In part 1 of a special 2-episode series focused on the lived experiences of people with disabilities, Zack Hurtz, Micah Lusignan, Krystal Monteros, and Tanisha Sepulveda share their everyday mobility challenges and what they believe is needed for equitable access to mobility for all.
Cohen: Josh Cohen
Jensen: L’erin Jensen
Hurtz: Zack Hurtz
Sepulveda: Tanisha Sepulveda
Lusignan: Micah Lusignan
Monteros: Krystal Monteros
Hurtz: “I’m tired of people giving me sympathy, because sympathy doesn’t do a damn thing for me. It doesn’t help me educate people to get the tools I need to be successful, whereas with empathy I will take empathy all day.
Jensen: That’s Zack Hurtz. Zack lost his vision at two years old due to cancer of the eyes. This week, we’ll do just what Zack asked us to do: gain empathy from the experiences of those who live with a mobility impairment to gain their perspectives on how to move forward to help us achieve an equitable, accessible, and verdant mobility future. Let’s go.
F: The freedom of movement to access jobs, education, and social activities is a fundamental human right, but that freedom is not distributed equitably, undermining our ability to create vibrant and sustainable communities for all. Welcome to The Movement where we talk with the leaders who are reshaping their communities with brave decisions, inspired advocacy, and a stubborn unwillingness to accept the status quo all in an effort to inspire the next generation of leaders. Here are your hosts Josh Cohen and L’erin Jensen.
Cohen: Too often, when we try to improve access to mobility, we do it from a position far removed from those who are facing the mobility challenges. But if we learned anything in the leadership framework we published last year, Leadership Upside Down, it’s that in order to solve mobility challenges, we need to start with those who are experiencing those mobility challenges.
Jensen: So, this week, we’re centering the perspectives of four individuals who experience those mobility challenges everyday: Zack Hurtz, Micah Lusignan, Krystal Monteros, and Tanisha Sepulveda. Next week, in part two of our special look into mobility access for people with disabilities, we’ll talk with Anna Zivarts, Director of the Disability Mobility Initiative Program at Disability Rights Washington. Anna introduced us to our guests today so that we could put a spotlight on these lived experiences and make positive change not only for those with a mobility impairment, but for everyone.
Sepulveda: If you can solve the issues for the minority or for the smallest kind of group, it usually covers the issues for the majority because that tends to be less, you know. The greatest issues are going to be with the minorities, so if we can just cover those, like having ramps instead of stairs, people walking, people with bicycles, people with strollers, anyone can use that, but so can I and so can someone with a wheelchair or, like, a physical impairment.
Cohen: Meet Tanisha Sepulveda, a Seattle resident who has lived with a disability for the last 10 years and uses a wheelchair to move around. For those of us who haven’t used a wheelchair, we may not appreciate some of the seemingly simple things that can be infinitely more complicated if you have a mobility impairment.
Sepulveda: Even just placement of door switches and things like that, trashcans will be put in front of those, and if they’re big enough I can’t even reach it. It’s just the lack of thought that goes into some of the design that you would think, “Oh, there’s regulations or, yeah, because of ADA,” but with certain buildings being so old they’re able to get past some of those things sometimes. But even when it is designed, you would think, to be accessible, it’s not actually accessible, and it’s limiting. And it’s interesting, even the placement of buttons on the elevator or how hard something might be to push or how heavy a door might be. I’ve gotten locked in the Seattle downtown courtroom bathroom before because the door was too heavy for me to push open. And so I had to end up calling the building and letting them know I was trapped in there because nobody would hear me otherwise, so.
Cohen: Oh, my gosh.
Sepulveda: Yeah, just—I mean, and you would think it was an accessible door, but because of the weight of the door it wasn’t accessible. And, yeah, even me with a mobility issue or someone who is, like, you know, just elderly, like, that could be difficult because of lack of strength.
