Episode Transcript

Transcript edited by Miri Newman

 

Episode Intro Disclaimer

Kylo: You’re listening to Let’s Talk! Let’s Talk! is a digital space for students at 抖阴福利导航 experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers, and do not necessarily reflect the opinions or positions of 抖阴福利导航, 抖阴福利导航 Foundation, or our community partners. We broadcast on our home website, , on Spotify, on听, and .

Interview

Asher: Hello, everybody! Welcome back to another episode on the Let’s Talk! Podcast Collective. My name is Asher, and I’m here with a very special guest today! Could you introduce yourself, say your name, your pronouns, a little bit about yourself?

Caleb: Oh, Asher, it’s such a pleasure to be here! My name’s Caleb Dardick, pronouns he/him. And, I think just I’m really pleased to have this opportunity to speak with you today about my book and about growing up in the disability rights community and independent living community. But, I do wanna be clear that I am non-disabled. I’m the child of disabled parents. My father had childhood polio, so he’s paraplegic from that. He’s actually passed away in 2011. My mother is still alive, and I grew up with her having an undiagnosed bipolar condition throughout my entire childhood. So, it wasn’t until she got diagnosed in her late 40s, and I would’ve been in my late 20s, that we knew that. So, that was something that was part of our life, but we didn’t have words for this鈥� I would say鈥� invisible or hidden disability. I have that personal experience. I’ve also worked very closely with disability rights organizations over 15 years in Berkeley, California. But, I’m not speaking for disabled people. I can only speak to what I witnessed, what my family taught me, and how my own understanding has sort of evolved over time.

Asher: Yeah, of course. I feel like experiences are the biggest thing when it comes to being knowledgeable and knowing a little bit more, at least about disabilities, in general, too. What’s the journey that led you to writing ““? It’s such a great book and I’ve had the chance to read it. But, I wanna hear a little bit about what led you to write this memoir.

Caleb: Yeah, I’m thrilled. I’m thrilled that you enjoyed it, and it’s coming out September 21st of this year. It’s been a book in the making鈥� I would say鈥� my whole life. But, I always thought it would be my parents’ book. Maybe just give you a little chronology here. I was born in St. Louis, Missouri in 1965, and the basic story of “The Adventures of Superfreak” is that my parents dropped out of mainstream suburban life in St. Louis and took their three kids on this open-ended VW van bus tour leaving Europe and going overland to India. A trip that could be done in maybe 10 days, direct route is about 4,000 miles, we spent almost three years on the road, about 20,000 miles in the van, spent a year in India, and that’s sort of the journey that’s covered in this book. That route from Europe to India, there were very few families, but there were tens of thousands of young people who made that trip and over time it became known as The Hippie Trail. The Hippie Trail, that particular route, really effectively closed in the late ’70s with the Iranian Revolution and just the sort of wars and instability that have plagued that region ever since, even to this current day. But, at that time, 1970 to ’73, when we were on the road, it was very exciting, very dynamic, very much a western caravan. People were seeking; the joke that my parents used to say is that it was a search for “hashish” or “nirvana”, whatever came first. I think there really was that sense of both pilgrimage, spiritual pilgrimage, inspired by The Beatles and Allen Ginsberg, but also just the adventure of it, and we were certainly part of it. I think people reacted when they heard our story, especially when we returned, and said, “You gotta write a book” to my parents. In part, because they were responding to my father being disabled, that he did all of this using a wheelchair, and my parents had three little kids. I was the oldest at five, my little sister was 18 months, in diapers. So, the idea of a family with little kids, a father who’s a paraplegic, really captured people’s imagination. My parents did try to write the book, but it was a little too heavy for them. It was a little too close, and they didn’t pursue it. Somewhere about 18, 20 years ago, I started writing stories of my own just for fun, just as a creative outlet. I had these memories that were really strong for me from just my own memories. I would write them down, and they would be like these two to three-page stream of memories, stream of consciousness vignettes. I called them “jazzy”. But, I just kept doing it, and then my wife and I joined with another couple to do memoir writing together, and I would share these stories. The three women in our group would say, “Oh, that’s such a fun story, but how did it make you feel?”. Then I’m being pushed to sort of like find that emotional connection to the story, which I ultimately did, and at some point it was like, “Okay, if I’m gonna do this, let’s turn it into a book.” And, that’s been fine, but I’ve also been fully employed and trying to find weekends to do this project. So, professionally, I’ve worked for the University of California and the City of Berkeley, so I’ve been involved in local politics and government. I’ve been community relations consultant. I worked for 15 years as the project manager for the, which was, is, is a one-stop service center for people with disabilities in Berkeley, California. That’s named in honor of Ed, who on a personal level is a family friend, so that was, you know, made it even more special. He was a family friend. And we could talk more about the Ed Roberts Campus. That definitely shaped my perspective. I went to UC Santa Cruz in the ’80s. What else should I tell you about my background leading up to this? It’s been a great journey. It’s was 鈥� it’s a fun adventure to tell. It’s a hard story to tell because of some of the challenges. My parents were actually married for almost 50 years, but this period is actually the four hardest years of their marriage. So that was kind of challenging for me to feel comfortable talking about their marriage and sharing their story. But they knew I was doing this and encouraged me, gave me their journals and letters. And my mom is actually reading the book right now and loving it, so I feel okay. But it is, it is a lot. It’s been a great project, and I’m just so proud that it’s done and that other people like yourself are finally getting a chance to read it.

Asher: Yeah, no, it’s such a unique memoir. Reading through it, it also felt like a dream in and of itself, too. It didn’t feel like it happened, but then at the end, it’s sort of like seeing the pictures and like, oh, that actually happened, kind of thing. Yeah. Uh, what inspired you? I wanna know. Was there a moment where like, “Oh, I should make this into a book” kind of thing? And you talked a little bit briefly about it, sharing these different stories as an outlet to your group of friends. But when did you actually like be like, “Oh, yeah, I should turn this into a book” kind of thing?

Caleb: I think, you know, just technically when I had, like, 20 stories, and all of a sudden it was like they were all independently written, but it was like, this is enough content to start having a book. And the other women in my group were writing memoirs and, and so we started talking about, well, what would it be like as a book? And then it was like, well, what is it? That question, how does it make you feel, also leads to the question is, well, what is it really about? Because plenty of adults, you know, who were adults then in the ’70s, have written memoirs about the hippie trail. In fact, most famously, Rick Steves, the travel guy, was really famous for travel books, has written his own memoir when he was 23. But as far as I can tell, there are no memoirs from the hippie trail from the kid’s perspective. What’s it like to be the kid in the backseat? And to really look at, you know, what’s it like to grow up in the counterculture, not to choose it, right? My parents dropped out from one way of life and chose an open-ended, new way of life. But as the kid, you’re along for the ride. And the counterculture, I mean, it’s gonna be 60 years next year anniversary of the Summer of Love. There’s gonna be some nostalgia for the ’60s, but I don’t want it to be a nostalgic book. I want it to be, what was it like? What is the counterculture like as a sort of lived family reality, right? And as for me, with all that wonder, but also the instability, with all that longing and danger, but also the excitement and the fun. So contradiction, right, is sort of inherent in talking about this story. And then the other piece which, because disability in my family was ordinary, it was matter of fact, my father was disabled. People would ask me, “When did your father get disabled?” Thinking that it happened in the course of parenting me, but he was disabled at age 13. So I only knew him, you know, as a person with a disability and used a wheelchair and leg braces and crutches. It took me a while to sort of go, “This is actually a disability story.” And then trying to explain my mother’s behavior in the book. Sometimes there’s some pretty heavy things that she does. And I know as an adult now that she’s bipolar. But how do I tell that story in the book? How do I really talk about growing up with disabled parents with a visible disability that everyone thinks they understand and can see, and then the invisible one for which there’s behavior, dramatic mood swings and behavior that seems inexplicable? Why would, why would someone’s mother do that? And with a diagnosis, of course, in hindsight, one can understand it and, and feel empathy. At the time, there’s just a sense of confusion. And then there’s also, in some ways, this book is a prequel. My parents end up in the early ’80s becoming really committed disability rights activists, and eventually they co-found an ILC, which is an independent living center in Northern California, which still is in operation 40 years later. And so growing up in the disability community is something that this sort of hints at or it, or at the very least leads to, and will be the subject of my, my sequel memoir, which I’m excited about.

Asher: Ooh, a little sneak peek. I’m excited about that. I look forward to maybe getting it and reading it one day,

Caleb: I w- I’m happy to share it with you

Asher: Aw, thank you. Um, yeah, looking back, was there a particular moment when you realized your childhood experience have shaped the person you’ve become? And while you had revisited deeply personal memories as you wrote the memoir, what was the process like for you, and did anything surprise you as reflected on your childhood?听

Caleb: I think one of the surprises for me is that Ironic. I think given听 non-disabled peoples’ sometimes view of, disability, I think some of them would be surprised to know that my siblings and I viewed my father as the rock of our family. And so I really came to put my father, as a child, on a pedestal as sort of that there was nothing he couldn’t do. And I think that in the writing of the book and really dealing with the disability and reading his journals, which he shared with me, I came to see that he was young and searching too. That there were times that he felt humiliated as a disabled person if he, you know, had to accept a piggyback ride or if he, you know, was in this really cool place but he couldn’t get around and he felt trapped, like feeling bad about feeling trapped. And that it, that he had to sort of deal with that on the road and realize, no, that isn’t how he had never accepted piggyback rides before. He didn’t put himself in situations where he was stuck. And so he had to kind of summon up that reserve to like remind himself of who he was and get himself out of those positions and say, “No, I’m, this is still a hard enough adventure. I’m not gonna make it even harder and put myself in a position where I need a piggyback ride. I’m going to have more self-control or self-possession there.” So the idea that he was learning, that he was struggling, that he felt pain, and then sharing that and trying to articulate that, that was definitely a powerful moment for me in writing the book. I think the other big thing that really stuck out for me reading his journals and knowing our story was this search for community, right? They, my parents, had rejected a lifestyle that they knew, and that was a very comfortable middle-class life. My father was a professor. He had his own business. And, you know, my mom was, uh, raised to be a homemaker and wanted to have a dozen kids and live a nice life, you know, as Americans viewed it. But then they gave it up. But then what we found is that just living on the road, we did better with other people. There was this looking for community. It maybe wasn’t fully articulated at first, but one of the first people we met on the road in Spain was a Roma family, a Romani family. And they showed us like how to travel. And, and so there was this reciprocity between the two families that was really beautiful. And then when we moved to the Canary Islands, and spent the winter there of 1970-71, we fell in with a big group of hippies who were escaping the cold of Europe to be on the beach and make leather goods that they would then sell. And that seemed like fun because we were all together and it was a nonstop party. But ultimately, the young people who were on the road, the young hippies are under 30, they don’t have kids, they’re partying all the time, and that’s not necessarily a great fit for a family. So that wasn’t the community fit that we needed. When we moved to India and my father taught architecture, in Ahmedabad, India, he made really good friends with an, a colleague who taught in the art school, who invited us to live with him in his extended family compound, where there were 25 family members, 25 artisans who were there during the day, and it was, you know, “We have room for you, Sam,” is what, you know, the, the Professor Piraji Sagara who’s actually a very famous artist in India, said. And that was fantastic living there, but you know, it was also, it’s not our home. You know, it was鈥� that wasn’t a place we were gonna stay in- indefinitely. We ended up going to an ashram after that, and then, uh, we were in the ashram for a while, and then an ashram life was very appealing because it was really healthy. It had a lot of discipline. It was this sort of spiritual practice that was very grounding for our family. But also ashram life, too, has its limitations. But one of the cool things that happened at that ashram is we met two men that became close friends, who said, you know, “If you’re ever in California,” and whenever you’re traveling, right, you always make friends, and they go, “If you’re ever in wherever, come see me.” Um, we actually did, and they were living at this spiritual retreat in Northern California called Ananda Village, which still exists And it sounded perfect. People were farming, building their own homes, creating their own spiritual education, and just having this sort of wonderful agrarian spiritual practice. And so we visited in late ’73 when we came back from India, and were quite enamored with it. We didn’t join the community, but we bought 50 acres adjacent. It was raw land, and so that became sort of part of this back to the land movement, which was happening in the, in the ’70s and ’80s. And my parents, who had never gardened anything and had, you know, never had an animal more than a domestic dog, all of a sudden had 50 raw acres, a four-acre pond, we’re raising animals, we’re putting in orchards and gardens. My dad’s doing it all from a wheelchair, and, uh, my mom’s freelance writing, and she’s writing stories about Sam the sit-down farmer. And we’re having this new adventure surrounded by hundreds of families who are doing the exact same thing, and that’s where I think we really landed, not in the auspices of someone else’s home or someone else’s ashram, but on our own land, but surrounded by community doing the same thing. And then I think the next level is when we became involved in the disability rights movement, finding a community there as well, first through disability sports. My father was a tennis player and wheelchair basketball player, and he would, you know, basically recruit anyone he saw in a wheelchair to play sports with him and created a league. And that was very good for the family, and especially my mother, because We were meeting all these disabled athletes who had girlfriends and wives and kids, and my mom didn’t feel as alone. And us kids also would meet other kids who had disabled dads, and so it became, um, another level of community for us. That was really special

Asher: Yeah, that is very special. I think it’s so important that no matter what, even if you don’t have a disability or if you have a disability, to find that right community, to surround yourself with like-minded people. I feel like that’s super, super important. And yeah, and your memoir definitely touches on that in several different facets of the journey kind of thing, and I love that. While your memoir explores your own life, it also invites readers to think about how people experience the world differently, I feel like. Um, has writing the book changed the way you think about disability, accessibility, or inclusion at all?

Caleb: You know, I think writing the book, like I said, at first I didn’t know what to say about it because it was just so obvious. It’s like describing air, you know? How do you write about breathing? But it, you know, the discipline of writing, I, I really have come to find that writing is a craft. In writing about my childhood, what had been ordinary to me I realized was not. Disability was not a side issue. It actually shaped how we traveled, how we solved problems, how we depended upon one another. My mom really liked the term interdependence, and I think there’s a lot to that. I like that, I like that idea as well. I don’t know if it’s still used as much, but it feels very inclusive to me, at least in the family unit. Writing this book, I had to really think about how to talk about physical disability and the bipolar disorder as distinct experiences that affected the family differently. And the difference, I think, especially with the hidden disability and also it being undiagnosed, is that with my mom, I had to navigate these extreme mood swings, and I write about this, right? Where I’m her biggest fan. She’s so exciting. She’s just larger than life and so engaged, and then she’s pushing us away and in bed, right? Depressed. And I would turn to my father, ’cause I sometimes would just feel so… It was so abrupt sometimes, the transition, for me as a kid, I didn’t know what to do. It hurt me. I mean, I, my feelings were hurt, right? And my dad would just say, “Oh, that’s just how she is,” you know, “That’s just your mom.” And I would find that really dissatisfying. So having the diagnosis in retrospect in the writing process, it played, hindsight allowed me to in some ways have more empathy, but also to get in touch with, well, how did I feel as a little kid? It sucked at times, and I totally idolized her because she was this colossus. When she was on, she was completely unafraid. She’d talk to anybody. She would just plunge into things, and that was exciting to be around. Of course, having her stuck in bed for days and not, you know, “Leave me alone,” wasn’t, wa- was the flip side of that, right? I think the other thing that I started having was really div- diving deep into my memories and feelings about my dad. Again, I sort of thought of him, if you asked me, as someone who could do anything. But even at six years old, I was starting to go off on adventures with other people to places that he wasn’t going to, and I came to understand, like, he wasn’t gonna go there. It wasn’t accessible to him. I didn’t have that vocabulary, but I had this pang, this longing, to share it with him. So I would describe it to him, and even into my, like, teens and 20s, whenever I traveled or went to some cool place in some rugged river canyon, I would think, “How could we get Dad there?” Like, “Can we bring him down in a boat? Can we … ” You know. And what I came to realize is that he was having his own life. He was having his own adventures, and he was happy for me to have mine. That was my trip, not his. But I definitely had that sense as a kid, like, “Oh, I wish Dad was here, too.”

Asher: Yeah. No, that’s really cool. How do you now define accessibility? Um, and you talked about it a little bit. What does accessibility mean to you, um, with your dad, for example? Of like trying to take him to these different places, or trying to show him about like, “Oh yeah, this is the Grand Canyon that I went to with all these rugged rocks that is not accessible at all,” kind of thing. But yeah, what does … How do you define it at this point in life after experiencing all these things?

Caleb: I think it’s, it’s such a rich question. You know, Asher, I think we could, we could talk all, all day about it, and certainly from my perspective as a non-disabled person, you know, is limited. I mean, there’s attitudes, and then there’s really … Maybe we should just focus for a minute on, like, the physical dimension, like the built environment, ’cause that’s something that is poignant for me in some ways, and then also professionally with the Ed Roberts Campus really got exposed to thinking about the built env vironment. So in a word or in two words, everything needs to be universally designed. Like, everything new, we need to be innovative, we need to be creative, we need to be taking in what are all the disabilities, using sound, using texture, to allow people to navigate freely, especially in public buildings, right? And we’re so far past barrier awareness. I mean, unfortunately, education is just we must always do, but at some point it’s like, okay, education with a purpose. Education needs to lead to barrier removal, right? Barrier awareness leads to barrier removal. That’s fine for existing architecture. How do we deal with everything that’s new? So let me talk a little bit about Ed Roberts, I think your listeners probably know who he was. You know, he was really a pioneer in the independent living movement. He was the first severely disabled student at UC Berkeley, and he’s credited with helping found the first independent living centers in Berkeley, and later the World Institute on Disability. He was a MacArthur genius. He was a California state director of rehab. Very cool guy. Traveled in an iron lung. My parents met him in a really funny way. I think I mentioned my mother was a freelance writer, and we have a mutual friend who met Ed at a conference and told my mom and dad, “You need to meet him.” My mom was like, “Oh, it sounds like a great story,” and reached out to him, and my dad accompanied her to these interviews with him, and she did a story for him about him in the early ’80s. But as they got to know each other and became friends, you know, one of the first things my dad said to him was, “Well, we don’t have an independent living center in Northern California. You should come start one up there.” And he was like, “Oh yeah, you need one, but you’re gonna do it.” So that sort of inspiration, right, activism, like, “No, you’re gonna do it.” But he also was very straight up with my father. My father was very athletic, and, some of what my father did, in Ed’s view, and later my father shared this view, was counterproductive to the movement. So for example, if my father came across an obstacle in a sidewalk, he would just jump the curb and wheel in traffic. Or if there was no curb cut, he would just pop a wheelie and bounce off the curb, right? So he just, he was mainstreamed, right? This idea of mainstreaming when my father had polio in the ’40s was, you know, you put on leg braces. You figure it out. Uh, you know, you try to walk whenever you can. And that’s wasn’t and isn’t the philosophy today. It wasn’t the philosophy even in the ’70s. The philosophy was, no, we need to improve society for everybody. And so Ed would make the case to my dad that every time you do that, you’re sending a signal to elected officials and decision-makers that, well, it’s not such a big deal. Look, he can just jump it, right? But the movement means you have to have a shared vision. Everyone has to hold that vision and move forward together. And so, you know, that was a little hard for me as a kid ’cause I was just used to, “Let’s go,” and he would do it. And then all of a sudden there was like, “Oh, no, we don’t do that.” So there was a learning curve for me too as a kid of, of someone who hadn’t been an activist and now was an activist, and now there were sort of, you know, we, took a stand on, on various things. So I had to learn how to do that. When Ed passed away, I was working in Berkeley and working for the Berkeley Mayor’s office, and I was asked to help convene a group to honor his legacy. And the or- initial conversations were like, let’s do a, a statue, street renaming, a plaque in a curb. And at that point, a lot of nonprofits that serve people with disabilities were facing rent increases. And this idea became let’s create a one-stop service station where all these disabled service providers could co-locate, and it could become like a hub for services, and it needs to be at a transit stop so that people can use public transit to get there. And that became the Ed Roberts Campus, and I ended up working for that project for 15 years. And we went through two ar- the first architect completely didn’t get it, didn’t listen. We had to fire that firm. And the second firm that we hired, actually my father was on the selection committee, I recruited him to help, and we picked this wonderful firm, Leddy Maytum and Stacy. And I remember talking to Bill Leddy, and he asked me what did accessibility mean to me vis-a-vis the Ed Roberts Campus. And I told him this story that every time my dad and I went to a public building, almost always there was this moment, especially public buildings, often have these grand staircases, entryways, big marble stairs or whatever. And schools and libraries all have this, right? These sort of grand entrance is completely inaccessible and they, you know, tagged on, tacked on rather, is some sort of switchback ramp that goes back and forth, usually on the side or the back of the building. And so for me growing up, I always had to face this moment with a father in a wheelchair where I could walk up to the top of the stairs and wait for him, and he could go up and down, or I could feel like the dutiful son and take this long walk with him up this ramp and do it together. And I just said to Bill Leddy, I just said, “Look, remove that. I want an entryway where a father and his, a dis- able-bodied kid and their disabled dad can just roll proudly in and not have to think about it, not have to make this uncomfortable choice where you’re confronted with your difference unnecessarily.” So that was a very powerful, for me, culmination of the activist education that we got from Ed, and then being able to apply it in the real world. And if you ever get a chance to come to Berkeley, you’ll see that it’s a grand welcoming plaza and all the doors open at street level.

Asher: That’s so cool. I love hearing just so many different definitions from people, and especially coming from you, where you have a background in, like, back in the day when disability wasn’t, like, really, what’s the word? Like you were saying, like, they just had to do what they could do kind of thing. Whether it’s pop a wheelie or, like, get a crutch and, like, sort of stand up and do it kind of thing. It’s so interesting to just hear how it was back then versus now, where everything should be universally designed, as you said. And it, I find it so fascinating, and I love it. I love hearing what accessibility is defined for different people and how that just changes the way they sort of view the world. I’m also curious, what do you think are some of the biggest misconceptions people have about disability?

Caleb: Yeah. I mean, I could speak to what I’ve observed over the years, you know, my father being athletic. On one hand, he was sort of viewed as he’s overcoming disability, and how heroic. And now we even have a term for that, those types of stories, as sort of inspiration porn, right? Like, that’s not his whole story. That’s your projection onto what he’s doing to be able to cope with a barrier that may not need to be there. I think, you know, a lot of people still feel like, and I think this is understandable, that it’s a tragedy. And certainly in some cases, the inciting event, right, getting polio or falling off a roof or having in a car crash, it is, it is, it can be tragic, the circumstances. And there’s certainly a process that’s not always easy for people to come to, ultimately, an acceptance of being now a person with a disability and having it change their lives. And then there are people, of course, who are born with a disability, right? Either young or born. There are any number of disabilities. So this idea that it’s tragic is a misconception. This idea that anytime you do anything that sort of exceeds non-disabled people’s expectations is heroic is also a misconception In my book, what I wanted to sort of play with was both the ordinariness of disability from the perspective of a child who’s born into it, and then also the sort of societal projections that I’ve experienced too. So there’s a scene you might remember from the book in the very first chapter. I never narrate and say, “Oh, my father was paralyzed from the waist down due to childhood polio.” Like, I never write that sentence. Instead, I wake up before my parents do, I sneak out of the van, I see that the back door is lifted where they are sleeping on the bed, and I see my father’s pink, soft feet and these bony, polio atrophied legs poking out. And then, you know, I don’t wanna wake anybody, so I go around to the side of the van, and my father’s E&J wheelchair is parked there, and I sit in his chair, bored and waiting for them to wake up. So just simply by describing his feet and putting myself in this wheelchair, I’m trying to tell the reader that for me, that’s just, this is what I observed, right? But man, as I got older and started to understand what people were doing, it was really mind-blowing for me. I remember being in a grocery store, and this happened a couple different times, 10 or 11 years old, and people would ask me. They’d see me shopping with my dad, right, and I’m pushing the cart, and he’s coming along, and he’s put, taking things off the shelves and putting it in, and they’d sort of whisper to me, “Is he your real dad?” Cause they just couldn’t get over the idea that, like, a disabled person could have kids. And I think the subplot to that is they can’t imagine that disabled person could be sexual. And let me tell you, growing up in a VW van for three years, they are sexual! Uh, so I think that is a big piece, too, and, and I know that was an issue for my parents, sometimes hard for my mom. And I could see it, and I describe this in the book, if you remember. When my parents were asked, “How did you meet?” They would make up these crazy stories that they met on a battlefield or they met in a civil rights protest or something like that. And I always took those stories at face value. I knew they were making them up, and I thought they were funny. But I, what I came to do is I, in the sort of exploring for the book was, I think that they were responding to their assumption that the person, that the person who was asking was like, “How is it possible that an attractive woman would be married to a disabled man?” Maybe that’s not true, but that’s what I think was happening, and sometimes I think the more fantastic the story correlated to their distrust of that person’s motivations in asking the question. Maybe I’m wrong, but I write that in the book as a possibility. But my mom definitely got mixed feedback when she married my father of like, “What are you doing? You know, you’re gonna have a horrible life, and you might not have kids,” and, you know, people’s projections of that. And of course, my parents, although this book covers hard years for them early in their marriage, they ended up being married almost 50 years

Asher: Caleb, you bring a very big point. It’s so sad. There are definitely things people say whenever you meet a person with a disability or even when it comes to like being in a relationship with someone with a disability. It’s like, “Oh, you’re gonna have to take care of them for the rest of your life,” or, “Oh, this and that.” No, this person is a capable individual. And no matter if they have a disability or not, I’m not loving this person because of that. I’m loving this person because of their character or because of who they are.

Caleb: So beautiful, Asher, absolutely right.听

Asher: It’s so sad. No, I mean, I’ve also heard of these phrases before, and I faced definitely these kind of situations where it’s like that’s not fair. Like don’t, don’t say that.

Caleb: Yeah.

Asher: I usually just will be like, “Don’t say that. Just please don’t say that”

Caleb: From both of us!

Asher: Yeah. Oh yeah, definitely.

Caleb: For sure. No, thank you for sharing that.

Asher: Yeah, no, of course. Thank you, yeah, for sharing your memoir and just your personal experiences on the topic of disability and just disability advocacy and such. I’m interested to know like is there a particular moment in your memoir or an experience that comes to mind when you think of like disability advocacy or perhaps the way disability wasn’t understood or supported?

Caleb: I think I touched on this a little earlier, but let me go into it in some more detail, which is what happened when our family became politicized. You know, my parents are very much political people. They are civil rights activists. My mother was a very early women’s rights feminist, organized assertiveness training workshops for women. But it was interesting to me: they did not see the disability as a civil rights issue until the early ’80s. I think that’s interesting, right? Because the same … you could certainly extrapolate the Af- you know, African American civil rights movement, women’s rights movement, and that is what happened, right? It- those disability rights movement comes out of those movements. But they didn’t, they were just weren’t living in that world, and I think part of the 鈥� because of the way my father was also mainstreamed growing up. But boy, for us, once it shifted, once they made that connection, everything in our life changed almost overnight. My mom sort of tells this story that for her, like, you know, the straw that breaks the camel’s back was this moment when they were out celebrating their wedding anniversary and they were in this nice restaurant, and Dad had to use the bathroom. And so he excuses himself, and he goes to the restroom, and he finds that the doorway 鈥� And keep in mind, this is their wedding anniversary night, right? They’re dressed nice鈥� the doorway is too narrow, his wheelchair can’t fit through it. And so he drops out of his wheelchair, and he scoots along the floor and lifts himself up onto the toilet and uses the toilet. And my mother, something for her snapped, even though this wasn’t the first time that it happened. This is certainly not the first time she had seen him deal with an inaccessible bathroom before, but this time it was unacceptable. She was done. And she, my mom, is a very political person. She’s a very good researcher, a very good writer, and, it just became the never again moment. She started doing her homework. She found out that there were all kinds of laws in California already on the books, even pre-ADA laws on the book that say you had to provide accessible restrooms, and my parents both joined what was a volunteer thing called the Community Access Network, and they basically got trained to be access cops, and my mom took to it with a vengeance. I mean, they were busting restaurants and businesses left and right. They were testifying at city council meetings where the council was meeting in an inaccessible room. They started testifying at the state capitol. They were going to marches in San Francisco for transportation access, and it was just like all of a sudden we went from, *vroom*, zero to 60 miles an hour, having this thing happen. And at this point I’m 15, 16, 17 years old. And during this period they meet Ed Roberts. That becomes, they’d never even heard of the independent living movement, and then they are just so politicized. And at the same time, and I don’t know all the chicken and egg timing exactly but my father also forms this wheelchair sports association, and starts recruiting people in chairs to play tennis and to play basketball. And from that same group, which, you know, the beauty of disability is that it doesn’t care about religion, it doesn’t care about politics, it doesn’t care about race or class. And so it’s a very diverse group of people who he’s playing sports with, and they become politicized, and some of them become founding members of this board of directors that becomes FREED, which is the first Independent Living Center in Northern California that my parents co-found, and then my father becomes the first executive director, and then he becomes even more of a public advocate for disability rights at the state level through that. So that changed everything for us because now my dad wasn’t bop-bopping into the street to get out of an obstacle, he’s demanding it be removed. We’re not eating at restaurants with inaccessible bathrooms, we’re boycotting them. And he’s not doing things that he used to do because they’re not accessible to everybody. And at first I was, I think I mentioned this earlier, but I was like sort of like a little aggrieved or confused, like, why are we changing? Why is everything changing, you know? But by the time I was in my late teens, I was totally on board. You know, I felt the sense of community. I was meeting, other families. And, um, I remember that by 1990, the governor of California was threatening to completely defund the independent living centers throughout the state. And my father and others organized sit-ins to protest in front of the governor’s office, and I joined him, and I was on the floor amongst all these other people on the floor, and all these empty wheelchairs and crutches around us. And at one point, I’m lifted into the air by two state capital policemen, and they’re like, “Where’s your chair? Where’s your chair? Where’s your chair?” And I’m like, “Actually, I can walk.” And they’re just like completely confused, and they herd all of us down for citing and all the rest. But, you know, at that point, I, I was completely bought in, and really proud to be with my father in a moment like that. Yeah.

Asher: Yeah, no, I love that. That’s such a huge thing. I’ve seen, um, videos, from the late, you can correct me if I’m wrong, ’80s of just, like, the whole disability rights movements of people, like, crawling upstairs without wheelchairs and stuff.

Caleb: It’s so powerful.

Asher: It’s so powerful. And I love that they picked you up without knowing that you walk.

Caleb: My feet are dangling off the ground, but. It was really, it was very interesting. It was, um… There was an interesting thing I’ll share with you though that happened. We were all taken to be cited down in the, in the garage under the state capitol building. And on that same day, Act Up, which is an AIDS, LBGT group that was fighting for, you know, that something be done about, you know, HIV AIDS, they were there, and they were taking extreme, what would you call that? Just, um, very more extreme protests. They were throwing fake blood on the marble steps and and onto, you know, the statues and things like that, and they were being treated very roughly by the cops, and metal handcuffs, and we were just sort of being either, you know, little plastic ties or nothing at all. And I remember saying to my dad, “Oh, we’re doing it right, you know, and they’re, they’re doing it… Like, if they weren’t so extreme, they’d be being treated more gently.” And my father said, “Oh, no. You need to understand that in political activism, there’s this huge continuum, and without them, we couldn’t be effective. That the, there are times for non-violent protests, there are times for more dramatic protests. There are lots of different ways to make your voice heard, and what we did today was one way, sitting in front of the governor’s office, and what they’re doing is another way, and it’s all part of social protests and social movements and tactics. And in some ways, what they’re doing makes what we’re doing also effective.” So it was a real teachable moment for me. I’m probably not articulating it as well as I could, but it was鈥� it completely was like, “Oh, I get it now.” And, um, you know, it isn’t like there’s some sort of, oh, there’s this neat and tidy way to protest, and that there’s a sort of, oh, another way that’s not neat and tidy and somehow not as effective. They’re all effective, and they’re all part of this sort of protest ecosystem that’s needed when it’s needed. So it’s a little鈥� that was a bit of a, a diversion, but it happened on the same day and definitely sort of had this big impact on me, and it was also a really beautiful moment between me and my father, where he was able to share with me, you know, his own stories, ’cause he had protested the Vietnam War and other things where there was more direct action involved. So it was… Yeah, it was one of those sort of special moments

Asher: I feel like that’s very, powerful, just the whole idea of, like, there is a time to do something more drastic, and there is a time to do peaceful protesting. Like, there’s definitely a time and place for every single one of them, depending on the situation, and especially for, like, disability rights, I feel like, or for any kind of human rights or, yeah, et cetera. Um, yeah, we’re getting to the last couple questions right now, Caleb, and you’re one of the, like, first couple of authors that we’ve ever interviewed on our collective, which is amazing, and we love to ask this question: What responsibilities, if any, do writers have when representing people whose experiences differ from their own, whether it’s a disability or whether it’s from a different culture?

Caleb: Oh, it’s such a great, it’s a really great question. I appreciate you asking it, Asher. Um, you know, I think I need to just be clear that my authority begins and ends with what I know, what I witnessed, how my parents’ lives affected me. So I’m, I think I said this, I’m not claiming to know even anything about them that they either didn’t tell me or wrote about and shared with me. And I’m certainly not taking on the role of spokesperson for any larger community. But I do think that writers must hold onto their creativity to imagine other people’s lives, especially in fiction. Which memoir is not, y- you know, but in fiction especially. And I think it comes to disability, and this is so hard for me sometimes to read books or to see movies and TV shows where I really take issue with how a person with a disability is portrayed. And most of the time I’m not happy at all, but I, I would like to challenge writers to create disabled characters who are full, complex human beings, not just their diagnoses, not just something heroic or pathetic or symbolic, right? And this is kind of a little bit of a fantasy for me. I think like a lot of people, I want my book to be turned into a movie, right? But at the same time, I’m kind of scared because what would some mainstream shop do with my family’s story? I don’t want them to portray my father as some inspiring wheelchair user and just totally counteract everything he believed in, or to do my mom, just make her, “She’s a mentally ill mother,” as opposed to someone more complex, which she is. So here’s what I would say to my fellow screenwriters and writers is like, keep it interesting. Preserve the contradiction. You know, be able to hold multiple ideas at once that a person with a disability could be competent and experience difficulty. That being raised by a disabled parent can be loving, and there are parts that can be harmful. That you can be idealistic, and there can be consequences as a result. And all of that complexity can coexist in a story about people with disabilities. So go for it. But, you know, don’t make a claim that you don’t have a right to. Don’t go for easy, easy labels and easy fixes.听

Asher: For sure. Yeah, no, a big one. Yeah. It’s very difficult whenever we do see movies, TV shows that sort of portray disabilities in not a realistic way, I would say. There are some movies, and I’ve seen some pretty good ones that do portray, like whether it’s sign language or Deaf or hard of hearing, and they portray it in a really awesome and great way, and kudos to directors for doing that. Awesome. But yeah, no, definitely, it’s a huge balance of keeping it creative but also making it realistic kind of thing, and you touched greatly on that. Yeah, for sure. If every listener could make one change that would help create a more accessible world, what would you hope it would be, Caleb?

Caleb: My, my, my three wishes to the genie?

Asher: Yes. Yes, definitely. Three wishes Go for it

Caleb: God. I mean, I think we need to be talking about non-disabled people, right? We have to stop making assumptions about what a disabled person is capable of. You know, I mean, I’ve told you so many stories about my family already, but one of the ones that’s just so irritating even to this day is that my father went to grad school at UC Berkeley to study architecture, and he entered a contest and won it that provided a paid internship with the city of Berkeley. And he got to the building, the offices were on the fifth floor, no elevator, was using full leg braces and crutches, and he got himself to that meeting on time, and they took one look at him and said, “Oh, we can’t give you, we can’t give you the job. It, it would be too hard for you.” And it was so patronizing and so insulting. And, um, you know, my father was pissed, but he was undeterred, and he did go on to become a city planner and an urban design professor. And, uh, so yeah, I think that story for me just illustrates again, and this comes up every day, don’t assume what the other person needs. Don’t look at somebody and go, “Oh, they can’t do it.” Ask them. I feel like there’s a lack of, there’s a fear maybe around litigation, but just frigging ask people respectfully, “What do you need to make this work? What would a reasonable accommodation look like?” And not assume they can’t do it. Maybe nothing’s needed at all. There’s this, uh, very well-known adage in the disability rights community, I’m sure you’ve heard it, which is, Nothing About Us Without Us. And that’s really a pointed reminder at them, right? So I think is we know that disabled people need to be at the table when it affects their lives. And if you’re a non-disabled person, so this is my wish, if you’re a non-disabled person at the table, and you’re dealing with policy programs, investment, et cetera, that’s gonna affect the lives of disabled people, look around the table. If they are not there, stop the meeting and get them there. Or have them convene the meeting. It’s this idea of trying to backfill later: ” Oh, we need a, we need representation. We, you know, let’s go find, fill in the blank, person with a disability, person of color.” I mean, it’s, we have to stop that sort of phony representation and actually go, What’s the topic about? Who’s this for? And make sure that it’s their, that the people that it’s for are running the show. And that’s the philosophy I grew up with my father. He believed in community advocacy. That was actually a principle of urban planning, is that you don’t come in and tell a low income neighborhood what they need. You spend time in the community interviewing and meeting and empowering leadership from within so that they design their own community. That was as smart and on point I think at, in the ’60s when my father was practicing as it would be today. It’s like … And that’s what happened with the Ed Roberts Campus. We had an 18-member board all representing organizations who served disabilities and, it was that ultimate nothing about us without us. It was us. We weren’t doing anybody else. And I got to, I got the honor of being a project manager on that for many years, so I learned a lot.

Asher: Well, Caleb, thank you so much for, um, speaking to me today, uh, about your book. Um, and yeah, we’re looking forward to seeing it come out in the bookstore. Do you have any final messages or any hopes for readers who will read your book later on?

Caleb: Well, thank you. I hope people read the book and get the book. It’s called The Adventures of Superfreak: My Childhood on the Hippie Trail. It comes out September 21st. And I just hope that people carry way a greater tolerance for complexity. Obviously I’m a kid, and so my parents are a big part of the story, and I hope they see them, you know, as disabled people, as adventurers, as seekers, as parents, as advocates, as imperfect humans. Disability is certainly central to our family, but it’s not the only explanation of who we are and who we were as a family. I hope readers recognize that access and belonging are collective responsibilities, and that children are witnesses to the worlds adults create. Telling my story from a child’s perspective, I really want to focus that. We’re not just sort of baggage. We’re actually taking it all in. So I hope that, you know, we look more carefully at children inside history. What’s it like to grow up in movements, and what’s our responsibility for creating communities where we all can belong and feel part of? I think that sense of belonging is really important for children, and it’s important for all of us. And I, I hope that’s something that our readers will feel and take away from my book.

Asher: For sure. Thank you so much once again, Caleb. Appreciate, talking to you

Caleb: It’s been my pleasure, and, thank you for the opportunity.听

Episode Outro Disclaimer

Kylo: Thank you for listening to Let’s Talk!, 抖阴福利导航’s broadcast about disability culture. Find more information and resources concerning this episode and others at pcc.edu/dca. This episode was produced by the Let’s Talk! Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resources Department, and the 抖阴福利导航 Multimedia Department. We air new episodes on our , our Spotify channel, , and .听

Episode Transcript

Transcript edited by Hannah “Asher” Sham

Introduction

Kylo: You’re listening to Let’s Talk!. Let’s Talk! is a digital space for students at 抖阴福利导航 experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of 抖阴福利导航, 抖阴福利导航 Foundation, or our community partners. We broadcast on our home website, , on Spotify, on听, and .

Meet the Guests

Asher: Hello, Let’s Talk! Listeners! My name is Asher, and I am here with some very special guests today from The Wheelchair Repair Shop. Do you guys mind introducing yourselves, your name, occupation, and your pronouns, please?

West: Sure! Thanks, Asher! This is a wonderful opportunity to share a little bit about ourselves. My name is West Livaudais, and I’m the executive director of Oregon Spinal Cord Injury Connection, and my pronouns are he/him.

Tyler: Thanks, Asher. My name is Tyler. I use he or they pronouns, and I am one of our repair coordinators here, at The Wheelchair Repair Shop.

Asher: Awesome. Thank you guys so much for joining me today.听

What the Repair Shop Is

Asher: For listeners who may not be familiar with your work, what is The Wheelchair Repair Shop and how did it come to exist?

West: Yeah, so The Wheelchair Repair Shop is a new program that Oregon Spinal Cord Injury Connection is launching. It really came out of our wheelchair maintenance workshops, which is a monthly workshop that is hosted in multiple cities around the state. We meet for two to three hours, and we provide, education, free access to tools, and the space to help people address their critical wheelchair needs. Sometimes that’s simple maintenance or repairs, and we utilize volunteers that have a heart for this work to really make this program come alive. So, the wheelchair repair shop is an effort to expand the hours and we’re starting in Portland. We have a space and we have, I think it’s, four shifts of four hours each month currently.

Asher: Awesome. Cool. Thanks for that, West.听

From Workshops to Shop

Asher: What role does The Wheelchair Repair Shop play within the Oregon Spinal Cord Injury Connection?

West: So, the Oregon Spinal Cord Injury Connection is like the parent organization, and The Wheelchair Repair Shop is like a microenterprise, or a small business, within the organization. The shift from “The Wheelchair Maintenance Workshops” to The Wheelchair Repair Shop is a shift from thinking about the work purely from a nonprofit perspective; getting grants and donations to do this work, and provide free services and parts to people, utilizing the revenue that comes through, providing services and repairs to make the program more sustainable, expand the services, and provide different modes in which people can access those services. Namely, mobile options and providing good quality, new parts, to people that can’t afford, perhaps, like brand new equipment.

Asher: I feel like that’s a very important part for people who do use wheelchairs and are wheelchair bound. They need the accessibility to be able to grab the parts they need in order to fix their wheelchairs and be able to move around. That’s a very huge work. Thanks for doing that.听

How They Got Here

Asher: Can each of you tell us a little bit about your background and what brought you to this work?

