know how significant it is, but thinking of it as one in 1,000 moments with people — a few years ago I was looking for a new hairdresser, and did all the research that one does when they're looking for a hairdresser: trying to find someone that would be affordable and someone that had a style that I seemed to like based on their Instagram photos, whatever. Part of the layer of that was, can I get into that building? And so I spent hours on Google Images, Google Earth looking at spaces and seeing like, where would I park? And most websites, especially a few years ago, never mentioned accessibility on the website. So I am like the detective sleuth deducing all of that on my own. And I found this place that it looked like there was stairless entry in, and I thought I could see where I could park. So I go to this new place, and I'm rushing to the doors because I'm always running late. And they were like these two giant, really tall, narrow doors. And so I'm like, okay, I can finagle my way in here. And I open the first one, and the second one is locked. And so I'm just sticking my head in and I'm trying to get the attention of someone to help me. And I'm embarrassed and frantic and the place is so cool and hip, and everyone is so relaxed, and I have the energy that's through the roof.

And this woman comes over, and she's very calm and think like a kind person, and she's opens a second door for me, and I'm frantic and apologizing profusely. And her response to me was something like, "It's OK, it's OK. You're fine." In my mind, I was like, "I know I'm fine. This building is inaccessible." And there was no acknowledgment of that. There was no acknowledgment of like, I am so sorry we have these doors, but you couldn't get in this building, right? And so I think, a tiny moment, but an example of the system itself being inaccessible and then the people within that system and how they see that experience. And to me, just personally, both of those layers are really important. My experience would have been transformed or changed in that space had the response been different, had that response acknowledged what was happening as opposed to forgiving me for my entrance in their inaccessible venue. So yeah, it's layered.

Meghan Stromberg: It sounds exhausting.

Rebekah Taussig: Yeah. Yeah, I think that's a good word for it. Exhausting. Just the effort and the emotional weight of that, the social weight of that. And I do think that even now that often the effort doesn't feel worth it. And I do end up staying home more, for good or bad. I mean, I feel lucky that I can do that. And also —

Meghan Stromberg: But you shouldn't have to be lucky. That's the point. You shouldn't have to be lucky to do the things that you want to do, to go to the places that you want to go to. You should have the right to them, the same right to them as everybody else does. There's sort of a promise of that, like you said, in legislation, but …

Rebekah Taussig: … in practice …

Meghan Stromberg: … in practice, it's just not coming to fruition.

Rebekah Taussig: Well, and to me also, in terms of the layers of it, there is a certain hurdle to making a more accessible door, and that's not impossible, but that's one layer to it. But there's also describing it on your website, letting people know ahead of time what they can expect when they get to your space. And then there's also the layer of how you respond to people when they do arrive, right? There's so many ways to address that, and all of them are important, and some of them are a lot easier and more quickly attainable than others.

Meghan Stromberg: It sounds like some education would be helpful. I really like this precise example of trying to find a salon to go to and trying to figure out, can I get in? Can I do the thing that I need to do? What would a business owner or a planner —maybe they just need to learn that language, and they need to start looking for that experience and know how to explain it to someone and know how to make change if it needs to be changed, and think about it more.

Rebekah Taussig: Yeah, think about it more. And I think also, listen. I specifically could speak to the experience of a wheelchair user, but there are so many different forms of access and barriers for all different kinds of people. And so listening to lots of experiences of people like who are the actual people that you want to welcome into your space and how can you welcome them? And there are lots of ways to do that. And I think like marking it on your website is one of the easiest, quickest, most attainable ways to approach that.

Meghan Stromberg: We're in this moment right now where there's a lot of federal money coming towards planning and the built environment and some real opportunity there. And one of the ones I'm thinking about is the Infrastructure and Jobs Act, which is dedicating billions of dollars to increase transit access. How would you like to see that money spent?

Rebekah Taussig:  Yeah, what a great question. I mean, part of it is just getting up to speed with the regulations that are already in place, right? Isn't it amazing? I just think about, the ADA has been in place for almost 33 years, and then you think about public transportation. New York is infamously inaccessible. I think it's less than 25% of their subway stations are accessible right now. How does a person even use that public transportation at all, right, when most of the stations are inaccessible? And it's not just New York. I mean, I think that's lots of cities. Matching that bare minimum is the beginning part of that. But I think also in my ideal dream of what that could look like, I think it would be so smart to create these spaces that hold on to all of us. Bringing in consultants that embody all kinds of different disabilities to speak to the lived experience of public transportation. I think that that would lead to some of the best possible designs that we could have for all of us. I think that would be, oh my gosh, to live in that world, right?

Meghan Stromberg: Planning Magazine recently got the opportunity to talk with U.S. Secretary of Transportation Pete Buttigieg about accessibility, and he shared some of what he's learned from disability advocates and people that you're just talking about. And he talked about what we stand to lose on the personal level and a societal level when places aren't inclusive to everyone. Maybe we can end this wonderful conversation by thinking about that. What do we start to lose, what do we continue to lose, when we're not thinking in those terms and we're not being inclusive to everybody in our communities?

Rebekah Taussig: Yeah. Yeah. Well, I mean, again, I think there are layers to that. I think part of it is who is missing from the room? Who's not in that space? You think about people with disabilities having as much vibrancy to offer as any other swath of humanity, right? And so missing out on all of that humor and creativity and innovation and insight and perspective. And not that I feel like we need to have an argument for why disabled people should be included. It's not that it should be justified. But I do think that my particular experience with people who have disabilities, I happen to think of this group of people as exceptional, as exceptional human beings. Not that there is any like single characteristic of everyone who has a disability, but I do think there is this common thread of this experience of living in a world where you don't quite fit in one way or another, whether that be in social norms or actual physical spaces or however that is. And I think there is something potentially beautiful and rich that comes from that experience of being sort of like a misfit in the world.

There is just a tremendous amount of — what I have seen in people with disabilities that I know and love — this very unique resilience and humor and creativity and innovation. Just a brilliant group of people. So you're missing that, right, that presence in the world and in your communities. Kind of to go back to a theme that we've brought up a lot is the ways that all of our bodies eventually become disabled in one way or another if we live long enough and thinking about how we miss out on designs to hold all of us when we don't consider that from the beginning and from the front end. That like we build systems and worlds and communities that are like only catering to a few of the people there and then only temporarily. And so when you cut out disability from your planning, you create worlds that are temporarily sustainable, right? There's a lot there's layers to what you are missing when you aren't accessible or aren't thinking about accessibility from the front end.

Meghan Stromberg: Rebekah, thank you so much for sharing your perspective, your experience, your stories with us. It's really been a pleasure talking with you.

Rebekah Taussig: Thank you for having me. I love these questions. I could talk into the afternoon. Thank you.

Meghan Stromberg: Thank you. Thanks for listening to another episode of People Behind the Plans, an APA podcast. If you want to hear more great conversations with experts from across the planning landscape, subscribe to APA podcasts, so you'll never miss an episode. And if you like what you're hearing, rate us on iTunes. You can find people behind the plans on Spotify, Apple Podcasts, Stitcher, or wherever you get your podcasts. You can also find our entire library of episodes at planning.org/podcast.