Jensen: For someone with a vision impairment like Micah Lusignan, a disability advocate in Seattle who plans on becoming a high school English teacher, something as simple as a trip to visit friends can get quite complicated.
Lusignan: What do you do when your phone dies and you’re using your GPS? You look at the street signs. Well, for me being legally blind, I can’t look at the street signs. So it becomes this issue where, I remember there’s one time—I mean, I could count multiple. There’s one time in specific that was really intimidating because I was carrying food to go over to a friend’s house. And I had got off the bus, and I was following the GPS. I just had my headphones in, was following the GPS’s walking direction, Google Maps. And then it didn’t tell me to do anything. And I kept walking and walking in this residential area at night off of Pac Highway, Pacific Highway.
And I kept walking down this residential street off of that highway, and I ran into a dead-end. And I was just like, “Oh, how did this happen?” Look at my phone and my phone is dead. And what do you do when it’s nighttime, you can’t see the streets, you’re in an unfamiliar area, and you’re just trying to figure out, like, “Where do I even go?” So that puts me at a disadvantage where I’m like, “Well, shoot.” So, yeah, I had to go knock on people’s houses, like, random people’s houses. And you would think, like, “Wait, are you serious? You did that?” Yeah, I had dogs barking at me and chasing me too. [LAUGHS] And a whole story within that, because I had to access my phone to get the address of the friend’s house that I was trying to get to.
And I was just trying to ask people, “I just need an iPhone charger.” And I remember at the time I had an older iPhone and people had just started switching to the new ones, and that was such a barrier. And then I ended up logging into my email—well, having someone else do it, because I couldn’t see their phone. And they logged into my email so I could get the address so that I could actually, like, find my way to that place, and they helped me get there. And then once I was there at my friend’s house I was able to charge my phone, but it was fortunate that I had someone really nice—right—instead of someone who potentially not so nice or even, you know, the dogs that chased me for a bit. Like, I’m fortunate, like, nothing bad happened there.
Cohen: Krystal Monteros, who like Tanisha uses a wheelchair to move around her town of Tacoma where she is the president of the Tacoma Area Commission on Disabilities, finds that a trip to the pharmacy can be harrowing for the simple reason that it seems like the group that handles transit doesn’t talk with the folks that handle the sidewalks and curb cuts.
Monteros: There’s one example I think of, to get to the pharmacy if I go to the pharmacy out here. It’s actually in the higher, like, more wealthy community, I’m going to say. But I get off the bus right there, and technically there are sidewalks and all that stuff, but for some reason the way that the bus, like, lets me off, like, with the ramp and everything, this one bus stop, it’s so annoying because, like, I get off, like, the ramp and as soon as I get off the ramp it’s like it immediately goes into a hill and it goes into a hill of grass though. You know?
And it’s the most awkward thing. Like, the bus driver always has to help me in that little area because my front wheels always nudge into there when I’m getting off of the—[LAUGHS]—the thing. And I always sit there and complain. Like, and even the bus drivers always tell me, like, “Why don’t you call?” It’s like, “I have called.” I told them that, like, I mean, all they need to do was level it out, like—[LAUGHS]—and I’d be able to do it independently.
Jensen: Zack, who I introduced to you at the top of the show, uses a white cane to help him move around as safely as possible. While crossing the street—even at a crosswalk—can be potentially dangerous for everyone, it’s particularly treacherous for Zack and others with vision impairments.
Hurtz: Crosswalks have a couple things that help us. An audio pedestrian signal helps us understand when to cross, otherwise we have to sit there for four or five light cycles to understand the traffic pattern. And unfortunately with today’s cars getting quieter and quieter it’s harder to hear those traffic patterns. And you’re also expecting the blind person to have exceptionally good hearing to understand the traffic patterns. There are visually impaired people, blind people out there that don’t have the best hearing because they have other disabilities that impede or impact that understanding of the audio patterns. So having an audio pedestrian signal allows them to get told when to cross without having to focus so much on the traffic. And if that isn’t available they are putting themselves at a greater risk than most people would be at.