Tyler: I can start first, West. So, I’m actually not a wheelchair user. My background is that I was a bicycle mechanic for a really long time and I got interested in organizing around public transit, walkable cities, urban infrastructure… Through working in those groups, I ended up getting introduced to West and Allison, who started The Wheelchair Repair Nights at Bike Farm. I had no connection to the disability world, or anything like that. But, they told me, “Hey, we’re starting this wheelchair repair event and we think you’d be great.”. My first thought was, I don’t know anything about wheelchairs or repairing them, or anything, how can I be helpful? But, I’m really glad that they both pushed on me a little bit, because it turns out that repairing wheelchairs is really, really similar to the kind of skills that I had from working on bikes. It’s been really exciting to, over the years, kind of use these skills I already had, but use them in a different way that’s really impactful. So, it’s just been really fun, and I’ve really enjoyed kind of working with this program. But, yeah. I did not come at this from a disability sort of background. I came into it from more of just like a mechanical and volunteering thing. But, I will say like learning about this gap in services that the current kind of repair industry is leaving people in; it’s been really motivating and really encouraged me to dive deeper into the disability-related work.

West: I’ll go next. So, I do have a spinal cord injury, in 2013, and out of that experience started Oregon Spinal Cord Injury Connection to try to create community and access to services and resources that I didn’t experience. Part of that experience of becoming a wheelchair user was navigating durable medical equipment services and getting access to learning how to repair my chair. It wasn’t easy and it quickly became obvious that it’s easier to do it with somebody else’s help. Specifically, to Oregon Spinal Cord Injury Connection, my spinal cord injury is what brought me to that work, as a wheelchair user. Trying to navigate durable medical equipment, companies, and fixing my chair on my own really was the idea that brought Allison and me together to start The Wheelchair Maintenance Workshop.

How OSCIC Started

Asher: Awesome. Thank you so much for sharing how The Wheelchair Repair Shop and how The Spinal Cord Injury Connection also came to be. I know you touched on this a little bit, West. But, what fully inspired you to create the Oregon Spinal Cord Injury Connection? Was it simply your injury, something else, or…

West: yeah, I guess what I would share is; after my spinal cord injury, I was trying to make sense of the world and move forward as best I could. I was working in Public Health and I started a degree at OHSU to get a Master’s Degree in Public Health. That, in addition to my experience with spinal cord injury, galvanized me to host meetups where I would meet other people and we could share stories and build community. Those meetups were really well-received and more and more people came; they were here in Portland. Over the course of a year, or two years, they kinda became… I don’t know what to say. But, basically, people knew that they were there and I was encouraged to try to make it something more, and that’s when we became a nonprofit. So, what I try to do and what I’ve tried to create with Oregon Spinal Cord Injury Connection is, a space where people can thrive and find community after a really devastating injury. It can be very devastating and families can find themselves at a loss without resources and it’s very disruptive at nearly every level of a person’s life; physically, educationally, job-wise, relationally. It just turns everything upside down. What I’ve come to learn over these years is that, more than money, more than the level of injury that a person has, like a really serious injury or a lesser, almost any other factor; having strong community support is one of the greatest indicators that someone will thrive after a spinal cord injury. So, to put it simply, starting the Oregon Spinal Cord Injury Connection was my way of metabolizing something that happened to me and trying to make it positive.

Why Repair Matters

Asher: That’s awesome. As soon as you started the Oregon Spinal Cord Injury Connection, you saw some gaps that were unmet in the community. Was that how you identified that wheelchair repair was such an important service to offer?

West: Yeah. Tyler alluded to this previously. But, people that use wheelchairs, rely on wheelchairs for their independence and, getting out into the community quickly realize that the medical industrial complex has a lockdown on wheelchair repair and parts. It’s difficult, it’s frustrating, and it can actually have serious negative health consequences for a person when their chair breaks down. It has physical aspects and emotional aspects and it’s really cool to come together with bike mechanics who care about wheelchair users and watch them learn what a wheelchair is. In those conversations at The Wheelchair Maintenance Workshop, at Bike Farm in Portland, I’ve seen wheelchair users impart their experience to the mechanic and the wheelchair user didn’t realize they knew so much technical aspects about their chair. Then the bike mechanic picked it up and started helping and working alongside this wheelchair user to fix what needed to be fixed. I guess for me, in a city that loves bicycles, there could not be a more like synergistic, symbiotic partnership. That’s what I’ve seen with these Wheelchair Maintenance Workshops, at the Bike Farm in Portland, every month. People coming to learn, people coming to be in community getting their wheelchair fixed when they’re really in a pinch. It’s a joyful place. It hums with positive energy and Tyler is kind of leader in that space. He has a ton of experience and like I think he’s naturally talented at problem-solving and people love to learn from him, and we all love to learn from each other. I’m not sure if that exactly answered the question, but it gives you a little bit of insight into the spirit of what this work is about.

Asher: It’s great. I love it! Yeah, definitely answered the question. Thinking about it, bicycles and wheelchairs sort of do have the same part, and correct me if I’m wrong, I’m not an expert at that either.

West: I’ll let Tyler answer that.

Proud Moments and Growth

Asher: I’ll get to that question as well, later on down the line in our list of questions too. Looking back, West, is there a moment or success story that makes you especially proud? Whether it’s The Wheelchair Repair Shop that you guys have opened up recently or the Oregon Spinal Cord Injury Connection?

West: I would say there are many things that I’m proud of. Not only for Oregon Spinal Cord Injury Connection, but also for the Wheelchair Maintenance Workshop. Of all of those things, what comes to mind immediately is the years that Alison and Tyler and I showed up at Bike Farm during COVID and during wintertime when nobody showed up. We tried, and we tried, and the season wasn’t right, perhaps. But, they stuck with it and there were times where I’m like, “Why haven’t you given up on this or given up on me with this?”. I realized then it wasn’t “Tyler and Alison doing West a favor” to lift this program and make it happen; it was their work their passion. Their care for this community. It’s like when a match lights another match, now you have two flames. This is what’s happening with the Wheelchair Maintenance Workshop and the Wheelchair Repair Shop, in Portland and around the state, is when we empower somebody with tools and equipment and companionship, their mechanical literacy improves, they have more confidence and they have a place to come to with this problem. With this challenge of living a life, in a wheelchair; maintaining it. That gives me so much joy. Tyler’s here. I’m very grateful to Tyler and, Alison is not here, I’m very grateful to Alison. We wouldn’t be here today. We wouldn’t have the success we had and The Wheelchair Repair Shop probably wouldn’t happen.

Tyler鈥檚 Coordinator Role

Asher: That’s super sweet! Thanks for that, West.听 I’m moving the questions onto Tyler. I’m sorry to leave you out of that whole conversation. What does a typical day look like for you as a Wheelchair Repair Coordinator at the Wheelchair Repair Store?

Tyler: Yeah. So, “coordinating” is definitely the key word there. We are really new, making this move from something that we’re doing once a month to having a physical store where we’re open once a week. As we’ve opened, we’ve already been sort of flooded by repair requests. Which is great on the one hand and, on the other hand, it really highlights the size of this problem. That there’s so many people in the Portland area, that are not having these mechanical issues fixed in a timely or safe kind of manner. But, the coordinating part of my job is just fielding all of those requests and trying to pair people up with our volunteers, who are awesome and have really widely different skill sets. So, trying to pair a person with a volunteer who is going to be able to help them with whatever it is that they’re working on; whether it’s a power chair or they need some help with some seating adjustments, or whatever it is. Just trying to tie specific people in our community who have this need with a volunteer who has the time, energy, and skills to help them. So, yeah. A lot of coordinating, a lot of networking, and it’s really been cool to watch this kind of network get built.

Asher: Are you mostly in the store all the time now that it’s open, or do you do a lot of work from elsewhere?

Tyler: I do work from home mostly. This is not my full-time job, so I do it on the side and a lot of it is email and phone-based to just reach out to people; make sure that they feel heard. “Hey, we’ve received your request. We’re getting you connected with someone.”. Another thing that’s been really interesting is, thanks to some recent legislation that we helped get passed last year; we’re now able to access a lot more repair documentation online. Which means that a big chunk of my job now is also this computer research element; trying to figure out, “hey, this person, they gave me the serial number for their wheelchair. Let’s see if we can figure out, based on the service manual, what kind of batteries it has”, or something like that. So, that was not something I expected as much, but it’s become a larger part of my job lately. Is this kind of internet sleuthing, trying to figure out what could be causing this problem, or how does the manual recommend that we fix it? What have other people on the internet, across the world, done to solve these problems? Because we’re often kinda operating in an ecosystem where there isn’t always great info about how to solve these things. So, that’s been an unexpected but fun sort of component lately, too.

听

Right To Repair Bill Explained

Asher: What is this law that was passed that you mentioned, last year, if you don’t mind talking a little bit about it?听

Tyler: So, Oregon, a few years ago, passed a Right To Repair Bill. When it was first passed, the Right To Repair Bill covered consumer electronics. So, things like cell phones, TVs, laptops. The point of a Right To Repair Bill is to really break the monopoly that companies have on repairing devices. The most common one that everyone is familiar with would be smartphones. So, for a long time, if your screen broke; on iPhone, you had to take it to the Apple Store. In states with Right To Repair, you can have third-party repair businesses. So, all of a sudden, these businesses pop up that repair cell phones from all kinds of brands. These parts, the service diagrams, all of these things are made available to whoever kind of wants to fix them. So, you can fix them yourself, you can hire someone at a repair shop to do it, or you can take it to the manufacturer. You essentially have options when you want to decide how something gets repaired. Last year, what we helped get passed was that durable medical equipment, including powered wheelchairs, got added to the existing Right To Repair Bill. So, now it covers phones, laptops, computers, but also, really importantly, things like power chairs. So, companies can no longer sort of hide behind this monopoly. They now have to make these documents, tools– specialized tools, is another one. I think the text of the law says they have to be made available to the public at a reasonable price. So, if there’s some specific tool where it’s like you need this specific wrench to work on this specific object, that wrench has to be made available to the public at a, quote, “reasonable price”. So, that’s been really huge for us in helping to make sure that we actually can repair things. For a long time, a lot of repair tasks were sort of locked up, because these companies were hiding behind this monopoly.

Asher: Oh, interesting! Wow, I had no idea that wheelchairs, in general, don’t have an instruction manual or don’t have a way of telling you, “Oh, this is how you repair it in case this thing breaks down.”! I would think that machinery would have something that goes with it! But, I’m also very glad that that law has now been passed, and it was passed last year? Is there a name for the law itself, or I completely missed it, probably?

Tyler: West, do you remember what it was? I want to say it was “SB 55”, in Oregon?

West: Yeah, I think it was “SB 550”.

Tyler: “550”. Thanks. Yeah听

West: Championed by Senator Janeen Sollman.

Common Fixes and Issues Encountered at the Shop

Asher: That’s so good. I’m so glad that wheelchairs, especially machine-operated wheelchairs, now are able to be properly repaired and with the right tools at a reasonable price. With that, what are the most common repairs or issues encountered at The Wheelchair Repair Shop? Do you mostly fix “machine-based” wheelchairs or “manual”? Yeah, there we go. Correct me if I’m wrong with those terminologies and such.

Tyler: Yeah, I actually get asked this question a lot, and I always kind of get excited about it. Because, the answer is that the most common stuff is really, really small stuff. For example, “Hey, this bolt is loose. Can you tighten it?”. There’s so many things that– I’m surprised– don’t actually require, specialized tools or a whole workshop to fix. There’s so many times where people are like, “Hey, could you just raise the feet on my power chair by a half an inch?”, or “Can you tighten this bolt that’s coming loose?”, “Can you put this cup holder on the left side instead of the right side?”. Some of these things are really small, mechanically. But, of course, they make a really big difference to people. It’s like a bug in your brain when your wheel is squeaking everywhere you go. We just have to put a little bit of oil on that and tighten this bolt and it goes away. A lot of the things are not very complicated, so there’s a lot of repairs that kind of fall into that category. There’s kind of another category of just, wear and tear. We do live in a pretty rainy place, so it’s pretty common for bearings to get rusty, or just dirty from the water kind of splashing around in the wheels all the time. So, we replace a lot of bearings. Tires are another thing that just wear out over time as people roll on them, so we replace tires. Another one that has been coming up a lot lately is power chair batteries. Just like a cellphone batteries only have so many cycles of being charged and discharged before they wear out. So, some power chair batteries can last two to five years. But, oftentimes, when people get to the end of the life of the power chair batteries, they notice, “oh, it’s getting really slow. It doesn’t hold a charge for very long.”. So, that’s another thing that people pretty frequently reach out to us about.

Barriers in Traditional Repair

Asher: You mentioned this a little bit, Tyler. But, what are some challenges people face when trying to get repairs through traditional channels? Whether it’s like coming into the shop to get it fixed or even going online; you were talking a little bit about like forums and trying to figure out the whole internet space of getting requests in for repairs and such.

Tyler: Yeah. This is definitely a topic that could be a whole hour-long podcast. Because, as with so many complex issues, there’s some sort of small things and then there’s some really big structural things. One of the really big structural things is in this country we have this whole insurance system of approvals and denials. I think everyone who’s interfaced with the medical world knows that can sometimes take a long time. People are also sometimes required to prove medical necessity for things. So, maybe you already have a wheelchair, but in order to get a repair done on the thing you need to prove to your insurance company that you still need this wheelchair. So, there’s all these kind of steps that we’ve added to the medical system that require people to document things, get stamped by 5 to 10 people, and all this stuff causes really long delays; which is really what makes it unacceptable. To have these repair companies telling people, “Well, we can’t come out to even look at it to diagnose the problem for three to six months.”. Then they figure out, “we need to replace your tires.”, then it’s gonna be another three to six months before they can go through that whole process, get insurance on board, order the parts, install them… at the workshops, people tell us a lot of horror stories about technicians who show up at their houses unannounced, so they weren’t home and then they say, “You missed your appointment. You have to wait.”. There’s so many things that just make it really hard for people to access. Which is why, increasingly, people are taking this more DIY, sort of, approach. So, one of the things that we kinda offer people is; a lot of the stuff that we’re doing is not really “medical”, in the sense that there are lots of things on wheelchairs. For example, seating adjustments, fitting, that you should have a professional custom fit the wheelchair for you. But, there’s other things, for example, putting new tires on; that aren’t really a medical procedure so much as they are just like a repair procedure. So, a lot of the stuff that we try to do is say, “Hey, like we can handle that stuff. That is well within our wheelhouse. You shouldn’t have to jump through all these hoops. We can tell you where to get tires from. We can help you figure out what size. We can install them.” So, even though some people are willing to go the DIY route, there’s another kind of thing too where some people, maybe they live in an apartment, they don’t really have space, maybe they don’t have tools, maybe whatever disability they have is limiting their hand function; they may not physically be able to hold a wrench in the way that is needed to do something like change a tire. So, that’s another place where we can come in and say, “Hey, we’re doing this still in a DIY, type of way”, but it’s really more of a “do it together”. To say, “How much do you wanna be involved? Do you wanna try to do this yourself? Would you like me to do it for you?”. We really try to work with you, but it’s still a very DIY process.

Asher: That’s awesome and great that even with all these different hoops of like insurance– I know that can be a really big nightmare to hop through– that The Wheelchair Shop is there to help out people in a very quick way or a very “DIY way”, as you mentioned. I’m sure that once there is a broken wheelchair, it quickly becomes a very big major life disruption for someone as well.听

Stories That Show Impact

Asher: Are there any repair stories that have stayed with you, or even with West, as well, just because of the difference that it made for someone’s life?

Tyler: Yeah, I can take this one first, and then I’ll pass it to West. But, every one of these stories, everything sticks with you. Because, you hear these horror stories from people and it’s just very aggravating. But, also very motivating. People are very thankful when you help them out, because of these things that they’ve gone through trying to get service. But, some of the stories that stick with me; there was a person who, the batteries ran out on their mobility scooter and, because of that, they were living in a skilled nursing type facility. We replaced the batteries in this scooter, and that was the difference for them between independence and living in the skilled nursing facility. So, they were able to return to like a more traditional apartment and live independently, which was lower cost for them, and also a much better experience for their mental health because they’re independently living, right? That’s a really empowering thing for a lot of people to do. So, there’s stories like that, where there’s this one mechanical piece of the puzzle that is keeping someone from something, and it’s really satisfying to go in and just literally fix that thing that is a barrier to this goal of theirs. Especially at all the monthly Bike Farm Workshops; there’s so many small repairs that we make that make a big difference to people. We’ll change the bearings out on someone’s wheelchair, they go to push it forward, and they’re just like, “Oh, whoa, this rolls so fast now!”. That was a five-minute little project and it made such a big difference to that person. That stuff is just like really, really heartening and so cool to see every time. I’ll pass it to West.

West: Thanks, Tyler. I have two short stories I would share that kinda illustrate why The Wheelchair Repair Shop is needed. The first is, one of my employees used a manual wheelchair and had a secondary chair. His primary manual wheelchair had a flat tire and he decided to go kind of, the recommended route of going to his primary care provider to get a referral to the DME Company to have his tire changed on his wheelchair. Basically, once he did that, he started the clock to see how long it would take for somebody to come fix his chair and being paid through insurance. It took three or four months to have an inner tube changed out of his primary chair. I think about that; there’s a lot of reasons why it is the way it is. That would also be another long podcast of describing why there are these breakdowns and the way the system’s set up. But, most people, would go to a bike shop and have somebody change the tube. It would cost a lot less. It would be a lot quicker. So, that was kind of an experiment that we ran just to see how bad is it really? A simple repair like an inner tube being changed shouldn’t take three or four months and it shouldn’t cost more than twenty-five dollars. It has such a huge impact. The other thing is a lot of people don’t have secondary chairs just hanging around that they can use. Another story is a good friend of mine, who uses a power chair, had the motors go out on his chair. It was a similar situation, it was a pretty new chair, and the motor should not have gone out. It took six months for him to get his chair back into his primary chair and, during that six months, he used another chair that wasn’t fit for him, or wasn’t suited to him. So, for those six months, it was really uncomfortable to be in a chair that wasn’t fitted for him and wasn’t his. When we’re able to quickly sidestep, or navigate, around all the requirements, that the medical industry requires of insurance, we’re able to get people batteries, fixed bearings, and get them back to living the life they love. Without the heartache and the frustration and the downtime that is characteristic of, working within– I’m gonna call it– just the medical industrial complex. Where there’s just so many requirements, so much paperwork, so much back and forth, other people, doctors, and insurance agents giving you permission to get your chair fixed, which is ludicrous.

Asher: It really does sound very ludicrous. Yeah, I can’t believe it takes at least about three months, four months, just to get something as simple as a wheelchair wheel to get like re-pumped or replaced. That’s so strange! I mean, if I think about it; if I bring my car to a repair shop and I’m like, “Oh, hey! My car has a flat tire”, instant change. But, when it comes to a wheelchair, it’s three- four months? What?

West: Yeah, and I’ll just speak to that briefly if you’d let me.

Asher: Oh, yeah! Of course.

听

Why Maintenance Isn’t Covered by Insurance

West: So, most health insurances and the centers for Medicare and Medicaid, don’t cover preventative maintenance. So, like you go to the shop to get your oil changed and your tires rotated, you pay for that out of pocket, but you know that’s standard care for your car, otherwise it’s gonna break down. Well, there is standard care that’s prescribed for your chair, but it’s upon the user. It’s their responsibility to do that. When you buy or you get the chair they give you the manual, or they give you some educational materials, on how you should clean it and all that. But, durable medical equipment distributors, suppliers, aren’t paid, aren’t reimbursed to do that work. So, they have to find other ways to make that pencil. So, it’s not a priority ’cause they can’t charge the end user to do that work. That gap causes chairs to break down more quickly and in the end that is beneficial to those durable medical equipment companies. Because, they make money off of selling new products and billing insurance for a new chair, billing insurance for a new set of push rims, or whatever. Versus doing frequent low-cost maintenance and repairs. That’s one thing and, then the other thing is, over the course of years, the many wheelchair repair shops that used to exist around the country, in the ’60s and ’70s have been, consolidated. So, that maybe there was 25 in The City of Portland and over the decades those have been bought up and consolidated. Now, in The State of Oregon, there’s really two main competitors. It’s “New Mobility” and “National Seating & Mobility”. Those two entities are owned by, “Private Equity”. Private Equity has just a totally different set of criteria to how they run their shops. What we hear is that the ATPs, people that are working on the ground, visiting people, trying to fix their chairs, at times there’s a lot of frustration at that level because their hands are tied. They’re not able to do everything that they want to do because of the corporate structure, of the organization they work within. So, people are feeling it all over, and speaking to a question earlier, that’s some of the larger context for why The Wheelchair Repair Shop is emerging; is that there’s a real need for it and there’s a large systemic breakdown in how we provide service and repair to wheelchair users.

Asher: For sure. It sounds, overall, very complicated in order to just get a wheelchair fixed. It sounds like there’s a lot of moving pieces, as well, in the whole process and such.听

Primary Vs Secondary Harm When Repair Is Slow

Asher: You both mentioned a little bit about what happens when a person has a broken wheelchair and even one of the stories where they had to move into an assistive living and not having that independence; what happens when a wheelchair breaks and repairs aren’t immediately available? Are there options for that person to be able to get another wheelchair, or would they have to go into assistive living, or are there other options for that person who needs to have a wheelchair to move around and to have that independence?

Tyler: Yeah, I can speak on this just a little bit. So, West and I often talk about this in terms of there’s “primary” harm and then there’s “secondary”. So, people have experienced physical harm because of a wheelchair breakdown. People sometimes fall out of their wheelchairs. We had someone come in who; this thing had gotten loose on their foot plate and it was getting jammed in the crack when they were trying to board the MAX. These are things that could have been incredibly serious injuries. So, that’s like the “primary” thing. The “secondary” things are all those downstream effects. West was talking about this person who got a new power chair and, even though it was brand new, the motors still went out and they ended up in this secondary chair. Those are the situations that can cause things like pressure sores, other secondary health effects. Oftentimes, when people do have backup chairs, it’s something that they maybe have purchased on Amazon or at Goodwill. So, they may have a custom fit wheelchair but, if that’s the one that’s broken down, their backup may be like a hospital style chair or like a folding type wheelchair that doesn’t really have advanced seating or it may not be sort of adjusted to their body. There’s a person who emailed me last week, who’s having some shoulder pain from the fact that they’re using their backup chair currently and it’s not fit to them the way that their primary wheelchair is. So, there are some immediate difficult things, but there’s also this whole long list of the ways that it can physically, “secondarily” harm people. But, I think I’ll pass it over to West because there’s also this whole psychological and mental component too of what happens when people are just stuck.

West: Yeah. Thanks, Tyler. That psychological piece; it is devastating. When you had plans to go out with friends, or go to church, or go to school, or whatever it happens to be, and then you’re just stuck, or you need to ask for help in some unconventional ways to get where you need to go. It just takes a toll. I could give you some really funny analogies, basically like, imagine if you were walking around with your pants on backwards or your shirt inside out. It has that kind of effect. Your wheelchair is intricately connected to your health; physical, emotional, mental. So, when it breaks down, you’re broken down. The other thing I wanted to share, if they have no other option, if the durable medical equipment company isn’t able to fix their chair, and they’re not able to rent a chair to the person on a short-term basis, that person will start making phone calls, start searching the internet, “How am I gonna get a new chair?”. They might be looking on Craigslist or Facebook Marketplace or they find us, Oregon Spinal Cord Injury Connection, or they’re connected in the spinal cord injury, or disability community, and they start reaching out , and asking for help. So, Oregon Spinal Cord Injury Connection has employed other people with spinal cord injuries as community health workers, and those community health workers are embedded in the community. They are people obviously with spinal cord injuries. Their work is to connect people, know people, find resources, be educated on these topics. Many times I’ve seen this where the team of community health workers starts asking and looking around for a chair. Some of the community health workers, they love doing this and almost every time we find one. There are chairs out there and people are willing to loan them, but health equity emerges out of community. It doesn’t emerge from institutions. It’s fortunate that we’ve built this network, but I don’t think people should have to rely on that. Health Insurance and the way that we provide wheelchair services and repairs; it’s just broken. People have to go to the internet and Craigslist to find a chair that will help them in a lurch. So, that’s also what happens after a breakdown. People start finding ways to get the help they need and that’s why the Wheelchair Repair Shop exists.

听

Misconceptions About Wheelchair Users

Asher: What misconceptions do people often have about wheelchair users or accessibility needs, in you guys’ opinions?

Tyler: West, I have like a mechanical answer to this. Do you wanna go first with your more direct experience as a wheelchair user?听

West: Sure. I really can just speak to my experience. misconceptions, I’d say, probably the primary one is that, as a wheelchair user, I’m not able to do something simple. I’m just thinking about opening the door and people want to open the door for me. I have come to accept that, but for a long time it bothered me. I’m like, “I can open this door it’s fine. Don’t everyone throw themselves at me so they can get the door open for me.”. There are times where someone does wanna open the door and I’m going under their arm. It’s just weird. It just gets weird. It makes me think about, “why? Why are people doing that?”. I think it’s because there’s this misconception that I can’t open a door, or there are other examples as well; pull a chair out from a table or something. I do appreciate the help and it’s because I’m in a wheelchair. There are other people that maybe can’t do that and they need that help. So, again, I’m speaking to my own experience. The other one that I’ve experienced is an iciness, a chill. Being in a wheelchair, there may be the sense that I’m very different from the person I’m standing next to on the bus or in the elevator or maybe there’s a curiosity about it, but they don’t wanna ask because they don’t think they should, or they wanna know what happened to you. All these weird questions interfere, at times, with the natural interaction. So, I will just take it upon myself to use humor or start the conversation if I want to. But, that’s another thing I think I feel sometimes; is a little bit of distance with random folks, because I’m a wheelchair user. So, not sure if that’s helpful. That’s been some of my experience.

Asher: That’s definitely helpful. Thanks for that, West. What are your thoughts on that, Tyler, from a mechanic perspective?

Tyler: Yeah. I Feel like the biggest misconception that I come across, and I’m speaking as a person who’s frequently fixing wheelchairs, I feel like so many people treat them as this magical object that they can never possibly understand. I think a lot of people really underestimate their mechanical ability, if that makes sense? I see this is also not unique to wheelchairs. This happens a lot with bicycles, with cars, with stuff like that where people are like, ” Oh, I could never figure out how to change a battery in my car.”. I bet you can. I bet with maybe a coworker or friend who can walk you through it you can do it. Anyway, I think one of the biggest sort of misconceptions about wheelchairs is that like working on them is gonna be this really complicated thing. I will admit sometimes it is. There was a power chair I was working on yesterday that was very, very complicated. But, a lot of things aren’t. Changing the tires on a wheelchair; okay, maybe it’s not something that everyone just knows how to do, but with a little bit of training and help they can figure it out. It’s not more difficult than it is to change the tire on a bicycle. Changing the batteries on a power chair is not really more difficult than it is to change the batteries in a car. If you’ve done that or maybe your dad showed you once; these things are not unlearnable, black magic kind of things. Sometimes people approach them that way. So, that’s one of the joys of the workshop and this kind of do it together model is to help people kind of break through that and teach them you actually can understand how this is connected to this and it affects this. Especially with a device that you use every day. People just don’t trust themselves a lot and it’s really fun to get to break through that.

Asher: Yeah, I totally agree with you both. Especially in today’s day and age where we can learn everything from the internet, from YouTube videos and people online, and it’s very helpful. West, I understand people trying to open the door for you, especially if you’re using a wheelchair. Not even that, like if your hands are full . At 抖阴福利导航, where I’m working at right now, the doors are just heavy and super awkward to open in general, so I can’t even imagine having a wheelchair and needing to try to open that. But, the great thing about it, right now, is Universal Design. So, even if your hands are full, or even if you have a wheelchair, or whatever have you, they have accessible buttons that you can press and the doors just automatically open for you. Which gives a great sense of independence to people as well, which I really love.听

Policy Changes in Healthcare Systems & Insurance Processes

Asher: What changes would you like to see in healthcare systems, insurance processes, or public policy related to wheelchair repair, mobility, and equipment? You guys have mentioned just the law that you guys managed to pass last year, which is a awesome win! Are there more wins that you guys are looking forward to in the next coming year, or so?

West: I’ll start. I don’t know if there will be more wins. I don’t know what they are. One thing that I would love to see changed is preventative maintenance to be codified and prescribed and paid for by insurance. That would probably prevent a lot of breakdowns, keep people happier, and allow the durable medical equipment service companies to be able to do those services. I do think what we’re doing now is empowering people and The Right To Repair Legislation, that Tyler spoke about previously, is going to facilitate that too. So I don’t know if it’s just one change. I do think that the work that Oregon Spinal Cord Injury Connection is doing with the wheelchair repair is, over time, going to change the landscape in Oregon and give people more resources and empower people and even create some economic opportunities. So, yeah. That’s one thing that I’m looking forward to.

Asher: Is there anything you’re looking forward to, Tyler, or just echoing West as well?

Tyler: Definitely what West said about preventative maintenance should be a billable category. That would be a huge thing. The other thing that I think about a lot is; this isn’t directly related to repair, but what people call “being on disability”, receiving money from the government, whatever that looks like. ‘Cause there’s different programs, but in almost every program you’re subject to an asset cap. So, you can only have so much in your savings account. The way that it’s related to repair is that ends up affecting people’s ability to do things like buy batteries or pay for services. So, that’s just like a disability in general kind of thing. But, having those asset limits removed or even just updated and increased for the inflation and today’s modern economy. Those numbers don’t get changed all that often, so it’s still incredibly low. So, that would be really cool to see. The other one that I thought of was; we’re not the only place that got Right To Repair Legislation, and specific to wheelchairs. 2026 is so far shaping up to be a big year potentially for Right To Repair Bills nationwide, and many of them include wheelchairs. One of the cool things is that the two kind of biggest groups of people we see advocating for the right to repair stuff is tractor owners and power wheelchair users. So, it’s been really cool to see. A lot of times, these bills are getting started in these states where there’s a lot of agriculture and then people are able to build this coalition of wheelchair users, farmers, and all these people and say, “We’re all gonna work together to get a Right To Repair bill passed and we need to make sure it includes tractors, wheelchairs, cars, iPhones!”. So, that’s just an exciting thing to see. I hope all those bills pass and I’m excited to see the kind of future of those in more and more states.

Asher: Definitely! I look forward to it too! I love these type of conversations, because I learn so much from it and I had no idea that there was such thing as a Right to Repair Bill. I feel like that should be just a universal thing, or already established thing, in general.听

Big Goals For The Repair Shop

Asher: Going back to The Repair Shop, what are the goals for the shop in general over the next few years and are there any new services or programs, events that you guys are excited about?

West: I could take a stab at that and, Tyler, definitely feel free to say more. But, we have some short-term goals that I think we need to work out. By the end of the year, we’d like to add, or add more, volunteer shifts to The Wheelchair Repair Shop. I’d say if you’re listening to this and you’re curious. If you’re mechanically inclined, or you have a background in bike mechanic work; reach out to Tyler and we’ll introduce you to the work. We would love, in the next year or two years, to add a mobile component to this work. Many people that have their chairs broken down transporting to somewhere else; whether it’s driving or public transportation, it’s difficult. So, that mobile unit is helpful. That mobile option is helpful. I think those are the two kind of big goals to demonstrate that this Wheelchair Repair Shop pilot is gonna work. We need to create revenue to pay for our rent, pay for our inventory, and the services. Right now, we’re utilizing volunteers and we have a lot of really good used parts that we have, that are donated. So, we have to demonstrate our kind of business model. Maybe we can chat again in a year or two and we can share how we’ve succeeded. Tyler, do you wanna pick it up from there?

Tyler: Yeah, totally. One of the reasons that we’re really putting our energy into this effort is, because, previously, our workshop was once a month. Now we’re once a week. But, yeah. Just more volunteers to be able to be open twice a week would be incredible. Of course, long-term super big picture, we have 20 staff and everyone has a Sprinter Van and they’re driving all over the state to go fix stuff for a lot of rural people who can’t make it to a place like Portland. So, yeah. We have really big dreams. But, of course, baby steps in getting there. Our first goals are really, prove that this is a way that we can meet this community need and grow to the point where we’ve got enough availability that people don’t have to wait quite so long to come in to get service. We just need volunteers, and to do that, to be able to expand that little bit. So, those are our immediate goals.

How To Support & Donate WCRS

Asher: That’s awesome. I love that! The Wheelchair Repair Mobile. Be able to go around helping people fix their wheelchairs and stuff. That’s a great idea. How can people support your work or get involved in that effort, whether it’s through volunteering or anything else, and if listeners wanna learn more?

West: Yeah, definitely. Hit us up. Come check out our website; “www.wheelchairrepair.org”. Oregon Spinal Cord Injury’s website is; “oregonsci.org”. So, check us out definitely. We’d love your visit to the shop. We’d love a referral if you know somebody that needs preventative maintenance or simple repairs, come to us. You can also schedule an appointment. So, while we don’t have a van Tyler, and there’s another person, that will come to people’s homes and provide service to their chair there in their space. Donations; if you have a third wheelchair that is in good condition, let us know. We will definitely put it to use and get it to somebody who needs it. Donations in dollars; if you wanna become a monthly donor to this work, again, reach out. Those donations would go through the parent organization, Oregon Spinal Cord Injury Connection, and be directed to this work. Honestly, the idea of having a mobile unit is a longer term goal. But, if somebody does have a van, or wants to donate, knows a car dealership that has way too many cars, we would receive a donation and get that program moving in the right direction. So, those are some of the big things that come to mind. Also, I’ll just say one other thing, and Tyler I think I’m stealing your thunder here, but like tools, or pieces like shock vac, air compressor, ladder… there are things that we need, to do the work. So, that would be another way that people could donate or support our work.

Final Takeaways & Wrap Up

Asher: Awesome. Thank you so much, West!听 Finally, last question, if listeners are to remember one thing from this conversation, what would you want it to be? I’ll start with you, Tyler, and then we can end off with West on that.

Tyler: I’m gonna get a little philosophical with this answer, to kinda close out. I think the biggest thing is; I was mentioning how I got pulled into this work, and I kinda joke about it as being “pulled in”, because I didn’t have any connection. But, I hope that everyone out there can find a way where your particular skill set and interests can be helpful to someone. It’s such a cool thing to have these moments of, “Oh, I can help with that,” and then you find out there’s all these people who you can help. I think that it’s been really just such a joy to get to work with everyone and find a place where you get to be useful. It’s a really great feeling. I also know times are tough and not everyone has the capacity to spend a whole bunch of free time volunteering and stuff like that. But, even still, there are still so many ways where people can get plugged in. So, I hope everyone finds that thing, that lights them up. I also secretly hope that it’s repairing wheelchairs and that you’ll come volunteer for us. But, whatever it is, that’s just a really exciting thing to see.

West: And if Tyler was philosophical, I’ll be very practical. “www.wheelchairrepair.org”. Check it out and come visit our shop. We’re excited about this work and we wanna share that with y’all.

Asher: Awesome. Thank you guys so much, West and Tyler. Once again, from the Wheelchair Repair Shop and also from the Oregon Spinal Injury Coalition. Thank you guys so much for the work that you guys do and maybe we’ll hear from you guys in a year to see how it’s going and if you guys got any more wins for the Spinal Cord Injury and Disability community. Appreciate you guys so much. Thank you so much for interviewing with us!

West: Thanks, Asher!

Tyler: Yeah, thanks for inviting us on. This has been really fun!

Outro

Asher: Thank you for listening to Let’s Talk!, 抖阴福利导航’s broadcast about disability culture. Find more information and resources concerning this episode and others at pcc.edu/dca. This episode was produced by the Let’s Talk! Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resource Department, and the 抖阴福利导航 Multimedia Department. We air new episodes on our ,听our Spotify channel, on , and .

Episode Transcript

Transcript edited by Hannah “Asher” Sham

Introduction

Kylo: You’re listening to Let’s Talk! Let’s Talk! is a digital space for students at 抖阴福利导航 experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers, and do not necessarily reflect the opinions or positions of 抖阴福利导航, 抖阴福利导航 Foundation, or our community partners. We broadcast on our home website, , on Spotify, on听, and .

Course Tagging

Miri: Hello, everybody! My name is Miri, and today’s episode of Let’s Talk! is an extra special double feature. Starting things off, I’ll be talking to our newest associate, Elianna about the efforts at 抖阴福利导航 to implement a course tagging system intended to increase accessibility and clarify expectations for a course before signing up for it. Then we’ll hand it over to our friend Anne Verduin, who will be discussing ABLE accounts, what they are, and how they can benefit you with her special guest, Laura Halsey. So make yourself some tea and enjoy today’s episode! Thank you so much for talking to me about this today. Would you start by introducing yourself with your name, pronouns, major, occupation, that sort of thing?听

Elianna: Hello, my name is Elianna. I’m currently a student at PSU. I’m in the Urban and Public Affairs program, and I’m in the Honors College as well. My, my undergraduate thesis is on cooperative housing. I work here as an advocate, and then I do some dog sitting and dog walking. I hope to get a real job once my Medicare timeline starts hitting something, ’cause then I need to work, like, 40 hours a week or something to keep my Medicare. And my pronouns are she/they.听

Miri: Awesome. And by here, do you mean work at PSU or 抖阴福利导航?

Elianna: I work at 抖阴福利导航.听

Miri: Awesome. So you are here to talk about your course tagging project that you and others have been working on, correct?听

Elianna: Yes.听

Miri: So what is course tagging? ‘Cause I know most people have never even heard of that.听

Elianna: So I got the idea — I actually started working for AEDR because of course tagging, so the id- it was my idea, ’cause it’s like as someone with ADHD, I found that there were, like, certain classes just by the way that they were structured and, like, how we used certain materials, I had a much easier time keeping up with classes. I came up –I have a STEM associate’s, so it’s like, a lot of biology, a lot of math, a lot of chemistry. So it’s like there were certain classes that they would have a packet, and I really like this kind of pre-printed packet. It was like the notes were already kind of there, and then you would fill in, and then you could hold on to those notes. And it was so much easier for me to do that rather than being in classes where I had to, like, come up with the notes wholesale. Where I had to, like, look up to the board, look down, like copy down whatever kind of graph or other kind of drawing was on the board and then also fill in notes. And that was just so much more work for me as someone with ADHD, and it made it so much more stressful, and I was like, missing parts of the lecture because I was trying to focus on copying down what was on the board, and that just wasn’t good for me. But then it’s like-听

Miri: It’s a lot of attention that you have to pay to something that is not just learning.听

Elianna: Yeah, so it’s like, but that isn’t really, like, something that’s available on the course description currently. You know, there’s actually a lot of issues with professors not uploading their syllabus. And there is a possibility right now for professors to fill in a course description, but it’s very, like, a blank slate for them, and they wouldn’t even know possibly what even to write in of, like, how to describe their class or how to describe their course in terms of, like, physically being in the course and what kind of students could expect from, like, their routine of being in the class. And coming up in the Gateway to College program, we had this one math teacher where you didn’t really have a choice about what math teacher you had, and she had the packets. And I really loved this teacher, but I was one of the few people who did.听

Miri: Interesting.听

Elianna: Apparently, a lot of other people didn’t really like her. They found her very strict, and they found her very this, that, or the other thing. I didn’t. Maybe it’s because I came up in the South with, you know, more strict teachers of, higher expectation teachers. So it’s like her was nothing to me, but it’s like I genuinely did not find her to be at all a hardass that other people did. And so but even outside of that, there was one girl in my Gateway to College program who really did not gel with the learning style and the teaching style of this class, and she had to take it multiple times and it was like tears multiple times a week from just how much this class stressed her out and just how incompatible it was. And it really is this belief that, you know, I have this belief that education should not be suffering. Like I know in college there really is kind of like this idea of like, “Yeah, college, you’re gonna live off a Cup Noodle and get sick off of living off of Cup Noodle, and then you’re gonna party hard ’cause you worked hard, and it’s gonna make you sick. And then you’re gonna take all these classes, and you’re gonna wanna kill yourself.” And it’s You know, it’s like this kind of like normalization, even valorization of the suffering of getting a higher education, and it’s like that shouldn’t be the thing. Like, that really is something we talk about in disability culture, which is, you know, why should this thing be suffering? Why should this thing, you know, that has barriers for people, this is something we choose to have because of how we choose to set up our societies. So, and then even like not as, as a disabled person, like even if you have like jobs going on, or if you have kids, if you have other kind of like caretaking responsibilities or if you… you know, there’s all sorts of things people could have going on in their lives that’s gonna hinder them from getting an education. So the point of this is that, you know, the tagging project is we’re gonna give, we’re gonna have a shared language list of like terms of descriptors for teachers to then select, and then they don’t have to type up something whole cloth. And then everyone can have a better idea of what to expect when they’re entering, when they’re choosing classes, and then they can hopefully pick something that they eventually learn, “Oh, I like it when a class does this more, and I’m not as happy when a class does that.” And then they can better pick their course loads. Or even if they don’t have a choice, then they can go like, “I know this class is gonna be difficult for me in X, Y, Z reasons, so I should, you know, contact with the teacher, see if I can work out accommodations with them, talk with the disability resource center to make sure I get the accommodations from there. And then I can appropriately workload because I know this is gonna be difficult for me. It’s gonna take more energy. I should not take like four classes or three classes. Maybe I should just take two or focus all my time on this one.” And then that means that people aren’t wasting their time and stressing themselves out, and then it costs money to go to school, so then they’re saving their money as well by choosing something that’s not, that they have more awareness of, and they can better either pick classes that they’re gonna like more or better regulate their time and stress levels.

Miri: Absolutely. And besides people with life things getting in the way, like kids or disability or things- different brains just have different ways of absorbing information. Like I, personally, am horrible at doing busy work homework. I will just not do it. I will get, you know, 98% on tests and then get 20% on homework. But if it’s project-based homework, like something where I get to use my creative side, use problem-solving, come up with my own answers and solutions, it’s great, and I do a great job. And it’s much easier for me. So having project-based classes is vastly preferable to having busywork-based classes, and that would be a very nice thing to know going into a class instead of having to figure out in the first couple weeks.

Elianna: Yeah, and then looking at this from the teacher perspective as well, it means that it’ll be more likely that they’ll get students that work well with their class. And, uh, then they don’t have to worry so much about like, oh, now there’s a student in my class who is drowning in the work or is like really lost or really stressed out. And then it’s like we’re, you know, X many weeks into the term, and there’s only so much time that the student has to turn stuff around or anything like that. So it’s, you know, it helps select for, like, teachers I’m sure find a certain satisfaction from watching a student be challenged and then overcoming that challenge.

