April 20, 2023
"Growing up in this body, there were lots of stories written over me or about me as I moved through the world, especially as a child in a wheelchair," says Kansas City-based Rebekah Taussig, author of Sitting Pretty: The View From My Ordinary, Resilient, Disabled Body.
A long-time advocate and storyteller, she's turned to Instagram to rewrite those stories. With more than 60,000 followers, Taussig often uses @sitting_pretty to share her experiences navigating a built environment that was not created to support people with disabilities — despite the fact that one in four people will experience a disability in their lifetime.
"We've had the [Americans with Disabilities Act] for almost 33 years now, and there's still so much resistance from people or a lack of understanding about why these things are important," she says. "I think that what has become apparent is that legislation can only go so far without a deep cultural shift."
Ahead of her closing keynote speech at the 2023 National Planning Conference, Taussig joined Meghan Stromberg, APA's editor in chief, for a special episode of People Behind the Plans. Recording live from the conference, they discussed how storytelling and planning can drive that cultural shift to create communities for every body.
This interview has been edited for length and clarity, but you can listen to the whole conversation at planning.org/podcast or wherever you get your podcasts.
STROMBERG: Your book defines "ableism" as "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." You also talk about how that's a learned behavior in a lot of ways. How do we start to dismantle these attitudes and systems?
TAUSSIG: What a big question, and an important question. Think about the disability rights movement and the work that has been done to create inclusion — the hard fight that's 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 a deep cultural shift. We've had the ADA for almost 33 years now, and there's still so much resistance from people or a lack of understanding about why these things are important. I think that shift has to do with addressing the stories that we tell about disability. As someone who lives in a disabled body, I see stories about disability being this fringe, exceptional, totally separate human experience. It's rare. It's on the edges. And another narrative might be that including disability is an act of benevolence, like it's a great kindness to extend any amount of inclusion.
"We've had the [Americans with Disabilities Act] for almost 33 years now, and there's still so much resistance from people or a lack of understanding about why these things are important."
I want many stories — so many stories — that reflect the lived experience of disability. And I think that we are moving in that direction. In the past five or 10 years, there's been such a shift, especially in social media, where people are able to represent their own experiences and tell their own stories. The steps are very small, but I'm hopeful by what I see.
I think that when the actual cultural narrative 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, imagining an even more inclusive world that holds all of us in the bodies that we live in.
STROMBERG: What would you like planners to know about how you experience the world?
TAUSSIG: I think that part of my experience comes down to feeling like a disruption. Like there's this whole mechanism that's in place, and I arrive and then suddenly that whole system is thrown into chaos. "We didn't anticipate you, or we're going to have to scramble to figure out how to include you here." If I think about what I would want people to know about my experience in the world, well, it's kind of layered, because there's the disruption within the actual built world, but it's also the way that the people in that space respond to that disruption.
I've moved four times in my adulthood, and every single time, I have run into this feeling [that] there is no place for me to live in this city. I find places that are affordable but profoundly inaccessible, places that are accessible but way too expensive that I could never afford, or public housing that should be accessible and affordable but literally has waiting lists years long. Or there are places that are advertised as accessible, but the parking lot is on a giant hill or there's still stairs or you can't get into the bathroom.
I have felt like my city is actually just a playground bully, flipping me off. And I don't actually believe that anyone involved in planning it meant to do that, but the cumulative effect is this feeling of, "We do not think of you." So, it's also this feeling of invisibility. No one is anticipating me because they don't imagine that I'm there.
STROMBERG: What a powerful way to put it. When you are in these situations, how do people react when they see how impossible their spaces can be to navigate?
TAUSSIG: A few years ago, I was looking for a new hairdresser and did all the research that one does — trying to find someone that would be affordable, someone that had a style that I seemed to like based on their Instagram photos, whatever. But another layer was asking: can I get into that building? I spent hours on Google Images and Google Earth, looking at spaces and asking questions like, where would I park? And most websites, especially a few years ago, never mentioned accessibility. So I am like the sleuth, deducing all of that on my own. I found this place that looked like there was stairless entry and a place 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 there were these two giant, narrow doors. I open the first one, and the second one is locked. And so, I'm just sticking my head in and 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 this energy that's through the roof.
This woman comes over and 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." There was no acknowledgment from her, no "I am so sorry we have these doors that meant you couldn't get into this building."
"I have felt like my city is actually just a playground bully, flipping me off. And I don't actually believe that anyone involved in planning it meant to do that, but the cumulative effect is this feeling of, "We do not think of you."
That tiny moment is an example of the system itself being inaccessible, and how the people within that system see that experience. To me, 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.
STROMBERG: It sounds exhausting.
TAUSSIG: 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, often the effort doesn't feel worth it. And I do end up staying home more, for good or bad.
Also, listen: I specifically can 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, it's important to be listening to lots of experiences of the actual people that you want to welcome into your space. How can you welcome them? There are lots of ways to do that. Marking your accessibility on your website is one of the easiest, quickest, most attainable ways to approach that.
STROMBERG: A lot of federal money is being dedicated to improving the built environment, like the Infrastructure Investment and Jobs Act, which offers billions of dollars for public transit, including $1.75 billion to improve transit accessibility. How would you like to see that money spent?
TAUSSIG: Part of it is just getting up to speed with the regulations that are already in place, right? Isn't it amazing? Again, the ADA has been in place for almost 33 years. New York City is infamously inaccessible. I think about 25 percent of their subway stations are accessible right now. How does a person even use that public transportation at all when most of the stations are inaccessible? And it's not just New York. I think that's the case in lots of cities. Meeting that bare minimum is just the beginning.
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 their lived experience. I think that would lead to some of the best possible designs that we could have for all of us.