Crosswalks are useful and helpful, for sure, but if you just rely on a crosswalk, you’re spending a little bit of your time trying to navigate that, that obstacle, and it impacts your ability to be on time for appointments or meetings. It can put you in a dangerous situation that you may not want to be in, and it can cause anxiety. There’s a lot of people who don’t feel safe walking around a city, and so they either have to spend lots of money to use a taxi, or they have to rely on public transit that may not be provided successfully for them.
Cohen: You mentioned roundabouts earlier. Is there something in particular about roundabouts that make that harder just because there aren’t the crosswalks?
Hurtz: Yeah, there’s—I’m only going off of the roundabouts over in Olympia.
Cohen: Sure, sure.
Hurtz: So I’m sure there’s different ones out there, but as far as my understanding goes, there isn’t a real safe way to navigate those. Some have sidewalks, and some don’t. And it’s hard to understand; if you walk up on a roundabout, you may not know how to get from point A to point B as far as what street you’re on. Whereas with, like, an intersection or a crosswalk, you know exactly where you’re at. And the ones I’ve experienced, there’s no tool to let you know when to cross a street near a roundabout successfully, like, with an audio pedestrian signal or even just a regular traffic light. You have cars coming in, you have cars going out, and it’s up to you to determine when it’s safe to cross.
Cohen: This example from Zack highlighted something that L’erin and I didn’t understand and illustrates the value of empathy with those with different lived experiences than ours. I’ve mostly used roundabouts from the perspective of a driver, and I love the free flow of traffic and the potential to reduce car crashes. But depending on the sidewalk and curb-cut infrastructure, that free flow of traffic can actually be quite dangerous for someone like Zack with a vision impairment. Zack’s challenge with roundabouts echoes a challenge that Tanisha also noted in our conversation about whose experiences we are considering when building infrastructure.
Sepulveda: I do feel like accessibility in those forms do get, like, the breadcrumbs, you know, when once all the bread is off being served, it’s like, “All right. We have some crumbs left over. What can we do with this? How can we make stuff more accessible?” But really it should be at the forefront because the disabled community, for one, is the only minority community that anyone can join at any given time. Like, anyone can become a part of that without knowing it. So to put that as the last part when it comes to designing things or building things, it doesn’t make sense. You know, everybody is going to age. You never know if something happens. You know, you don’t know how your kid might be born. Like, so why not design a community that can be, you know, useful for everyone?
Jensen: Street crossings without safe signals to do so, doors too heavy for elderly persons or persons who use mobility devices, or unpaved bus stops where your wheelchair gets stuck are not useful for everyone. For Zack and other people with disabilities, these indignities have real cost.
Hurtz: With a white cane you have to study the bus stops to know which busses are coming and those—the signs are not accessible. They are in print, so you walk up to a bus stop, you either have to have a bus schedule memorized or on your phone that you can read with your screen reader, or you have to call ahead of time. And there’s a lot of planning that goes into traveling with public transit, whereas a—I don’t want to say normal—whereas a sighted person can walk around, look at a bus schedule, and figure out what they need to do to get to where they need to go.
And if you are a blind traveler and you get off at the wrong stop or you get in an unfamiliar location, you have very little tools at your discretion to figure out how to get back to where you need to be if you are just relying on signs or public transit. And, like I said, you have to spend time ahead of time to have all that stuff put in order so that you can figure out the route. That takes a person who is determined, and if you are someone who has anxiety or is unsure of your skills, or let’s say you’re newly blind or visually impaired, you may not have those tools or the knowhow how to accessibly get around your own community. And that can be a huge problem, and it only furthers isolation and depression.
Cohen: More than these physical infrastructure limitations, there are also more sinister assumptions that can impact those with a disability. Here’s Micah again.