Miri: Absolutely.听

Elianna: I don’t imagine teachers like watching students just suffer. And then-听

Miri: One would really hope not, at least.听

Elianna: Well, yeah, one would hope not. And then it also means that students have another way of seeing what a class is going to be like without having to rely on very unreliable r- websites, like Rate My Professor, which can be extremely biased.听

Miri: Yeah, ’cause the people who go on that are people who love the professor or people who really hated the professor.听

Elianna: Yeah. And then it’s, yeah, it’s, you know, then you’re still wondering, like, what is this class gonna be like? What did the bias say for this person? So then it’s, it’s a much more in-house and controlled, and then people, you know, the teacher can represent themselves without having to type up a whole cloth description.

Miri: So how would that be implemented for teachers? Like, both practically in when are they given time and opportunity to do this, and how is it presented to them in a way where they aren’t feeling like they are going to be forced to narrow their own education ability?听

Elianna: Uh, well, it’s like, you know, there’s still in kind of discussion. I’m currently stalled out because of I, I see you have a later question here about Workday. Uh, so it’s like I can’t really do much right now because the people who are doing the shift over to Workday don’t even know what Workday can do in regards to this. And they’re not even gonna meet with me to give me a green light to send out my surveys so then I can then go back and talk to the teachers to get a better idea from them. Yeah, and then it’s allegedly the new, like, course description on Workday is two years away, so.听

Miri: Yeah, the current plan is for the work- the student-facing side of Workday stuff to be, what, what is it, what would that be, 2027 school year? Something like that.听

Elianna: Yeah, 2027, something like that.听

Miri: Which is a long way off.

Elianna: It’s a long way off and not long, not a long way off at all.听

Miri: Yeah.听

Elianna: So it’s, you know, I’m really flexible with it, but the idea is, I guess, we’re gonna have, like, meetings of shared language, then everyone knows what we’re talking about, and then we would, like, let them, like, check off from the list, you know, what they think applies or what they believe would apply. And they can add little blurbs to it to add more description if they want. It’s kind of like giving them a structure that they can work off of and then add caveats or other kind of description if they want, and then another, like, big box I’m thinking that they could type in more information that they would want to put in. And I know that it’s like the professors need to meet certain criteria for getting their syllabus done. And before they can upload it, and that can be one of the barriers to them uploading their syllabus to the course description page.听

Miri: Oh, to make sure that they have actually gone through and filled out the information?

Elianna: Yeah, so it’s like the idea with this is that it’s more flexible and it’s more in their court. And I hope that by making it as easy as possible, it is less of a chore for them, and it really is like, it’s a tool that they can use for their own, you know, autonomy and representation and it becomes something positive for professors. That really is my hope with this, is that this would be mutually beneficial for students and for professors.听

Miri: I agree. And it sounds like it would be, especially given that much autonomy. ‘Cause the… Okay, so the project title involves tagging. So is it going to be a tagging system like what we are familiar with in other softwares like Twitter, Facebook, Tumblr, that kind of thing, where you can sort by tags or Archive of Our Own, I guess?

Elianna: Yeah. Well, it’s like that’s… Honestly, I was thinking more like Archive of Our Own when I was thinking of this idea. But it’s like, yeah, it’s… I’m not a software engineer or anything like that, so I can’t really speak to that as well, so I’m really flexible in how we get this thing worked out, just so long as we get it worked out. I know that we currently do have a lot of filters for, like, what day is it on? Is it in person? Is it on campus? Which campus?听

Miri: So you’d be hoping to add things that are, like, filter by heavy homework, more test-oriented, more lecture-oriented, more practice-oriented, that kind of thing?听

Elianna: Yeah, it’s like that would be nice, and then it would really help prevent people from, like, looking at a whole big list of classes that aren’t gonna be applicable to them. Uh, but otherwise, I am flexible on it, where it’s, you know, maybe they filter it out, maybe they don’t, ’cause I… That’s certainly been a frustration of mine looking for classes at PSU and stuff, where it’s like I need something to be in person. Like, I really just cannot do remote learning. Like, I need to be in person talking and working with people to be able to focus.

Miri: Yes. Yeah.听

Elianna: So, and-听

Miri: In-person classes are so much easier for a lot of people.听

Elianna: Yeah. So it’s, you know, and then it’s like, oh, there’s no classes available for the class I’m looking for in person. So it, it really is kind of like, you know, how much runaround is the, are the students gonna have with filtering things out or just kind of going, like, maybe, like, ranked, like, levels of, like, I could tolerate this, or I could, you know, what is going to be in or out of the system for them, and how the, what Workday can do is something I’m, I’m flexible for. Like, I don’t wanna be married to anything and then be, like, so devastated that we can’t do it.听

Miri: Yeah, that’s fair.听

Elianna: I just wanna get, like, labels done at least. Bare minimum, get labels. It’d be nice if we can filter some stuff out, if the people really are like, “I cannot do this class, and I must have, you know, this element in a class.”听

Miri: So the main focus of the project right now is to develop that shared language for teachers to be able to use?听

Elianna: Yeah, I’d like to be able to do that, but I can’t get the green light for putting out my survey that I made before getting the go-ahead from the people at Workday that I, that they can do it or they would be able to do it, so. I have a whole survey. I’m not sure if Silver, who did the art for my posters, uh, is still with us. Uh, thank you, Silver, very much for doing these posters. They’re very pretty. It’s not, you know, I can’t do anything right now. I’m really, I’m stalled out right now until I can get the go-ahead from the people at Workday that I can send out my surveys to know what students would want to know. Because I know I have a lot of blind spots as someone who came up in STEM, and I didn’t have as much of, like, an arts background, or language background or many of the other kind of, like, especially the, like, the trade programs that we have here. Like, there’s so much I don’t know about the experience of others. So it, that’s why I made the survey as well, is that there’s some tags I knew of, but then there’s also, like, oh, other people might wanna put in their ideas into the hat, and then we can see, like, if the tags I’ve already presented have certain levels of popularity.听

Miri: So this will be a public-facing survey, like something that would be听

viewable-听

Elianna: Yeah, it’s gonna, like, post it up… oh, sorry听

Miri: Oh, uh, it’ll be fillable by students?听

Elianna: Yeah. So it’s like I have posters, I was gonna post them up around the campuses, and then it would go out in, like, our newsletter. I kept trying to remember if it’s still, like, Panther Talk or something like that. Um, and then people could go onto the survey, and they can fill out… like, I already have some tags up there. They can check to go, like, “Oh, this would be nice. Oh, this would be nice.” And then I have, like, a give me your own ideas section at the bottom, so.听

Miri: That’s super cool. I had assumed that it was going to be a survey for teachers of, like, how would you rate yourself? But it being student-faced is extra interesting that you can’t get a thumbs up, green light for it.听

Elianna: So our supervisor, Kayla, is concerned about getting students’ hopes up听

Miri: Yeah.

Elianna: By having this survey go out and then having it not come to fruition. So that’s why I can’t send out the student-facing survey.

Miri: Interesting. Yeah. It would be a shame for people to get excited about this and then have someone be like, “Oh, actually, unfortunately, this doesn’t work,” because mysterious back-end things that only four people understand. Interesting. So have you gotten teachers involved in the process so far?听

Elianna: I’ve spoken with some teachers. Um, I have went to the teachers’ union meeting to talk about it with them like, couple summers ago. Uh, and there was… It was overall okay. Uh, there were some concerns about, like, with the shared language of, like, a student signs up for a class hoping that, you know, it’s gonna look like this, but then it looks like something else. So, and that’s kind of the point of, like, trying to have as much shared language as possible and have, like, you know, even if there’s a term, we can have a description, like, pop up still of what this term means. Then, like, really making sure that, you know, we protect our teachers. And then they were also concerned about, like, time or, like, what if a teacher wants to be more experimental and they wanna try things out? Then it’s like, oh, well, then you could still, like, flip it, like, like, say yes to the tag, and then go, “I’m trying this out. I’m flexible on things changing throughout the term,” or something like that. It really is just kind of like giving people the opportunity to represent themselves as easily as possible and giving them a scaffolding to.

Miri: Represent themselves, and also increasing transparency between both teachers and students ’cause the students will be like, “Oh, well, this is exactly what I’m looking for. I will take it with this teacher, and then maybe I’ll take more class with this teacher.”听

Elianna: Yeah.听

Miri: And the teacher will be able to represent themself as, like, “This is how I like to teach classes. I like teaching students who do well with this kind of thing and not who suffer with this kind of thing.”听

Elianna: Yeah, and it’s like I’ve had that experience. It’s like I had a math teacher right after I had my initial teacher at the Gateway to College program, and he was very, like, well-liked. He was, uh, very highly recommended. But he didn’t have the packet, so I was wasting time, like, writing down notes and everything. And I didn’t feel as secure in my grasp of the content of the class as I had with my previous teacher. I still did, I still got an A in the class, and he was a very lovely person.听

Miri: Congratulations.听

Elianna: So it’s not like judging him as a teacher, as a person, it just wasn’t as compatible of, of a fit.

Miri: Yeah. That, that’s the other thing I was thinking about, is worrying that, which apparently the teachers in the union meeting were worrying about too, is worrying about making teachers feel judged. So having them be able to represent themselves instead of going just through, you know, clicking, “Yes, I do this. No, I don’t do that,” is- … uh, uh, I think is a strength to alleviate that concern.听

Elianna: Yeah. It really is just kind of like giving folks like, “Okay, here are like some things students would wanna know beforehand.”听

Elianna: And you can click on this, and you can add whatever you want to that. So then they’re not doing like, you know, running around in the dark whole cloth descriptions. Yeah. And currently there’s like no, uh, most teachers don’t write a description. And there were also some concerns at, at the union meeting that, are they going to be paid for their time that they put into writing their descriptions and selecting things, so鈥μ�

Miri: Yeah. I hope so. Teachers deserve to get paid for–听

Elianna: They do, yeah

Miri: –all the work they do. My wife is a teacher, and while her, you know, hourly rate is pretty good, it’s all for classroom work and not all the extra work that you have to do outside the classroom. So when you average it out, the pay ends up being pretty low. She works for the district, not for 抖阴福利导航, but that is still a, a, a very valid concern for the union. Okay. So, so currently course descriptions are in the class catalog. Would this be in the same place?听

Elianna: I’m kinda hoping so. So it’s, you know, it would probably be easier to, I don’t know what the software is gonna look like. I’m guessing it might be easier to kinda keep the course catalog, and then it would just be like in there. You know, it is just one of those things of where it’s like I wanna be as flexible as possible with this. I don’t know about software engineering. I really just want whatever, like there are certain hopes that I have, the things I’d like to have, but I’m not like depending on it. I just need to get like the l- the ingredient label. The class ingredient label needs to be in there–

Miri: Yeah, exactly.听

Elianna: –Just somehow, some way.听

Miri: Maximum dose of sodium.听

Elianna: Yes.听

Miri: Uh, so you mentioned that you went to this meeting a few summers ago. How long have you been working on this project?听

Elianna: Uh, it’s been a while. It really is like with a lot of the projects that I work on, it’s waiting for other people to get back to me. So it’s… Like, and then I also, I wanna try to do this for PSU as well, so I have done some work on creating, like, a PSU thing, but it’s a lot more difficult for me to do stuff on the PSU side because I’m not an official employee. I’m just, like, some person wandering around who’s also a student. Um, but then it would be nice to have, you know, if this tagging project and this system works really well for 抖阴福利导航, then whatever, like, university that they go to, whether it’s PSU, OSU, or U of O, then this system can follow them into these different universities and make life easier continuously as people seek their education.

Miri: Yeah, that’d be fantastic.听

Elianna: So it’s, you know, it really is just, like, a lot of waiting on people. So it’s like my main contact for that at PSU was the Associated Students Union. So, like, in the meantime while waiting for Workday to get back to me it’s been, like, “Oh, let me make sure I’m in contact,” or like, “I have the green light and support from the student union. Let me make sure that I have support from these other people,” and that was, like, part of, like, filling out my proposal sheet for Workday, people who work on Workday, and getting that filled out. So that’s all filled out. It really is just kind of like waiting now.听

Miri: Hurry up and wait.听

Elianna: It’s a lot of waiting. And so I have a lot of other projects I’m working on at AEDR to kind of fill that time while I wait for the two years it’s going to take for Workday to finally–听

Miri: It is a very long transition.听

Elianna: Yeah. So I, I imagine my workload’s gonna uptick once Workday figures out, once they get to that point of working on the course catalog page and the sign up and everything like that, so.

Miri: Yeah, when whatever changes to the back end are more concretely in place. That would be very nice. Yeah, I hope so. Is there any more on this that you have to, to share with our wonderful listeners?听

Elianna: Not per se, I don’t think right now. It really is just kind of like, you know, hopefully this thing gets implemented and hopefully we can make education so much less stressful for students. And then teachers will have a greater feeling of agency and a greater feeling of transparency with their classes, and then they can almost like pre-select for students who will thrive in their classes. It’ll make things easier. Like that was one of the things that was brought up, it’s like what if a teacher ends up being judged for being like the mean teacher? And it’s like the teacher I loved was the mean teacher. You will find your students.听

Miri: That’s a good point, yeah.听

Elianna: So yeah, it really is, you know, it really isn’t that difficult I don’t think, but I’m not a software engineer and I’m not the people working on Workday. I don’t know what horrors I have yet to come across moving forward.听

Miri: I, I am a software engineer. That’s what I graduated from 抖阴福利导航 in. And man, let me tell you, working, building something from scratch yourself is often so much easier than trying to implement something made by somebody else. Like y- you know, you’re talking about this right now and I’m like, “Oh, this would be s- incredibly easy to do. You would just add a text box here and then you’d have it push to this.” And then I’m like, “Well, in Workday, who knows? You might have to like get out some chalk and some candles, draw a little pentagram on the ground, summon some ancient demon of Workday knowledge.” So I hope the transition does allow for this. Was it something that was impossible in the previous system or was it just-听

Elianna: I don’t know if it was impossible in the previous system. I think part of what did give my tagging system more of a boost was that why don’t we j- ’cause there was complaints about the previous system from some of the people who work in our tech, uh, department. So it’s like, “Oh, why don’t we just wait for the overhaul to do this thing? Then it can be part of the new overhaul instead of spending this time trying to get it to work in our current system which is just gonna go away.”听

Miri: Yeah, that makes sense. Still a shame that it has to take that time to be implemented though. And I hope that this being now shared in a slightly more public forum will spur some people to make sure that this is going to be an option going into the overhaul and all the changes that are gonna be made to our systems.听

Elianna: Yeah, so it’s very-听

Miri: ‘Cause now people can hear about it and people can be like, “Oh, that’s a really cool idea.” Or if someone- Yeah … you know, if someone working on it hasn’t heard about it th- before, they’re like, “Oh yeah, I could probably figure out how to do that in, y’know, a half a work week,” that kind of thing. So-听

Elianna: Well, it’s like I’ve talked with folks who run the YES to College, the Gateway to College Future Connect folks, and they’re really excited about this ’cause they know that they have students in their programs who really have struggled before and who have a lot on their plate already when it comes to getting an education. So, this tagging project would really make it so much easier for their students to get an education. Some of them have had bad experience with education in the past, so this would really significantly reduce their students’ anxiety levels and other issues around getting an education. It is an equity issue. It is an accessibility issue. So, it really is something that I hope can happen for this school and for schools in Oregon and possibly even outside of Oregon. It really is just, “why don’t we do things that make it easier?”. For podcast listeners, I’m not sure if you also know this term, but it’s the “curb cut effect”, where we do something to help disabled people and then it ends up helping so many more people. I had this really excellent teacher for statistics and what he did is that he would record his lecture every day. There was a woman in my class who was also a mom, who worked, and sometimes she would have to be called out of the class to go take care of her kid. But, then this way she could look at the recorded lecture once she was out of the class and keep up with everyone just fine. So, someone in her position where she might have to leave the class sometimes; knowing that there’s a recorded lecture that went over what the information that she needs to keep up with and what the homework’s gonna be about, having that capacity for her to do that makes it so much easier for her to get an education and be a parent.

Miri: Absolutely. We talked about something similar in an episode I made a few months ago with some other teachers including Jesse Mejia, who is a teacher at 抖阴福利导航. He said that one of his dream things, to have in all classrooms, is the ability to record good audio and good video for every class so it can be uploaded and hosted and reviewed by people who can’t make it. Because, like you were saying, that is incredibly helpful for people who are a mom and have to go take care of their kid, or have a job, or have a chronic illness and can’t be there very often. Or, if you miss the bus one day and can’t make it to class, then you can just go home and instead of it being a defeat where you are a day behind and calculably an amount of money behind for the hours that you’ve missed, you can just go home and catch up.听

Elianna: Yeah. Then there’s also certain rules about how many classes you can miss, and it’s not even something that’s always in the teacher’s control. I had a former classmate in the Gateway to College program where she was previously in the Gateway to College program, but then she got like appendicitis or had to get some kind of like surgery done.听

Miri: Yeah, yeah.听

Elianna: She had to stay multiple days home in bed rest, but the rule with Gateway to College, at least at that time, was if you miss X number of days you have to leave the program. So, it wasn’t even like she purposefully missed those days, she was just sick and needed bed rest from her surgery for some kind of operation that she had. This way if there were recorded lectures, then someone could still keep up while on bed rest at home.听

Miri: Yeah, I have a friend who had the same kind of thing happen. They had a major surgery, had to be in bed rest for four or five weeks, and some of their professors and their online classes could obviously accommodate to some extent, but they had a teacher at the time who just absolutely refused and was like, “No, I will not send you the extra material. If you are going to miss time. Sucks to be you.”. So, all those resources being available to people remotely is hugely valuable. That is one thing that is tagged on the terrible website of “Rate My Professor”, of like “attendance mandatory”, that kind of thing. ‘Cause there are some classes where there’s just not a lot you can do from home. When I was working in my “microcontrollers class”, you can do a lot of stuff from home, but especially once you’re in the capstone part and everyone’s working together on building the physical things, it just is more difficult. So, if you didn’t know that going into the class and you had a lot of time commitments otherwise, then you would struggle undeservedly. Apparently 抖阴福利导航 also has a guitar building class at Sylvania, which I was gonna take and then the pandemic happened, then they shut that down, ’cause obviously that has to be an in-person class. So, having things very clearly tagged as mandatory or– not mandatory, but– attendance strongly recommended to required is just helpful for everybody.听

Elianna: Yeah. And it’s like-听

Miri: And not hard to do…听

Elianna: I wonder like how much this has changed like post-pandemic when everyone was kind of remote and how comfortable professors are doing a recording or helping people be from home considering we had like a massive period of time where that was the only option. So, interesting point of view from that perspective, I guess. It’s like how much have teachers changed from the pandemic in their expectations of behavior and how they run their classes, but I guess that’s beside the point of the tagging project.听

Miri: Yeah. I mean, everything’s intersectional, right? All equity is related to itself in some way or another. Yeah, this is an excellent project, and I hope that it can get some wheels turning and get moving along a little faster, and I hope that there’s things that I, or others, can do to make sure that it happens.听

Elianna: I don’t know if- Should I give my old stats professor, who I loved, a shout-out? His name is Ian Nicolas. I think he usually teaches at Sylvania. So, yeah, if you need to take a stats class, I highly recommend Ian’s stats class. He’s a really cool guy.听

Miri: Yeah. You go, Ian!听

Elianna: And, I loved his class!听

Miri: Nice! That’s awesome! So, yeah, thank you very much for talking to me about this.听

Elianna: And thank you for asking about it.

Miri: Oh, yeah! Of course! Yeah, this was a super interesting conversation to have and a really interesting project to be working on, and I will definitely connect with you sometime in the future to see an update on how it’s going.听

Elianna: Okay! Hope we’ll have an update. We’ll see what happens.

ABLE Accounts

Anne: Hello, and thank you for tuning in to this episode of Let’s Talk!. I’m your host, Anne Verduin. Let’s talk “ABLE Accounts”. What are they? Why would you want one? Why are they important? An “ABLE Account” is a savings account that has a checking account aspect to it that can be obtained through possibly your state or possibly a national bank such as Fifth Third, where you can save money and not have to worry about losing your benefits. Did you know that if you count on government benefits, such as food stamps or Medicaid, if you start saving money and have two thousand dollars or more in assets, the government can, and will, discontinue your benefits, because you have more money than you’re allowed to have and still be on those benefits? Until I needed benefits like that, I didn’t think it mattered. When I started counting on those benefits, I didn’t wanna lose them in the event of some good fortune or finding the right job and having the ability to save money. So, I made the choice to open an ABLE Account. In today’s episode, I sit down with a woman who helped me decide to open my ABLE Account, and we talk about why they’re important for people with disabilities to at least know about and possibly even consider opening one. I hope you’ll find this conversation informative. With me is Laura Halsey, who helped me decide to open my ABLE Account. Hi, Laura! Thank you for being with us today!听

Lara: Thank you for having me! I’m excited!听

Anne: So, can you tell us about yourself and how you’re familiar with ABLE Accounts?听

Lara: Sure, yeah! Currently, I work as an Episcopal Priest for a church here in Portland. And, I know about ABLE accounts because about 10-ish years ago, before I went to seminary, I worked as a caregiver for a place called L’Arche, that is a international federation of homes, that provide care of some kind and intentional community for adults with intellectual disabilities. I lived and worked there for five years, and so I knew about them from that.

Anne: So, you’re pretty familiar from a job previous to you going into the ministry what people with disabilities need and deserve and are getting.听

Lara: Certainly. I know I’m not entirely an expert, but I’m very familiar with the complex reality of navigating the systems when you are on disability of some kind.

Anne: So, what are ABLE accounts, even, for those listeners who are not familiar with it; have never heard of them? Let’s just talk about the definition of the term and what they are.听

Lara: Sure, yeah. The way that I learned about them, as part of my role in L’Arche, I managed the finances of some of what we call core members. For them, what would happen almost every month for a few core members, ’cause so often many people on disability, not exactly high earners in terms of how much income they have.

Anne: They’re low income, you would consider them.听

Lara: Yeah, yeah. But, we did have a few core members who worked as artists and they would make these big art sales, and they’d have a large amount of money, and we would be under pressure to “spend down”, is what we called it, the money that they have.

Anne: Yeah. Because, the way it works is that for people on SSI, SSDI, food stamps, Medicaid; they could lose their benefits if they have over X number of dollars to their name, correct?听

Lara: Yes. They can lose their benefits, which they relied on if, in our case at the time, they had over $2,000 in their account, which is really not that much money.

Anne: You can’t save that-听

Lara: Right…听

Anne: You can’t save… $2,000 is nothing compared to, what you might want to say, graduate from college and make in your job.听

Lara: Sure.听

Anne: You wanna save a nest egg, except if you’ve got $2,500 in assets, it’s within the government’s power to look at that and say, “Uh, you do not qualify for benefits anymore. You have too much money.”.听

Lara: Which quite frankly is ridiculous on a lot of levels. But, not the least of which is what if you… So, you have a windfall one month, but not the next. $2,000 is beneficial money, but it’s not life-changing money. So, if you wanted to save up to go on this lifelong trip you’d hoped to go on, or if you wanted to, um-听

Anne: Have money saved up for the long-term future?

Lara: Yeah. Or, maybe, next month nobody’s buying art and you need a little bit more grocery money. Like-听

Anne: And, then what? You have to start all over again? So, you can try to apply for benefits, which would take longer than you wanna wait to get your money?

Lara: Yes. Yeah.

Anne: Or, more than you can wait to get your money. Because, that process of being… “processed” and “restarted”, I’m sure, is not a quick process.

Lara: Oh, yeah, I can’t… I mean, I haven’t had to go through the process myself. I’ve tried to look into it, and even just trying to figure it out on your own on the internet is so complicated. And, it kinda feels like…听

Anne: So, it’s overwhelming to even say, “They cut my benefits and now I need them again. How do I reapply?”.

Lara: Yes. Yeah, yeah. For sure. So, right when I was working at L’Arche, the people I was working with, who had this money and were spending down. There was a Supreme Court case that essentially said that was unconstitutional. However, the way these things work in reality is not that, like, “Oh, the Supreme Court said this. Suddenly we have the infrastructure. We have the… the way to make it happen.”.听

Anne: It’s like, “we’ll eventually enforce this law when we figure out how.”.听

Lara: Yeah. And, so, from what I understand it; a group of parents, who had children with disabilities, met with their congress people. Came together and came up with this act of, “here’s how you can have a savings account that’s precluded from affecting your benefits.”. And it is less complicated than a trust, for instance. You also generally have to have a lot more money for a trust. Just a disclaimer, I am not a financial person at all. These are just things I learned through experience. So, talk to a financial planner if you’re gonna get that actually set up.听

Anne: Yeah, we definitely… I personally, I won’t speak for Laura, but I personally think that an ABLE Account is a great thing to consider. But, before you make a decision, a conversation with a certified financial planner, which neither of us are, might be a good idea.听

Lara: Well, that’s what you ended up doing. Right? When I brought it up, you talked to a few different- were you able to get it at your bank?听

Anne: Not my bank. What I chose to do was; as I looked at Oregon’s ABLE account documents or resources, I believe what they call the plan booklet. I discovered that if you are not a resident of Oregon, you are not allowed to have an “Oregon-based” ABLE Account.听

Elianna: Oh…

Anne: Well, I know in my- I say “long-term”, but it may be closer to “short-term”. It may be two, three, five years from now…听

Elianna: Mm…听

Anne: I’ll be leaving Oregon and going to a different state. I’ll be moving to a better support system than I expect to have in two, three, four, five years. My support system here is getting older and they’re eventually gonna die on me, or become so ill that they just can’t help me anymore. So, I will not be… staying in Oregon forever. So, I decided let me open it in Illinois to begin with.听

Lara: Oh, yeah…听

Anne: So, it’s definitely not within my bank.听

Lara: Yeah. Okay.

Anne: I probably should have checked to see if… my credit union could have opened an ABLE Account for me, but I don’t know that they can.听

Lara: I didn’t know about the state delineation of it. Um-听

Anne: Well, not all states have that, but we live in a state that does.听

Lara: Interesting. Well, I do know that Oregon, more than other states– not more than all other states– but more than some other states, is more invested in, um-听

Anne: Its own resources?听

Lara: Public health in general. But, yeah. In state-led resources. So…

Anne: Yeah. Well, Illinois is one of those states that says there are some tax incentives and some benefits to having an ABLE Account in Illinois and living in Illinois. But, if you don’t live in Illinois, we’re not gonna say, “You can’t have an ABLE Account here.”.听

Lara: Yeah.听

Anne: So, knowing that, that was my state of residence to come-听

Lara: Yeah.

Anne: And since they don’t have those rules, I said, “Let me open an ABLE Account in Illinois to begin with, so that when it comes time to move, that’s one less thing I have to worry about. How am I gonna close out my Oregon ABLE Account and open an Illinois ABLE Account? No, let’s just open it in the state I know I-”听

Lara: Yeah

Anne: “am going to in the first place.”听

Lara: That makes a lot of sense.听

Anne: So, an ABLE Account is a savings account that you can have several thousand dollars, and is not something that the government can cut your benefits because of.听

Lara: Sure.听

Anne: The initial question was what are ABLE Accounts for people who have never heard of them.

Lara: Yeah. So, it’s an option for other uses. A common use is one of the main impetus behind it; was saving for the ability to retire. That’s not often… Like, h- 401Ks, I think, and IRAs will count against your benefits, but an ABLE Account won’t, so it’s more beneficial in terms of saving for retirement, as everyone should be entitled to do.

Anne: Right. And again, neither Lauren, nor I, have any certification or extensive knowledge on finances, so-听

Lara: Yeah…听

Anne: Check with your financial planner.听

Lara: Most banks have somebody who will… They want you to put your money at their bank, so they will usually work with you to try and figure out how to do that in my experience. I’m personally a bigger fan of credit unions than banks. But, uh-听

Anne: That’s wh- that’s where I bank, at a credit union, and I didn’t ask them if they could, if they have ABLE accounts. Anyway, I think we kinda already answered this. Were ABLE Accounts always available? If not, what did people do?听

Lara: Oh, yeah. In 2014 is when ABLE Accounts were signed into law, which is right about when I started working at L’Arche, actually. But, we still had to… Be mindful of not having a certain amount in the checking account. Most of the core members didn’t have an ABLE account at the time, because it was still fairly new. So, it’s been about, I guess, 12 years, and there’s a lot more infrastructure around it now. Also, probably, a lot more bureaucracy. But, it sounds like you were able to set one up in Illinois without too much difficulty.听

Anne: I personally was. I hope other people can go through it that quickly. There’s a question later on about challenges; but, obviously, they weren’t always available. And, when they didn’t have ABLE accounts, they just had to go through that mess of, “Oh, man, I’ve got too much money. The government pulled my benefits. Well, now I need them again.”. So, now I gotta go through that overwhelming and time-consuming, challenging thing of, “Uh, hello, government. I know I had $3,000 last month, but now I’m down to $300. Can you, like, acknowledge that and help me out?”.听

Lara: Yeah.听

Anne: What a mess.听

Lara: Yeah, for sure. Some of the workarounds before ABLE Accounts included things like trusts or, in the case of one person I knew, a Medical Trust that exclusively paid for them to have premium insurance on top of Medicaid. But, those are a lot more complex to operate and to get-听

Anne: You definitely need a financial planner when you try to do those things.听

Lara: Yes, I think you have to have an executor and then you’re going to a financial planner and a lawyer.听

Anne: And a lawyer, yes! You helped me make the decision to open my ABLE Account. Have you advised other people besides me about ABLE Accounts? I don’t want you to betray anyone’s confidence, but can you tell me anything about how they realized their plan, which did not include an ABLE Account, wasn’t going to work? I think you’ve kind of answered that already.听

Lara: The short answer is “no”. I haven’t really advised anybody about it before. I was just aware of it, because it was coming into being while I was working with people with disabilities. Talking to you was the first time that was, like, relevant information for me to share with someone.听

Anne: But, you, in your job at L’Arche, you opened accounts for people and-听

Lara: Mm, I did not, no.

Anne: Oh, you didn’t? Okay.

Lara: Uh, no. Someone else was responsible for that. Um-听

Anne: You just sort of watched it happen. You watched, uh-听

Lara: Well, I watched the law pass, and I watched the conversation around the rights and needs of people who are receiving some kind of income from disability.听

Anne: Okay. So, you kinda- it was happening while you were there, and you kinda kept your finger on the pulse of it. Because, you were like, “Hey, I work with people who really need this.”.

Lara: Yeah.听

Anne: But, by the time they got theirs, if they got theirs, you weren’t a part of it.听

Lara: No, not the details. Um, that wasn’t really my… We had the benefit of being in a place like L’Arche; is they have their own financial planner and the institution has someone who does the finance stuff. And, I really more managed finances on the individual level of, like, “Hey, this is how much we have to spend this month.”.听

Anne: Or, we have to spend more. They’ve got $2,300. We really need to spend-听

Lara: Or like, what, what, what big purchase do you want?听

Anne: Yeah. Right.听

Lara: Um-听

Anne: What have you always wanted, and it’s always been too expensive for you? Let’s get it for you. ‘Cause, we gotta spend $1,300 here before the government realizes you have $2,300.听

Lara: Right. Right. Exactly. It didn’t happen often, but it did happen often enough for me to be aware that, that was… Uh, a problem… an important metric.听

Anne: Yeah. Have you heard that people have run into challenges trying to open an ABLE Account? And, if so, what might they have been? I think you kinda alluded to this earlier.听

Lara: Yeah. My understanding is that not every state has an ABLE program. But, you are able to, like in your case, there are some international or just some nationally based ABLE programs, or you can open one in another state nearby.

Anne: Yeah, I believe the state that I will be moving to is run by the National ABLE Alliance. So, I don’t think they have their own state ABLE Account Service. Well, I think they do, but it’s not based in Illinois. It’s based in… Wherever the National ABLE Alliance is.听

Lara: So, some banks, from what I understand; I think PNC, Fifth Third, have national ABLE accounts. Like I said, banks want you to give them your money, so they don’t usually make that part very hard. Especially, now, that there has been this… Uh, the- legally the ways have been cleared, so that you’re not being penalized for saving if you do that. So, it sounds like your process went easier. I think being able to; like, for instance, people who don’t have the ability or easy access to computers, that would be a big barrier for a lot of people.

Anne: Or, even if they did have access to a computer, they could get on the internet and If they don’t have a well enough developed mind, due to an intellectual disability; a person with a developmental disability who might have the mind of a 10-year-old when they’re 20… Can that brain comprehend any of this?

Lara: You know, there’s… It’s so difficult to… I mean, there are metrics that professionals use to understand what someone’s perception level is. But, in my experience, you are, kind of, guessing most of the time.听

Anne: Yeah.听

Lara: The people that I worked with; there’s a wide array of different kinds of understanding. So, like, there’s emotional intelligence, there’s… Like, I’m not good at math. Not to diminish the difficulties, but a lot of people can’t get through any of these processes without help. What that help looks like varies and, whether or not, there is comprehension would be pretty difficult to say.

Anne: Even if they understood it, they probably need help and support that they’re doing the right thing, or to make it happen, and-听

Lara: Yeah…听

Anne: if someone doesn’t have a good support system then that could-听

Lara: That certainly that could be a barrier-

Anne: be a problem.听

Lara: Yeah.听

Anne: So, do you have any advice for anyone else considering opening an ABLE Account?

Lara: I just think it’s really important that people know they’re out there, ’cause when I talked to you, you weren’t aware and they’ve been out there for 12 years, and it’s an important resource to have. Personally, took me a while to get around to actually saving for retirement. It’s not something that I think a lot of people, my age and younger… think about very often. And, everybody could benefit from it. Just because, maybe, when you’re 70 or 80, or whatever, you could still work doesn’t mean you should have to.

Anne: Right. There comes a time when you’re getting older, getting a little bit… Your health is getting a little bit more delicate. What are you gonna do? Drop dead at work? Because-听

Lara: Yeah, yeah… Or, do you want your life to be work all the time, you know? Some people have things they wanna do. So, having the ability to save– I think– is an essential resource to have. Even if it’s just a little bit.听

Anne: Personally, my advice to people, who are on benefits and have a disability, is certainly consider opening an ABLE Account. Talk to a financial planner. Talk to someone.听

Lara: Yeah, yeah.

Anne: Consider opening it. I can’t tell you to do it, or not. That’s your decision. But-听

Lara: Yeah…听

Anne: my understanding is, a lot of our listeners are college students. I don’t wanna see you go through all the work of graduating college and then setting out to make your dreams come true, getting that great job that’s in your field, and then all of a sudden you start saving up, you start making money, and the government says, “You know what? You’ve got way too much money for us to continue funding you.” . You count on that health insurance; is that really where you wanna have to spend your money? I mean, you have the right to make that decision. If you’re okay with private pay health insurance, go for it. But, if you would really rather have a place to save money without having to worry about, am I gonna lose my caregiver? Am I gonna lose my Medicaid? Am I gonna lose my food stamps? Am I gonna lose my SSI or SSDI?… Opening an ABLE Account, in my opinion is the best.听

Lara: You have that right and you deserve that right, for sure. The world out there, in particular, in our culture, there is a big gap between when you can get resources and when you have enough money to acquire those resources on your own. And, this is one of the things and there should be many more. But, this is one of the things that can help bridge that gap. We should all have opportunities to save, even if it’s just for something fun.听

Anne: You have a right to decide what you wanna do with your money.听

Lara: Yeah.

Anne: Finally, is there anything that I haven’t asked that you want to make sure that people hear about ABLE Accounts?听

Lara: I mean, look into it. Just do what you can to look into it. Like I said, most banks wanna take your money, so go to a bank and say, “Hey, how can I do this?”. “Fifth Third” and “Fidelity” also will do it. “PNC” are some national banks that have these these savings programs. But, it is worth it.听

Anne: Yeah.听

Lara: And you deserve it!听

Anne: Well, thank you for your time, Lara, and we-听

Lara: Thank you.

Anne: we look forward to it helping a lot of people, as they look at their futures, and realize that they may well end up with more money than the government wants them to have. Well, it’s not the government’s decision, it’s yours. So, yeah…听

Lara: Well, the government has-

Anne: The government has the right to make that decision if you have a lot of assets, but this is why, I believe, you should consider putting those assets in a place where you can’t end up in that situation. Like an ABLE account, or a trust or-听

Lara: For sure.

Anne: The way for us to protect our autonomy around what we do with our money is; consider an ABLE account, consider some kind of trust. Because, even if they are based at a national bank versus a state level; all states have an ABLE Account program of some kind. So-听

Lara: Not all of them do. There’s at least 10 that don’t have their own ABLE Program. So, if you’re in one of those states, you can access the national options. But, most states do have their own program as well. So, you can do a local version if you want. I know I like to bank local, so…

Anne: All right. Well, thanks again, and it’s been great talking to you about this.听

Lara: Thank you.

Outro

Kylo: Thank you for listening to Let’s Talk!, 抖阴福利导航’s broadcast about disability culture. Find more information and resources concerning this episode and others at pcc.edu/dca. This episode was produced by the Let’s Talk! Podcast collective as a collaborative effort between students, the Accessible Education and Disability Resources Department, and the 抖阴福利导航 Multimedia Department. We air new episodes on our , our Spotify channel, , and .

Episode Transcript

Transcript edited by Hannah “Asher” Sham

 

Show Intro

Kylo: You’re listening to Let’s Talk!. Let’s Talk! Is a digital space for students at 抖阴福利导航 experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of 抖阴福利导航, 抖阴福利导航 Foundation, or our community partners. We broadcast on our home website,听 , on Spotify, on , and

Why Accessibility Matters

Asher: Hello, everyone. Welcome to today’s podcast, where we’ll be exploring the importance of accessible education and the people working behind the scenes to ensure that all students have equal opportunities to succeed. Accessibility in education goes far beyond accommodations. It’s about creating environments where students feel supported, empowered, and included. Today, we’ll hear from three professionals who each play a unique role in making that happen. First, we’ll hear from Jeff Larson, the Director of Disability Resources, who helps shape the department’s vision and long-term impact. Next, we’ll hear from Shawn Williams, a counselor and accessibility specialist who works directly with students as they navigate support systems and accommodations. Finally, we’ll hear from Sarah Price, the Alternative Formats Coordinator, who ensures students have access to learning materials in formats that meet their individual needs. Through their perspectives, we’ll gain a better understanding of the challenges students with disabilities face, the support systems available to them, and what the future of accessible education could look like. Let’s begin with Jeff.听

Meet Jeff Larson

Jeff: My name is Jeff Larson. I use he/him pronouns, and I am the Director of Disability Resources听

Asher: Thank you so much for joining me today. Really appreciate you.听

Director Day to Day

Asher: We wanna ask, what does your typical day look like for you in the Accessible Education Department and what do you do?听

Jeff: Yeah, I really appreciated that question because it made me reflect on the fact that I don’t have a typical day. It looks a little bit different every day. But, some common components are a combination of meeting with staff. So, in my role, I oversee and support the student accommodation team. So, that means I work with part-time and full-time counselors, and also our office assistant team. In that role, sometimes there are meetings, oftentimes there are kind of one-off questions or scenarios that come up. That’s actually one of my favorite things about this role, is there will be an opportunity to problem solve or brainstorm something that comes up. So, that’s a big part of my day, is just waiting and hearing of potential scenarios and being able to jump in and provide support to that. But, some other kind of standing experiences that I have in my role is I’m part of the care team. So, I have engagements with that process and supporting the overall campus community. It’s a lot of consultation, collaboration with different campus partners usually around accessibility. I work very closely with our Dean of Inclusive Education, Kayla Parks. It’s a lot of, primarily, staff engagement. But, in my role, one of my responsibilities is resolving accommodation concerns. So, if there’s a scenario that does come up, in many cases, I am the person that meets with that student and tries to understand the situation and provide a resolution. In some cases outside of that framework of supporting students from a, resolving accommodation concern, I also will meet with students to support the team. If someone, has another commitment or a time conflict, then I will also meet directly with students in that initial interaction with our office that typically goes to our practitioners and our counselors, but that’s something I’m able to do as well. So, day-to-day, it looks very different. It’s, sometimes it’s meeting with staff, sometimes it’s meeting with students. Thinking about big picture, how to make the office better. Sometimes it’s those real set meetings for team engagements and that sort of thing. So, every day it looks a little bit different but it’s all around the focus of accessibility.听

Asher: Very nice.听

What Is Care Team

Asher: You mentioned The Care Team. Can you touch very briefly on what The Care Team is and what they do?听

Jeff: Yeah, absolutely. So, the care team is a college-wide resource that helps support students who are navigating, whether it’s a crisis, a high-level concern, or some sort of impact to their overall wellbeing on campus. So, there the team that supports that students through student wellness and as through student care. But, then there is a subset of that program that’s called “The Care Team”, and in that, I work with other people on campus to find resolutions and interventions for students. So, if there’s a student that accessibility is a concern that’s been brought to that team; I’m able to provide a frame of reference of how to maybe provide support for that student, or if we become aware of that concern then we can take that information and be able to follow up with that student and make sure they’re getting all the support and resources that are available through Accessible Education.

Asher: Awesome. Thank you.听

Jeff鈥檚 Career Path

Asher: What drew you to work in accessible or inclusive education?听

Jeff: Yeah. It’s a really great question. I appreciate you for asking, so I can kind of reflect back on my journey and my story. So, I’ve always known from a relatively young age that I was interested in pursuing something in education. I have a lot of family members who have been educators from teachers and principals and things of that nature. So, that’s always something I’ve just been drawn to. Because, growing up, I saw some of the positive experiences that came from that. When I was finishing my undergraduate degree at Linfield University, I had an opportunity to be in a program that supported students. It’s called, “Upward Bound”. The role was called Tutor Counselor. During the summer program, we would have high school-aged students come onto the college campus and the intent of that program was to give high school students– who may not have a lot of experience with what higher education looks like, so these were students who were first generation or had a disability experience– make higher education seem more accessible. As part of that program, there were educational offerings that were basically classes that were available to those students. One of my roles, that I had there, was to help support students who had 504 plans. This was kind of my first exposure to accommodation implementation in a semi higher education status. It was still technically high school students, but they were at the college. Through that I learned a lot about 504s and how they were utilized and the supports around that. I kind of flagged that as that was something that was supporting students through that process and working with them and learning about some of the barriers and how to support them. It was really rewarding. So, I finished my undergraduate degree and I was pursuing a degree in school counseling with the intent to be a school counselor. Sometimes things just line up perfectly; as I was in my master’s program for school counseling at Bushnell University, in Eugene, there was a graduate assistant position for disability services at the university. So, while I was engaging in my master’s degree, I was lucky enough to get that position in the disability services office that provided accessibility services for the, for college students. So, I was able to pursue my master’s while also being able to learn about the higher ed realm of accessibility and what they called disability services at that time. So that’s what started me on my journey. Started it in higher education and accessibility and disability in 2009, and that’s carried me forward to various positions from there. But, that’s how it got started.听

Asher: Thank you so much for going through that whole process. It sounds so interesting going those different steps and everything just lining up, it sounds like, perfectly for you!听

Jeff: Yeah. It’s interesting in this field, I definitely have seen other colleagues that have been very intentional where, they knew what this is what they wanted to do and then they set out for it to make that happen. But, so often it, it seems that the stories are similar to mine, that maybe they were pursuing something and then there was an opportunity that there was a little bit of an overlap, or they were doing something similar and the skills translated. I think that’s changing over time, but especially people that have been in the field for longer; I do hear a lot of those stories where it’s, “I was doing this and it kinda led to that.”. It’s a great question, because I’ll be curious to hear what else you learn from your interviews of what people’s stories are like in this field.

Asher: Oh, yeah, definitely.听

Student Challenges at 抖阴福利导航

Asher: Going back to the whole idea of helping students with disabilities, and you touched on that a little bit. What are some of the most common challenges, students with disabilities face when they come to 抖阴福利导航, whether it’s their first time at 抖阴福利导航 or they’re coming back, and just the different scenarios and such?听

Jeff: Yeah. I think your point that you just made is really important, because students coming to 抖阴福利导航 come with such a different experience. Whether they’re someone who maybe just finished high school or maybe someone who hasn’t been in school in a very long time. Those experiences would be very different especially around disability experience and history with accommodations. In many cases, students who are coming from a high school experience, they may have experience with a 504 plan or an IEP. But, for someone who hasn’t been in school for a long time they may not have access to that information or, in some cases, it was less likely for them to have access to those resources depending on when they graduated. The most common experiences are pretty wide and vary a little bit of what that looks like. but, I think the primary focus is just knowing that students don’t know what the process is, and they may have expectations that it looks one way and in reality it’s a little bit different. Sometimes students come with that stigma of I’m reluctant to work with an office because I’m concerned how that translates and maybe I will be treated differently or maybe there will be something on my transcript. Things that aren’t true. But, it’s something that may prevent them from getting that initial connection. So, some of those barriers are just initially not knowing what to do or what that process looks like, or even if they know what that process is, maybe some reluctance to engage in that. I will say, because 抖阴福利导航 is so proactive with promoting resources like ours some of that initial barrier is not as high as I’ve seen in other colleges. But, it certainly is still there. I think that’s something that’s a good point to talk about and make sure we’re aware of that, then working towards eliminating that as much as possible.听

Removing Learning Barriers

Asher: How do you work to remove these barriers to learning and participation in students?听

Jeff: I think there’s a couple things that really emphasize that. It comes back a lot to just the team that we have. At every point of the process, whether it’s a student making an initial phone call or dropping into an office; there is an office assistant that is there to be able to walk them through the process, to be able to be really informative and supportive, also really responsive to the student’s need in being student-centered. Sometimes there’s that engagement that you can see a student is reluctant and you can kind of tailor your conversation to where the student is coming from and what supports would be most helpful. We do a lot of conversation about, ensuring that the student is in control of their experience. So, if it’s something that maybe they wanna just get some initial information and come back at another time, they can do that. If they wanna schedule that appointment right then and there after they’ve completed that initial application, they’re able to do that. It’s really about just meeting students where they are in terms of the process. The other piece that, I think our office does a really good job with, is following up with students with that additional information. If there is something that comes up in conversation, whether it’s that initial in-person communication with an office assistant, or it’s part of that initial meeting that they have with one of the counselors, that you get lots of resources after that. You mentioned something about, whether it was tutoring or learning more about our, digital navigator program that supports technology use. All those pieces are part of the puzzle, and we do a really good job of not just focusing on, “you came here because you have a request related to a disability experience”. We wanna make sure that we’re supporting you as a human and holistically. So, that’s been a real strength of the team that I’ve observed, and it’s something I think makes a big difference in a student feeling. I’m not just going to the accommodation office that’s very formulaic. It’s, “I went there and they worked with me, and they had a conversation with me and they understood where I was coming from.”. I think that makes a big difference in the process.听

Long-Term Impact

Asher: What impact do you hope your department has on students in the long term? I think you touched on it just a little bit. But, the broad spectrum of impact.听

Jeff: Yeah, thank you for, allowing me the opportunity to maybe expand upon it. I think the primary impact that our office can have is ensuring students are able to get the full benefit of their educational experience. So, over the years, there’s definitely been students who, if the accessibility office did not exist, they may have been limited in the way that they could engage in an academic program. So, just knowing those resources are there and can help remove those barriers and allow students to pursue their goals and pursue their dreams. Not to get too expansive with this, but this benefits our entire society to make sure that students are able to meet their educational goals. Let’s use an example of someone in a nursing program, because of an accommodation or because the program ideally is designed in a more accessible way; if that allows that student to then become a nurse, then just think of the impact that person has in that role and how that helps our greater community and provides healthcare in a way that is more supportive. Then if we think about that, that person, if they have a disability experience, they’re gonna be working with people who have disability experiences and they’re gonna be able to provide maybe a more disability inclusive care in that setting. So, I think it is pretty impactful just to think about those connections and how they lead to future connections and making the world and our greater community more accessible overall. Those are the things I just really get a lot of excitement and appreciation for. Just knowing that our work is very impactful, and there are times that it is transformative in how it helps a student and allows them to be able to persist or succeed in an academic setting. Historically, there are a lot of barriers in colleges and universities that we’re working to remove and reduce those, so more people can benefit from this environment. It’s pretty amazing thing to be a part of.

Asher: It really is, yeah.听

Future Improvements

Asher: You mentioned changes or improvements. Are there any changes or improvements that you would like to see in the accessible education in the future?听

Jeff: Yeah. Great question, and that’s something that I’ve really appreciated about this office in joining this team, is that we are pretty forward-thinking and making sure that we’re not just doing things the way they were done twenty years ago, but instead being really proactive. Incorporating more technology practices in not only what we do, but also making sure that there’s more access tools for students. So, we have a lot of access to technology that we use as part of accommodation resources, but we’re always looking at new programs, new resources. Anytime something comes on our radar, we will try to learn more about that program and see if it’s something that we can implement. The other piece of this that I think we’ve already started this process. Historically, becoming eligible for accommodations or benefiting from accommodation support was based very much on getting a formal evaluation and documentation from a medical or mental health provider, and then that the accessibility office would be limited until that comprehensive report was in front of us. We certainly look at third-party documentation as part of our process, but we also know there are students who may not have immediate access to those records or may be in process of getting some of that information. But, maybe they have other forms of information, including their own self-report. So, I think that’s something that a very forward-thinking office does, is looking at student experience as an essential part of the accommodation determination process. That’s something that we will continue to move forward with, just making sure that we’re valuing student self-report in determining what resources are available for a student.

Asher: Just the continuous improvement that we see evolving over the years.

Jeff: The other piece that I think we could do as kind of continual improvement, and we already do some of this. But, I would love to get more student feedback on their experience and try to take in that information through student survey and student responses then try to make adjustments based on that. Because, sometimes we’re making best guesses– not even best guesses– determining best practices based on the information that we have and we’re able to evaluate. But, I think there would be opportunities to get even more student feedback so that we can incorporate that into some of our procedures.

Asher: Have you guys tried putting out a questions box?

Jeff: Yeah, we’ve done a little bit of that in the past, and I think that’s something that we could really implement that in a consistent and ongoing way so we can maybe take that information and, at designated points, provide the same survey and see. We’ve put in this different program; how has that changed? This particular area of your experience and be able to do some comparison over time, I think is an area for potential growth there.

Evolving Role and Rewards

Asher: How do you see your work evolving over the next few years? Maybe three years from now? How do you see it change, or not change?听

Jeff: Yeah, that’s a great question. I guess we haven’t really talked about this as much. So, I’m newer to my role, so I’m still figuring out exactly what my role looks like in a year over year basis. I started this academic year, so I started in September. With that, I already have seen the different dynamics within the role of what is the busier times for 抖阴福利导航 and specific pieces of the position that I would anticipate needing to be able to support more students. At certain times it’s, “No, this is gonna be more staff focus,” versus, “Here’s more time for strategic focus.”. So, all that to say, I think over time, as I become more seasoned in my role, I think I will be doing more work on strategic planning and that forward thinking, that you asked about in a previous question. As, right now, it’s a lot of, “Okay, here’s something and we’re responding to it”, and I think eventually it’ll be more like, “Let’s anticipate what we’re gonna see in the future and then address it before it even comes up.” So, I think that’s where I would see my role maybe evolving and me becoming more proficient in that role, as well.

Asher: That’s great. Yeah, I had no idea that you were pretty new. Welcome to the team!

Jeff: Yes. Thank you!

Asher: I’m sure that you’ll find more answers to this next question, but what’s the most rewarding part of your work right now that you’re starting off? Or would you find more rewarding parts of your work later on down the line if you can think of it?听

Jeff: Yeah, absolutely. So, I think the rewarding work Is really just being able to be part of such an amazing team. I think that’s what I find most joy in. So, we already talked a little bit about some of those positive impacts that I’ve seen in the work that I’ve done over the years. But, the big reason why I chose to come to 抖阴福利导航, is accessible education and disability resources at 抖阴福利导航 is known throughout the state and throughout the country as having one of the best teams that supports accessibility. So, by being here and being part of that it’s really thrilling. It feels amazing to know that there is someone who has expertise in a lot of different areas or very specific areas. And, in my work, I’ve always been, I guess, more of a generalist when it comes to accessibility. Then we have someone who specializes in working as a ASL interpreter and coordinating ASL interpreting programs. We have someone who does specific work within technology. Our practitioner or counselor team, they all have specific strengths and areas that they focus on. So, it’s really just a very rewarding part to feel like you’re being engaged in something that’s so significant. There are definitely times where, whether it’s a student, whether it’s someone from the team, that I’m able to help them with a scenario and problem solve and find a resolution. Not all the resolutions are everyone feels 100%, like that was perfect, but just knowing that there’s a lot of those scenarios where it’s like, “yep, I helped create that solution and was able to move something forward.”. That feels really good in the day-to-day.

Asher: Very, very much inspiring. Thank you for that!听

Jeff: Yeah!

Accessibility Benefits Everyone

Asher: What do you wish more people understood about accessible education? And I know that’s a very broad question, but answer it as you will.听

Jeff: Yeah. So, when you ask that question the first thing I think of is that accessible education, the work that we do, and the philosophies that we have and the approaches that we put forth; they don’t just benefit disabled students and those with disability experiences. By creating accessibility and allowing things to have more inclusive practices, it benefits everyone. So, we think about scenarios where a video was captioned originally with the intent of, maybe someone with a specific disability. I’ll just use hearing, as an example. But, then anyone who’s watching that video; maybe where English is their second language, maybe where there’s a audio processing experience where sometimes it’s just more effective for everyone to be able to see and hear at the same time. So, anything that increases accessibility for one, in many cases, will increase accessibility for all. There’s a lot of examples like that. Automatic door openers. It was for specific physical access originally when we started in accessibility thinking about these tools. But, then there’s people who are carrying a heavy box in their hand, and they can press the automatic door opener, and it allows them to have greater access. When we think about the testing accommodations and thinking about having more time on exams there are scenarios where we should be thinking about how much time, is comfortable to allow everyone to be able to finish within the time that allows them to demonstrate what they know. I’ve been doing this for a while. There are some scenarios where an exam is intended to measure how fast you know something. But, most of the time, we just wanna know if you know the information. So, if we can create environments that don’t add barriers for students with disabilities, they also won’t add barriers for someone who maybe didn’t get a lot of sleep the night before because their child was up sick. There’s all these things that accessibility and inclusive education benefits and it’s not only disabled experiences. So, the disabled experience is centered in on what we do and is essential to what we do. But I think that’s something to really important to emphasize, that accessibility and inclusive practices benefit everyone.

Asher: I love that. Yeah, making things accessible for everyone regardless of whether or not they have a disability or not. I feel like that’s a huge one. Especially when I was in school, those test times, were just like, “Oh, shoot! I don’t have a lot of time left!”

Jeff: Yeah, I mean, sometimes there’s limitations on this is how long the class is, so this is the limitation on what the exam should be. But, sometimes it’s the instructor. If you’re teaching the subject, usually you have a lot of expertise and maybe it comes more easily to you. Sometimes they design tests and go, “Oh, well, this probably would only take me, insert X amount of time, so that’s what I’m gonna give everyone else.”, when really that’s not the best way to think about it.听

Asher: No, of course not.听

Testing Accommodations

Asher: And, I’m really glad now that, whenever you do need extra time for a test, you can schedule it with Accessible Education Office. They’ll give you a set area to take a longer time to do the test, and correct me if I’m wrong with that.听

Jeff: No, you’re absolutely correct. Yeah, that’s one of the resources that students access through our office pretty frequently is having an accommodation for extended time on exams. Then we collaborate with the testing centers on the four main campuses to provide that space and sometimes it’s actually just the environment of having reduced distraction location is part of the accommodation. Sometimes it’s being able to use technology. There’s lots of resources for testing that are available, so I’m glad you made that point.听

Asher: Well, thank you so much, Jeff. We appreciate you taking the time to be interviewed by us.

Jeff: Yeah. Thank you so much for inviting me. I really, really appreciate it. And, it was great to connect with you today.

Meet Shaun Williams

Asher: While leadership helps shape policy, direct student support happens on a more personal level. Shaun works closely with students as a counselor and accessibility specialist, helping them navigate services and advocate for their needs.听

Shaun: My name is Shaun Williams. My pronouns are he, him. I work here in the Accessible Ed and Disability Resources Department. I have two roles here, essentially. I’m a Counselor, which means I work with students around academic accommodations and with instructors. My other role here is I am an Accessibility Specialist.听

Asher: Thanks for joining me today.听

Shaun鈥檚 Daily Work

Asher: What does a typical day look like for you, Shaun?听

Shaun: I would say for the most part it is working with students directly, and that means in-person as well as virtual. We offer appointments and connect with students in both of those ways. This is helping students get connected with our department for the first time, and then it’s following up if any kind of questions or concerns arise as they’re bouncing their way through their classes and the terms and stuff. Since I do have two roles; as an accessibility specialist, I’m working on projects, I’m sitting on committees, I’m connecting with other departments, and I sit in front of the computer a lot too. So, doing different tasks there. Happy to expand. That’s kinda the thumbnail.听

Asher: Oh, yeah! If you would love to expand on that would be great, yeah.听

Why Shaun Chose This

Asher: Also just what drew you to work in accessible or inclusive education?听

Shaun: Yeah. Also great question. I think that this happened a lot of years ago for me. It definitely came out of my own college experience. So, I’m blind and was when I went through my undergrad and my graduate degrees. So, I absolutely utilized academic accommodations. Would have had a very difficult time getting through both of my degrees without. I was in this space as a student. I experienced it on that side and I really connected with some of the counselors that I worked with and just really felt like that could very well be something that I saw myself doing. It wasn’t initially; I worked in a nonprofit here in Portland for 10 years before finding my way to 抖阴福利导航, here. Really happy to have found myself here working in this capacity.听

Asher: That’s awesome, Shaun. I had no idea that you were Blind and low vision. Thanks for letting me know about that!

Shaun: Absolutely! Yeah! I could have announced that in my introduction as well. But, it always comes out one time or another, so there it is.听

Asher: Yeah. That’s perfect.听

Common Student Challenges

Asher: What are some of the most common challenges students with disabilities face when they come to 抖阴福利导航, in your opinion?

Shaun: Navigating the new systems. Students are running over there to connect with Financial Aid, and they’re running back over here to connect with Advising, and they’re running over there to connect with the Registrar’s Office and New Student Enrollment Advising. So, that’s definitely the thing that I see; students being up against as a new student. We definitely work to help with that, whether it’s warm handoffs or like walking students over to another one of the departments that they’re needing to connect with. So, it can be frustrating and confusing that these departments are seemingly kind of so siloed. It’s just one of these weird structures that’s just kind of true. There’s an awesome community here among the different departments. There’s a lot of supporting one another and helping them find where they need to go. So, it’s definitely navigable, it can be sort of a lot at first. A number of students connect with us, who had an individualized education plan and/or a 504 plan; these are terms for having accommodations in their K through 12 experience. So, it actually looks and feels pretty different here in college than it does in high school, if a student has had accommodations. There’s a learning curve there. Once students really get into that learning curve and they’re here for a term or two, I really feel like for the most part, how it works here in college, is so much better than how it worked in high school. That’s a thing that students have to navigate and adjust to, for sure.听

Asher: Definitely. Yeah. Thanks for diving deeper into that. I really appreciate it, and I totally understand the struggle of just going back and forth with different departments of what’s needed whenever you start in like a higher education, basically.听

How Students Get Started

Asher: Can you walk us through how a student typically connects with your services and what that process looks like for you?听

Shaun: Yeah, for sure. Really that first entry point is on our website; there’s a questionnaire that students fill out to officially get connected with us. How students find themselves getting to that questionnaire differs, for sure. Sometimes it’s instructors referring students to us, and so then they’ll just walk into the office and our office assistants are happy to connect with them and get them set up with that questionnaire right here in real time. Sometimes students know where they’re going and they just navigate to the website and fill out the questionnaire, independently. Another thing that happens, and I suspect we’ll probably talk more about this, is that here on the Southeast Campus of 抖阴福利导航, there is an accessibility hub. This very much serves like a Disability Cultural Center, like a Disability Identity Center. It’s in the Tabor Building here on Southeast Campus, so students sometimes just wander in there because it looks interesting and/or they’ve been told about it so they’re going to check it out. Oftentimes students find themselves in there asking like, “Well, how do I connect with Accessible Ed, and where do I go to get accommodations?”. The student advocates and Ira McKenzie, who runs that program, are super helpful in getting students heading in the right direction. So, once students fill out that questionnaire, that gets the whole system rolling, then they’ll schedule, and they’ll meet with the practitioner or counselor, like myself, and then they enter into– here’s where it gets kinda boring and dry.

Asher: Nothing is boring or dry! It’s all very interesting for those who don’t know about this!听

Shaun: The students enter into what’s called an interactive process. Which is, I think, a fancy way of saying, “real talk”. Just like, “What’s going on? How can we help you? What are you up against?”. Then we’re exploring what kinds of accommodations are helpful and appropriate. So, that interactive process is ongoing, always. Students can circle back with us if new things come up, if they have questions or concerns, and I should also quickly state that this interactive process absolutely includes instructors. So, there’s a lot of dialogue between those three parties, if you will.听

Asher: Oh, yeah. I’m sure. Yeah. Thanks for digging into that for us. It’s very interesting ’cause, the same with me, I’ve not really ever looked too deeply into Accessible Education until I started with the Let’s Talk! Podcast Collective. Up until then, I did not even know that there was, Accessible Education Department. I was like, “Oh! That’s very cool that they actually have services like this! How did I not know about this when I was in school before?”. It’s great of you, and many other people, providing these services to support students in everything they do.听

Empowerment Through Rapport

Asher: How do you ensure that students feel empowered and not stigmatized when seeking support?听

Shaun: Yes. This is an interesting one for sure. I guess there are two parts here. So, the empowered part, is born out of that interactive process. When I’m meeting with students, it’s really important to me to put effort into creating rapport, so that students can hopefully feel like they can trust me and trust the department. That we’re there for them and that we understand their experience. I think that is really important. Along with that, there’s these conversations where- it can take a lot of different shapes and forms. One thing that’s coming to mind here is that, when I feel it’s important or appropriate, sometimes I share my own journey experience with students. Being like, “I totally understand where you’re coming from. I was in your shoes.”. I definitely see that some students file that away. I share that with them just because, I remember seeing models, when I was younger, and looking at people who were also blind and they were 20 years ahead of me, thinking like, “Okay. Yeah, I can see myself in you 20 years from now.”. So, I do think that that kind of helps students face barriers and feel empowered. Another thing that happens in those conversations is that, when students have these academic accommodations and these other kinds of supports and resources and tools at their access and at the ready; we really explain it to students to think and feel like you’re in the driver’s seat. That’s really one of the big differences between having accommodations in the K through 12 experience, because students weren’t in the driver’s seat during those. They were at best in the passenger seat and in others times, and spaces, it was like they’re in the backseat. That’s fine because they’re minors. But, these are adult learners and so really being the one who gets to decide how and when and where they use their accommodations is a big part of that empowerment.听

Asher: Yeah, for sure. I feel like that’s a big one. Giving them the tools needed in order to take charge of what they want in their studies and in their courses and what they wanna do in life.

Reducing Stigma With Community

Shaun: The other part of your question was the stigmatism.听

Asher: Yes.听

Shaun: This one is a lot more complicated. Complex, I guess is a better word. I mentioned the accessibility hub and I’m gonna bring it up again because, I’ve observed in real time that being able to kinda tap into a community that is in and around the Accessibility Hub can definitely help with that empowerment. “Not alone”, kind of feeling. There’s projects that they get involved with together and work on together, and share ideas, and tips, and strategies, and friendship. So, that definitely helps reduce and, hopefully, eliminate in some cases the stigmatisms. The reality that, attitudinal barriers and attitudinal discrimination is out there, is very real. Even on a campus, like 抖阴福利导航, that has value and philosophy in their mission statements, that we believe in social justice here, and there are a lot of initiatives and work being done to foster that and grow that all the time, it’s still a part of society. So, discrimination and ableism and especially those attitudinal barriers they’re real. It’s an ongoing conversation all the time. It’s really helpful for students to know about the different ways that they can connect with us and get that support from us here in a professional capacity and also the peer capacities that come with the Accessibility Hub and other options like that.

Long Term Student Impact

Asher: What impact do you hope your department has on students in the long term, or even yourself?

Shaun: I think probably what might be at the center of that, for me, is I really hope for students that they gain self-efficacy in their journey as a person experiencing disabilities and health conditions that brings them here in the first place. “Knowledge is power”, as they’ve always said, and that’s why people seek education. Is to gain knowledge and skill and definitely that translates to things like I really hope students get the education and the experience here to go out there and get that career that they’re in pursuit of. There’s a lot more to it than just getting the degree. The wisdom that’s gained through navigating a college education. Students who connect with us, either are experiencing the first time accommodations and/or just connecting with different kinds of supports and resources. So, they have that experience that they can take forward in whatever stage of life comes next, whether that’s like the workplace or whatnot. A lot of people don’t know that there are workplace accommodations. I’m definitely aware that some folks have accommodations in college and then they get to the workplace and they’re not as aware and/or feel differently about having accommodations in the workplace. That can create a lot of unnecessary stress and difficulty. So, there’s a lot that students can come away with in addition to a degree and a certificate and knowledge and skills.听

Asher: Oh, yeah. Definitely.听

Universal Design Future

Asher: With that, just what changes or improvements would you like to see in accessible education in the future?

Shaun: Yeah. One thing that’s always being worked on is this, really important concept of universal design. While we’re working here with instructors and with departments there’s work being done to create more of a universal design experience; which means that when things are universally designed, in many cases, something like an accommodation, is no longer necessary. So, this universal design really includes equity in education, in life. So, I really hope to see continual progress in that direction.听

AI And Evolving Work

Asher: How do you see your work evolving over the next few years for yourself? Would it change at all?听

Shaun: Yes and no. We’re always onto new projects. Some projects are more long-term, so some things don’t change. They just progress and then other things do change with new projects that come on board. I almost wanna say, I think we can see some changes in the next few years with the boogeyman in the room, being AI. But, I don’t really know. I don’t have any projections there. I just am aware of this thing and its encroaching nature.听

Asher: What’s your opinion on that? Do you think AI will be more helpful in the long run or do you think it’s more detrimental?

Shaun: I think like all technology and such, it’s both. Super complicated.听

Asher: Yeah, no. We won’t get into that too much. Yeah, next question!听

Most Rewarding Moments

Asher: What has been the most rewarding part of your work? Yeah, just going back into the whole idea of what you do. And you’ve mentioned a little bit about the two different types of jobs you do as a accessible specialist. Accessible specialist?听

Shaun: Accessibility Specialist.听

Asher: Yeah. Sorry. “Accessibility Specialist”.听

Shaun: I have to say it out loud, so that I can know what I’m saying and get it right. I’m a people person. That’s why I’m here. I really enjoy connecting and working with people. There are definitely times where I’m like that sensation and that like visceral experience of being in the right place at the right time happens a lot when working directly in that kind of one-on-one interaction with students. There’s a lot of joy and reward in that, especially when students are like, “I had no idea you guys were here. I have been struggling for so long. I’m so glad to have finally connected with you all.” . That happens a lot, unfortunately. It’s also just so rewarding when students realize, how they can support themselves and reduce or remove some of the barriers that have just been really difficult. So, that’s awesome to know that and really see in real time how impactful this work can be.听

Asher: We’re super glad to have you on the team and helping a lot of students out and helping them learn about all these different services that are available to them to help them grow in their knowledge and their careers and goals and what they do.

Shaun: Yeah. Thank you. I appreciate that.听

Beyond Accommodations

Asher: The final question, what do you wish more people understood about accessible education?

Shaun: Yeah. I guess one thing to say is that it’s a lot more than just academic accommodations. There’s a lot more supports and resources and ways that students and faculty can engage with our department. That’s a big one, for sure. It seems like this is an opportunity to hopefully say something that will help dispel the notions and stereotypes and “ableist” kind of things that come up around this, whether it’s internalized. I suspect that folks who are gonna be listening to this podcast either directly experience some kind of disability, or at the very least know somebody who does. Like the rest of the “-isms” that are in our lives; ableism is in internalized. Connecting with other folks, I think, is a really helpful way to get inside of that and work to dismantle it. In doing so, we’re changing our lives hopefully making it easier and richer. Then that’s gonna also change the world. That sounds like a big thing, but I suppose it’s true, you know? I want it to be.听

Asher: Oh, yeah. We all want it to be, for sure. Yeah. A better world for everyone.

Shaun: Yeah.听

Asher: Well, thank you very much, Shaun. I appreciate you interviewing with me today.

Shaun: You’re very welcome. Thanks for having me on.听

Meet Sarah Alt Formats

Asher: Our final guest, Sarah, works in a highly specialized role as the alternative formats coordinator. Her work focuses on ensuring students can access course materials in ways that support their learning needs.

Sarah: I am Sarah Price, I use they/she pronouns, and I am the alternative formats coordinator for Accessible Ed.听

Asher: Thank you so much, Sarah, for joining me today. We wanna talk to you a little bit just about what your role is and just how you see things in your perspective.听

Alternative Formats Workflow

Asher: What does a typical day look like for you?听

Sarah: So, just an overview of my role; I oversee the coordination and production of all of our alternative format accommodations across all of our campuses. So, that means things like, accessible textbooks, large print, braille, and all manner of accessible digital files. I also work directly with, other 抖阴福利导航 faculty and staff with technical support and training on accessibility with their course shells or whatever else they may be doing. I kinda get pulled into all sorts of just different projects. So, that might be doing something like working on a newsletter or helping build a website about a particular aspect of accessibility. It can be all kinds of different things. So, a typical day for me looks like, I work mostly remote, but I do have to come in occasionally to do printing if there’s any production that needs to be done. I also do the work of organizing the work, so I’m meeting with people on my team who are doing some of the remediation or production of materials, making sure everything’s going okay. I’m emailing students to make sure they have what they need. I’m reaching out to faculty who have questions and a bunch of little bits and bobs every day.听

Asher: That’s cool. That’s awesome! What drew you to work in this area of accessibility?听

Sarah: It’s a great question. Part of this is I’m disabled myself. I have been a disabled student. I had my own struggle getting through college. Both my Bachelor’s and my Master’s Degree were extended because of time I had to take off due to health issues and other disability barriers. So, I’ve been there. In fact, I started working in this area when I went to get my Master’s Degree. I worked as a student worker at PSU’s Disability Resource Center and learned new skills. So, that’s where kind of the love of this started for me and I’ve been doing it for about eight years now.听

Asher: Wow! Happy eight years!听

Sarah: Thank you!听

Barriers From Inaccessible Materials

Asher: What are some of the most common challenges students with disabilities face when they come to 抖阴福利导航?

Sarah: That’s a great question. There are so many answers to this. Because, it really depends on what population of students that you’re working with even within the disability community. So, for me, the one that is most commonly, on my doorstep, is students encountering materials that are not accessible to them. Without those, they really struggle to be successful in their education. That could be something like they do better with listening rather than reading. So, they would like an audiobook of their textbook or a tool that reads it out loud for them. That could be a blind student who doesn’t have access to materials that work for their screen reader. It’s all these kinds of things that come up for me the most often and are huge barriers.听

Asher: Definitely. Yeah. I definitely also just face the same issues. I tend to listen better than I do reading, as well. So, I totally understand what you’re saying about getting an audiobook rather than reading through a textbook on its own.听

Converting Textbooks Legally

Asher: How do you remove these barriers to learning and participation? You mentioned it a little bit; how do you get a textbook and then change it into audio if you’re not even able to in the first place?听

Sarah: Yeah. There’s a couple ways we do that. So, there are often more and more, which is really awesome, digital versions available from the beginning. Instructors are using, or offering the digital versions, or OERs, open educational resources, for their classes which are often accessible. So, that’s just one piece of this. That is one way we can help is to make sure that that is something that we prioritize as an institution. But, when there are not availabilities like that we will take whatever version we can get our hands on. We will convert it to a file that works best for that particular student, or will fit best with the rest of the course materials the instructor is using, and just make sure it passes all the tests. It can be read either by a screen reader or other kinds of assistive technologies. Sometimes that means working with a publisher. Many of our textbooks are copyrighted, so we must follow the copyright laws and reach out to the publishers and get special permissions and things like that. So, there’s a lot that goes into the various types of materials that we end up encountering.听

Asher: Have you ever faced a situation where the author’s like, “No, you can’t turn this into an audiobook”?

Sarah: Yeah.

Asher: What happens during those times?

Sarah: It’s very, very rare. I’ll just say that. Most people, even if they have a whole list of requirements that they have, you have to kind of jump through some extra hoops, most publishers eventually will say, “Yes, here you go.”. We have had instances where they don’t and so what we typically do in that instance is, if they can get a print version of the book, we actually cut the binding off and scan it and then create a digital copy from that. It’s very labor-intensive, but you know what? We will do what we can to make sure they get what they need, you know? That’s what we do.听

Asher: Whatever you gotta do! That must take a long time to scan each and every single page just to… And, if it’s a hefty textbook too!听

Sarah: Yeah, it can be. I have actually been very lucky that we have not had to do that recently. So, almost always we can either get it from a publisher, or we find some other way for us to get what we need.

Asher: That’s very interesting, definitely.听

How Students Request Support

Asher: Can you walk us through how a student will typically connect with your services, and what that process looks like?

Sarah: Yeah. There’s a couple different streams that I end up getting connected with students. Most often they’re referred to me by their disability counselor, practitioners within AEDR. So, the student connects with our office, who works with a practitioner to get their accommodations that they might need, and then they either put their accommodations in our system every term and I get an automated notification that they have a request, or I sometimes get a direct connection via email, or a student just reaching out, who isn’t connected with us yet, that says, “Hey, I need help with this textbook”, or whatever. There’s all kinds of ways, but the most common is just through our disability counselors.

Asher: What do you find yourself providing, as far as, accommodation services and support? What do you find yourself providing most of more often than not?听

Sarah: Definitely accessible textbooks. That’s hands down our biggest request. To kind of put it in perspective; we have thousands of individual requests every term just for my department. So, Alt Formats, we get, depending on the term, anywhere between 800 and 1,100 requests for accessible textbooks every single term. That’s a lot of books! That’s per class. So, the requests per class. So, it’s several hundred students requesting for several classes each. Which may have more than one textbook each. So, it’s a lot! A lot of them we already have, and sometimes that process is sped up by, like I said, already electronic versions existing. But, that is by far our biggest service that we provide. Then after that, of course, things like large print materials, braille materials, fully accessible Word files, things like that.

Asher: That is a lot of textbooks! Oh, my goodness!听

Sarah: It’s a lot. But, thankfully, like I said, so many of them and so many of our instructors are using these wonderful already digital materials. So, when that’s the case, we don’t have to do anything further. We just check to make sure they’re good to go and then we move on to the next one. So, it ends up being significantly less that we’re actually needing to go and hunt something down. But, that is the number of requests all together.听

Asher: That’s awesome! Thanks for your work in that.听

Empowerment And Rights

Asher: How do you ensure that students feel empowered and not stigmatized when they do come and seek support? Whether it’s captioning needs, or textbook audio, the different things like that?

Sarah: Yeah. It kind of depends on the scenario and where people are at in their own journey with experiencing disability. Some people come to us really frustrated, because they already know what they should be getting. Then some people just come to us frustrated, because they don’t know what they need. There’s a lot of variety on that spectrum in people’s journeys. So, I try to be individualized in that sense. But, I think making sure students know that their right is to equal access to education. They are not silly for asking, they are not broken, or anything else like that disability is just a way that human bodies are. We have all these various ways that our bodies are and that is what it is. Not good nor bad. I also sometimes choose to disclose my own disabilities to make people feel comfortable. ‘Cause I think there’s something about having a shared experience that can really destigmatize what you’re talking about and also empower people to, “Hey, I’ve been through this too. I’ve gotten through this. I can help you get through it.”. Hopefully that’s a comforting and empowering thought for them as well.

Proactive Accessibility Vision

Asher: What changes or improvement would you like to see in accessible education in the future?听

Sarah: Yeah. It’s a big question. There’s so much, but I guess the thing that’s most present in my mind is I wanna see accessible digital materials being the norm in all areas of our college. I don’t wanna necessarily work myself out of a job, in the sense, that I know there’s always gonna be individualized support that’s needed. But, I wanna be working on proactive stuff. I wanna use my time for creative, projects and things like that. I don’t wanna have to be bogged down, because we have materials in courses or in other parts of our institution that are not fully accessible for all of our students and employees and community. We’re doing a lot of work right now to make that happen. 抖阴福利导航 policy has been in place since 2018, that supports our ongoing efforts to make sure that all of our digital materials are, fully accessible for folks and we’re gonna keep working towards that goal.

Asher: How do you see your work evolving over the next few years? And I know you talked a little bit about it of you don’t wanna necessarily work yourself out of a job. But, do you see your work evolving with technology advancing and everything?听

Sarah: Yeah, absolutely. I think the thing that I would love to see the most is, like I said, doing more proactive work. So, when a faculty member wants to build a new course, if they’re working directly with us during that process, building their materials together; that would be more fun and I think beneficial to people in using universal design principles throughout the whole process, whether that’s a remote class or in person. Have that be more what we can focus on and spend our energy doing than having to scramble last minute. That can be a really frustrating experience, especially for the student who’s experiencing it, but also for our team as well. The more we can flip that around a little bit, the better. Closing some of the knowledge gaps. That’s no one’s fault for that. That’s just you don’t know what you don’t know and we wanna be the place that can help and can support.

Rewards, Challenges, And Tips

Asher: What’s the most rewarding part of your work? I’m curious.听

Sarah: Yeah. I have kind of two answers. I have a short-term answer and a long-term answer. I think short-term, it’s really rewarding when you give a student that piece that they need to be successful. Connect all the dots, get them what they need, and they’re able to successfully finish that class. Hearing from students that they now have what they need and they are able to access the materials, that’s very rewarding. But, additionally, I think about it in the long term of I didn’t just give someone a textbook; I helped them be successful in their education, which will stay with them for the rest of their lives. That impact, that investment in someone, watching that bloom over time or just knowing that it will, is extremely rewarding for me as well.

Asher: Oh, that’s very sweet. I like that. On the other hand, what challenges do you face in your role, and how do you navigate them?听

Sarah: Yeah. We could talk about the technical challenges. There’s some of that. There’s some things that we would love to do easier, that is just not very easy now. There’s also the heavy lift of remediating materials that are all over our digital environments. But, beyond that, there is still a lot of stigma about disability and I see students experiencing it, I experience it, and it can be difficult sometimes to collaborate with people who may not have that same shared experience. So, having to defend or explain ourselves continuously can be very exhausting. Explaining what our students need can be exhausting at times, and that can be a real challenge when we encounter people who just may not have that understanding yet.听

Asher: Yeah, that’s a big one. Needing to explain ourselves over and over again. “This is simple. I don’t need to say it multiple times”, kind of thing. Last question, what do you wish more people understood about accessible education?听

Sarah: Yeah. They may understand that education is important, that access to education is important. But, what that looks like day to day is like making sure your Word Docs have headings, making sure you have alt text on your Instagram posts. It’s little things that really do impact someone’s access. That we can all agree is important, but sometimes it feels like, “why do I have to make sure I have heading structure in my Word Docs?”, that’s because, so everyone can access it. So, it’s like always kind of tying it back to I wish people knew what the different pieces. A lot of it is just not knowing what you don’t know, and how that does ultimately impact someone’s ability to stay in school, complete a class successfully. With those little things potentially ironed out, they can get there, they can do it.

Asher: Definitely. Yeah. General accessibility tied into accessible education kind of thing. I only recently also just learned how to work alt text as well into my images, which I was very confused between a caption for an image and an alt text for an image. So, I was trying to figure out which one is which!听

Sarah: They’re both helpful in their different ways, and the other thing that is important to note too is that there are differences even among people who need things like that; how they would like them formatted. There’s the standards, and then there’s people’s preferences on top of that. So, it’s always about trying to be flexible and making sure people have the bare minimum; something is there describing an image. Sometimes that might be alt text, some times that might be a longer description, sometimes that might be a thicker caption. It all helps.听

Asher: It’s all different.

Sarah: It’s all different, but it all helps.听

Asher: Yeah, for sure. Well, thank you so much, Sarah, for talking with me about all this.

Sarah: Thank you so much for having me.听

Closing Thoughts And Credits

Asher: Today’s conversations remind us that accessibility is not just about accommodations. It’s about equity, dignity, and ensuring every student has the opportunity to fully participate in their education. Whether it’s through leadership, counseling, or resource coordination, each of our guests play an important role in building a more inclusive campus environment. A huge thank you to Jeff, Shaun, and Sarah for sharing their experiences and insights with us. And thank you for listening. Until next time, take care.

Asher: Thank you for listening to Let’s Talk!, 抖阴福利导航’s broadcast about disability culture. Find more information and resources concerning this episode and others at . This episode was produced by the Let’s Talk! Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resource Department, and the 抖阴福利导航 Multimedia Department. We air new episodes on our home website, our Spotify channel, , and

 

Episode Transcript

Transcript edited by Miri Newman

Show Introduction

Kylo: You are listening to Let’s Talk!. Let’s Talk!, is a digital space for students at 抖阴福利导航 experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of 抖阴福利导航 抖阴福利导航 Foundation, or our community partners. We broadcast on our home website, , on Spotify, on , and

听[Intro Music]

Introducing the Guest

Miri: Thank you for tuning in to Let’s Talk! Today I have with me the author of , and their newest book, . Go ahead and introduce yourself, your history with creation and art.

Sydney: Yeah, thank you so much for having me. I’m really excited to be chatting with you today. So my name is Sydney, I use they/them pronouns, and I am a young adult author who is originally from Seattle and currently living in Portland, Oregon.听

Miri: Thank you. So, how long have you wanted to be a writer, and what were your main goals as an artist when you were, you know, up and coming?

Sydney: Yeah, so my mom loves to tell the story of before I could read when I was like two or three, I would take picture books and make up stories just based on the illustrations. And so I’ve always been a storyteller of sorts, but I didn’t really want to become a writer until I was about 16. Between the ages of like, 12 and 16, I was writing fan fiction a lot and having a lot of fun with that creativity. But after I became disabled at about 14 and then COVID hit shortly after, I started reading a lot to pass the time. And I wasn’t really seeing myself represented in terms of disability rep in books until I read a novel called that has a Deaf love interest. And that was one of the first times I felt represented on page, and that sort of sparked the inspiration for me to share some of my own stories and experiences through novels.听

How Disabilities Influence Creation

Miri: How has your experiences with your disabilities influenced your art?

Sydney: It has influenced my art in so many ways. It’s, it’s really hard for me to separate my art from my disabled identities because they’re so closely connected. I think one of the biggest things is I have learned to advocate for myself a lot more. A lot of the time in publishing there are very tight deadlines, and sometimes I’m just not able to meet those. I used to have a lot of anxiety around speaking up, or asking for more time, or accommodations, and I’ve really learned to be more confident in that. I think also a lot of the time, the advice when I was first starting to get into writing heavy duty, a lot of people would say, “Try to write every day, whether it’s one word or a thousand.” And unfortunately, that didn’t work for me personally due to fluctuating energy levels and disabilities. So really sort of carving my own path and finding out what works the best for me is still an ongoing process because every book is different. Every day is a little different for me, but those are probably the main things that influence my creation.听

Miri: Yeah, so you mentioned the 鈥� in the publishing process, the signing process, all that stuff 鈥� that it is very fast-paced and very impatient. How, how does being disabled affect your ability to meet deadlines and even just how you approach a new project when it comes to deadlines?

Sydney: I have very open communication with my editor and also my agent. Sometimes I’ll have my agent jump in to express something, or help me set a certain boundary, but in general, it is been kind of a recent development that I have sort of become okay with my projects potentially getting out into the world and on shelves later if I can’t meet certain deadlines. But sort of accepting that because I want to be able to enjoy the process and not negatively impact my own health and mental wellbeing to meet a deadline. So I still obviously try to hit all my deadlines, but have sort of learned that I won’t be able to hit every deadline every time, and however that affects the process, I’m kind of okay with at this point.

Miri: Yeah, I think that’s something that comes up in a lot of our conversations with people. Um, just in any sort of work, you know. Work takes energy, work takes deadlines. There’s usually a lot of pressure to do the thing or get fired. And for people with disabilities that could be particularly difficult. So what was it like when you were first getting signed, knowing that this would be something that most other authors wouldn’t have to face? Like did you go into it with that at the front of your approach, or did you have to like kind of back off and pretend that you were less disabled?听

Sydney: A little bit of both. I think when I signed with my first agent, I had no idea what I was in for.听

Miri: And you were, you were how old when you signed with your first book?听

Sydney: 18. So I was, yeah,听

Miri: That’s so young!