Lusignan: I work with high school students with visual impairments with the Department of Services for the Blind. I’m actually one of the leads there for our social skills program. And every year—it never ceases to shock me—we always have kids. And I’ll share one specific story—right—where this mom, she’s a caterer; she’s a chef; she does everything, self-made woman, like, phenomenal, phenomenal inspiring mom. Love her. But when her daughter first came to our program we asked her, “Oh, so does she do the dishes?” And the mom’s response, “Oh, heavens no. How could she clean a sharp knife? She’s blind. She’ll cut herself.”
There’s automatically an assumption that a disability means that you can’t, and because you can’t do one specific thing—mind you, blind people can wash sharp knives. I do it all the time. I cook. I love to cook. Many friends say I’m a better cook than them. Right? Like—[LAUGHS] Right? That’s just fact. But that’s the level of stigma that has children, people with disabilities, human, like specifying that, like, children with disabilities are taught, “You can’t because you have a disability.” And so the focus is on what they can’t do instead of on what they can do.
I will never be an Uber driver, but I’m graduating from the University of Washington with a 3.92 GPA with an English degree and my English language arts endorsements to do teaching. Right? I work with students. I love it. And it’s something where even for me I’ve walked into job places and got the awkward stumble where they don’t want to directly say, “Ooh, well, you’re blind, so I don’t know if you can do this.” And they—and I welcome the questions, but where literally I’ve had this from multiple employers. They see my resume; oh, they love it.
Lusignan: They meet me the person; they love it. They see the white cane? “Oh, um, uh, I don’t—mmm—are you—so how—how would you do this?” And I explain it.
Lusignan: And I explain it, but it’s almost like it’s secondhand.
Jensen: The fact that Micah, Zack, and others have to endure discrimination, isolation, and depression is unacceptable. So what do we do about it? In the spirit of what we learned in Leadership Upside Down, we asked those experiencing the challenges to give us their ideas. Unsurprisingly, what many of the folks we talked to advocated was getting their voices heard. Here’s Tanisha again.
Sepulveda: I would definitely have a consultant, you know, have consulting groups. I mean, even in Seattle there is a universal design consultant, essentially Karen Braitmayer. That’s just one that I know of, but I’m sure that there is more. And even outside of that it’s, you know, not hard to find people to be consulted in any type of, you know, minority group to make sure that their voices are heard. And going from there, probably just building off of, you know, the needs of the people, actually see what needs to be met with the minorities versus just making sure the majority is good and, yeah, that we don’t get a lawsuit at the end. You know?
Cohen: Zack shared a similar sentiment.
Hurtz: One thing that I would do, a lot of things I would do would be to allow people that have different challenges to speak up, to be part of that planning. I would create a panel or a committee or even multiples of those to allow for each part of the city, so public transit all the way down to things like waste management, because there’s people who can’t take their trashcans out, who can’t have the equal access to own a home. So having all these people on different panels and get the voices out there allows for a better city plan.
I would put more people in the planning process and not just having people speak up, but I would actually invite them to be part of the city government or whatever structure it takes. I would also bring in experts who have studied this. I would look at scientific data, research that’s out there. There’s not a lot, but there is some out there that would help create a more equitable, equal society, city, town, whatever we’re going for. One of the biggest things I hear with, like, a city plan that isn’t accessible is, “Oh, well, we can’t do it because it’s going to cost us so much money to do this. It costs X amount of money to put this signal in, and there’s not enough people with disabilities in this area to justify that.” Well, I’m sorry, but if there’s one person in that area that needs this service, you are obligated to do that. You are obligated to give them the best chance for being a community member, because if you don’t you’re saying, “Well, you’re not important. You don’t have the ability to be a part of our community, so we’re going to go ahead and remove your access and deny the things that you need to be a successful member of our town.”
Cohen: For Krystal, the answer is even more nuanced: not only getting input from the community, but going to the community.