Sydney: Still very young and learning about the industry and I ended up not staying with that agent for very long, ’cause we had some accessibility issues and whatnot. But my second agent, I felt a lot more prepared and I sort of understood the industry a little bit more. And when it came to getting publishing contracts, nothing can really prepare you for when you actually are with a publisher. It gets very hectic, very fast.听

Miri: Yeah.听

Sydney: But again, just sort of setting boundaries, and really learning to advocate for myself. With my first book, I didn’t do that as much because again, I was still learning the process and learning certain things that were expected of me as an author. But along the way, I have gotten a lot more confident and a lot… a lot more comfortable approaching my publisher with, “Hey, I need more time,” or whatever the situation is. And they have been great about accommodation so far, which I’ve been very lucky.听

Miri: I’m very glad to hear that. I know that this is not an industry that’s easy for anybody, so听

Sydney: No.听

Miri: Having people who are willing to provide accommodation is good to hear.听

Sydney: Yes.听

Miri: All of your books involve a protagonist living with some form of disability. Why is that important for you to include? You mentioned not seeing yourself until, Kind Of An Epic Love Story represented in fiction. So why is that important for you and to, to include, and how does that affect your outlining and plotting process?听

Sydney: Specifically, I write books for teenagers and those formative years are so important to see yourself represented and see a diverse world and experiences. For me, that feeling when I read this Deaf love interest, I’m always sort of chasing that and trying to recreate it in my own books. Because I would just love for people to have that same sort of sensation of, “Okay, I’m not alone. I’m not the only one who experiences X, Y, Z.” It’s also important for able-bodied or non marginalized readers to learn a little bit more about a perspective they might not have considered before. I’ve had so many people reach out to me and say, “I am hearing,” or “I’m not disabled, but I really want to learn sign language now,” or, “I have learned so much about, you know, what hard of hearing people experience, thank you for writing this.” And those kind of messages are so important to me because it feels like my work is making even the tiniest little bit of a difference in, you know, making the world more accessible. And听

Miri: Or a lot of a difference, it seems like, to a lot of people.听

Sydney: Hopefully. Yeah, hopefully. And sort of on the flip side of that, the outlining and process.听

Miri: Yeah, when you’re planning a new book, will you go in with a character already in mind and write it around the character and their ability?

Sydney: Sometimes, yeah, it, it definitely is a little different for every book. Sometimes the story comes first and then the characters come. With my first two books, right off the bat, I knew that they were gonna have Deaf rep, and that was sort of one of the main areas of representation in those books. For my third book, which I’m currently editing, the story concept came first, and once I had the characters and the sort of plot and setting in mind, I looked at it and I said, okay, what disabilities can I slot in here? Which ones make sense for the story and the characters? And I’m exploring different aspects of my own disabled identity in this third book that I’m very excited about. But it’s always a fine line of making sure the disability rep is always there in the book and it’s not sort of dropping off and then a hundred pages later you’re like, oh yeah, the character’s Deaf, or whatever the situation is. But also not going too overboard with it and sort of beating readers over the head with disability rep. I want it to feel very organic. I want it to feel like you’re just reading this person’s story, and you’re not necessarily, you know, sitting down and reading a textbook, but you’re still sort of getting educational values in there.听

Miri: Tell us a little bit about your first book. The Loudest Silence, which came out two years ago.听

Sydney: Yes. Yeah. So The Loudest Silence is a dual-POV, Young Adult Contemporary. It is a platonic love story, which is always so fun to explore other facets of love that aren’t romantic. It features a character who had just recently lost her hearing, and she is a musician, and so the loss of sound is huge to her, and she’s not sure how she can go forward and pursue being a musician. And then another character who is a soccer captain with generalized anxiety disorder, who actually hates soccer. He doesn’t want to play soccer. He really wants to be on Broadway. And so they both have these connections to music that they’re trying to figure out how they can pursue it, and they end up forming this sort of unlikely songwriting partnership slash friendship. And that was very largely based on my own experience losing a significant amount of my hearing when I was 14. At the time I wanted to become a musician in the future, and reconnecting to music and sound was really tricky, but it was also really fun and interesting in certain ways. Getting to share some of that experience in The Loudest Silence was really fun.听

Miri: So, something that readers of your book might notice is on the cover, your protagonist is singing into a microphone, but with her other hand it is up against her, her throat. Tell us about that. Because that’s, I don’t think something that anyone would be familiar with outside of, outside of having seen it before.听

Sydney: Yeah, that is one of my favorite details of the cover. When I was taking vocal lessons after I lost my hearing, I went through several vocal coaches who felt like they couldn’t work with me because I was hard of hearing. And I finally found this vocal coach who was absolutely incredible, and we came up with so many tools for me to be able to learn pieces and sing again. That was mostly based off vibration, so a lot of it would be, I would have my hands on the vocal coach’s throat to learn what the pitch is supposed to feel like, and then I would mimic that on my own throat, and sort of match the vibrations instead of matching the sound, because I couldn’t necessarily hear all of the actual pitches. I incorporated that into the main character in The Loudest Silence because I had never heard of that technique before. My vocal coach and I kind of made it up. I don’t know if that’s a real thing out there somewhere, but it was so interesting for me to learn to reconnect to music in that way, that I really wanted to incorporate that representation into the book.听

Miri: Yeah, absolutely. I come from a music background of my own. Never a singer. I’m a horrible singer, uh, mostly from the musical side. But, uh, you know, I came into audio from the accessibility perspective and had also never seen something like that. And I just think that’s a super cool thing to have exist out in the world that a lot of people wouldn’t know about. Your sophomore book just released last month, as of recording. Tell us about that. What is that about, and what was the process behind the creation of that story?听

Sydney: Yeah, so my sophomore novel is called Someone to Daydream About, and it follows a Deaf and demi-romantic teenager who dreams of renovating her family’s rundown Deaf center and making a positive impact on her beloved Deaf community. But, unfortunately, they don’t have the resources to do that until she gets a job offer from the older brother of one of her students who’s in the process of losing her hearing. And the older brother of this student is a world famous pop star. And he offers to take the main character on tour with him so he can learn sign language for his little sister, and she can also earn the money needed to save her Deaf center. So it’s this really sort of unlikely love story between a Deaf girl and a boy whose entire world and career revolves around sound and music, and that juxtaposition was really, really fun for me to explore. It actually started as a fan fiction back, like I said, when I was like 12 or 13. And I stumbled across my old AO3 account one day, like randomly.

Miri: Oh, that’s always an exciting feeling. I do that every once in a while. I’ll see. I’m like, who? Whoops, forget about this. Yeah. For those who don’t know, that’s , which is a fan fanfiction hosting website.听

Sydney: Yes.听

Miri: No longer in beta.听

Sydney: I know, right? I’m like, wow. It’s some exciting news.

Miri: They’re like, “April Fools, were not in beta, but also were actually not in beta.”

Sydney: Um, and at that point I had already written my first book and I was looking for another spark of inspiration for writing my second book, and came across as old fan fiction and completely reinvented it and made it into someone to daydream about.听

Miri: Nice. So along with the themes of disabilities in your writing, there’s also a heavy emphasis on the theme of collaboration and cooperation and learning from other people’s experiences. Why is that something that you emphasize putting into your books, and where did that come from?听

Sydney: I think that my own experiences of making so many incredible friends who have disabilities, or are queer in ways that I am not, and learning about their experiences, I felt has made me a better ally to other disabled experiences. And sharing those themes in my book is really important. I think that even if you don’t necessarily identify with a disability or a queer identity in one of my books, I’ve gotten a lot of feedback from people who say that, “I’m not Deaf, but I have epilepsy,” or whatever it is. And they can sort of relate to the overarching theme of sometimes feeling kind of othered, or like you are existing in a world that is not made for you. And so exploring those themes and showing that even if you are disabled yourself, you can still learn about other people’s disabilities and become a better ally in general. I, myself, have learned that in so many ways. By reading and making friends, and even members of my own family, I’ve learned a lot. And so incorporating that is really important to me.听

Miri: Yeah, I was interviewing someone a couple days ago and one of the things that they said in their interview is, “When you meet one disabled person, you’ve met one disabled person.”

Sydney: Yes, exactly.听

Miri: So that theme echoes in your, in your writing. So what is the writing process for you? Like just you sit down at your computer, your typewriter, and then…?

Sydney: I’m not that cool. I wish! I wish I was a typewriter author. I think they’re so fun. Um, yeah, my process shifts a little bit for every book. For my first one, I just sat down and I wrote it. And what was originally written versus what got published was vastly different. That went through so many big changes. For Someone To Daydream Dream About, I actually sat down and I plotted chapter by chapter. I was like, okay, I need to know where this is going so I don’t rewrite the full thing later, like I did with my debut, but it really does shift. For me, when I’m first conceptualizing an idea, what is sort of an indicator for me that it’s going to pan out is if I have the beginning and the end. That’s where I usually start for every one of my novels, is I know where it starts, where the character starts, emotionally, physically, mentally, where the plot starts, and then the end, and then I fill everything in through the plotting process. And sometimes it’s more difficult than other times to figure out moving parts or side characters, or incorporating the disability rep. But I always have my sort of goalposts of the beginning and the end. And I oftentimes will have brainstorming sessions with my author friends, or my editor, or my agent. If I’m stuck on, I don’t know what the middle is, I know what the end is. I don’t know how to get to the end, or听

Miri: Yeah, right?听

Sydney: A certain plot device that is giving me trouble and just trying to be very collaborative with it. In the beginning, I felt like I had to be perfect all the time, and everything I wrote had to be polished like right away. And that has changed so much. Now I will send something to my editor and be like, girl, I don’t know how to fix this. Help me. And so I think you learn to be less guarded through the process.听

Miri: Yeah. So how long from sitting down day one and doing the plotting to a finished book do you have, and then how long between sitting down with the finished first draft and actually, you know, sitting at the debut signing at the bookstore.

Sydney: Yeah, so it depends. I feel like all my answers are “it depends.”听

Miri: I mean, everything is “it depends.” The world is, you know, full of shades of gray.听

Sydney: Yes. I mean, my debut I wrote in a month, but like I said.

Miri: Had to completely rewrite it?听

Sydney: Yes. Um, my second book, it, I think I wrote it in about three months and it didn’t change a whole lot, and I had a very thorough outline for that book. With my third book, I have been working on it for about a year now, and we are still chipping away at it. The process really does shift depending on what book, and if you are already under contract or you’re just writing for the fun of it, there’s so many factors. But in general, when you sell a book to a publisher, it takes at least two years until it is on shelves. And that is because you’re editing it with your editor, the marketing team is figuring out how can we market this? They’re designing the cover. There’s so much behind the scenes that I didn’t even know about until, I bought a publishing contract, and then I was like, “What do you mean it’s gonna be two years”

Miri:听The book is done, just print it!听

Sydney: Yeah. I’m like, can we just publish it now?

Miri: What do you mean there’s more work we have to do? I already did all the work! Uh, You mentioned getting under contract. How did that first happen for you? How did you go about getting yourself noticed, getting yourself out there?听

Sydney: When I first started writing during the initial COVID lockdown in 2020, I just started posting on Twitter about it. Back when Twitter was not a terrible place to be. And I ended up just kind of stumbling across the writing community. I didn’t actively search for them, but I made so many friends that I’m still friends with to this day. And back in the day there were a lot of like book pitch events on Twitter, where there’s a certain hashtag you would use, and then you could use however many Twitter characters you had to sort of pitch your book to agents.听

Miri: Hmm.听

Sydney: They would comment on your post if they wanted you to send them the book. So I actually ended up finding my first agent through one of those pitch events. My second agent, I actually also connected with on Twitter initially. So: Twitter. Yeah. But then my agent took my book. We edited it together. There’s so much editing. The book, it’s endless. And she created a list of, “I think these editors at these publishers would really like this book,” and then she sent it to them. So she 鈥� the agent 鈥� kind of controls that after you sign with them. There are some publishing houses that you can submit to if you’re un-agented, but most of them you have to have an agent to do that process for you.听

Miri: Just through Twitter and having a good pitch, and having a good agent, and then boom, here you are on book number two!

Sydney: Yes, essentially there are also, there are websites like, I think it’s called Manuscript Wishlist, where a lot of agents and also editors will put on,” Here’s the kind of client I’m looking for.” So that it’s kind of a directory where un-agented authors can look up their genre and their age range and try and find agents to submit to, and those resources are very helpful as well. But for me it was mostly Twitter. Yeah.听

Miri: Hey, sometimes the internet can be a force for good.听

Sydney: Yes.听

Miri: Very, very occasionally, but, but sometimes it is true. So this is something I’ve been wondering about as you’ve been talking about this: What is the environment of young adult fiction like right now? Like, is it, is it doing good? What are the current trends? Have people been reading less or more?听

Sydney: Yeah, so… With publishing and books, it always goes in waves, where you’ll hear; X, Y, Z genre is dying, and then the next year everyone’s like, “We want this genre again. Where are, where are all the writers who write these genres?” And so it’s always very tricky. I think most authors’ least favorite word is The Market, because you see that so often, of “The Market doesn’t want that right now. “

Miri: Well, and especially if a book takes two years between being basically finished and then on shelves, like听

Sydney: Exactly.听

Miri: Anything can happen in that time.

Sydney: Yeah. So right now, fantasy is having a really big moment. When our current president got reelected 鈥� I don’t even want to curse this interview by saying his name 鈥� but you saw a big resurgence in book bans, which is so fun. Um, and so a lot.听

Miri: We love it.听

Sydney: Yes. Unfortunately now it’s even harder to get marginalized books put through publishers. And we’re seeing more people gravitate towards like fantasy, sci-fi, something that isn’t of this world. Or, it’s this world but, it’s like magical because they sort of want an escape route from our current reality. Um, but yeah, the trends are always going up or down. It’s very much a rollercoaster and nobody can really predict anything.

Miri: Yeah. ’cause I mean, I imagine what is talked about the most, what stirs up the most, you know, online discourse 鈥� which is how I think a lot of people would hear about books that they wouldn’t necessarily pick up themselves 鈥� isn’t a good reflection of what is actually popular and being read, but just not talked about a lot. And you know, most of what I see talked about is books that do feature marginalized representation and some sort of thematic thing in line with that, just because there’s more to talk about in that than a book that is less about that. Especially right now. ’cause you’ll, you’ll see things heralded from both sides of, “Oh yay, this book is an amazing Deaf/Hard of Hearing representation.” And then you’ll be like, “Oh, those snowflakes with their throat singing.”

Sydney: Yes. It’s, it’s a hundred percent like that. You get a lot of mixed opinions. And disability rep, there’s still so many stories that haven’t been told. And you hear a lot of “this trope is dead,” or “everyone’s tired of seeing this trope.” My opinion is no trope is dead until we have not just one, but several types of marginalization with that kind of story, so. Disability rep, BIPOC rep, queer rep. And a lot of the time publishing falls into, oh, “We have one Deaf book, so we don’t wanna publish yours because we’ve already published one.” It’s kind of like, okay, it’s great you published one, but we need more than that.听

Miri: You mentioned having things come in waves, and publishers not wanting X book because they already have Y book about the same thing. What are some representations that you have seen that are especially good or especially bad?听

Sydney: So especially good, I’ve already mentioned, but This Is Kind Of An Epic Love Story, and I really think that’s a testament to authors not being afraid to include a marginalization in their book that they don’t necessarily share. I am pretty sure the author of that book is not Deaf or hard of hearing in any way, and so I loved seeing that too because it was very unexpected, but it was so masterfully done. And there are so many incredible authors who are sharing own voices stories right now. is one of my good friends and writes Deaf rep as well as other disability rep in her books. My friend is incredible. He writes disability rep as well, and like Latinx fantasy, which is so fun.听

Miri: And they were the one at your first book signing, right?听

Sydney: And my second, yes. Aiden, I love him too because he uplifts younger authors in the space. He really walks the walk, of supporting marginalized authors, which is incredible. I think in terms of bad representation, you often see in books, movies, shows, whatever, that this sort of two sides of a negative stereotype coin. One is a sort of pitiable miserable, disabled character, where being miserable is their only personality trait, and the only reason that they’re miserable is because they’re disabled. That is very ableist. It’s like, okay, let’s unpack that. And then the other side of that is the sort of inspiration porn disabled character, of someone who is so successful In Spite of their disability, and they almost don’t want that associated with them, or able-bodied characters. Or like, “See, we don’t have an excuse because this person doesn’t let their disability get them down.” And, you know, that’s not saying that sometimes it, it does suck to be disabled. Absolutely does. A hundred percent. I think that that showing the sort of heavier side of being disabled is a hundred percent valid. And I, you know, I show that in my books as well. But then also, you know, not having someone just be sort of a hundred percent happy all the time. Like go, go, go, this sort of inspirational figure, because there’s so much nuance to disability rep and I myself, I have a beautiful community that I’ve made because I am disabled, that I wouldn’t have made, probably, if I wasn’t. But that also doesn’t mean that life isn’t hard because of my disabilities. And striking that sort of balance, I think that a lot of people who create film and television, as well as authors, can utilize the help of authenticity readers, or actually getting disabled people in there when you’re working on a project. It’s kind of one of those Yeah. Mind blowing concept. But I’ve even used authenticity readers in my books, even though I am hard of hearing, because, I want that extra layer of outside opinion and fresh eyes. And so I think that that is sort of something that’s underutilized right now. I think that more people should be bringing disabled people into their projects as sort of an added layer of authenticity if they are not disabled, and sometimes even if they are.

Miri: Yeah, that’s a good answer. At all of your public events, you have an interpreter, which is awesome. Love having interpreters accessible. Has there ever been pushback against getting someone like that some of your accessibility needs met, or,

Sydney: Yeah, so almost every time it’s a little tricky. In interviews or events, a lot of the time there’s this sort of monetary barrier with interpreters, because if you go through an interpretation company, they usually have much higher rates than freelance interpreters, but freelance interpreters, sometimes they don’t have all of the right qualifications, and so it can be hard to just find an interpreter in the first place. But. Yeah, it is, it is difficult when you’re working specifically, like with indie bookstores 鈥� who I love to support over, you know, a big conglomerate of any kind 鈥� oftentimes they don’t have the budget to do that. Sometimes I don’t have the budget to pay for my own interpreter, and so sometimes it’s just this situation of weighing the pros and cons of doing an event or a certain interview. I’ve been very fortunate that with this promotional round for Someone To Daydream About, my publisher has paid for an interpretation team to be at my events because we’re also catering to the Deaf community, and so we want events to be accessible for them. And I’ve also been very lucky to have some interpreters donate their time to me, for like television interviews or something along those lines where I’m not able to afford it. The company or whoever is doing the interview doesn’t have. Not necessarily the funds, but you know, there’s all sorts of approvals and, and听

Miri: Oh, yeah. So for this interview, we’re using a live transcription.听

Sydney: Yes.听

Miri: Um, and 抖阴福利导航 has a fantastic team of interpreters that I used for an interview a couple weeks ago. and they were able to, because we have just so many different interpreter teams, we can get people very last-minute on very short notice. But that is something that is specifically 抖阴福利导航’s strength, while most services you know, a bookstore is not gonna have an interpreter on staff and you know, a local news station probably won’t even have someone that they can get to without like, multiple days 鈥� if not weeks 鈥� notice, so.听

Sydney: Yeah, so it can definitely be tricky trying to sort of strike that balance. It is always something when I’m invited to a festival or for an interview that I immediately shoot back to them saying I need an interpreter. Oftentimes, you just don’t get a response. They kind of ghost you after that is very unfortunate.

Miri: Very cool of them. Very cool.听

Sydney: Yeah, and they say, “We can’t provide that, but you can bring your own,” or whatever the situation is. It can be very difficult to navigate. Of course I always want the interpreters to be paid for their time because they’re doing such great work, but sometimes nobody has, you know, the ability to, to do that. And I’ve been very lucky, like I said, to have some interpreters donate their time. One of the interpreters I’ve been working with recently actually works at 抖阴福利导航, and it’s been awesome to have that.听

Miri: Shout out to them.听

Sydney: Yes. That sort of connection as well. And 抖阴福利导航s interpreting programs are always really awesome. So I’m, I’m excited to be here doing the interview with 抖阴福利导航 in general, but I, I love what yay y’all have going on in terms of the ASL.听

Miri: Yeah, we are very fortunate to have, to have people who are willing to put in the resources to making interpretation accessible, which it is not even at other universities,听

Sydney: Right.

Miri: with, you know, similar or greater student body needs. So you mentioned right at the start of this that you are also a musician and singer. What is that like, being hard of hearing?

Sydney: So I have not been in the sort of musical world for a while. After I really started pursuing the writing full-time, I’ve devoted all my energy to this. But music still has a huge influence, obviously in my first two books and my life now. Yeah, relearning that sort of connection to sound and the vibrations has been one of the most informative experiences just of my life, sort of in general, and one of the first moments where I sort of learned my own way of doing something because of my disability. Which, I do that so often now, where I’ll do something slightly different than is typically normal, or whatever it is, however it works for me and my needs at that time. But I still heavily use vibration equipment. I have a speaker that has a lot of vibration on it, if I’m listening to music or, I use bone conduction headphones when I’m listening to music or audio books even, because it sort of bypasses your ears, which it’s a really weird sensation when you’re getting used to it. But now I have those on like 24/7 pretty much. Yeah, I’m always listening to music. Like when I’m writing my ADHD brain needs something to latch onto that’s not just staring at my screen. Yeah, music’s definitely a big part of my life still, but my writing has now shifted from writing songs to writing books, and that is now my main creative outlet, for sure.听

Miri: So what is your, like, go-to writing playlist if you have one? Or d’you have different playlists based on the mood of the scene you’re writing?

Sydney: Yeah. So I always make specific playlists for whatever book I’m working on at that time, but I will definitely switch the mood depending on if I’m writing a sad scene, I’m not gonna be listening to a really like happy song. Um, but I typically listen to songs in foreign languages when I’m writing, because when I’m listening to songs in English, my brain tries to latch onto the lyrics.听

Miri: You just think of those words.听

Sydney: Yeah. And then I just think of those words and I can’t remember what I was typing, or I’ll straight up type the lyric into my book.

Um, that or English songs that I know the words a hundred percent so my brain’s just kind of ignoring them at that point. So like a lot of interesting Five Seconds of Summer songs, One Direction, Disney Channel original songs from my childhood movies. I’m not gonna focus on the lyrics ’cause I know them so well.听

Miri: Has there been a time when you’ve been writing a scene that a particular song came on and you’re like, “Yeah, that fits.”

Sydney: Yes, one hundred percent. There are specific songs that I will like forever associate with scenes or chapters in some of my books. Yes.听

Miri: Nice. Yeah, I, uh, is seven songs and they’re all, they’re all, uh, ’90s gangsta rap, plus one bbno$ song. Because in, you know, in music I don’t really listen to the lyrics. I’m very much like a metal, half of the music I listen to is just incomprehensible screaming, right? Um, which is also how I feel on the inside. So it fits. But I also have to not be listening to something that is, like, effortless to understand when writing something, like, you know, questions for an interview or something.听

Sydney: Yes.听

Miri: Thank you for talking to me today. Was there anything that you want to tell the listeners about?听

Sydney: Well, sort of on the topic of disability rep: my latest release, Someone to Daydream About, has an audiobook edition that is out now. You can get it from your local library, you can listen to it on Spotify, lots of other streaming platforms. And it is actually narrated by , who is a Deaf Broadway actress.

Miri: Nice!听

Sydney: And having that representation layered into the audio production was even more incredible for me as a Deaf author writing a Deaf book and having a Deaf actress narrate it. So if anyone is an audio book fan, I would definitely recommend checking that out.听

Miri: That’s a good point. So were you involved at all in the process of an audio book being created or was that full 鈥� is that something that an author is usually involved in, or is that usually just on the publishing side?听

Sydney: It depends. For me, pretty early on with my publisher for the hardcover said if there’s an audio book, I have opinions, I need to be involved. They ended up selling the audio book rights to a different publisher, which is pretty common, and thankfully in that contract they still put in all of that stuff about consultation. And so there were lots of conversations about how the ASL is gonna be represented, and different narrators and I actually got to go in and record the author’s note and the acknowledgements, so my voice is also in the audiobook. So yeah, I was really lucky to be very involved in the process, which is not true for a lot of authors, so I was very lucky.听

Miri: So how do you handle the ASL?听

Sydney: Yeah, so in the front of the book, there is a note about the ASL for how it appears in the hardcover, where pure ASL is in italics, and 鈥� which is simultaneous communication when someone is speaking and signing at the same time 鈥� is not italicized. So that’s just sort of treated as like regular speech. And in the audio book, there were a lot of conversations surrounding that, because you’re taking a visual language that was put on paper and now making it audio.

Miri: Yes.听

Sydney: So it’s very tricky. So the narrator, who is a very talented ASL performer as well, she recorded all of the ASL lines speaking, and then afterwards would do the sound of the signs, and then they laid that underneath the speech. And so when it’s pure ASL in the audiobook, you’ll sort of hear the sounds of the signing happening underneath that as a way to differentiate it from other regular spoken speech in the book.

Miri: Let’s Talk is an almost exclusively audio production as well, so when we interview Deaf students or teachers or whoever, it’s always a conversation of like how to do that most respectfully.听

Sydney: Yes.听

Miri: …and also comprehensibly. Because the thing that is the most artistically gratifying, or culturally gratifying, might not be the best experience for a listener and vice versa. Um, like we, we had an interview last year with a, a Deaf student who, the room was unfortunately very loud, so the interpreter was hard to hear, in a relatively unrecoverable way. So we had some conversations about how we were going to do this. Like how are we going to do the voiceover of an interpreter who is interpreting someone else?听

Sydney: Yes.听

Miri: Um, so it’s, it’s an interesting thing to think about ’cause it’s fundamentally inaccessible in a way that needs to be made accessible because it’s about accessibility and equality, so.听

Sydney: A hundred percent, those conversations are always kind of tricky, but also very important. ’cause I think getting on sort of the same page and everyone has different preferences and all of that stuff. So yeah, I was, I was really excited that they were taking my opinions into account.听

Miri: Yeah, absolutely.听

Sydney: Really listening to what I had to say about the audio book.

Miri: Yeah. Sweet! Thank you so much for coming in, talking to me this morning.听

Sydney: Thank you for having me.听

Outro

Miri: Thank you for listening to Let’s Talk!, 抖阴福利导航’s broadcast about disability culture. Find more information and resources concerning this episode and others at . This episode was produced by the Let’s Talk! Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resources department, and the 抖阴福利导航 Multimedia department. We air new episodes on our home website, our Spotify channel, , and .

Episode Transcript

Transcript edited by Julie K. and Miri

Disclaimer

Asher: You鈥檙e listening to Let鈥檚 Talk! Let鈥檚 Talk! is a digital space for students at 抖阴福利导航 experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of 抖阴福利导航, 抖阴福利导航 Foundation, or our community partners. We broadcast on our home website, , on Spotify, and on , and

Episode Intro

Miri: Thank you for tuning in for another episode of Let’s Talk! My name is Miri, and today we’ll be exploring the Oregon Association on Higher Education And Disability conference, more commonly known as ORAHEAD. ORAHEAD is a place for people who work in accommodations and accessibility to get together, discuss developments in legislation over the previous year, and swap advice, techniques, and stories with others from all across the state.
Over the weekend, I got the opportunity to talk with some of these incredibly passionate people, to learn about all the different paths they’ve taken to get to where they are today, and how the work that they do means so much to the students they get to work with.

Rosa Ramirez from EOU

Rosa: My name’s Rosa. I’m the Accommodation Specialist at Eastern Oregon University. As a student, I was working three part-time jobs. Full-time student, full-time student athlete. Spring term, my boss at the time just quit鈥攖ook off. And so I was basically doing that job, and then I was like, “Hey, I graduate. Can I apply for that job?” And they’re like, “Yeah, I don’t see why not.” And I did. So that’s how I got into this position. I’m starting my third year.听

Miri: You said full-time student athlete. What’s a little bit about that? What kind of athletics were you doing?

Rosa: I was a female wrestler for Eastern. I was a walk-on.听

Miri: Were you good?听

Rosa: No.听

Miri: No.听

Rosa: Oh, definitely not. I was okay. I could hang with the big dogs, but I was not a big dog.听

Miri: That’s super cool.听

Rosa: Yeah.听

Miri: How did you get interested in this kind of work in the first place?听

Rosa: I wasn’t super interested at first. I was just kind of looking for a big kid job, and this was the spot. I was like, “I’m already doing it. Might as well get paid.”听

Miri: Yep.

Rosa: That’s how I got into it. And then, as the year went on, I was like, “I really love helping students and making them feel welcome.” Funny thing, one of your podcast students was also a student at Eastern, and I worked with him a lot. It was really good to see him finally walk across stage, ’cause I did a lot of his stuff as a student worker. And then I got into the big kid spot, and I was still doing some of his stuff, and then finally saw him walk across his graduation stage. And that was pretty good.

Miri: That was the moment where it hit you, “Oh, I helped that happen.”

Rosa: Yeah. From then, it’s just, “I love helping students.” And I was like, “Wow. I, I helped鈥攁 lot actually. Just little things like that.听

Miri: How long was that?

Rosa: Just last year.听

Miri: Last year. Nice. Did you meet him that same year or before that?听

Rosa: No, so I was a student worker. I was doing a lot of his stuff, but I didn’t get the whole picture of who he was. I was just, ” Hey, you gotta do this audio text.” And I’m like, “Okay, cool.” I just didn’t know.

Miri: And that was working with us?

Rosa: Yeah.

Miri: That’s kind of a crazy coincidence.听

Rosa: Yeah, I know. When you were doing your podcast, I turned over to Taylor. She’s like, 鈥淵eah.鈥澨�

Miri: “It’s Miguel!”听

Rosa: I was like, 鈥淲hy? How’d you know?鈥� But I didn’t know, like what? That was kind of funny.

Miri: It’s a small world of not a whole ton of people who are actually doing it.

Rosa: Yeah.听

Miri: This is probably, what, a quarter of us in this room, in the whole state?听

Rosa: Yeah. It’s still a bunch of us too. It’s crazy.听

Miri: Yeah. Awesome. Thank you.听

Rosa: Yeah.

Claire Lingefelter from LBCC and Dana Gallup from OCCC

Miri: Thanks for having a quick little talk with me. Could you both introduce yourself and where you work?听

Claire: Yeah, sure. I’m Claire Lingefelter. I work at Linn-Benton Community College in Albany, Oregon. I’m an Accommodation Specialist and I work on our care team as well.

Dana: Hi, I’m Dana Gallup. I’m a Student Support Specialist and I work at Oregon Coast Community College. I’ve been doing so for seven years.听

Miri: So what got you started with being a student specialist?听

Dana: It was a little bit on accident.听

Miri: I’ve heard that a couple times.听

Dana: I moved out here for family reasons and needed a job in Ed, and was looking to switch gears a little. I’ve been a teacher and a sub and private tutor, and I would be like, “I would like to have one job, please, instead of three.” And then I got a job that was three jobs in one. But it’s okay! It means that every day is a little different, which is nice. I was really enjoying the transition to higher Ed. And I really come to love the kind of unique situation of a community college. It’s not just your standard idea of a college student coming straight from high school. I mean, I do have those, but I also have folks that are a lot older, that are established, have families, they’re looking to get a different job or a better job, or are coming back to school after years and years away, and there’s a lot of baggage with that. And I feel lucky to get to be part of helping them reach some of those goals.听

Miri: What are the differences in what students have to deal with if they are a fresh student, someone coming out of high school or early college, or someone who’s returning after a period of time, maybe even decades?听

Dana: I feel like there’s definite generational difference in how people view disability, especially. I find that there’s a tremendous amount of shame that people that are older carry. There was a lot of messaging that was very damaging that they were given when they were younger. One of the reasons why I’m glad to have kind of fallen into this work, and the reason why it matters a lot to me is, for example, members of my own family who went to school in the sixties. They didn’t get told, “Oh, you have ADHD, here are some accommodations that might help you have access to your education.” No, they were told to their face they were stupid, couldn’t learn, and would never amount to anything.听

Miri: Yeah.听

Dana: And I’ve seen the pain that they carry to this day.听

Miri: Mm-hmm.听

Dana: It was always, when I was a classroom teacher, and even now in this role in accessibility services, it’s always been about, “I don’t want that to happen to anyone else. I don’t want anyone else to feel that way.” That’s why it matters to me.听

Miri: That’s so cool and absolutely fantastic, reasonable thing, too. I think this is something that a lot of people are saying, is they’re just tired of seeing people be treated badly. So they’re like, “This is a job where I can make people be treated respectfully and with the way that they need to be treated.”

Dana: Yeah. And so the older students, they’ll come to me with a fresh diagnosis, “Hey, I’m 40 something, but I just got diagnosed with ADHD.” And I’m like, “Awesome! Let’s talk about it. Have you experienced this and this and this?” Because everyone has different grab-bag of symptoms. And they’ll go, “Yeah.” I hear that all the time from other students, “ADHD, really? Yeah. Let’s try these. Have you heard of these strategies?” And we have a whole fun conversation. Well, funny to me. It’s fun because I’m a nerd about this stuff, you know. We have this whole conversation about it, and then you can sometimes, with some of those conversations, you can just see their shoulders sag in relief.听

Miri: Mm-hmm.听

Dana: And they go, “Wow, this is so cool. I didn’t know that there were all these accommodations out there.” And I’m like, “Yeah! Let’s set ’em up for you.” Of course, not every conversation is like that or that easy, but those are the ones that kind of stick with me as, “Let’s keep doing this job, even if it’s a tough job sometimes.鈥�

Miri: And what about for yourself? How’d you get started in working in accessibility?听

Claire: I kind of, similar to you, moved out to Oregon because I had some changes in my personal life, and my family has moved out here over the years. Originally from the East Coast, and I was teaching middle and high school Spanish for four years on the East Coast. And then when I moved out here, was substitute teaching and also private tutoring and the whole nine yards. I live in Corvallis, Albany, and it’s just a smaller area, and there aren’t as many jobs teaching. I also was considering what else do I wanna change in my life? Thinking about other ways that I could stay working with students, but maybe try higher Ed. Community college has always appealed to me as a place to maybe teach someday. I like the idea of that space, having gone to community colleges myself, and this feeling that the students really wanna be there as a step to a four-year institution, or they’re coming to change, like you were saying.听

Miri: About people at community colleges鈥�

Claire: Yeah.听

Miri: 鈥攚anting to be there. And that being such a big change from high school, middle school鈥�

Claire: Exactly.听

Miri: 鈥攚here you’re forced to be there.听

Claire: Yeah. I love that. I think the shared motivation that a lot of students have to be there, it’s great. So this job opened up and I applied, 鈥榗ause I thought I might be a good fit. Especially because I got a master’s degree when I was still living on the East Coast, and it was focused on teaching students with dyslexia foreign languages. And 鈥榗ause that was one of my passions when I was teaching Spanish, I ended up with a lot of students with dyslexia in my class. I was in, sometimes, private institutions where nobody was telling me about accommodations. I was coming up with it myself. And members of my immediate family have dyslexia and stuff, so I already felt quite passionate about finding best practices for that. Coming into this job, I felt that was something I could continue to work with students on, and then partner with professors鈥�

Miri: Mm-hmm.听

Claire: 鈥攆iguring out those best practices and good accommodations for students with dyslexia. That’s a lot of my work now with our students with print disabilities. I have members of my immediate family who also have a lot of mental illness and ADHD and other neurodivergence going on. And those who have gone to college in my family have had, at other institutions, negative experiences with disability services that enraged me, frankly. And so, um, yeah, I felt this is work that I am both interested in and have personal experience with, and also feel passionate about. It needs to get done, and I wanna do it well, and I still get to work with students in community college. They wanna be there, I wanna be there. I love the problem-solving. Every day is a new puzzle, and it really is like you said, it’s fun for me to talk about strategies and things. Even if you don’t have a diagnosis, you coming with a constellation of struggles, then we can figure out ways to accommodate whatever you’ve got going on. Even though often the circumstances are not great for students, it feels good to be able to put something in place that will help them be on a path to being more successful in the future.听

Miri: You said 鈥減rint disability?鈥� Sorry.听

Claire: Yeah, so we have students who will come with diagnoses of dyslexia, or other disabilities that might affect their ability to read or understand print with their eyes. And I just end up working with a lot of students who need audio books or some sort of assistive technology. Sometimes students with vision disabilities, although we have another member of our team who also works with us. Everything overlaps in our team. Yeah, a lot of students with both diagnosed and undiagnosed reading disabilities and related things come to me.听

Miri: Interesting. And, sorry, I think I cut off a question of yours.听

Dana: No, I just鈥攚hat was I gonna say? Oh, no, cut this out. Um, I feel like so many students come in to my office, and even if they’re not conscious of it, they just want to be heard.

Claire: Yeah.

Dana: They need someone to listen, and they need to feel like the person listening cares. I may or may not be able to do something about all the things that they have to tell me about, but I can try to point them towards other departments or other services that we have, and I can just, at the very least, be an active, sympathetic ear.

Claire: Mm-hmm.听

Dana: And I find that that’s a huge part of it.

Miri: Yeah. That seems like one of the most common things that students end up needing. Even if they aren’t given a direct accommodation through official channels, just having someone they can go and talk to and be listened to and respected, especially for high schoolers, often for the first time in their life.

Dana: I’m struggling, and I want someone to see me.

Claire: Yeah.听

Miri: Yeah, exactly.听

Dana: And I want that struggle to be acknowledged, that it’s hard, instead of being told that it’s some flaw of mine or something in my head.听

Miri: Mm-hmm.

Claire: I love it when students come in and either they have a diagnosis that’s new to them, or they’re just feeling a lot of shame about, like, “Oh, I feel like it’s such an imposition. I’m taking out people’s time just being here. I hate asking about accommodations.” And we talk about it in certain accommodations, and they’re like, “Oh gosh, seems like so much.” And I’m like, “Yo, this is so normal.”听

Miri: Yeah.听

Claire: Like, it is normal what you are experiencing in the spectrum of things I see all day. It’s so normal. It’s all in this spectrum of human existence. Normal.

Miri: Yeah.听

Claire: And they’re like, “Oh, okay, okay.” I love, sort of similar, they get to be heard and also be validated in their experience.听

Dana: Yeah.听

Claire: Yeah, of course, X, Y, Z thing that you’re dealing with is difficult, and that’s normal based on what’s happening in your brain and body.

Dana: I really try to push the “different operating system” metaphor. 鈥淭here’s nothing wrong with you. You’re running Mac OS in a Windows world.鈥� You know? 鈥淚t’s obnoxious because there’s some compatibility issues with the brain wiring that you have.鈥�

Claire: Right.

Miri: Mm-hmm.

Dana: And the way that things are designed. And that sucks.听

Claire: Yeah.

Dana: And try to think of it that way. And again, I have, like, my stupid pet analogies that I use with students, but I use that one a lot because I’ll have students who come in with that baggage and shame that I mentioned. Your brain wiring is just a different kind of brain wiring.

Claire: Right.

Dana: It doesn’t mean it’s less.

Miri: That really emphasizes that it’s not something wrong.听

Dana: Yeah.听

Miri: It’s just is something that is different.

Dana: There can be things that that brain wiring is really good at. Not to like invalidate the fact that it’s a disability. You are disabled by it. There’s things that are gonna be really hard, depending on the situation for you, and that’s awful, right? That’s a struggle that I never want to go at it from toxic positivity either. Like, “Oh yeah, your brain is a superpower!” For example, it can help someone with ADHD feel better to be like, “Well, you know what? You might have a lot of trouble with executive dysfunction, but I bet you’re amazing at coming up with a billion good ideas in a group project. You are like the ideas person, usually.” And they’ll go, “Yeah. I mean, I kind of am.” And I’m like, “Awesome.”

Miri: Mm-hmm.听

Claire: Exactly.听

Miri: Awesome. Well, thank you guys both so very much. I love hearing smart people get really into something and just, like, be like, “Oh yes, this is something my brain likes,” and then just letting them go. It’s just, it’s one of the best parts of my job. Just listening to smart people will be smart for a little while. It’s the best.

Dana: Well, thanks for calling us smart. I appreciate it.听

Miri: You’re both smart, dedicated, and passionate people.听

Dana: And I’ll have to, at some point, connect with you about resources for dyslexia.

Claire: Oh, sure.

Dana: I got a couple students I’m working with, and I feel like I could know a lot more about it.

Claire: Sure. Yeah.听

Miri: Mm-hmm.听

Claire: For sure.

Sarah Livengood from PSU

Sarah: My name is Sarah Livengood. I work at Portland State University. Full title is Assistant Director for Alternative Access at the Disability Resource Center.

Miri: What got you started in working in accessibility?听

Sarah: I’m one of those students that took years to get their degree. It took about 20. I went to 抖阴福利导航 right away after high school. But then there’s this trajectory, “I gotta quit school ’cause I gotta go work, and I can’t do school.” Just a pretty normal path. I decided at some point in my mid thirties, I finally built up the confidence. “I want to go get my master’s degree, become a mental health counselor.” So I gotta get the bachelor’s outta the way.

Miri: Mm-hmm.

Sarah: Enrolled back in PSU, then quickly found it was so hard to keep a job and do that. I was just running into the same thing, and I’m like, “Well, why don’t I get a job on campus?” So I got a job in the Disability Resource Center. I’ve actually worked there for, like, 10 years. Started as a student employee.听

Miri: Yeah. The second person I’ve talked to was, “I’ve started out as a student employee,鈥� and then just kind of really liked this.”

Sarah: Yeah, no, it was really cool. By the time I was graduating, they had an opening for front office assistant. So I was like, “Oh, I wanna stay.” I got the job, became the office manager, and by that time, I was pursuing my master’s degree and stayed there.听

Miri: What’s your master’s in?听

Sarah: My master’s in Clinical Mental Health Counseling.

Miri: Nice.听

Sarah: I still have aspirations to be a mental health counselor, but I love the work that I’m doing at the DRC, so I don’t think I can leave it just yet.听

Miri: Yeah.听

Sarah: Yeah.听

Miri: So what is your favorite part of doing this? What is the thing that gets you out of bed and to a very emotionally draining and, uh, resource-difficult job?

Sarah: Yeah, I mean, it has changed over time. In the beginning, I was like, “I need money. I’m needed, and I have a hard time leaving jobs. Great team to work with.鈥� But as I moved up into positions, like I was an access counselor for many years, a Disability Services Counselor, and that’s where I really started learning how to interpret the law, really think critically about barriers and students’ needs, and pair them up with accommodations. I was like, 鈥淭his is really cool.” I’m really proud of it, that we are doing it, that I’m doing it. And then, as I’ve gone up, I’ve started working with faculty more often. So all that coordination, yes, it can be really hard and people hate you, but I think it’s just so cool once you finally get something going. But I think the most centered kind of response is I believe higher education is to upward mobility, identity and all these things people deserve. If accommodations are part of that, then I wanna make that accessible to people too.听

Miri: And your master’s is in mental health?听

Sarah: Clinical mental health.听

Miri: Yeah. How much of what you see in your day-to-day is mental health-related disability versus, like, physical injury-related disability?

Sarah: Mental health is huge. I think it represented 95% of our students. Not that it was the only disability, but it was the most prominent. Students had mental health disabilities, but they also had chronic anxiety or depression, or any mental health condition was the largest represented. I believe it probably still is.

Miri: Mm-hmm.

Sarah: I still see a lot of that. I see a lot of chronic health, chronic medical conditions, and neurodivergence is pretty big now too.听

Miri: What is the line between getting mental health accommodations versus just neurodivergency accommodations, even in the approach, if the end result is the same?听

Sarah: Yeah. I try to ask students, “Okay, you’ve disclosed you have such-and-such disability. Tell me, when that’s active or when it’s symptomatic, what is that like for you in the classroom setting?” I go straight to the barrier. We think of the accommodation and we match it up with that to address that specific thing. I guess you could say maybe mental health disabilities are gonna attract more things like flexible attendance or breaks during class or turning your camera off, versus neurodivergence might be alternative to presentation or alternative to group projects. But we don’t like to do that in this field. We don’t like pigeonhole. My training has very much been, “Stick with the barrier” and go from there.听

Miri: Nice.听

Sarah: Yeah.听

Miri: That’s really cool to hear.听

Sarah: Yeah.听

Miri: One of my favorite parts about doing this is getting to hear smart, passionate people talking about the thing they are passionate and knowledgeable about. I’m always lucky to get to talk to people who are like that.听

Sarah: Yeah.听

Miri: Thanks for your time.

Sarah: Oh, no, thank you.听

Miri: And I am very looking forward to trivia.听

Sarah: Let’s do it! I hope you enjoy trivia. I love it. It’s like the fourth or fifth year I’ve done it here at the conference. I need to release, like, my greatest hits.

Miri: What started you doing trivia?听

Sarah: Well, I started doing trivia as a side job many, many years ago. I was just looking for part-time work and going to it, like bar trivia.

Miri: Mm-hmm.

Sarah: I would see people host. I had a friend that was hosting, actually a neighbor and a friend. It just looks fun. I bet I could do it. And one day I was like, “I wanna try it.” And I loved it. The first time was scary鈥斕�

Miri: Mm-hmm.听

Sarah: 鈥攁nd I was really shy, but it’s more get to play music and people have so much fun. And I wasn’t ever really writing the questions back then. I was working for a company that provided questions. I was just speaking and being a good host and entertaining. I like to do that.听

Miri: Mm-hmm.听

Sarah: I guess the music was the most fun, like pairing up the music. A lot of teams liked when you would give them hints or you would kind of make a theme going on and tie the music in. So that was really cool for me. Yeah, and then people get word that you’re a trivia host, and they’re like, “Well, can you do it for everything?”

Miri: We love doing trivia.听

Sarah: Yes. Yeah, no, it’s fun. I love hosting. I’m looking forward to it.听

Miri: Awesome.听

Sarah: Yeah.

Miri: Thank you so much.听

Sarah: Yeah.

Miri: I’m ready to win!

Sarah: You’re welcome. Yeah, do it.听

Miri: Awesome. Thank you so much.

Taylor Smith from EOU, Sarah Liven at PSU, and Jewls Griesmeyer-Krentz at WU

Jewls: The future is accessible. We need to envision a way to make that possible and tangible and something we can work towards. Something beautiful and attainable. That’s everything to me.听

Miri: And that could be the soundbite. That’s the start of the episode.听

Sarah: Yeah. You should have pressed record.

Miri: I did.听

Sarah: Oh, good.听

Jewls: Oh, okay then. There you go. One of my favorite things when I’m working on planning a conference鈥� and one of the things I’ve tried to do, as ORAHEAD president鈥攈as been to try and build community. If I could think of one thing that’s the most important for me, has been to build community and build vision and purpose around that. So when we do a conference, having that overarching theme we’re working towards, to me, has been really important. It’s the last couple of conferences, there’s been a theme that’s driven it, and I like that. I like being able to look back and say, “Oh yeah, that was the one that worked on community,鈥� or 鈥渨orked on building an accessible future鈥� and having a purpose, a mission that we could grow teeth with.

Miri: Mm-hmm.听

Jewls: Or “That was the one that was the day after the election last year.”

Miri: Yeah. I was hearing about that before the conference from Phyllis, and she was like鈥斕�

Sarah: It was weird.听

Miri: 鈥攊t was an energy like she’s never experienced before.听

Jewls: I still get chills when I think of that鈥攕tanding up in front of this room full of people and the looks on everybody’s face. We’re all just devastated. And yet, I can’t assume everybody’s political position, and I have to figure out something to say because I have to name it. I can’t just let that go without saying anything. So I just say, 鈥淭his is hard. This has been rough. And whatever side of the political spectrum you’re on, we’re all hurting.鈥� And we gotta name that, because we all have to be together in this. No matter what, we all have students at our heart, all working towards the same goal, and that is access and accessibility for students. We’re all on the same mission. So how do we do that?听

Miri: Yeah. No matter which side of the political spectrum you’re on, whoever you voted for, if you are doing this kind of job, you don’t want to see the resources for your students disappear. They’re the reason you do this, I would assume. I mean, nobody’s doing it for the pay.

Jewls: Yeah.听

Miri: And it’s because there are students who we care about and people who we want to see live their fullest lives. If those reasons or resources are taken away, then that makes everything harder and a little bit sadder.听

Jewls: It does. And we set aside time for just collective grieving at lunch, or just a space for that. I think that was important. Setting the tone for community is huge, because if we don’t have the trust of our colleagues, if we don’t know our colleagues and can’t rely on them to have input and answers for the tough questions when they come up, we’re in this by ourselves鈥� and this is hard work. This is hard work in hard times. That’s what I’ve been the most interested in. That, for me, is what I can focus on. The thing that I can do.听

Miri: Mm-hmm.听

Jewls: To build an accessible future is to build a community.听

Miri: And it’s an incredible thing. It’s an impressive thing. It’s hard to do, and as obviously as, you know, playing everything and getting everyone to do the same thing, care about the same thing, communicate in a meaningful way.听

Jewls: Well, and even harder is finding a way to build a sense of belonging when you don’t agree. Ben McBride talks about expanding the circle of human concern to include those people that we don’t necessarily agree with. But we can find some sort of common ground, or we can build a sense of belonging with or find a bridge. And I think that’s for the work we do, it’s hugely important. We have a lot of professors that we work with that do not agree with us. Full stop. We need to find a bridge. And in order to do that, we need to expand the circle of human concern to include them and their concerns. What are they concerned about? Because most likely, they also have students and student concerns that are at their center. They are also interested in student learning. So, how do we build that bridge?

Miri: And for the record, what’s your name and where are you from?听

Jewls: Oh! Sorry鈥擨 just went woobooloo!听

Miri: No, that was amazing.听

Jewls: Yeah, I鈥擨鈥擨 talk…

Miri: And we listen. That’s the point.听

Jewls: My name’s Jewls Griesmeyer-Krentz. I use she/her pronouns. I’m the Assistant Director of Accessible Education Services at Willamette University, Pacific Northwest College of Arts specifically, and I’m also the president of the Oregon Association of Higher Education and Disability鈥擮RAHEAD. Happy to be here.听

Miri: We have with us also two more excellent, brilliant people. If you could introduce yourself, tell us where you’re from and what you do?

Sarah: I’m Sarah Livengood, Assistant Director for Alternative Access at Portland State’s Disability Resource Center. I’m also the treasurer on the ORAHEAD board.

Miri: Nice.听

Taylor: And my name’s Taylor Smith, the Assistant Director of Disability Services at Eastern Oregon University.听

Miri: Nice. So how did you get started doing disability advocacy?听

Taylor: Great question. I started out, actually, as a student worker within our learning center on campus. And throughout my experience in being a student at Eastern, I had a lot of great mentors. And in terms of my kind of professional career path, I was uncertain about what I wanted to do in the future. The one thing that continued coming back to me was I knew that I wanted to work with people, and I wanted to be in a role where I could serve people and help.

Miri: Mm-hmm.听

Taylor: That was a guiding thought for me. And like I said, I had great mentors that continued encouraging me about finding my path and going towards something that I was passionate about. I was encouraged to apply for the accommodation specialist position in our office, worked in that role for a couple years, and it was awesome. I gotta work one-on-one with students and really get to know students on a deeper level, and understanding some of the struggles or the barriers they were experiencing. I just knew that I wanted to continue with that work.

Miri: Nice. And the role you have now鈥攈ow has that furthered that?听

Taylor: Yeah. So I am doing a lot of the intake meetings with students.听

Miri: What is an intake meeting?听

Taylor: It’s a key component to understanding limitations students with disabilities face and understanding what challenges they may experience in the academic field. So, in an intake meeting, there’s a lot of questions, lot of getting to know the student鈥攚hat they’re passionate about, what their future goals are, courses or field of study they want to look into. It’s really just having a conversation, engaging with a student, and getting to know them.听

Miri: And you get to do that as a primary part of your job now?听

Taylor: Yes.听

Miri: Nice.听

Taylor: And it’s my favorite. Love getting to work with students, getting to know them, be a part of their path to their future. And yeah, just understanding what kind of makes them tick and what gets them excited about their future.听

Miri: That’s super cool. I don’t work student-facing鈥攐r at least not the public student-facing. I just work with our student advocates who are already a paid group in the school. So hearing from people who work with students at that level is always super interesting, because that’s just not something I get to see in my day-to-day job, which is looking at a bunch of waveforms and putting ’em together, fixing transcripts and stuff. So that’s super cool.听

Taylor: Yeah. I mean, I started out with some of the more technical and technology components to the position and understanding some of the accommodations that were available to students, which I think was helpful in transitioning to communication and understanding student role of just engaging with students on a more one-to-one basis. But yeah, I definitely love the interactive process and just getting to know students on a more personal level and getting to understand what they enjoy doing on campus, what they’re learning in their field of study, and what their hobbies are and just trying to figure out ways that I can best support them in whatever their future goals are.

Miri: And what got you started in this whole thing? Which I guess I’ve asked about before, but鈥斕�

Sarah: That’s okay. You mean in the field of disability services?听

Miri: Yeah. Or what got you to start in the position you are now?听

Sarah: Um, well, a very long process, but鈥攁ctually it’s kind of funny. I’m a long-life adult learner. Completed my bachelor’s degree鈥擨 think I was like 38. And while I was doing that, I decided to get a job on campus at Portland State and got a job at Disability Resource Center. And Jewels, with us today, was my supervisor. She hired me as a classroom assistant to assist blind students in the classroom, providing descriptions of things written on the board and things in class.听

Miri: Mm-hmm.听

Sarah: I did some alternative formats work too, which I loved鈥攂eing able to remediate documents. And then from there, I became office manager and access counselor consultant. And I threw in my hat for the Assistant Director, 鈥榗ause I was like, 鈥淭here’s something about this job that I just didn’t wanna leave.鈥� I really liked my team, which is completely different from where I started. But like Taylor was saying, I just really like being a part of a student’s journey. And then just the more I learned about the ADA and all the different policies that you bring together鈥攜ou couple that with鈥�

Miri: Like Title II, which we know now.听

Sarah: Title II, which we learned today in trivia. You take all of these policies, and the law, your built-in compassion and sensibility, and your wanting to help that student achieve what they wanted. You use all of that to come up with a set of accommodations. It sounds so ridiculous, but it’s so much more than that. That’s the big drive that’s really kept me here. I joined the board鈥攇osh鈥�

Miri: The ORAHEAD board?

Sarah: The ORAHEAD board… what, 2017 maybe?

Jewls: Oh, like maybe a year or two after I did?

Sarah: Yeah.

Jewls: Maybe?

Miri: Were you still both working at PSU then?

Sarah: Uh-huh.

Jewls: Yeah.听

Sarah: And one of our coworkers comes out of her office. She’s like, “Would anybody like to join the ORAHEAD board as treasurer?” And I was like, “Me.” Because when I was office manager, I was a financial person. I mean, admittedly, that’s a good resume builder. You know? And I was like, this drive of, 鈥淚 wanna be in this field鈥攁nd yeah. I wanna be on a board.鈥� So I became treasurer, and I’ve been here ever since, ’cause nobody wants to be the treasurer.听

Jewls: And it’s because you do it amazingly well and nobody can measure up.

Sarah: Oh, I don’t know about that. But being on the board is really fun. You get to plan these awesome conferences.

Jewls: It’s amazing.听

Sarah: Yeah, that’s the best part. And then just learning, getting to meet people on a regular basis. We have board meetings and we discuss the conferences, but we also discuss initiatives we wanna do. And, that’s just been really fun. I don’t know if that answered your question, but鈥�

Miri: Perfect.听

Sarah: Yeah. Thanks.听

Miri: So how did you get involved in both in ORAHEAD and disability advocacy?听

Jewls: Oh, boy. Okay. I had a very circuitous pathway. I started my higher education journey as an acting major down at USC. Ended up coming back to Portland because LA is an evil place when you have anxiety, ADHD, and a lot of other things. So I went to Portland State and I got my degree in Psychology. But I decided I wanted to be a historian and ended up in a master’s program at Portland State for History鈥攕pecifically medieval history. I was doing Latin. I actually taught Latin at 抖阴福利导航 for their non-credit program. And I was working on my master’s鈥攄one all my coursework, done my comps, was almost done with my thesis. Then I got divorced and sick. Very sick. And it became clear my pathway I had planned for myself鈥攖o get my PHD and become a professor of History鈥攚as not possible, because that would’ve been moving. And I had two little kids at the time when I was a single mom and had an abusive husband. Ex-husband. It was a very difficult time. So I had to rethink things a little bit and in thinking about it, I always knew I wanted to teach. But what I found that I loved the most as a graduate teaching assistant, was when I worked one-on-one with the students with disabilities. I loved that. So I did a right turn and ended up shifting my master’s degree鈥攎uch to my federal financial aid chagrin鈥攖o a master’s in rehabilitation counseling. And decided I was going to be a rehabilitation counselor and work with students with disabilities. That’s when I got sick and had to stop working. I did finish school, but I couldn’t work for a while and eventually got to the point where I could work, got the job at Portland State, and do my dream job working with students. I love working with students. I love figuring out what works, thinking outside the box, getting to use the creativity and the excitement of having something that like鈥攜eah. God, there’s nothing better. Like, damn it, when it really works, it works, and it’s so good. And when it doesn’t, it can be heart-crushing. But when it works, it’s so good. Now I love helping others to help others. That’s my new favorite thing. There you go. That’s my circuitous pathway.听

Miri: From everyone I’ve talked to this weekend, there’s been almost no direct pathways into this. Almost everyone I’ve talked to has been like, “I was studying something at this school. I started doing student employment, then just kind of fell into this role. I’d realized that it’s what I was meant for.” Or someone who’s like, “Yeah, I was planning on doing computer science and I was getting a degree in that. Then I realized that was really stupid, and the way the teachers talked to people was really mean, so I wanted to fix that.”

Sarah: Mm-hmm.听

Miri: Like, just a lot of circuitous roots into finding this.听

Sarah: Yeah.听

Miri: Which is super interesting, ’cause that’s all about people discovering their passion for this instead of something that they wake up one day when they’re eight and decide they want to do. I’m sure there are a few of those. But it’s really interesting how this is something that sticks to people once they start doing it.听

Jewls: It is. Once it grabs hold of you, there’s very few of us that let go of it. We get burned out because we are vastly under-resourced. I don’t know that there’s any single one of us that would say that our offices have enough resources.听

Miri: And how much does having the ORAHEAD community of like-minded and similarly under-resourced people from other education centers help with that under-resourced, do you think? Like, being able to get people together and combine thoughts and ideas鈥攈ow much does that affect what you’ve done or what you think other people have been able to do?

Jewls: It makes all the difference. I don’t think that we could do what we do without the think tank and the feel tank.听

Sarah: Feel tank. Yeah.听

Jewls: That is ORAHEAD. Yes, we share ideas, but we also share the moments of joy and the moments of exasperation that come with our jobs. It’s a think tank and a feel tank.

Sarah: Yeah. I look at like, “Why have I been at PSU for 10 years?” All of my jobs, I stayed at for long periods of time because it’s hard for me to leave a job. It’s hard for me to disappoint people. I don’t wanna quit. I’m needed and can’t leave because whatever. But having a community, like ORAHEAD, being, “Wait a second, no, no, no, no. I’m in this job because this is cool. What we’re doing is pretty awesome. No, we’re going to fight back against these rigid policies of schools and instructors. We’re going to provide accessibility鈥攁 pathway for students that are trying to achieve the same thing we did in our own educations.” The fight is definitely a big part of it.

Jewls: Mm-hmm.听

Taylor: I think it’s been really valuable to connect with other professionals in the field. There’s a lot of times we’re navigating really complex systems and policies and processes. Every student we’re working with is unique. They have many strengths, many different backgrounds, and ways of navigating the world, so no two students are alike. Every student that comes into our office is a new opportunity to understand something you’ve never understood before, right? It can be challenging because you don’t necessarily have all the answers right away. And having ORAHEAD and people that get the work, they understand the work, has been invaluable and just navigating really complex situations and finding ways to advocate and help students get what they need.

Miri: Yeah, that was something that was one of the presentations earlier鈥攁 group discussion about how to deal with different situations. So different people from different schools came up and asked the group, “Hey, this has been a weird situation that has come up in my professional work. How should I deal with this? What is the right answer?” Having a space where you can ask that question and get different, sometimes contrary answers, is important. Because if you just ask one professional, they’re gonna come at it from only their perspective. Especially the sizes of different schools鈥攍ike 抖阴福利导航 is way bigger, has way more resources than a ton of other community colleges in the state鈥攋ust because we are based in a city of over a million people with, like, 50,000 students鈥斕�

Jewls: Mm-hmm.听

Miri: 鈥攅very year. As opposed to somewhere out in eastern Oregon or southern Oregon. Or southeastern Oregon, where there’s approximately one person per cactus.

Taylor: That’s another interesting thing about these conferences too. Specifically, we are all coming from higher Ed, whether that’s a community college or a four-year or private institution. There’s someone that’s likely going to have a similar setup as you. And so, kind of what you were just explaining, Eastern Oregon University doesn’t necessarily translate to 抖阴福利导航, right?

Miri: Mm-hmm.

Taylor: Because 抖阴福利导航 is serving thousands of students, and our population is not as big as that. But in conferences like this, we still get the opportunity to connect with schools that are more of a similar size and demographic. So it’s cool to be able to have this as a resource and have that connection with other professionals that you don’t feel so alone or isolated in the work you’re doing.

Miri: Yeah.

Taylor: And sometimes it can happen that way. I know, just in universities in general, there’s a lot of silos鈥攁 lot of people that are just on their own doing their own work and moving through it. With our roles specifically, it’s so much student engagement, so much faculty engagement and staff and moving parts. There’s just so many different aspects to the job you have to be in the know about, and having multiple moving parts makes it more complex. Being able to, like I said, getting to understand different perspectives, get more ideas from professionals that may have had more experience in that specific situation鈥攐r they’ve navigated something similar鈥攇etting varying viewpoints to problem-solve through those situations has just been really awesome.

Jewls: Yeah. It is amazing to be able to connect with other people from other universities that have the same type as you and get those perspectives. It’s also interesting to engage with those that don’t have the same type and you can get some other perspectives. Regardless, it’s like I said yesterday morning, “How many people in our lives do we have, especially if we’re in a one-person office or a small office, do we engage with on a daily basis that get it?”

Sarah: Yeah.

Jewls: I mean, my wife is awesome. She really is.听

Miri: Let’s hear it for wives.听

Jewls: I mean, like, she’s amazing, and I honestly say as wives go that aren’t in the field, she gets it as much as she can. But she doesn’t get it the way that my colleagues here get it. And to be able to engage with other people that get it鈥攁nd I don’t have to explain it鈥攆irst, there’s this shorthand to it. To be able to let that part go when there’s that one professor that does that thing, right? And you go look at me in the eyes and, “Oh, yeah, I know that one.” Right? And it’s just like, “You see me.” That’s huge.听

Sarah: I think you were talking about the Listserv in real time, hosted by former board member Jeffrey Larson. But, that is just a true example of how critically we have to think about the issues we do. We can’t just look it up in a book and go, “Okay, there’s the answer. We’re good.”

Miri: Mm-hmm.

Sarah: We have to take so many things into perspective鈥攜es, the law, the student’s identity, the specific school you’re working with, the instructor and their whatever.听

Miri: Your budget.听

Sarah: Your budget. So many things. You have to take all, and that’s the really cool thing about this job. That is how you do individual justice for somebody, ’cause you have to think about all that. That’s these conferences.

Jewls: Yeah.听

Sarah: That’s where you feel that.听

Miri: Mm-hmm. I like how this conference has fairly equal representation between different sizes of schools. I mean, for some reason 抖阴福利导航 sent about 37 people. Um. But, like, the big schools鈥擮regon State, University of Oregon鈥攈ave the same number of voices in this room as smaller schools, like Reed, or very small schools like rural community colleges. And having equal voices who are able to raise different levels of concern is important and interesting, because a big school can be like, “Oh yeah, throw money at it.”听

Sarah: Uh-huh.听

Miri: There’s hoops that they have to jump through and people who are like, “Oh, I don’t want to spend that money.” But, there is the money to spend, as opposed to some very small schools where they’re like, “Well, our budget is $4 and most of this sandwich.” Which is a thing we have to think about as disability advocates and people who are trying to make things easier for our students, even though that costs money sometimes. Like getting interpreters for classes, which will be $400 a week per class. Or getting extra accessible technology in classrooms or online, which can be who knows how much. Which is a different level of struggle for every level of education鈥�

Jewls: Mm-hmm.

Miri: 鈥攊n our state. And having that all roughly equally represented here has been really interesting to see and hear.听

Jewls: Mm-hmm.听

Miri: So that’s a valuable piece of this that is underappreciated from anyone who doesn’t know.听

Jewls: Yeah. That’s part of what keeping the price and the location accessible has been a focus of the board as we’ve planned this. That’s something that certainly we’ve talked about and a concern as we plan what we’re doing. Like how much are we paying a keynote if we do this? And can we do this? What are we doing? How many meals do we provide? If we do that, can we do this? How much can we charge? It’s a lot of thought.

Miri: Mm-hmm.听

Jewls: But we wanna make sure there can be people attending from all of the different听 colleges. That’s a big deal.

Miri: So, there is one more thing I wanted to ask. You mentioned that you did classroom assistance for blind students.

Sarah: Mm-hmm.

Miri: Was there special Ed training you had to go through? To be able to do that? What was that like?

Sarah: Yeah. So it was facilitated by none other than Jewls Griesmeyer-Krentz.

Jewls: That is indeed true.听

Sarah: It was actually a day-long training. We learned about the history of the ADA, of course, but we learned a lot about blind culture. And I’ll let Jewls speak to it too, because she was a creator of the training materials. But I remember the training鈥攚e got to learn, “Hey, these are the core things you’re going to do and this is how you do them.” We had blind students attend the training so we could work with them directly. A lot of guidance from Jewls. But yeah, why don’t you talk more? You could probably talk better about what that training was like.

Jewls: For me, it was really important that that training, first, have a critical foundation in disability studies essentially. But basically a social model so the classroom assistants were not entering into it from a pity perspective or engaging in microaggressions. It would be very easy in that role to do that. So we听

Miri: What would that be like?听

Jewls: Um, well, for example, if the professor asked a question of the student, the classroom assistant might butt in an answer. Or more frequently, the professor might ask the classroom assistant what the student’s name is鈥攖he classroom assistant might just answer what the student’s name is instead of not say anything and let the student answer. That’s an example of a microaggression that would happen frequently. So we would practice on communication, problem-solving, and boundaries. I tried to think about what were all the things I wish I knew when I started helping people and developed a training around those things and included ways to be a human guide that made sense and ways to work with somebody. Mostly, I included the blind students to speak for themselves about what worked for them and what didn’t. I think that’s what made the most sense.听

Miri: What do descriptions for a blind student look like in a classroom setting鈥攅specially in something more complicated, like biology or chemistry, whether it could be color-coded diagrams, for instance?听

Sarah: So, yeah, it’s also a good idea to work with instructors to say, “Hey, when you’re writing things on the board, make sure you’re describing them,” in a very general sense. A classroom assistant might be available to say, “Oh, the instructor is drawing a chart on the board. It’s got two columns with headings, A and B at the top, and then on the sides we have X and Y,” and filling in things. And that’s where it can get a little lost, because if you have a classroom assistant who is a Humanities major鈥攍ike an art major鈥攁ssisting for somebody in a chemistry class, there might be some gaps there, right? Maybe the instructor has written something down completely foreign to them, so鈥斕�

Jewls: Mm-hmm.听

Sarah: It’s great to be able to match a chemistry major to a student, but that’s not always possible. You have what you have as far as student employees. That’s why classroom assistant should be providing visual descriptions or descriptions of things that would otherwise not be seen by the students鈥攕o things they’re writing on the board, things happening in the classroom that could use some contextual information about. Like, “Oh, everybody’s got up and went to this side of the room, so we’re gonna do that too.”

Miri: Mm-hmm.听

Sarah: If they’re watching a video, maybe they need to know that video includes a person with a very sad face while they’re describing something. We try to get universal design a lot, ’cause there’s so much that can be left out. Audio descriptions of films, asking instructors to be a lot more descriptive of what they’re writing on the board鈥擨’m sure you have more.听

Jewls: Yeah, there’s a lot of working with instructors directly to plan ahead so that there’s less reliance on the classroom assistance and more reliance on universal design. But classroom accessibility and classroom access, where there’s a gap, classroom assistance provides a bridge. The biggest thing is a classroom assistant deals in content, not interpretation. As Sarah talked about, they gotta know enough to be able to say, “It’s a theta, not a circle with a line through it.”

Miri: Mm-hmm.听

Jewls: They’ve gotta have enough common vocabulary with the class. Ideally, you wouldn’t need a lot of classroom assistance if professors were used to teaching classes in an accessible way and had their materials to the alternative formats department in a timely manner so the student had alternative-format versions of anything shown in class.听

Miri: Yeah. It seems like everyone in this line of work, the ultimate end goal of their work is that position doesn’t have to exist anymore.听

Jewls: Yeah. Or that that position has changed.听

Miri: Yes. Making classrooms universally accessible, having everything be prepared with universal design in mind, having everything available in two, three, four formats for all students’ access levels. It would be the ideal. And that’s something we’re all trying to work for every day.

Jewls: Yeah.听

Miri: You know, starting from on a student-by-student level, ’cause that’s where it has to start. Those students have to have something.听

Sarah: An instructor describing what they’re writing on the board鈥攊t’s not just helpful to a blind student. It’s helpful to a student who’s behind in class and like, “Oh, I don’t remember what that symbol means.”

Miri: Or missed a week from illness.听

Sarah: Or missed a week from illness, right? Or they’re colorblind, they can’t see the different colors.听

Jewls: Or they’re taking notes and they have to have their head down.听

Sarah: Absolutely.听

Jewls: There’s any number of reasons.听

Sarah: Hence the term “universal.”听

Miri: Yeah. There’s a lot of talk about intersectionality when it comes to different disabilities, or disability and gender, disability and race. But the most frequent and most ignored intersectionality is between every single person having an easier time learning鈥攚hether or not you are a six-foot-one, able-bodied, white football player, or if you are a disabled student of color.听

Jewls: Universal access helps everybody.

Miri: Exactly.听

Taylor: Yeah, definitely benefits everyone.听

Jewls: Yeah.听

Miri: Which is the hope, I think.听

Jewls: I think that is.

Miri: It’s not called “partial design.”听

Jewls: Yeah, no.听

Miri: Yeah. Thank you guys so much for talking to me. Again, my favorite part of this job is hearing smart people talk about the things they know about. So this is always so much fun for me鈥攋ust listening and learning. And, you know, I ask questions that I’m curious about too.听

Jewls: Oh, this has been a lot of fun.听

Sarah: First time recording a podcast.听

Episode Outro

Miri: You’re listening to Let’s Talk! 抖阴福利导航’s broadcast about disability awareness and culture. Working in accessibility is not a glamorous position. You’re perpetually underfunded, understaffed, and underappreciated. One of the things I noticed at ORAHEAD this year is the stark difference between 抖阴福利导航’s representatives and those from across the rest of the state. Of the roughly 60-70 people in attendance, 抖阴福利导航 made up nearly 10 of them. Plus, a lot of the people I talked to, not even while recording, were the representative out of a total team of two at their institution. Having to handle the caseload of their entire school by themselves, alongside advocating for their students and their department, the resilience with which they work is, by the traditional meaning, incredible. A lot of them have been involved in this kind of work since back when they were students, working to provide access to students like them, and to make the world just a little bit better, each day at a time.

Ending Disclaimer

Kylo: Thank you for listening to Let鈥檚 Talk! 鈥� 抖阴福利导航鈥檚 broadcast about disability culture. Find more information and resources concerning this episode and others at . This episode was produced by the Let鈥檚 Talk! Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resources Department, and the 抖阴福利导航 Multimedia Department. We air new episodes on , our Spotify channel, and .

Episode Transcript

Transcript edited by Let鈥檚 Talk! Podcast Collective

Show Intro and Disclaimer

Kylo: You are listening to Let’s Talk!. Let’s Talk!, Is a digital space for students at 抖阴福利导航 experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of 抖阴福利导航 抖阴福利导航 Foundation, or our community partners. We broadcast on our home website, . On Spotify, on听 , and .

Meet Here Together

Asher: Welcome back listeners to another episode on Let’s Talk!. My name is Asher, and today I’m joined by representatives from the . Can you guys start by introducing yourselves to our listeners?

Angela: Asher, thank you for having us. My name is Angela Martin. I’m the executive director of the Here Together Oregon Coalition.

Asher: Thanks for joining us, Angela! And, Alesha?

Alesha: Hi everyone. I am Alesha. I am also with the Here Together Coalition. I lead communications for our team. Thank you for having me today. I will just pause and say that there’s a really strong chance that Angela’s gonna be your gal for all these questions.听

Asher: That’s totally fine. Thank you so much guys for taking the time out to talk to us. We did hear from you from our from the KBOO Live; . Thank you so much.听

Coalition Mission Origins

Asher: What is “Here Together” Coalition, and what does the organization do, and also what’s the mission?

Angela: “Here Together” came together in 2019 in response to a need for funding wraparound services. Our community had said “yes” to affordable housing bonds, so building the structures that were desperately needed. But, we needed the funding for the services and the rent support, that really build that bridge. So, the Here Together Coalition was the champion of the regional supportive housing services measure. Back in 2019, it was passed by voters in 2020.

Asher: Is that the origin story or is there more to it? And what’s the gap that was filled when Here Together was created?

Angela: Those are great questions. Here Together was formed in response to a need for funding that would provide services to people experiencing homelessness. Yes, an affordable home is a critical piece of that, but without rent support, case management, job training, access to medical health, behavioral health; we know that people will not be entirely successful. We need both, housing plus services, to help people transition from long periods of homelessness to a life of stability and health.

Asher: Yeah, definitely. I feel like that’s a very important thing, especially with the current state of homelessness here in Portland.听

Portland Homelessness Today

Asher: How would you describe that right now in your perspective?

Angela: I would describe the current state of homelessness as heartbreaking, frustrating, and politically fraught. And, the end result is that our neighbors who find themselves forced to sleep without a roof over their head, or are struggling to hold on to the roof. They’re the ones caught in the crossfire of this chaos. That often feels like what is standing in place of a system. It’s important to understand that Here Together is unique in this coalition, because we purposely brought folks together around a proverbial table who don’t always see eye to eye, who don’t always come from the same lived experience. So, our coalition is providers, it’s people with lived experience, it’s leaders of faith in its business associations. So, as you can imagine, the conversations around our table can be very robust, there’s a lot of learning, and we don’t always start off in a place of agreement, but we work toward that agreement. That’s something that I believe really makes the coalition unique and important, because that’s what the public is doing. Coming at this from different perspectives, all seeking the same thing. A future where homelessness is rare and brief, in our community.

Asher: Definitely. Yeah, I totally agree with that. Just the whole idea of the community coming together in such a strong way against homelessness is such a big thing. And, I didn’t really even know about homelessness until I came to the States. Although I was born in Texas, at a very young age, I moved out of the states and I was very sheltered, I feel like. Only until I started working and then coming to school here in Oregon did I just see the state of how downtown Portland is like, and just the homelessness of the different people there. I started to educate myself with that, and I’m so glad that you’re here to educate me also by just answering questions and stuff.听

Myths and Root Causes

Asher: What are some common misconceptions people have about homelessness in this city? I’m also asking for myself too, because I feel like there’s a lot of different sorts of misconceptions about homelessness. In the idea of “they’re choosing to be homeless”.

Angela: We’ll address some of those, but I first wanna start off by giving a lot of credit to the public. The public is very sophisticated. Most people I talk to understand that homelessness happens at the intersection of systemic failures. An economy that is not delivering jobs that pay. A housing wage, a rental market that has escalated, beyond the reach of majority of folks in our community. Then that intersection of personal crisis; whether it’s a job loss, experience of domestic violence, divorce, or struggling with untreated mental health or substance use disorder. The intersection, where there is only shreds of a safety net, is where homelessness occurs. In terms of misconceptions? Yes, Asher, I do hear some people say those common tropes; “people choose homelessness” or “they want to live the homeless life”. But, anyone that has spent any time, getting to know who is homeless in our community, having conversations. That myth is quickly stripped away. For example, anyone who goes out and sees some of our partners, like the folks at Cultivate Initiatives, who run job training programs, see a line around the block of people who are experiencing homelessness, lining up for an opportunity to have a job internship. So, they see that homelessness isn’t born out of laziness. It is born out of lack of opportunity for gaining employment skills, getting into the workplace so that you have a job that helps you pay the rent.

Asher: Thank you for answering that question. Yeah, that’s a great one.听

Asher: I totally agree with you on the idea of housing prices just skyrocketing in recent years. And, it’s even difficult for me, who has a job, to be able to afford just rent and live paycheck to paycheck kind of deal.

Angela: it wasn’t always this way. When I look back at the data in 1970s, here in Portland, Oregon, somebody working a minimum wage job was able to afford a modest two bedroom apartment. That person today, working a minimum wage job at our higher minimum wage, is over a thousand dollars a month short from affording that same apartment. So, in that generation, we have seen wages stagnate, we have seen rental prices go up, and the supply of affordable housing go down. That is the math problem behind our homeless crisis.

Asher: $1,000. That’s hard to believe. And you say that’s…听

Angela: 1970s, is when you could work a minimum wage job in Portland, Oregon, and afford a modest two bedroom apartment. Today, there is no way for somebody working a minimum wage job to afford a modest two bedroom, let alone, a one bedroom apartment. So, we’re setting people up to fail, and far too many of us are on the brink of homelessness any given month.

Barriers to Getting Help

Asher: How do individuals experiencing homelessness navigate services and where do they get stuck in the whole process of things? Just the whole idea that there are a lot of people who are homeless, and I feel like there’s a lot that get tangled in the system of trying to get the help that they need. They probably need different sorts of needs and it’s hard to just figure out what needs come in first kind of thing.

Angela: I’m gonna start off with something that we don’t even think of as services. And, that is taking care of your personal needs. I’m gonna talk about it from a female perspective; there are women experiencing homelessness, living unsheltered, who have to start off their day thinking about where am I gonna go to the restroom? How am I going to find a place for a shower? How am I going to just take care of my basic needs? I share this because it really defies some of that myth; going back to the question you asked of, “what myths are there?”. That there is this lazy homeless life. It’s actually the opposite. Piecing together personal care needs, feeding yourself, safety… All of this consumes so much of a person’s mental energy. That there is often little left to thinking about how am I going to access things that feel opaque to me; “I don’t know where they are. How am I gonna access those so that I can get myself out of this situation?”. And, then you have the issue of trust. When you are living in a system that has frankly failed you, you start to develop natural trust issues. So, when someone comes and says, “Hey, we wanna help!”, “Hey, sign up here for services!”, and you end up on a wait list, with no end in sight, that erodes your trust a little bit more. Or, when you accept help and go to a shelter where you are actually feeling less safe than you were in your tent, or your car that erodes trust. So, one of the barriers that people experiencing homelessness must first face is, it’s hard to get through any given day and get your personal needs met and have enough left to think about how am I going to make a plan? How am I gonna access services that sometimes feel like they’re rejecting me?

Asher: Just thinking about it. It does sound like there are a lot of just contributing factors of trying to get the help needed but, like you said, it requires trust in the long run of things. I feel like in a lot of situations there are a lot of wait lists because the need is just so big, especially here in Portland, as far as homelessness goes.听

Here Together Role

Asher: How does Here Together fit into all that? I’m curious to know.

Angela: So, our goal, as I mentioned earlier; we were born out of the need for wraparound services to be complimentary with affordable housing that was being built. Now, several things are true. We do not have enough affordable housing in this community, and we do not have enough services. But, we do have an opportunity to take this regional resource and leverage it to the best of its ability. And, that’s what Here Together is about. We seek to listen to the needs of people experiencing homelessness, the expertise of people who have put themselves on the front lines of solving homelessness, the social workers, the behavioral health specialists. The Here Together Oregon Coalition does not provide direct services. Instead, we create the space to discuss and debate how the programs are structured, how the funding is distributed across our community so that we can realize a future where homelessness is rare and brief. Asher, it might be interesting to take the conversation in this direction. I just wanna be really forthright and honest with the listeners.听

Asher: Yeah, for sure. Add anything you would like.

Public Debate and Bridge Analogy

Angela: Part of our role right now is to help understand where the public is in its debate and its demands around homelessness. And, in doing that, I’ve learned a few things. Number one, for far too long we treated public frustration, anger, perhaps even a little bit of fear, as something to be shamed and not named. And, I really do believe that was the wrong approach. Because, what I’ve learned is that someone can, both, hold frustration and hold compassion in their hand at the same time. And, that’s where the public is. We need to respect those feelings of frustration while also uplifting the compassion and empathy that, I know, most people have for their neighbors experiencing homelessness. By doing that, we help the public get into, a more full way, the most important role they have; and that is continuing to demand that our elected leaders invest in solving this issue, versus what I see happening right now. And that is the public getting into the role of experts in demanding particular solutions. That’s become a very dangerous place for us to be in the public absolutely should demand, “we wanna see homelessness as rare and brief. We wanna see a reduction in the number of tents on our streets. We wanna see people in our community thriving”. But, when it gets to the place that our elected leaders feel compelled to listen to how the problem gets solved from the public. We’ve gone in the wrong direction. Let me give you an analogy, think about the I5 bridge. Right now there’s a robust public debate; should it have more lanes for cars? Should it have infrastructure for light rail? Should it have both? Or something else entirely? That is exactly the right conversation for the public to be having. That’s democracy working. But, nobody is asking the public to calculate the load tolerances or to design the foundation. We don’t put that engineering up for a vote and, if we did, if the loudest political pressure overrode the structural engineers. The bridge would fall down. And that’s precisely what we have done with homelessness. We have allowed political pressure rather than data and people who know this work, including people who’ve lived it, to drive the tactics around how we solve it. And that place that we’re in right now? Where public demand for any one tactic like, let’s do sweeps, let’s have this type of shelter and not that type of shelter. That is complicating an already complex social problem.

Asher: That’s a great iteration of just the I5 bridge.听

How Listeners Can Help

Asher: How can we, as well as, the listeners and myself help as a community in the process of making homelessness brief and short.

Angela: There’s several things the public, can and I hope, will do. Number one, continue to center the needs of our community. I believe the public needs to continue demanding that our elected leaders address this problem, make investments, find solutions. That is an important role for the public to play. The education piece, exactly what you’re doing with this program, Asher. “Why are people homeless? What are the myths?”… Continue to educate ourselves. The third thing is we need recenter and ask for this problem to be addressed by those who have done the schooling gotten, the degrees lived, the experience firsthand; those are the folks closest to what the solutions need to look like, and we need to reinvest in trusting those. Just as we trust our engineers to build a sound bridge, I trust our social workers to build a sound homeless response system.

Asher: I’m hoping that a lot of our listeners, who are listening to this, are able to help out in the community. Whether, it’s providing food for those who need it or, like you said, reaching out to local leaders, “Hey, what are you doing in this situation with the homelessness? We wanna know what’s going on.”, educating ourselves and asking the right questions. I really hope I’m able to make this podcast, the best it can be by asking the right ones, especially to you.听

Angela: Asher, you’re helping all of us understand this more, and I hope that the conversation doesn’t stop here.听

Community Conversations Program

Angela: In fact, one of the things Here Together is doing is hosting . You can go to our website; and sign up to host a community conversation. What does that look like? That is you bringing together 10 of your friends in your place of work, your place of worship, your backyard. We provide a trained speaker; these are folks who maybe themselves had experienced homelessness or they work on the front lines as a social worker, as a case manager. We come and have a honest conversation with your community about what’s working, what’s not, and what we can do together to make improvements. Those community conversations are a really important way for all of us to continue, working for the community that we all want.

Asher: I’ll have to look into that. That sounds very interesting. Getting a lot of my coworkers together and just talking about homelessness. I feel like that would be fun.

Angela: Asher, it is actually fun. Just last week, I hosted a community conversation. I was invited by the folks at 鈥�鈥�, which is a senior living center right near Lloyd’s Center. So, I got to be in a room of 40 individuals, all of them retired senior citizens. It was such a robust conversation. I learned something, I believe they learned something, and we all walked outta there with a renewed sense that we’re part of a community that cares, part of a community that wants to find a better way forward. Alesha, have I missed something that you would suggest I add to the conversation?

Alesha: No, I am really glad that you threw in some information about our community conversations. I feel they’ve been a really strong space for people to both hold their frustration and their compassion in the same hand, and would really encourage any listener to go to our website to check out more information about those.

Asher: Switching gears back into the whole idea of figuring out what the issue is with homelessness.听

Policies Funding and Treatment Gaps

Asher: What policies at the local or state level are helping and which ones are falling short?