Monteros: I think it’s very important to, one, listen to the people in the community. I do know, like, they have, like, the forums available and stuff and, like, you know, those events that you can go and put your viewpoint out there and stuff. A lot of times, being real, like, especially in my community a lot of times people, they don’t even know those things exist. You know, they don’t know they’re going on just because they’re in their own little world. So I personally think it’d be more beneficial for the people that are in, like, that are working in transportation to go to the residents, maybe like to go out into the communities and try to find people rather than expecting the residents and the people in the community to go to them.
Like, in my area, when I first moved here to the location that I’m at now there was actually three bus routes going around here, like, within walking distance. In the last, like, five years they’ve taken away two. And there were people that were going to those—I think they’re called forums. But they were going to those to, like, kind of advocate and all that stuff, but they still took them away. You know? Like, in my opinion, if the people were to come here they would have heard people’s voices, because everybody was talking about it. You know? They would have heard people’s voices, and they would have heard the anger, and they would have heard the—[LAUGHS] You know? But I think that’s very important.
Jensen: Let’s build on that theme, on the voices and the anger. Those feelings are real. Like transit, people have similar feelings about housing and land use. For Micah, this outcome is a result of what happens when we don’t prioritize making it easy to live and work in dense, urban areas where you can more efficiently provide transit, social services, and infrastructure.
Lusignan: First and foremost, it’s like affordability of property. Like, I think that’s so huge. Again, like, bringing up that statistic, that 70% of people with disabilities are unemployed. And, for me, I live in the City of Seattle. Like, I am right down the street from downtown. I pay a little over a thousand dollars a month in rent for a room. Right? I can do that because I have a level of privilege of working and doing school and getting scholarships. Right? Like, I have a certain level of privilege in that sense. But if you’re on SSI disability income, which is $783 a month, you can’t even afford rent.
And a thousand dollars is normal. Some people are like, “Wow, that’s a deal, Micah. Really? You’re in a house for that much?” And it’s so rare to even be in a house. So I think affordability is first and foremost, because what happens is that—especially when we talk about people with disabilities—you get people moving farther and farther out of the city where there’s the largest amount of mass transit and public transportation and even social services for people with disabilities.
So it’s making an affordable space or even sectioning off certain spaces, which I don’t—I’m not a fan of that, because I feel like that’s really segregating where it’s like, “This is where the people with disabilities are going to be.” It’s like, “Eh?” I don’t know. That makes me feel a little weird. Like, why aren’t we just making this accessible to everyone, because it doesn’t just benefit people with disabilities? How many families—for the house that I live in, it’s four grand a month, and it’s a four-bedroom, two-bath house. It’s, like, how many people can actually afford that, how many families? Like, close to none, unless you want to spend your whole paycheck on your house that you’re just renting.
So it’s really addressing those issues of gentrification that push people farther and farther into the outskirts to where they actually find a place that they can afford, but then how far are they from the bus stops? Are they out of the range of the paratransit service that will come pick them up at their door and take them to a place? Are they out of service area for the grocery store or Amazon that will deliver groceries to their door? So it’s almost this sacrifice that people have to make of live in a place that’s accessible for me and kind of live the poverty style where I live in the university district close to the University of Washington.
And I walk to my grocery store; I’ll walk to my barber. I walk everywhere. Anything I can’t walk to, I catch the bus to or I catch, like, a quick five-, 10-dollar Uber to if it’s late at night. Right? So, yeah, I think that’s, like, the biggest thing to consider, first and foremost, is affordability. Like, how are we building our cities? Are we building them to be welcoming or are we building them to push people out?
Cohen: I hope you enjoyed this special episode of The Movement podcast. Join us next week for part two, where we talk with disability advocate Anna Zivarts about how we can translate these lived experiences from Micah, Tanisha, Zack, and Krystal into equitable mobility for all.
F: Thanks for listening. If you like what you hear, head to Apple Podcasts and subscribe, rate, and review this podcast. You can find out more at TransLoc.com or follow Josh Cohen on Twitter at @CohenJP. Be sure to join us next week for another episode of The Movement.