Angela: We have a lot of policies, a lot of strategies that work quite well, for the individuals. Things like case management services coupled with rental vouchers to make housing affordable and accessible. That’s the formula that works for a lot of folks who’ve been experiencing homelessness for a long time. Where we see complications? Well, first, the biggest complication coming at us is the constant fluctuation of funding. I am sure many of your listeners are aware our federal government has been defunding or slashing the money available for housing healthcare support services. Well, when the federal government decreases the amount of money it spends on these things, we have to make up the difference. And, folks in this community have stepped up, but we’re now having to stretch those dollars even further because the funding holes are getting bigger. Number two, we are seeing an increased acuity of folks experiencing homelessness with an onslaught of cheap and dangerous drugs, far too few slots for treatment and recovery, coupled with untreated mental health, and far too slots for addressing a person’s mental health needs. All of these have come together to form, I would say, the “perfect storm”. But, I don’t wanna use the word “perfect”. “A storm”, that is really driving a lot of the complications in our system right now.

Asher: Yeah, that sounds so complicated. I totally understand that. Especially with government, just like slashing funds and everything, it’s very difficult, especially just for those of us who aren’t even having to face homelessness. I can’t imagine how difficult it is on that level of services needing to make up the funds; even with community members trying to pitch in and everything. How are the efforts in that, if you don’t mind me asking?

Angela: How are the efforts in making up the funds?

Asher: Yes. How does that look like?

Budget Landscape and Deficits

Angela: Well, let me give you a snapshot of the funding landscape. This snapshot is from 2024, so there are ways in which it’s already changing. In 2024, our regional supportive housing services measure, this is the one that was voter passed, paid for more than 40% of services, rental vouchers, case management. So, 40% of our homeless services system was paid for through local resources. Federal Government was contributing about 17% towards what it costs to keep people housed and connected to services. That number is going down even more, the 17% government is contributing. We see risks on the near horizon and out a year or two with expected cuts to food stamps, Medicaid, and a big shift in how the federal government funds affordable housing. Our community is gonna have to absorb that. Either through adding to local resources or cutting those services so that fewer people get access to it. And that’s the debate we’re having right now. As the budget season is upon us, we know that Multnomah County is facing a $68 million reduction in how much money is available to fund homeless services across the county. The debate on how we make up for that is real and will include some painful decisions. Painful decisions about how do we contract a system, who isn’t going to get services, and what are we gonna do to prevent people from being exited from a shelter that’s closing and landing right back up on the street. Nobody wants that outcome. So, now is the time that the public has an opportunity to weigh in and, again, talk about their desired outcomes. Letting your elected officials know; we don’t want to see people ending back up on the streets. We’ve got to continue making headway. So, I’ll leave it there.

Asher: Thanks for giving me the rundown of just the budgeting of houseless funding and everything. I feel like that’s very educational and for a lot of listeners who don’t even know about the situation at hand, I feel like that’s where we need to understand just how difficult it is.听

Sorting Headlines and Trust

Angela: Asher, it’s so hard for the public right now who are working to pay attention to their lives, their kids, their work, and then they’re able to keep an eye on this through some headlines. Well, the headlines have been chaotic. You hear that, “The City of Portland has found one hundred million dollars it didn’t know its had”. So, you get this impression that there’s more money than we ever knew and more money than we need, and then you hear “Multnomah County has a big budget deficit”. What is true? What is not true? It becomes very complicated. Here are the facts. Both things are true. There are short term, one-time monies that the City of Portland identified. Some of which can be spent, again, for a one time expenditure on homeless services. And, Multnomah County will be planning out its next year’s budget with $68 million less than it’s spent this year. So, tough decisions are going to have to be made. It’s likely also to be true that when the City of Portland and our elected officials work on their budget, our budget, the City of Portland’s budget for the next year, they will also be facing tighter budget than the year before. So, those one-time monies might lead to the impression of, “Hey, our local governments just got money coming out everywhere.”. That isn’t the case moving forward, and our system needs to rely on ongoing services, not one time infusions of money.

Asher: I feel like with that kind of money just gets moved around a lot and like it gets placed into places that we don’t even realize it gets placed in? And, correct me if I’m wrong with that too. I have no idea!

Angela: Hey, you’re not alone. You’re not alone. Even people who strive to stay on top of the information find themselves wondering, “what’s happening over here? What’s happening over there?”. It’s hard to track it all. And, I think a person shouldn’t have to do that. I always suggest to folks, find out who you trust. Is it your local homeless services provider? Is it an organization like Here Together? Is it another housing advocacy organization? And, look to them to help distill the information about what’s happening and ask them hard questions. But, trying to sort it all out individually, it can be overwhelming.

Asher: Oh yeah, definitely. There’s so many different kinds of information just all over the place, like you were saying, and it’s hard to know which one is true and which one is false, and not just about this.

Angela: Yeah. And, there’s a concerted effort to encourage the public to distrust the people who actually have the information the organizations and the people closest to, the issue. So, not only was it difficult, but there’s a cadre of political consultants and messengers who, for the last six years, have been working to help the public mistrust the folks providing services; casting them as the homeless industrial complex. That framing was never analysis, it was a political strategy designed to defund services and destroy trust in the people delivering them. So, now the public having had this play out for years and years, is left in a place of “who should I trust? Who can I trust?”. And. That’s a really hard place to be.

Asher: Oh yeah, definitely. And, the same thing just ties into the homelessness situation of, “who can I trust?”. I feel like that’s the biggest thing.听

Partners, Newsletter, and Data

Asher: What are some organizations that your coalition is in partnership with, that we can trust? In a world where there’s a lot of things that are not trustworthy, and are “not sure what is true”.

Angela: Yeah. Folks that wanna know more, learn more, about how we partner; I would encourage them to look at our website. Because, we do list coalition partners there. But, even more important, Alesha does an amazing job putting together a monthly news analysis. It’s a compendium of what’s happening, what are the data points, where can I learn more? Along with those narrative stories, the personal stories, of success and analysis of the policies that need to be improved in order to drive more success. So, we put out a monthly newsletter called . That’s one way to just stay on top of it, be able to follow links to the latest stories and connect with organizations delivering services, as well as, associations that are standing behind the services that are being delivered.

Asher: Thanks for that. Yeah, I’ll definitely put a link to “Happening Now”. Is there a way to access this newsletter, or do we need to sign up for it?

Angela: You can read past editions online, for those that don’t wanna sign up for something. But, if you want more current information, you can get it delivered to your inbox by simply signing up. I would also point out, our local governments do have a wealth of information available to you. has a data rich site where you can see inflow and outflow. They’ve developed a by name list of who is experiencing homelessness. No, you’re not gonna get the name of anybody. You’re not gonna see that “Stan” is experiencing homelessness. But, you’re gonna be able to see that every month in Multnomah County, about 1,400 people become homeless and, that same month, about 1,100 or 1,200 people escape homelessness. So, you’re gonna see the math and the charts that explain what you see in the streets. That while the solutions are happening, every month, services are being delivered, the problem does feel like it’s getting worse. And, through this new database, you’re able to understand, in a way you weren’t able to before, what exactly is behind that. So, I encourage folks, go check that out. has a website that helps you see what’s happening at the regional level; they actually tally the numbers. “How many housing rental vouchers have been delivered?”, “How many eviction preventions have happened?”, “How many new shelters have been sustained or built thanks to these regional dollars?”. So, you can see those numbers right there. And, then if you really wanna dig in, the Metro website also includes a link to every single county’s quarterly and annual report. These are data rich documents that show you the accounting, show you what’s happened, talk about the results, where what’s worked, and what hasn’t. Now, fair warning, these are 100 page documents. So, you can read them yourself, or you can read our analysis of them as they come out.

Asher: Yeah. I was going to say, that’s a lot of information. I don’t know how I would even ask the proper questions and get through the right channels to get the information needed. A hundred pages! That’s impressive, honestly! Thanks for that, Angela, I appreciate it.听

Biggest Changes Needed

Asher: What changes would make the biggest difference right now for this population? You’ve been saying that there’s a lot of different sort of circumstances going on, but at this very moment, in this certain time, 2026, what’s the biggest difference that would turn the tables for homelessness?

Angela: Greater collaboration and coordination. No one single source of money is going to be able to provide the services and the rental supports and the housing at the scale we need. So, we need to be braiding a lot of different sources of funding, federal, state, local. So, the biggest improvement would be in mapping the sources of funding, laying that against the population that is experiencing homelessness, so that we have a more comprehensive understanding of the opportunity and a more comprehensive understanding of what piece each of those funding sources contributes to the solution. It’s complicated work, but we have to go that way. Because, again, no one single source of funding is gonna get this done. The next thing, that will make the biggest difference, is we need to reinvest in trusting in the experts. I’ll go back to the bridge analogy. I absolutely will never cross a bridge that was built based on public input of how much cement, how much steel, et cetera, et cetera. But, yet we are allowing a homeless services system to be built that doesn’t fully center the expertise of the people who are doing this work. From our local experts that work internal to the government, to the providers who work external to the people who live it. Those are the folks that are closest to the issue and need to be the ones we rely on for developing the solution.

Asher: Thank you for sharing that.听

Success Stories

Asher: Do you have any success stories with your coalition, with people you’ve helped, or just experiences that have stayed with you and shaped how you see this work with homelessness, Angela?

Angela: Alesha, please chime in if you want. But, really, knowing the successes is what sustain us; getting to be close to the success. Two weekends ago, we got to partner with someone I consider a friend and a colleague, Kelly Clendenon, to share his documentary of resilience, success, giving back. Kelly is someone who shares, in this documentary, how he struggled with both homelessness and addiction. And, he is now on the other side of that; giving back to his community, helping with a shower program that provides a little ray of hope for folks experiencing homelessness today. That to me is the full circle. When people are given an opportunity, given access to the services, to get their needs met; their instincts are to give back to the community, so that they might be able to help the next person who is suffering in our streets. That full circle gives me so much hope that when you invest in people, you will get the outcomes that you want.

Asher: I love that. What’s the documentary called, if you don’t mind sharing that?

Angela: It’s called, . Yes, Alesha?

Alesha: Yeah, I also wanted to add to that is, after years of struggling with addiction and then, eventually, incarceration, Kelly was connected through an organization called , which got him a place to live and on his feet after he got out of prison. And, that was a program that was directly funded by , which is such a large part of our homelessness budget, as Angela was discussing before. I think just seeing a success story like Kelly, how after overdosing six times, within six months, now he just finished his master’s degree and is launching his own nonprofit to tell stories like his own. It really humanizes those dollars and I think it’s important for us to remember that, especially during budget season when we’re having difficult conversations and reading headlines that look scary.

Asher: Yeah. Thanks for sharing that, Alesha. Appreciate it. Yeah, I would have to check out that documentary. Do you know if it’s being streamed anywhere?听

Alesha: You can see the full version on . His organization is called .

Asher: Okay. Got it. We’ll also put this link in the description below of the podcast itself.听

Angela: Asher, I would also say if people wanna see stories of hope, stories of resilience; has an amazing exhibition up right now, where you can see the first person narratives of people who experiencing homelessness, learn more, take the opportunity to really step into the shoes of our neighbors, who experience homelessness. So, I think that’s a great way for your listeners to deepen their understanding while learning how they might be a bigger part of the solution.

Asher: Definitely. Yeah, thank you so much.听

Key Takeaway and Getting Involved

Asher: What’s one thing you want listeners to take away from this conversation as we end off, Angela. And, once again, we really appreciate all the information you’re providing us, as far as, the houseless situation, the numbers and just the math, and all of it. But, what’s one big takeaway from this conversation you wish our listeners to grab.

Angela: It’s the right question. I’m not asking Portlanders to be patient. I’m asking them to be specific about what they want as an outcome, hold the system accountable to get people housed, and then step back and let those who are the system experts, the social workers, the caseworkers, people with lived experience, let them work on the particulars. That is how we’re going to get the outcomes that we all want. If this keeps being a competition or a argument over “more of this” or “less of that”. We are going to be whipsawed through changing tactics and strategies; money deployed over here, money then redeployed over here. That’s no way to build a resilience system. So, I would ask folks to demand accountability outcomes, and then demand that those who have the skills, the training, the experience to deliver those outcomes, and demand that they’re part of the conversation.

Asher: The final question before we end off things; how can people learn more or get involved with Here Together coalition? Do you have any big events coming up? Like, “Independent Living Resources” recently had, I think, a big event with their community, recently. Is there anything besides the community conversations?

Angela: No, that’s really it. I love big events, but Alesha and I really believe that having smaller conversations with people you know and trust is how people are all going to be able to ask tough questions, get their questions answered, lean into this issue. So, we’ve shifted from large 100 person events to these smaller community conversations to give everyone an opportunity to get their questions answered and their thoughts shared.

Closing Credits

Asher: Well, thank you so much, Angela, and thank you so much, Alesha, from Here Together, Coalition joining me on this podcast. We appreciate you and all that you’re doing for the community, especially with the houseless crisis. And, yeah, we hope to talk to you again maybe one day.听

Angela: Thank you for giving us the opportunity. I really appreciate it. I also know how much work goes into the front end, the back end. So, you’ve spent you’ve been generous and spent an hour with us, and I know you’re gonna have to invest a lot more time to get this to where you want it. So, thank you so much.

Asher: Thank you for listening to Let’s Talk!. 抖阴福利导航’s broadcast about disability culture. Find more information and resources concerning this episode and others at . This episode was produced by the Let’s Talk! Podcast Collective as a collaborative effort between students, the Assessable Education and Disability Resource Department, and the 抖阴福利导航 multimedia department. We air new episodes on our home website, our Spotify Channel, , and .

Episode Transcript

Transcript edited by Hannah “Asher” Sham

Disclaimer

Kylo: You are listening to let’s Talk! Let’s Talk!, is a digital space for students at 抖阴福利导航 experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of 抖阴福利导航 抖阴福利导航 Foundation, or our community partners. We broadcast on our home website, , on Spotify, on , and .

Show Intro & Guest Introduction

Asher: Hello, Let’s Talk! listeners! Welcome back to the show! Today’s episode is especially important for our community here in Portland, Oregon. Over the past few years, we’ve seen heightened conversations around immigration enforcement involving federal agents operating in cities like Portland. Sometimes masked, and sometimes not clearly identified, and sometimes leaving community members confused or afraid, especially those of us with disabilities. This topic may induce triggering themes. As always, listeners’ discretion is advised as we delve into this topic. This episode is informational only. It’s not legal advice and laws change and individual situations can vary. Joining me today actually is a special guest from SOAR Immigration Legal Services. Hi! Do you mind introducing yourself and telling me who you are and what you do, to our listeners?

Mercedes: Thanks for having me. My name is Mercedes Riggs and I’m Managing Attorney at , which is a program of Ecumenical Ministries of Oregon.

Asher: Thank you so much for joining me today. I really appreciate you taking time out of your busy day to interview with us.听

What ICE Is and Does

Asher: For those unfamiliar, can you explain what immigration and customs enforcements is and what its authority includes?

Mercedes: Sure. So, ICE is Immigration and Customs Enforcement. It’s a federal agency that enforces immigration laws inside the United States, in Portland and in Oregon. ICE activity is usually around Southwest Portland, near their facilities at McAdam Avenue, and that’s where many detentions happen and where check-ins happen. But, ICE enforcement can be throughout the community as we’re seeing in practice.

ICE vs Local Police

Asher: What legal powers do ICE agents have in comparison to local Police, like the Portland Police Force and other entities like that?

Mercedes: So, they enforce civil immigration law. The Police enforce criminal law. So, they are kind of different bubbles. They might have uniforms that say Police, but they aren’t actually Police. They’re enforcing our civil immigration laws.

Asher: Oh, interesting. And why is it that they don’t wear any kind of badge, or number, in those cases.

Why Identification Matters

Mercedes: That is a good question. I think that they should be wearing badges or numbers for identification, especially. For reasons why regular Police wear badges and numbers, so we can identify them. So, if there’s an action performed by one of ’em, we know who did what and can track that and respond to that accordingly. Especially if there’s cases where they acted inappropriately and we need to be able to identify them. So, I think that- that is something that they’re missing, that we need.

Asher: For sure. Definitely. With that information and with that background, what does your organization do to help with community and inform them about situations like this? What does your organization do?

How SOAR Helps Locally

Mercedes: So, we provide Immigration Legal Services to the community, um, focusing on low income individuals in our community. We help with filing applications with US Citizenship and Immigration Services. We also help people with their immigration removal defense cases with the Portland Immigration Court and with representation at the ICE office. If somebody has an appointment there, then we have staff that will accompany that person to their appointment and help with interacting with ICE on behalf of that client. One thing that we do not do is we don’t represent cases for people that are detained in Tacoma. Just because we don’t have the capacity to help with people that are detained in Tacoma Detention Center. But, we do help with stuff locally.

Asher: So, it’s not statewide. It’s basically Portland?

Mercedes: Portland and Hillsborough. We have an office in Hillsborough as well. So, more local. There’s some aspects of immigration law where we can help with people statewide and remotely. But, for in-person stuff, it’s in the Portland metro area, Hillsborough area.

Asher: Thank you for telling me about that. Yeah, I feel like very important, especially here in Portland where there’s a lot of unrest going on. Under what circumstances can ICE stop, question or detain someone, and do they need a warrant in those cases? Because, they’ve been taken to court, from what I’ve heard. Do they need a warrant and what kind of warrant and whether or not it’s a judicial warrant or administrative warrant. Can you dig deeper into that for us?

Stops Detention and Warrants

Mercedes: So, when they’re out in public, they are allowed to approach people and ask questions. But, if they ask somebody a question, the person doesn’t have to answer. But, to detain somebody, that’s where they need legal authority. So, they need either a warrant signed by a judge– and they definitely need a warrant signed by a judge to enter somebody’s home– and they also have what’s known as an administrative warrant that’s just signed by ICE, that’s not signed by a judge. That administrative warrant allows them to arrest somebody out in public, but it doesn’t allow them to go into somebody’s house. No matter what ICE might say about that, they don’t have legal authority with an administrative warrant to enter into somebody’s house because of the fourth amendment of the Constitution that prevents illegal searches and seizures without a warrant signed by a judge.

Asher: What constitutional right applies to people regardless of immigration status.

Mercedes: Everyone in Oregon, everyone in the United States, whether they’re a citizen or not, has constitutional rights. All of the constitutional rights; that includes the right to remain silent, that includes the right to refuse entry without a judicial warrant, and that includes the right to due process.

Public vs Private Spaces

Asher: Yeah, you did mention that people out in public is different from being in a private area. Can you define those different areas for our listeners? What’s a public spot and what’s a private area and how do those differentiate with each other? As far as, what law enforcement is allowed to do, or what kinds of rights people have in those different kind of areas.

Mercedes: That’s a great question. So, a public space is any space where we generally regard as public, so outside. Generally treated as public too, like if you’re in a shopping mall and not in a private restricted area. Basically any area that is open to anyone, that isn’t firmly demarcated that this is a private area. So, in order to firmly show to ICE and firmly show to anyone that it’s a private area, there needs to be a sign saying this is a private area, restricted access. A private area is basically an area where it’s monitored and where the access to it is only allowed for people with permission into that specific space.

Asher: Interesting. With that, there’s a little bit of gray area, or… Maybe you can correct me on that, as far as gray areas go; are restaurants, cafes, Church buildings, or stuff, are they public areas or are they considered private areas? Because there are some places that say ICE is not allowed in these areas, or other things.

Churches and Gray Areas

Mercedes: So, I’ll go to churches for example. Traditionally churches were treated as protected spaces and they’ve, usually, been regarded as protected spaces. With this administration, they do not have that same regard anymore. So, for a church building, for example, the main area where people are congregating, that can be treated differently than if there’s a room with a sign on it saying “private area, access restricted”. So, that’s where I think they, would have a harder argument to say. “They”, meaning “ICE”, would have a harder argument to say that they have the right to go in there. If there’s a door specifically saying that; “this is a private area, can’t go further”, then ICE would definitely need a judicial warrant to go into that space to get somebody. And, if they violate that, then they should be held accountable for that.

Reporting ICE Misconduct

Asher: How do they get held accountable, in those situations, where they forcefully enter either a private area, or do a unlawful arrest?

Mercedes: Yeah, so there’s a couple different mechanisms to report that kind of misconduct. If you’re seeing them out in public, or behind closed doors, calling the Sanctuary Promise Hotline; which is 1-844-924-STAY, and 1-844-6-AMPARO in Spanish, or “online@sanctuarypromise.orgen.gov“. The Spanish option is “PromesaSantuario.Oregon.gov”. Could also contact the DHS office for civil rights. There’s also the ICE Office for Professional Responsibility. I think calling “PIRC” would be a good, good idea too, and . Also if it happened in Portland City Limits, then contacting , ’cause their office would probably wanna know about that too.

Asher: Thank you so much for providing all that information. I feel like a lot of listeners would find help at least in those different phone numbers to call especially. Do people have to open the door if ICE knocks, especially at their home? Or is it similar situation where if a Police officer knocks on their door, they have the right to ask these questions and not open the door.

When ICE Knocks at Home

Mercedes: They don’t have to open the door. Not unless ICE shows a judicial warrant with that person’s name and address, or somebody that lives there, their name and address. So, what they should say is, “show me your warrant. Slide it under the door.”. Don’t open the door, because then they might try to push their way in. Try to have them either slide it under the door or if there’s a window near the door, then have it hold it up to the window so that people inside can read it. Say that, “if you don’t have a judicial warrant, you’re not allowed to be in here” and “please go away”.

Do Not Sign Documents

Asher: I’ve heard of just different situations of people giving documents for people to sign after, even just like handing them something underneath the door. Can someone refuse to sign documents? And what happens if someone signs something and they don’t understand it?

Mercedes: Yeah, definitely a bad idea to sign something that you don’t understand. So, my advice is to not sign anything without talking to a lawyer first. I can’t reiterate that enough; don’t sign something that you don’t understand. Because signing something could cause you to accidentally waive your rights. People have the right to an attorney and immigration courts don’t provide you one for free, but you still have the right to talk to one. There are resources and attorneys available in the area that are low cost and possibly free depending on if they have funding to provide those Services. But, definitely, definitely, definitely talk to an attorney first before signing anything.

Right to an Attorney

Asher: So, we do have a right to an attorney during immigration proceedings, or even during detainment? Is that right?

Mercedes: Yes, people have the right to an attorney. They don’t have the right to have one provided by the government, like in criminal court. There are organizations that can provide those Services and give people access to those Services. But, again, the government doesn’t provide one. It’s something that people have to seek out themselves to get. If somebody’s detained, they can and they should call an attorney. It would be a really good idea for anybody that is fearing that they might be detained, to talk to an attorney ahead of time to at least know what their rights are and to be prepared for the worst case scenario. So, that if the worst case happens, then they’re ready and they know what to do already and they’re not scrambling.

Disability Rights and ADA

Asher: Yeah, with that; Let’s Talk!, As a part of the Accessibility Education Department and we here at 抖阴福利导航 are very big on disability as well, so wanting to tie that all in together. How does disability law intersect with immigration enforcement?

Mercedes: Disabled people have the same rights as, as anywhere else. But, there are local advocates that can help if ICE fails to provide accommodations. Organizations like , and there’s also a lot of private attorneys that can help too.

Asher: Are ICE agents required to provide accommodations under the American With Disabilities Act, or the ADA, basically.

Mercedes: Yes, because they’re federal agency, they must provide reasonable accommodations including interpreters, mobility support, and communication access.

Asher: And, for people with disabilities, should they be carrying documentation of their disability around? I feel like that’s what it comes down to now, especially with so many invisible disabilities too and such.

Mercedes: It can help, especially if that disability isn’t visible. If somebody’s carrying a , I think, would be helpful.

Accommodations by Disability

Asher: I want to go down the list of what kind of protections exist for, each kind of disabilities. First off, just Deaf or hard of hearing individuals. Can you give some like insight to that? Yeah.

Mercedes: Yes, for Deaf or hard of hearing people, they have a right to qualified an interpreter.

Asher: What about people with an intellectual disabilities?

Mercedes: They have the right to clear communication and to support.

Asher: People with mobility impairments, especially those with like wheelchair or unable to move around properly, or can’t necessarily put their hands up whenever they’re instructed to do so.

Mercedes: Yeah, they have the right to accessible transport and to safe handling. If they can’t put their hands up, then they should communicate that and make it clear that they aren’t able to move. To explain that they’re disabled and can’t put their hands up or explain what their physical limitations are. If I think it would be a good idea for them to have a card on them so that the ICE agent in easily accessible so that the ICE agent can see that.

Asher: And what happens, if a person cannot comply quickly due to a disability like you were saying.

Documenting and Recording Safely

Mercedes: For them to continue to try to communicate the reasons why they’re not able to comply with what the ICE officer is asking them to do, and to definitely document the interaction. Whether or not somebody’s with them or they themselves are recording on their phone. If they’re not able to record on their phone, then to document the interaction and like when they get home and write it down, so that it can be reported.

Asher: Yeah. With that, there are many stories and probably also just many videos on the internet of people trying to document and then their phones getting slapped away, or something like that. What should you do in those situations? There are different sides to it. I’m protecting myself so I should shove back, which I feel like that’s a really bad idea too, but what’s the good idea in those situations?

Mercedes: I think in those situations it’s hard because people do have the right to try to protect themselves. Try to document in a way that wouldn’t “offend”– the ICE officer. So, not having a phone right in their face, having it more closer to the recorder, the person reporting, and also just continuing to write down, or document, and make a record in saying, “I’m recording this because I have the right to record the interaction and I’m doing this for my own protection, so that we can be clear about what happened on this day.”.

Panic Sensory Overload Tips

Asher: What should a disabled person do if they’re experiencing sensory overload or panic episode during an encounter like that? Because, it’s scary and a lot of students just been on the lookout everywhere for any sort of sign of different kind of cars or just special vehicles that ICE drives, apparently? What should disabled people do if they’re experiencing that and starting to panic and everything? What can we do?听

Mercedes: One idea would be for them to say, “I need a moment because of my disability.” If they have maybe a support card, having that ready and be clear about the fact that they have a disability and just keep on repeating themselves. “I have a disability. I need a moment.”

Staying Safe in Encounters

Asher: What are some best practices for staying safe during an encounter like that? If we do end up encountering like ICE agents?

Mercedes: I know this is like easier said than done, but try to stay calm. Again, asserting your rights. Just keep on repeating your rights, avoid sudden movements, so try to be as still as you can and move as slowly as you can, keep your hand visible, and have your rights card handy. You might’ve seen the red cards floating around, so having that handy to help remind yourself. But, just generally if you’re going to be moving at all, explaining what you’re doing, and asking for permission. Especially, if you’re gonna put your hands in your pocket to get something. Saying, “I am putting my hands in my pocket to get out my ID.”, Or maybe asking for permission ahead of time before even doing that going, “Hey, I would like to get my ID out for you. Can I get that for you?”, and asking permission ahead of time, so that if you have a jumpy ICE officer. That they know what’s going on and you get permission from them, so everything’s clear and to keep yourself as safe as possible in those interactions.

Where to Get 鈥淜now Your Rights鈥� Cards

Asher: You mentioned those rights cards. Where can our listeners find those rights cards to print out or even to give out to people, just in case?

Mercedes: has them in multiple different languages. You can order them off their website and also has cards too, and you can print them out too if you don’t wanna order it. You can just print out what they have. They have versions where you can print it out and you can just fold it up and put it in your wallet.

Asher: Yeah, thanks for giving that resource for us. Definitely will place it at the bottom of our website.听

If Agents Enter Without Warrant

Asher: How should someone respond if agents try to enter without a warrant?

Mercedes: They should say through the door, “I don’t consent to entry”, and they should call the . Call their hotline at (888) 622-1510.

Asher: Can they call immediately? Like during that moment?

Mercedes: Yes, for sure. Yes.

Asher: And, they will probably tell them what to do and such. Right?

Mercedes: Exactly. They can help coach them through the interaction.

Handling Threats and Intimidation

Asher: What if they threaten arrest or deportation, immediately? Those kinds of encounters I feel like are quite a bit, and it’s very scary to just hear that and be like, “oh, shoot! What do I do?”.

Mercedes: Keep on repeating, “I choose to remain silent. I want to speak to a lawyer.”. Threats don’t remove somebody’s rights. So, they can threaten all they want. But, again, it’s easier said than done to try to stay calm. But, keep on repeating that you have rights and you have the right to remain silent. And, again, saying that you want to speak to a lawyer. There’s nothing that bothers me more than when I watch like a movie, or something, and somebody starts talking to law enforcement without their lawyer present. I’m going, “no! No!”

Asher: “Don’t do that!”

Mercedes: “Don’t do it! It’s a trap!”

Asher: “It’s a trap!” Yeah. Listeners, please don’t learn from movies about how to speak to local law enforcement. You have rights, and don’t just speak to them on a whim!听

How to Document Misconduct

Asher: Immediately after the encounter, and I know you talked a little bit about it too; who to call as well as how to file complaints. How do we document misconduct, in situations like that. I don’t even know how to start with that. Where do you write it down, or who do you even tell, and is there a proper procedure to document misconduct in situations like that?

Mercedes: So, somebody should take notes right away while the details are fresh in your memory. Recording all the details that you remember, like that for the officer, their name, if you got one, their badge number, if they happen to wear one. ICE doesn’t wear badges, but maybe they will start one day. I don’t know. If you saw their vehicle documenting what kind of vehicle and if you could see any license plate information, details on what the officer was wearing, like what color uniform they were wearing, if you noticed any special badges on them. Also record down the date, the time, the exact location, describe what happened, if there were any witnesses there, try to record down the names of the witnesses and the contact information for the witnesses, and try to take photos or videos. But, don’t interfere with the officers. Again, the best practices these days, as we’re seeing is, if at all possible, try to take photos or videos. Then to call the PIRC hotline after and to call a trusted person or, if that person has like an attorney, call them.

Rapid Response Support Networks

Asher: What other organizations provide rapid response support? I know you mentioned one during the encounter of who to call, but maybe even after the fact. After we get to a safe location, who can we call? For rapid response and just support or even during that situation as well.

Mercedes: Yeah. So, PIRC is like the number one, I think on the list. But, besides them, there’s a couple organizations that provide rapid response support in Portland. Innovation Law Lab is one. I think the Clear Clinic also o offers rapid response support, or if that person has their own private attorney lined up that they’ve been in contact with before; calling them up, I think, would be a good idea.

Asher: I feel like it’s very important, especially in those situations to have support. Especially those of us with disabilities. Like you were saying, it’s easier said than done in those situations to remain calm, to state your rights, move as slowly as possible, and say everything very clearly. Especially in those encounters and such.

Mercedes: It might be a good idea to practice those interactions, so that somebody could feel more prepared and just practicing things like you might practice other things in your life. Then it might become more of a muscle memory and easier to do when you’re actually in the moment.

Legal Community Monitoring

Asher: How can communities legally observe or monitor enforcement activities? I’ve seen a lot of different kind of observations around like statewide, especially like Portland, Minnesota, and such. People recording and people trying to make a website online that says “this is where ICE agents are. Keep an eye out!”.听

Mercedes: Yeah. People can record from a safe distance. I am not like a super brave person, so I would probably be recording out in a window, far away. I admire the people that are braver and that will be down there on the street. But, I’ll be poking through the blinds on the window, recording. But, there are, Portland area, in Oregon, rapid response volunteers that are trained to observe without interfering. Like the volunteers with PIRC.

More Ways to Report Abuse

Asher: What mechanisms exist to report misconduct? Just going back to the whole idea of reporting an encounter, and such.

Mercedes: is available, , for the Portland area, or Portland City limit, Interactions. Also the ICE office for professional responsibility. I don’t feel like much of us trust ICE right now. I don’t trust ICE.

Asher: Yeah, no.听

Mercedes: I think procedurally it would be a good idea to still report to that agency, maybe one day, in the future for another administration that has the idea to actually hold people responsible in mind. For them to be aware of and to, possibly, do something about. These days, I feel like some trust from them, from ICE, would be earned, by me, if officers wore badges with their identifying information and showed their faces. That’s what makes me particularly distrustful if I can’t identify somebody and can’t see their face. Automatically the suspicions are added. Why are you hiding? What is there to hide? If you’re doing something that you are supposed to be doing, then you shouldn’t be afraid of identifying yourself.

Asher: Definitely showing badge number or showing at least like legal ID and showing your face. Don’t mask up your face. I want to be able to see who you are!听

Mercedes: Exactly! Yeah.听

Protecting Vulnerable Neighbors

Asher: How can people legally protect vulnerable community members in situations like, Low income or people with disabilities and such. What’s legally allowed in protection?听

Mercedes: 鈥淜now Your Rights鈥� trainings are great and some organizations have trainings. To train the trainer so that people can spread the word about people’s rights. Another good idea that I think anybody that fears being detained or deported should do is have a safety plan. I think has a safety plan on their website; a packet that you can download and fill out and give a copy to a trusted person, so that they have that information. Because, for anybody, a safety plan is a good idea. We should have a plan for what happens if the worst happens. I have kids, we have a plan for what happens if there’s a disaster. There’s all sorts of things that we should be preparing for in life. In case, the big earthquake hits; we need to be prepared for that. This is no different. People should have a safety plan in case they’re detained so that their affairs can be put in order. Another good idea is disability accommodation cards. Helping people with that and distributing that and making sure that people with disabilities have those in case they need them. Then also connecting with the rapid response networks that I mentioned, like PIRC. Helping people with accessing that. If somebody comes to another person with a legal question helping to connect that person with a qualified immigration attorney. Because there’s a lot of scammers out there.

Asher: There are, yes.

Mercedes: And there’s people, unfortunately, taking advantage of people in this situation and taking advantage of people’s fears. It just makes me so mad, because sometimes these scammers put people in an even worse situation. So, for sure, helping people contact a qualified attorney and you can look up and see if somebody is qualified by looking on the Oregon State Bar website directory. Or, since immigration is federal, immigration lawyers might be licensed to practice in another state. So, maybe trying to Google them and just confirming that they’re licensed at least somewhere.

Finding Trusted Legal Help

Asher: Yeah. Do you have any links for us? As far as, looking for a legal attorney, or at least an immigration attorney and those that can speak different languages.

Mercedes: has some information about connecting to attorneys and people can connect to Equity Corps of Oregon, which has access to panel attorneys that can help out.听

Asher: Would you say that’s like the main website you should go to, to look for an attorney?

Mercedes: Yeah. There’s multiple nonprofits in the area that provide immigration legal services for, either, free or for low cost. Besides going through “ECHO”, there’s organizations like “Mines” or Immigration Legal Services. There’s ““, ““, “鈥�. There’s Catholic Charities. I’m trying to think of anyone else that I’m missing, but those are like some of the main ones here in Portland.

Asher: We’ll definitely add those links as well for our listeners who need help, and just need legal counsel, and just to ask all those important questions in those situations.听

Policy Reforms and Transparency

Asher: Do you know what policy reforms are currently being debated regarding enforcement transparency? And we did mention a few, wearing legal badge, having a name and legal badge number or uncovering the face. Do you know if there’s any other debates being made in regards to enforcement transparency?

Mercedes: I know the Legislative session just wrapped up last week. And the bill for no masks is going to the governor’s desk, I believe soon. No masks for law enforcement. .

If Someone Is Detained

Asher: What should someone do if a family member, friend or other community member that they know is detained and they need to find what facility the individual are being held in? Who can they call? What can they do if, for example, I have a friend that was detained and they were brought to a facility. What can I do to know what is happening?听

Mercedes: You can look on . That detainee locator, I feel like it’s not exactly in real time. It’s a little bit delayed. So, if somebody looks up somebody on the website and they know their friend, or loved one, was detained an hour ago and somebody’s not popping up on the website yet. It’s because of that delay. They can try calling the ICE Field Office, in Southwest Portland, to see and they can confirm if they have somebody. It’s hard sometimes, because of those delays and that causes a lot of anxiety. I know, for people, it’s not easy to track somebody. So, I can see how that would definitely be stressful for people not knowing, having that delay for an hour or two as that information is being added online. But yeah, trying the online locator, calling the office, and also contacting PIRC. PIRC might be able to help and track down where that person is.

Asher: Yeah. Is ICE legally required to record the person’s name that they detain? I don’t know if there’s situations where the name just never shows up and just the person’s lost in the system.

Mercedes: Yeah, they have to gather that information and they’re supposed to be able to provide that information, so people can locate people. They can’t just disappear people.

Asher: Really appreciate you giving all these details and resources for us, Mercedes. Really appreciate it.听

Contacting SOAR and Office Hours

Asher: Last but not least, how can listeners reach out to your organization if they need help or want to know more on how to stay safe and what their legal rights are and everything?

Mercedes: They can call our office at (503) 384-2482. They can also email us at “soarlegal@emoregon.org“. Email, I think, is the best way to get a hold of us since we’re so busy and the phone is ringing off the hook. Sometimes it takes a while to get through to a human on the phone. So, email would be probably the best way to get hold of us to schedule a consultation.

Asher: Awesome. And are we allowed to come visit at your offices, or is it better to email first if you really want to see a physical person.

Mercedes: So, visiting is great. We welcome that. We are open to the public on Monday afternoons from one to four, then Tuesday through Thursday from eight to four, but closed during lunch, and we are closed on Friday.

Asher: Awesome. Thank you so much, Mercedes once again for joining me on this interview and giving all this insight, especially on the legalities of ICE, what to do to stay safe, and also know our rights. Appreciate you.

Mercedes: You’re welcome, Asher. It’s been a pleasure.

Asher: Thank you.

Mercedes: Thank you.

“The New Colossus” Poem Reading

Asher: You’re listening to Let’s Talk!. That was Mercedes from Soar Legal Immigration Services. Joining me on an interview on disability and immigrant rights. Coming up is a short poem called . It’s a sonnet by Emma Lazarus, written in 1883, to raise funds for the statue of Liberty’s pedestal, famously welcoming immigrants with the lines; “Give me your tired. You’re poor, your huddled masses yearning to breathe free.”. The poem contrasts the statue with the ancient colossus of roads, presenting it as a mother of exiles, holding a beacon of hope and its words were inscribed on a plaque inside the pedestal, in 1903, becoming a powerful symbol of America’s promise to immigrants. This poem is spoken by Ash DeHart.

Ash DeHart: “Not like the brazen giant of Greek fame, with conquering limbs, a stride from land to land; Here at our sea washed, sunset gate shall stand a mighty woman with a torch, who’s flame is the imprisoned lightning, and her name Mother of Exiles. From her beacon hand glows worldwide welcome; her mild eyes command the airbridge harbor that twin cities frame. “Keep, ancient lands, your storied pomp!” cries she with silent lips. “Give me your tired, your poor, your huddled masses yearning to breathe free, the wretched refuse of your teaming shore. Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!”

听Outro

Asher: Thank you for listening to Let’s Talk!. 抖阴福利导航’s broadcast about disability culture. Find more information and resources concerning this episode and others at pcc.edu/dca. This episode was produced by the Let’s Talk Podcast collective as a collaborative effort between students, the Accessible Education and Disability Resource Department, and the 抖阴福利导航 multimedia department. We air new episodes on our , our Spotify Channel, , and .

Episode Transcript

Transcript edited by Let’s Talk! Podcast Collective

Episode Disclaimers

Kylo: You are listening to Let’s Talk! Let’s Talk! is a digital space for students at 抖阴福利导航 experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers, and do not necessarily reflect the opinions or positions of 抖阴福利导航, 抖阴福利导航 Foundation, or our community partners. We broadcast on our home website, , on , and .

Episode Introduction

Miri: On Friday, February 20th, 2026, amid record high tensions between themselves and 抖阴福利导航’s administration, the unions representing the classified and faculty employees at the school voted overwhelmingly to approve a strike. A couple of days ago, I got to talk to two members of 抖阴福利导航FFAP, the union that represents 抖阴福利导航’s faculty and academic professionals. I asked them to share their insights on the background of the strike, what the workers are asking for, and how a potential strike could impact students if the college continues refusing to truly show up to bargaining. Thank you so much for meeting with me today and being willing to talk about this. I’d like to start by asking you both to introduce yourself with your names, pronouns, background, and how did you end up at 抖阴福利导航?听

Meet the Guests

Ben: Yeah. Thanks so much, Miri. My name is Ben Cushing. I’m the president of the 抖阴福利导航 Federation of Faculty and Academic Professionals, he/him, and I am a faculty member who teaches sociology at Cascade Campus. I’ve been at 抖阴福利导航 since 2008. I started as a part-time faculty member right outta graduate school, and I worked as a part-time faculty member for five or six years, and then started as a full-time faculty in 2013. And I’ve been in the president role for about two years.

Jacob: Hi everybody. I’m Jacob Richman, he/him. I’m a part-time faculty member in Multimedia, and am the lead steward for the CTE programs at the faculty union, FFAP. CTE programs are the career training educational programs. They include everything from my program, Multimedia, , through nursing, welding, trades, sciences. It’s an incredibly broad area. So, I’ve been in 抖阴福利导航, I think, this is my third or fourth year? Yeah. Have a background in audio and video multimedia production, and art, and performance, and community art. And, I’m really glad being here. Thanks for the invite.听

An Outline of 抖阴福利导航’s Unions

Miri: So, what is 抖阴福利导航FFAP’s role, and how did you each get involved in that?听

Jacob: It’s the union that includes all faculty and APs, academic professionals. So, counselors, a lot of administrative staff that are student facing or that deal with student services or work with them. I got involved, I was heavily involved in the, um, part-time faculty union at Portland State before moving from there to here. And, before that was pretty active in unions a little bit before that. So, as soon as I got here, I was like; I knew already about the union. It’s a very strong one. A unique thing about 鈥� it’s what’s called a big tent union. So, it includes part-time faculty, full-time faculty, administrative professionals and that’s really exciting and there’s a lot of power in that. So, I was excited to take part and ran for this steward position, and here I am.听

Miri: Awesome! Thank you, and what about yourself?听

Ben: Yeah, so鈥� Um, I鈥� I came to the labor movement really from the social movement world. So, you know, I’ve been engaged in various kinds of, of social movement work all the way back to, you know, when I was a 18, 19-year-old. And, I began to be really- and of course I’ve been a鈥� a rank and file member of the union here at 抖阴福利导航FFAP, um, since 2008 when I started working here. But, I wasn’t really participating in any union leadership, or I wasn’t very active for a long time. And, I started to see how unions were, in鈥� in the last five years or so, becoming an increasingly important sort of force for good in the world. For one, like getting much more active, I was really inspired by the Starbucks workers who were organizing, by workers at Amazon, fulfillment centers that we’re organizing, and鈥� and also just seeing a shift in the labor movement where people were sort of remembering, I think, that the labor movement is a social movement. Seeking not only, you know, better wages and working conditions in our workplaces, but also to shift the balance of power in society toward working people. And, I also, I think I began to understand that to address a lot of the other things that I care about, you know, the climate crisis, economic inequality more broadly, and lots of other things, maybe everybody having healthcare. Um, that those kinds of things can only be meaningfully accomplished if there’s a strong, well organized, participatory, and democratic labor movement. And, so, me and some of my colleagues formed, uh, Reform Caucus within our union and began to push our organization to just be more bold and to be more inclusive and democratic. And, so, that’s kind of what led me here.听

Miri: Yeah, that’s super interesting. The way that you’re framing that as everything being inextricably linked to each other for that, for anything else to progress is interesting, I think. And, for a long time the opinion on鈥� on unions has been poor and on the climate has been poor, and healthcare has been poor. And, trying to get each of those things moving independently has not really led to a lot actually happening.

Ben: Yeah, absolutely. I mean, I think one of the things that social movements can do鈥� and the labor movement is鈥� is part of this鈥� is to shift the political terrain, you know? So, one of the things I think that we need to accomplish here in terms of higher education is to shift the political terrain in Oregon such that higher education is broadly understood as a public good. Something that’s good for all people, and that as such, everybody should have access to it. It should be free or cheap, and should be open access and鈥� and serving our communities. Instead, what we’ve seen over the years is kind of the shift in the opposite direction. In some respects, we had a version of that, like an imperfect version of that, maybe a generation or two back. And, over the past 40 to 50 years, there’s been a systematic gutting of public institutions and their funding. That basically boils down to tax cuts for the rich and, uh, decreasing funding for public institutions. Whether that be, you know, the social safety net or鈥� Um, K-12 Education or Higher Ed. And one of the consequences for students is that tuition has just skyrocketed during that time. You know, when鈥� when my parents went to college, um, you could go to a, uh, university in California and pay very, very little in tuition. So, you could basically work a summer job and pay for your tuition throughout the year. At a鈥� at a鈥� at a tier one University in鈥� in the California University system. Right? Uh, that is not what students face today. And that’s a result of the shifting of power in society toward the wealthy who have been able to, um, basically gut public institutions and, uh, decrease their own taxes. And, so there’s this growing inequality within society between, between the rich and鈥� and鈥� and the working class. And, so really I think that our鈥� our organization is on the one hand fighting to improve the working conditions and the wages of our coworkers. But, it’s also pushing back against an entire model of education, of higher education, which is bad for students. 鈥楥ause, tuition goes up and it’s bad for the workers within those institutions as more and more faculty are working as, um, adjunct faculty as part-time, precarious workers. Basically gig workers; and we’ve seen, you know, job security and wages and benefits decreasing over time. And, so we need to push back against that whole system. And, I think that鈥� that workers in that system and the students within that system share a lot of common interests to push back against it. And, would be wise to su鈥� you know, support one another. Like we really want to be in solidarity with students as they’re fighting for lower tuition, and the various causes that I know a lot of student organizations are pushing toward.听

Miri: Yeah.听

What They’re Fighting For

Ben: We have a platform, a bargaining platform. Um, and a series of proposals. Our鈥� if you go to our website, , and click on , there’s a huge amount of information, um, including all the proposals that have been passed if you really wanna dive in deep. But, also some more zoomed out Q and A type information, both for our members and for students. So, there’s a lot of鈥� lot of really good info there.听

Miri: Awesome. Thank you.听

Ben: So, the鈥� At this point, the key things we’re fighting over. There’re actually many. But, they boil down to wages and benefits. So, we are in the middle of our full contract. Two years ago we settled on a four year contract, Um鈥� But, we only bargained for wages and benefits for the first two years. And, then we agreed to reopen the parts of the contract that deal with wages and benefits to renegotiate them after two years, to basically come up with the wages and benefits for the second two years of the contract. So, that’s what we’re in right now is called an economic reopener. And, currently the college’s offer in terms of a cost of living adjustment is 0.35%. Which, a cost of living adjustment is intended to help wages keep up with inflation so that workers over time don’t lose ground. Um鈥� So, inflation in the Western States, uh, in the last year was a little under 3,% and it was about 3% the year before. So, a COLA that keeps up with inflation would be about 3%, COLA being Cost Of Living Adjustment. The college’s current offer is 0.35%. So, that’s, um, basically zero. Uh, it’s 30, uh, 35 cents for every $100 you make.听

Miri: That鈥� that was鈥� I鈥� I, you know, doing the research for this and then also for an episode, I did a couple weeks ago with, um, students from the Music Sonic Arts movement, that is an absolutely bizarre number. Like it鈥� is there a way that they came up with that number? ‘Cause that seems like that鈥� it seems like an accounting error that seems like they put the period in the wrong place.听

Ben: I was talking to a friend last night and I told them about the鈥� the college’s COLA offer and he said, “You know, it’d be better if they just offered zero,” you know?听

Miri: Yeah.听

Ben: 0.35 feels like it’s an insult. Um, yeah. And鈥μ�

Miri: Like, because 3.5 seems like what you would be asking for.听

Ben: Yeah.听

Miri: And then zero seems like what they would be wanting to, what any administration would be wanting to offer.听

Ben: Yeah.听

Miri: So, then having that weird, almost non arbitrary number of like, “You know, it’ll be, it’ll be 10% of what you’re actually asking for.” Just 鈥� is 鈥� why??听

Ben: Yeah. Their鈥� their original offer was 0.25, and then a few months ago they raised it to 0.35. An additional 10 cents for every hundred dollars. So, you know. I mean, I think the college claims that they’re facing really difficult budget times. Um, they’re鈥� we鈥� we don’t want to deny that there’s鈥� there’s some truth in that, you know. Like the budget’s not great. The budget is not in a crisis, you know? Um, but it is 鈥� it isn’t great. They’re setting aside a lot of additional money into their, um, reserves that they don’t need to do, but they’re choosing to do. Um, and that takes millions of dollars off the table that could be used to have our wages keep up with inflation. The college is choosing to spend money in ways that are鈥� that鈥� that don’t serve students, I would argue. We鈥� we’ve seen the鈥� the鈥� um, the鈥� the amount of managers at 抖阴福利导航 increase by 29% since 2018. So, that’s not a very long period of time. And we’ve seen almost鈥� almost a one third growth in the number of managers. Actually, what’s measured by FTE, so full-time equivalent. Um, so, we just think the college has its priorities out of place.

Miri: Let’s see. I’m trying to pull the, uh, president’s open letter up again as well, where some arguments had been made about those were going along with state regulations and what other colleges are doing; while not addressing the decreasing amount of full-time faculty and part-time faculty. What is in your, uh, negotiations to address that part?听

Ben: So, first of all, I think we should compare the college’s current offer to previous contract settlements over the past decade or so, to get a sense of like how different is what they’re offering now from what they’ve offered in the past. But, the short story is that over the past decade, you know, with inflation; the college’s like overall cost of our contract agreement, meaning the cost for everything from health insurance to wages to all the other things that are included in our contract settlements, have increased from about 17 million, at the lowest, about 10 years ago, to about 36. I don’t have the numbers in front of me, but I think it’s about 36 million. So, there’s been a kind of a slow increase and then there was a dip around COVID when the contract settlement went, the total cost of the contract settlement was again about the high teens, right? Um, the college’s current offer with us right now, and we are not in a global pandemic is 3.7%. I’m actually gonna take a second and pull up this document so I can give you concrete numbers. So鈥� Okay! So, over the past 10 years or so, we can compare the total cost of the economic packages that 抖阴福利导航 and 抖阴福利导航FFAP, our union and the college have agreed on. So, in 2015, the college agreed to a $21 million package. In 2017, it was of 24 million. In 2019, is 27 million. So, you can see that’s kind of the trend. There’s a slight, uh, growth with inflation, but then it dipped in 2021 ’cause of the pandemic. And, so that brought us down to $17 million. Um, but then we kind of caught up, we had what we called a catch up COLA last time where there had been so much inflation since the pandemic and we hadn’t actually had any cost of living adjustments significantly during that time. So, we got a bigger than normal COLA that we negotiated for in our last contract that didn’t quite catch us up to inflation, but almost did. So, in that鈥� that total cost of that package that we agreed upon two years ago was $38 million. Um, the college’s current offer is $3.7 million. So, from a $38 million package to a $3.7 million package. So the college’s offer is just right now a total outlier in terms of the history of contract negotiations at 抖阴福利导航. So, the college I think would say, that the reason that it’s so low is that we are in unprecedented economic times, you know? That the鈥� the funding is really bad for the college. That鈥� that there’s even a chance that the, um, the Big Beautiful Bill passed in Washington DC will trickle down in to Oregon’s budget, and cause decreases in funding. We actually don’t know if that will happen yet. The Oregon legislature’s working on currently. So, we’ll find out about that in the next week. Hopefully that doesn’t happen. But, if it were true that we were in such dire economic times that any public institution’s just starved for resources, then we would see other unions at other public institutions in the Portland metro area settling on really low cost of living adjustments, right?听

Miri: That’s not happening?

Ben: And, it’s not happening. , and they’ve all settled for COLAs between 3% and 5%. So Beaverton teachers settled for 4.75% in the first year, 5% in the second year. Salem Kaiser, 4% and 3.5%. Lake Oswego, 3.6, 3.2. So, I could go down this list. I don’t need to bore your listeners with the numbers. But, the point is that all of the numbers are between 3% and 5%. In fact, I’m in conversation with some of the workers at, um, Central Oregon Community College, the classified workers there. They’re also in bargaining right now, and they were just offered 4% by their management team. They didn’t accept it, but they were offered 4%. Um, Lane Community College classified workers were just鈥� they just settled a contract with 3%. By contrast, 抖阴福利导航’s current offer is 0.35%. So, we just want to pose the question like, if 抖阴福利导航’s peer institutions, in the same economic climate with the same funding sources, can afford a cost of living adjustment for their workers that allows them to keep up with inflation or exceed it, why can’t 抖阴福利导航?听

How a Strike Would Effect 抖阴福利导航

Miri: Yeah, it’s a good question. That would be great if, uh, somebody answered. How would a strike affect students and employees at 抖阴福利导航? What are the鈥� the things that they can expect? Starting with students; what are the things that they can expect in the next month? You know, while strike things are potentially getting set, versus afterwards when a strike is happening, like what resources will they not have access to? What, uh, will happen to grades and classes and trying to sign up for next term?

Ben: This is an excellent question. So, I’ll start with just some basic information. Um, so if we strike, we’ll probably strike on the Wednesday of Week 10, which is March 11th. From that point on. Classes will be canceled and probably the college will be closed. Buildings will probably be closed. We don’t know that for sure. We don’t control whether or not that happens. But, um, if we go on strike, it’s very鈥� very likely that our union, FFAP, the Federation of Faculty and Academic Professionals, will strike at the same time as the classified union, the Federation of Classified Employees. And, that union represents custodial workers, bus drivers, food service workers, administrative assistants, and a whole bunch of other workers. So, what that means is that the vast majority of people employed by 抖阴福利导航 will all be on strike. Probably, 15, 16, 1700 workers, on strike at the same time. So, that means the college will be closed, classes will be canceled. If you have a class that isn’t on campus that’s just on D2L, that class will be canceled too. Different teachers are navigating this complicated thing in different ways, and we’re all trying to find ways to鈥� to make this, you know, negatively impact students as little as possible. We understand that this is a major, at best, an inconvenience and at worst, like, it really sucks and is problematic for students, um. We don’t enter into that decision lightly. It’s much like, you know, I think about nurses sometimes who have to go on strike. We’ve had long nursing strikes in the Pacific Northwest recently and nurses don’t go on strike lightly either, ’cause they know that their strike might affect patients. But, we also know, I think nurses understand that to build a better healthcare system, like a healthcare system for example that has a鈥� a better nurse to patient ratio, um, so patients get a better experience, sometimes we have to take, like, short-term sacrifices to push for long-term improvements. And, we hope that our strike at 抖阴福利导航, if we end up going on strike, will be like that. It’ll be a short term sacrifice for all of us, for workers and for students. Um, but we hope that it’ll help get 抖阴福利导航 on the鈥� on the right course.听

Miri: Yeah, absolutely.听

Ben: So, in terms of, like concrete impacts that it could have for students, if a strike is only a few days long, that will probably mean you miss a class or two, sort of like if the college was canceled for a weather outage, right? If the strike lasts longer than that, we start to get into finals week, and that disrupts final exams and potentially even disrupts the submission of grades. So, it’s possible that grades could be submitted late after the end of a strike. And, of course, that’s disruptive to students. We think that major negative consequences for students won’t happen until we got into, like, into the first part of April, um, where it starts to affect things like academic standing and financial aid and things like that. So, we鈥� Expect, we hope that the administration, like us, will also be doing everything they can to make this as鈥� as least problematic as possible for students. Um. We know that some of the services that 抖阴福利导航 provides to students will also be disrupted. We鈥� we intend to have, for example, free food to give away at picket lines to students and to our coworkers, and we’re currently trying to just communicate out as well as we can and build relationships of solidarity with students. This conversation is part of that. There’s gonna be a, um, a student facing town hall today at Cascade Campus, um, and another one later in the week. I think at Sylvania. So, we’re trying to do everything we can to reach out to students. 抖阴福利导航FFAP, our union employs two student organizing interns, which are 抖阴福利导航 students who are developing organizing skills and, um, and are paid employees of our union to do that work. Um, trying to help establish, you know, relationships of solidarity with鈥� with students. We’re really proud to have the support of AS抖阴福利导航 who signed onto our solidarity pledge, and tons of individual students who have also signed onto that pledge. But, we understand that this鈥� that if we strike it will be disruptive. To all of our lives, including student lives, and we don’t take that lightly.听

Miri: Yeah. Awesome. Thank you very much for coming and taking time outta your morning to talk to me today.

Ben: Yeah. Thanks Miri. I’m sorry that I have to move on. Yeah, no worries to鈥� to get to class. Um, but I鈥� but鈥� but you’re in good hands with Jacob. Jacob, thanks. Um, your patience while I talked a lot and, um, and, uh, good luck with the second half of the interview.听

Jacob: Of course. Thanks, Ben. See you soon!听

Miri: Yeah. And, I wish you the best of luck on your, uh, negotiations.

Ben: Thanks so much, Miri. Appreciate that!听

What Admin is Saying

Miri: So, one thing that Ben had mentioned was, one of the things that the union is trying to work toward is getting things more universally accessible for students of all needs. You know, not necessarily within just what the union is bargaining for, but it being part of a cultural shift, a societal shift in Oregon to get things free and cheap, secondary education, free and cheap for people who, who want it, who need it. So, based on that, what do you think of having funding and course decisions and stuff be so based off of graduation rates?听

Jacob: The Music and Sonic Arts, Save Music and Sonic Arts campaign, administration will really cherry pick and sometimes even fabricate its data for graduation rates. Since people, especially community college might take more time, they might be able to take, you know, one course a term, they might be able to take three courses a different term. They might have to take a term off depending on鈥� on life situation. So I think it’s a poor metric, certainly a poor soul metric. I think we want our, you know. I absolutely want my students to finish the program, get great skills, and be able to succeed in creative careers. I teach in a creative program and I want to gear towards them, towards the lives of, you know, supporting themselves through their creative work. That’s the most exciting thing in the world. So鈥� And, what that looks like isn’t necessarily just the graduation rate for one year or another. Those things are important. Um, and we all need to be paying attention to them as, uh, as faculty and administration as well. Um, but, yeah, not solely.听

Miri: Yeah, I think the graduation rate obsession comes from looking at it from the perspective of public primary schools, where you are enrolled just default all the way from first through 12th grade. Uh, and that’s your options. Like there is a dropping out, and there is a completing, and that’s it. Or, for more traditional four year university type things, where you go, you sign up for this program, you go there, you take these classes, and then you graduate or you drop out. Versus what a community college is useful for; where you can go and take a couple of classes, when you can afford it, and then take a term two, three off, and then take a couple more classes when you can afford it. And, I think having that鈥� having that affect graduation rate measurements, in the same way that that would in a four year university, is inaccurate, at least.听

Jacob: I agree a hundred percent. I鈥� I think the impetus is to鈥� to encourage students, to support them in all those decisions. ‘Cause you know at鈥� at a large expense four year university. You’re also like buying into that many years of鈥� of loans or debt or whatever that鈥� that locks you in there. So, there’s that added pressure as well, and you can’t leave or else you lose all that. And, so I think here at鈥� at 抖阴福利导航, we need to鈥� We鈥� we want our students to continue through the program, continue to build on those skills on top of each other. Um, but the pacing needs to be a little bit more realistic to people who have families, who have鈥� or everybody’s working, uh, you know, all these sorts of things that they have to take care of as well. And, I think we need to be, uh, uh, flexible about that. Administration’s job. I think, um, right now where鈥� where they see it is like they’re, they’re just sharpening knives. It feels like鈥� and this is not just at 抖阴福利导航 or this particular administration, though this one is just a little bit more brazen. But, it’s the鈥� the corporatization of higher education. Uh, really almost like the venture capital approach. What can we slice away for parts in this bloated corpse from a previous era that’s higher education in America? And, so you have these consultant class people who come in, who run administrations, who run boards, and they鈥� they all鈥� they wanna see is cost cutting. Except for in their own sense. Like Ben, uh, Ben mentioned the, you know, the 20 plus percent growth in鈥� in administration in this college with a, you know, subsequent shrink of actually student facing. I like to call student facing versus administration. Um, uh, a very lopsided, so they don’t wanna cut themselves. Um, they just wanna squeeze everything else. They wanna cut programs, doesn’t matter what reasons. Um, that’s something I’ve come to learn over, uh, bargaining with this administration is that the reasons aren’t important. They just want to cut and pick apart. And so whether its graduation rates, whether it’s income to the college from a program, whether it’s hireability, all of these things, when you pick apart the reasoning for any of their processing, and when it’s starts to fall apart, they’ll just hop to another. And then when you get ’em in a corner, they’re just like, 鈥渨e’re doing this ’cause we can.鈥�. So, that’s鈥� that’s sort of where I’m at here. So, I鈥� yeah. This is a long-winded way of answering your question. I don’t think that graduation rates should be the sole metric of the success of a program.听

Miri: Yeah. Well, in鈥� in all my talks with, uh, student organizers, the thing that they’re fundamentally most frustrated with from the administration is a lack of transparency and honesty. Um, you know, they鈥� they go to the town halls, they ask the questions, they send the emails, and then are either stonewalled and, uh, lied to their face and told that they are not receiving the communications, the administration is not receiving the communications that the students are giving, or when they ask a question, when the student’s asking a question that the administration responds to, it is fabrications or a smokescreen. For example, in the Music and Sonic Arts having a low graduation rate being one of the reasons for that program to be shut down when that program has a 40% higher graduation rate than the college average.听

Jacob: Yep, that’s right.听

Miri: Um, so what kind of things are staff facing in that same kind of vein, of things that you’re asking about and then just being obfuscated from you when they answer.

Jacob: Sure. No, I appreciate that question. And, and it breaks my heart that that’s the, um, that the experience of students with this administration as well. And, as a quick background, so I’m鈥� I’m a faculty member in Multimedia program. Music and Sonic Arts I would consider sort of our sister program. And, um, I have a lot, you know, you were one of them. Uh, I have a lot of Music Sonic Arts students in my classes. Um, and so I’ve been involved in the Save Music and Sonic Arts campaign for almost a year now. Starting with a kind of legit by-the-book, what’s called, Impact Bargaining. When, if something鈥� something administration makes some change that affects the workers, even if it’s in between contract years, we get to bargain it as an individual item. So, that we鈥� we did that all through last summer, went absolutely nowhere. Administration just ran their wheels. And, they did exactly what you mentioned. They lied about the reasoning, multiple times. So, they would say, it costs money. Can you tell us how much money? Or it’ll save us money to cancel this program. Can you tell us how much money it saved? No. Literally they said that, um, it doesn’t prepare our students for work in the industry. We had dozens of industry leaders come and, and provide evidence. Otherwise they said, okay, well we don’t care. Um, and then it is graduation rates. Graduation rates for our Music Sonic Arts is higher than the average. I, it’s鈥� it just doesn’t make sense. It’s like they don’t, not even caring to properly lie about the reasoning for things. And it’s鈥� it’s really heartbreaking, and to be honest, really scary at this moment we are at right now.听

Miri: Yeah.听

Jacob: ‘Cause it means like, well, what are they gonna do next if they don’t care to tell the truth to us or to students? And then to answer, sorry for the roundabout, but to answer your question, how does it affect faculty like us: This kind of process, what this administration’s doing? It’s not unique. It was the same way when I was at Portland State. Administrations in this kind of venture capital, picking over the corpse way. They’ll squirrel away money into these savings accounts, claim they need to do it for a rainy day, and then shrink the budget to a doom budget and then cut, cut, cut. That’s what they’re doing here. Ben alluded to it. They’re, they’re artificially deflating the budget and then squeezing all the programs. It’s Music and Sonic Arts, and there were鈥� there were other programs that were cut. Russian language program. Uh, gerontology, in this era where like, that’s such like, like we’re getting, we’re aging as a country. Like we’re not gonna need people knowing, gerontology? It鈥� it’s just madness. So they cut these programs arbitrarily, it seems like, and then squeeze the rest. And for folks that feel like, whether they’re in your faculty and listening or students, you think your program’s safe, you’re not, I lost a class, so how it effects staff, I lost a class that I was a full class, that I was slated to teach this term because of this part-time faculty budget, uh, squeezing they’re doing across the board. Um, and that’s money outta my pocket. And I, I think it’s important for students to know, um, it’s a real hard fact is, you know, when I was in college, if you got to be a college professor, it seems sweet. You know, like you get to do the thing you’re interested in and you鈥斕�

Miri: You’d made it.

Jacob: You made it. Yes.听

Miri: It was the end goal.听

Jacob: You’d get to put on your tweed. Yep. Exactly. You put, you get your higher degrees. You, you, you take on debt, you like, you know, burn through your twenties and maybe your thirties living like a grad student. And then you can get a professor job and you’re okay. You getting put on your tweed coat with the patches and, and like, and, and it’s chill. But, but that, that is a relic of, um, of the, of the, uh, 1900s, let’s just say. Um, the reality for the vast majority of faculty like myself is that we are, like Ben alluded to, basically academic gig workers. Folks will teach individual classes. They’re called adjuncts, and I’m an adjunct. It’s a sucks to be in the situation, but I’m a proud adjunct and I’m an organizing adjunct. But the way that it works is that we take classes, at a time. We have shorter contracts. We oftentimes don’t have access to benefits in healthcare. That’s different here for reasons I’ll get to in a while. The “too-long-didn’t-read” version of it is that because we have good organizing and, and organized for good contracts.

Miri: Because of people like you and Ben.听

Jacob: Well, yes, and the people really before us. I don’t wanna take too much, you know, of, of that, but it’s, it’s really important. So 70% of the faculty that teach at 抖阴福利导航 are part-time adjuncts like me. I know my colleagues, some of the best teachers I know, uh, I’ve ever met, and I’ve been teaching for almost 15 years now at college and university level. Some of the best teachers I know at this institution are on food stamps. Many of us have to hop around between three, four institutions to make ends meet. Um, people drive Uber. It’s like you wouldn’t. You wouldn’t ima鈥� college teachers in this country, and it’s not just 抖阴福利导航, but 抖阴福利导航 is like right in the middle of the 70%, uh, adjunct faculty teaching classes. Um. The vast majority of folks that teach college and university courses are really on the edge, so things like this small insulting COLA in an era of high inflation is, like, existential for the vast majority of American and 抖阴福利导航 teachers. So to have your meager paychecks that were already getting paid be worth less an actual value, um, is not just an insult it’s like an existential threat for our ability to make ends meet.听

Miri: And especially with, and these, with what you just just said about having, having one of your classes just, Nope! Taken away from you.听

Jacob: Yeah.听

Miri: You know, so something that you have no control over.听

Jacob: It was filled. My classes are鈥� are, you know, are filled and have almost filled wait list, so like it’s, it’s it, yeah. It鈥� it’s really 鈥�, it’s really frustrating and scary.听

Miri: Yeah, so then combining just nabbing classes with 0.35%, which again, that just seems like someone put the period in the wrong place on accident, like they were reaching for the zero and they hit period instead.

Jacob: Yeah, it would be awesome if they listen to that鈥攖hat logic. But, um, they鈥� they won’t. And that’s what we’re up against. The majority of the teachers at 抖阴福利导航 are really鈥� it’s an existential threat for us to take such a low COLA right now. It affects our day-to-day, our ability to make ends meet. And so I want everybody to realize that. It is a really part of it being a big tent union where we have full-time faculty and academic professionals, so advisors and stuff, and this massive group of part-time faculty is that there’s鈥� there are people on very different levels of security in our鈥� what’s called 鈥渂argaining鈥� that our union represents.听

Miri: Yeah.听

Jacob: The majority of us are really on the edge like this. And these鈥� these, you know, non-existent COLAs really affect not only our, you know, ability to teach and do our work and keep up with students, but if we’re running between two, three, sometimes four schools to teach or, you know, taking on other part-time gigs during the teaching year, we don’t have that time to鈥� to focus. We’re exhausted, we’re worried, and we’re not gonna be the best we can be in our classroom for our students. And that’s outrageous to me. Especially when you have a president who gave herself a 2.5% COLA, you know, and almost an or almost a power of 10 or whatever more than she’s offering us. Plus all the benefits. She gets a $25k retention bonus every year, all these sorts of things, it sounds like madness ’cause it is. Um, and that’s what we’re up against and that’s鈥� that’s what’s pushed us to this鈥� to this point.听

Miri: So how, um, h鈥攈ow can a strike be avoided? What are the things that need to happen from the administration in order for things to progress in the way that everyone wants them to?听

Jacob: So they鈥� the short of it is that they can come to us with a real contract or with a real possibility, a real COLA, something that we can pass. Cause we have to 鈥� we’re a democratic institution, so our members have to agree to any, um, any deal that we make out, even outside of the strikes. Uh, the members voted to strike, and the members have to vote on a contract if it comes through. Um, so they gotta do that and they gotta do that now. It’s really frustrating and I think a little, I’d say concerning that they haven’t, as, as of this point, done that this week. So this weekend, last week, we had our Strike Authorization Vote for our union, FFAP and FCE, our sister union, we’re really tied together. And we’re鈥� we’re lockstep in terms of timing for how these things will happen to inflict the most pain on administration and get this over with quickly if it’s needed. Um, we both voted 94% to authorize the strike. And we had between, 86% for us and over 90% turnout for FCE. So high turnout. This is, you know: Our members, uh, of your teachers, everybody that works at the college, IT, janitors, everybody. They think this is ridiculous. And they鈥� they want it to stop and they’re willing to withhold their labor. How do we avoid that? Is that they realize that and come up with a better offer. In lieu of that, we keep putting pressure on them, which is what we’re gonna do. We’re gonna show up to every little鈥� every little fringe, um, you know, back-patting thing that they have we’re gonna continue to do. Practice pickets and prepare for it as well as we can, um, within each other, as faculty and鈥� and workers as well.听

Miri: Yeah, there was a demonstration at Cascade two Thursdays ago from when this is being recorded, um, which also coincided with the student walkout that had been going on. And I talked to the organizer of the student walkout and she said that she had been working closely with union, um, representatives to time things together and work together to keep pressure on the school to actually respond to student needs and, um, and鈥� and staff needs, faculty needs. How鈥� how did that go? What, is that something that’s going to be happening more and more before a strike happens?听

Jacob: Oh boy. I hope so. And I know you’re talking about Alena Slee. She’s a force of nature. Um, I do want to be clear though, that the student walkout was an entirely student organized, and run walkout. The walkout was to, um鈥� to save Music and Sonic Arts. The communication we had together was, oh, we have, um鈥� we as faculty and, um, the鈥� the CTE folks as well, the classified staff wanted to do a rally that same day. We’ll just do it a little bit earlier than the students were planning their walkout. So both, yes. Yeah. Sorry. We could support鈥� we could support them. They could support鈥� No, don’t鈥� don’t鈥攄on’t apologize. I鈥� I, um, and then the way that student organizers have been working with, um, faculty organizers in the Save Music Sonic Arts campaign has been really closely, and that’s been really amazing. For, as a faculty member to work with students鈥� again, it’s not my program, not the one I teach in, so but鈥� but to have the students, uh, show up to us, show up to the same meetings, ’cause you know, to take, really take stock in the, program and want to take solace in it, take solidarity with the other students and with faculty, has been really, really, really powerful. The, um鈥� the whole strike thing for us and for classified staff. And then the Save Music and Sonic Arts campaign, they’re separate, right? Um, you know, one’s entire college wide, one’s about a specific program, but they鈥� they reflect, both similar frustrations with leadership and administration and failures of that leadership and administration, but also similar hopes and dreams for something better.听

Miri: Yeah.听

Jacob: I think two things is like two star, like a binary star system that are kind like鈥斕�

Miri: Yeah, absolutely.听

Jacob: They’re rotating, like they’re鈥� they’re鈥� they’re drawn to each other and they feed off of each other in a鈥� in a good way.听

Miri: And they both come from a place of love for 抖阴福利导航, and what it does, and what it means to everyone who’s a part of it.听

Jacob: Absolutely. I’ve taught at at least half a dozen colleges and universities. Some, you know, really expensive private schools, state schools, and 抖阴福利导航 is my favorite place. I wanna stay here. I want to, you know, work the rest of my career here, which is part of why I feel the pressure to do this organizing and to stand up for it.听

Miri: That’s something I hear a lot from a lot of people, like both from students who, even for myself at least, I was at a very expensive private school studying audio engineering and all that stuff. And then I wasn’t getting what I wanted from it, and then came back to 抖阴福利导航 only because it had exactly the program that I had been looking for, which was the Music Sonic Arts program. Woohoo!

Jacob: That’s so fantastic.听

Miri: And I know a ton of other people that I’ve talked to, both鈥� both in a professional capacity, like this in interviews, and just, classmates, coworkers, people at CoffeeHouse 5 across the street who also came back to 抖阴福利导航, because it has just a supportive environment where a lot of universities are losing that more and more rapidly.听

Jacob: Absolutely.听

Miri: Especially at Cascade, where, you know, we have a lot of creative-based programs here. Like we have art and we have film and multimedia. All that stuff is here and that just lends itself to being part of an external community.听

Jacob: Um, and I鈥擨 feel it too. It’s, it’s a really great energy at Cascade and, and it’s鈥� and if anything, I, you know, when I first started it was, um, I mean, pandemic’s still ongoing, but it was sort of toward the tail end of the鈥� of the worst of it.听

Miri: Yeah.听

Jacob: And鈥� and to see the campus really come alive and then build through the鈥� the鈥� the student organizing towards saving the music tonic arts program, it’s鈥� it’s鈥� it’s such a great place to be.听

Miri: So, if the strike goes through, how do we support the people affected by it? How do we support students? And then how do we support the faculty and staff?听

Jacob: Sure. So, um, the way that it’ll look. So I guess like the way that I’m doing it for my鈥� my courses, is I’ve been talking with my students about it for, you know, at least a month that this strike looks like it’s coming. Here’s what’s gonna happen. Um, so if, if this, our strike date is, uh鈥� is tentatively planned for March 11th. We were really strategic about that day. Um, it helps out a lot of the workers in certain ways, but also it applies a lot of pressure on administration. And it’s. easier in some ways on students, I believe, than if it started in the beginning of the next term, where it would hit right around registration deadlines, and financial aid would be difficult, and all those sorts of things might get tied up. So what I鈥� what I did with my courses, it is like鈥� okay, I usually have kind of like three units. I’m kind of shortening the last unit. They’re based around creative projects, and I’m shortening that last one to a series of exercises and just kind of cutting things off a little bit so I will be done by before the strike hits. I’m advertising this also as like a鈥� as a possible model. I’m not sure like it’s necessarily worthy of that, but like it’s something for other faculty to think about. And then I’m going to crank, crank, crank right before, like, uh鈥� pull an all nighter before, if the strike goes through, on grading and get the students an email that has like what their final grade will be when the strike is over as like as close as I can estimate it as possible with what the鈥� with the material I have.听

Miri: Just to alleviate some of their stress and worries?

Jacob: Yeah. It’s not like, yeah. So they’re not like, “Oh, I have no idea what’s going on.” And they, students won’t lose credit, they’ll just get the credit once the strike is over and the final grades go through, if final grades have to be postponed. And that’s if they have to be postponed. We’re hoping and not鈥� we’re hope鈥� we’re hoping administration comes to their senses, but they don’t seem to have a lot of senses, uh, with this group of bozos at the top here. So I don’t necessarily trust, but we have to keep applying pressure. So that’s鈥� that’s what I’m doing. I’m basically like shaving off a little bit of the, the later work and what would be kind of like, goes through the finals period of time. I have some flexibility. Others鈥� other faculty don’t. And we’ve had some really intense and I think productive conversations within our union and with faculty who have like, where鈥� where the timetable is more difficult to adjust like that. And so what we’re saying to all hold together is that what we鈥� things we can’t do while we’re on strike, but, uh, you know, we’re leaving like how faculty adjusts getting up until that point up to them. For instance, there’s might be some flexibility on if I’m gonna leave my D2L shells that have, you know, examples and have kind of how-to-guides, uh, live, even though I’m not gonna be adding or鈥� or evaluating any new material on it. Um, other faculty are just are totally turning their off. So you’ll go there and it’ll be a blank鈥� blank slate. Um, there’s some flexibility there. And so long as you’re not, you know, grading, not answering emails, not holding classes as the main point of work stoppage. But circling back to your question, how can, if students鈥� if folks wanna help each other, how we’re helping each other in, uh, as faculty? We have, um, both an ongoing hardship fund, that I recommend faculty apply to for, um, the deadlines coming up. It’s the 20鈥� February 24th. Right now, the deadline’s the 28th. That’s a sort of regular thing we have. We’ve also been building a strike fund over the years that we’ll distribute. Uh, what we need to figure out. Um, I don’t know the exactly parameters of how we’ll distribute that to our鈥� to our faculty and AP workers. And then also AFT our sort of parent union, uh, American Federation of Teachers, has some strike funds as well. There’s also, Oregon has a wonderful new law that allows for workers on strike to get unemployment insurance for up to 10 weeks. Um, so I recommend any faculty listening to get that, uh鈥� get that lined up for March 11th and apply right away. There’s some kinda like waiting periods, but it’d be good to kind of get in that system. For students. Um, like Ben mentioned earlier, um, we’re hoping that our picketing at all the campuses will not just be sort of a show of force administration. Will be a place of community aid as well. Um, where we’ll have food, we’ll have some other resources for folks or students who might not get that otherwise, if the, you know, dining halls are closed, et cetera, et cetera. Um, we have resources for broad鈥� more broad community aid connections, in Portland.

Miri: I just think it’s interesting that this is so. That everything you’ve been talking about, and so much of the stuff that Ben was talking about as well, is focused on community aid and mutual aid and people working together to support each other and themselves. And not, I don’t know, not just crossing their fingers, closing their eyes and closing the door. Um, not just waiting it out with the鈥� the rock rolled over the鈥攖he entrance. Um, having all the people work together to, and even to just continue to support students as a priority, which I think shows the dedication of everyone who’s gonna be involved in this. Their priority is students and to help students. They have to also take care of themselves, which is something that the administration is not鈥� not seeming receptive to.听

Jacob: Yes. Our, I mean, faculty, our working conditions鈥� our working conditions are students’ learning conditions. So, we have to look out for both. Um, and throughout all the conversations we’ve had within our union, um, all the concerns really, you know, we’re all concerned about ourselves, but so many people are concerned about how this affects our students and to minimize that impact. Um, and, uh, we’re working really hard to make鈥� make that happen, but we can only go so far as administration is willing. Uh, if they’re willing to burn it down, then we’re gonna have, you know, problems. So I think that, uh鈥� that students, if they wanna support, if they wanna make this quick show鈥� show up at some of the picket lines, um, I would, to be honest, I’m not even sure that any of the communications that are being sent to the president’s office or even to the board of, uh, directors are going through at this point. Um, if they are, they’re certainly not paying attention to them. So I would really prioritize, uh, showing up in person. Um, we’re working hard. To make our pickets, um, uh, accessible, um, in a lot of different ways to make our actions going on forward, um, uh, accessible to, uh鈥� to focus hard of hearing and all different ways. We’ve sort of failed in that way, I think, up until this point. Uh, but now what we’re really, uh, angling that way, but, and also providing, uh, food, providing, um, space, uh, for people to鈥� to be there at the picket line, but to take part in a way that works for them and to be able to, um鈥� to gain access to community aid and, um鈥� and just sort of to be part of community as well if鈥� if those things are missing, uh, when the school is shut down.

Miri: So what is the outlook at 抖阴福利导航 right now? How are people feeling about leadership and about how that will? About what that will make the future?

Jacob: So, um, leadership is looking real bad right now if you ask me. Um, they’re not doing themselves any favors. And the reality of it is that this president and this board of directors from this point out, when you Google their names, they’ll have attached to them, uh, that they had the only student walkout in, uh, on their watch in鈥� in 抖阴福利导航 history, at least that I’ve heard of. And the only strike in 抖阴福利导航 history that has ever happened as far as I can鈥� as far as a quick Google search will tell you. And so that’s not a good look for any of these people if they’re looking to, um鈥� to continue on and, um, uh, you know, use this as a lily pad, which unfortunately happens a lot with college administrations.

Miri: Is that a common feeling right now that a lot of the administration is using this as something on their resume?听

Jacob: Yes. Definitely, certainly in the鈥攊n the president’s administration, however, they鈥� so that’s, that’s my pooh-pooh, for those folks to get their鈥� get their act together and that’s the, unless they want that to be their legacy, which is really, it’s starting to solidify that that will be their legacy. However, um, and I wanna attribute this in particular to the student activists. Uh, for the Save MSA campaign, we’ve had some really great, uh, relationships built with individual members of the board of directors of 抖阴福利导航. So their, ostensibly, their job is, um. They’re publicly elected by鈥� by region in the, in 抖阴福利导航’s area, uh, you know, publicly elected like any other, you know, like city council or any other official. And their job is to oversee the president and the, um, the administration they’re in. They’re in general failing in that鈥� in that, um, in their job. However, we have, um, had some great conversations. We have a number of, I say really strong advocates on the board of directors whose relationships have been built through the faculty and in particular the student鈥� um, students involved in the Save MSA campaign. And I think that those relationships are something to build from. I think a new 抖阴福利导航 will be born from the good people on the board of directors who are working actually at the, um, who care about the students, who care about the institution. The other people will come or go as they, you know, as they will, but, and I鈥� I don’t want to pay them too much. Mine, I don’t think they’re worth it. But, um, because I have done so for over a year with these various campaigns. Um, but the people that are worth, um, that鈥� that really put the school first to put their constituents first and our students first, I think there’s some hope there and I’m excited about that to grow from it. And so that’s鈥� that’s鈥� that’s leadership. But then on the flip side of it. I, you know, I’ve never been in a working situation where there’s been so much unity with my other, my fellow workers as鈥� as here. And then same with students, the student activism that’s been going on and students caring about their programs, caring about each other and looking out for each other. I see it every day in my classes. How鈥� how much y’all care for each other, how much you’re excited for each other to succeed. It’s so inspiring. And I’ve never seen that at any other places I’ve taught. So that is, that’s like a鈥� that’s a spirit that’s not, uh, going away no matter what this administration uh, tries to do. So that’s my hope. Um, I have very little hope for the few figureheads at the, um, at the top of the鈥� of the whatever ladder. Uh, but I have鈥斕�

Miri: Inverted triangle?听

Jacob: Yeah, exactly. But I have a ton of hope for鈥� for the rest of us. And I think that we should, you know, lean on each other, rely on each other, uh, help each other out and make a noise to really push, um, uh, push our future through here.

Miri: Me too. I said this at the end of, uh, the last MSA episode I did where 抖阴福利导航 is a huge school and a hugely influential school. And I think if the changes that need to be made are made here, then it will make it 10,000 times easier for everyone else going through similar struggles down the line to have something to look at and know that they can do it too, and have a model with which that they can base their efforts off of.

Jacob: I think you’re a hundred percent right. I feel like I already see that happening. I see that happening with my, you know, my partner teaches at Portland State. They’re鈥攖hey’re鈥攅verybody’s paying attention to what’s going on now. There’s a lot of eyes on us and a lot鈥� a lot to be inspired by. I think, um, both with the solidarity shown with, um, workers and educators and鈥� and students as well here.

Miri: Yeah. And, uh, you know, as if it was a perfect visual metaphor, which the poor listeners won’t be able to see, uh, as this conversation’s gone on, the rain has stopped and the sun is finally starting to peak through some of the clouds.听

Jacob: A new day is possible and we just need to make sure, um, uh, we’re, we’re all around and healthy and happy to see it. So I’m excited about that. As to, I鈥� I, overall, I’m excited for the future of this institution. Um, I think we have to all stick together right now鈥� um, to push it through. It’s like, um, uh, it’s not the darkness, uh, it’s not the darkness of the tomb. It’s a darkness of the womb, right? Way to be born.听

Miri: Yeah. And, uh, especially with people like, uh, Alena and like Max and like Drew, who are just. Invested in not just completing their own education time here, but making sure that the people who are coming next and the people who come after that, and people who come after that can have even better opportunities than they themselves have had is inspiring and, uh, powerful. And they’re actually doing something to make that happen. Which, you know, I’ve been鈥� I’ve been kicking around 抖阴福利导航 for 10 years now. Uh, so seeing something like this is not something I’ve seen before and it’s鈥� it’s incredibly inspiring.听

Jacob: Same here. I agree.听

Miri: So, um, again, thank you so much for taking time out of your morning to talk to us about this, and I wish you just the absolute best of luck in your negotiations and your, uh, if it comes to it in your strike and everyone getting through easily. Um, are there other resources that people should know about to learn more or keep updates or, you know, find other ways to support?听

Jacob: Yeah, so, um, is our union’s website. There’s lots of information there both geared towards, uh, faculty, general, public, and students as well. Um, and we have two informational, uh, uh, sessions for students happening this week. One is today four to five at Cascade Campus, Terrell Hall. And it’s also on Zoom. Um, maybe we can leave the link somewhere if it can go up. And then there’s one tomorrow, four 30 to five 30. It’s at Southeast actually. Um, and then also on Zoom, where students can go ask questions and get more specific answers. And then in terms of the, um, save music, Sonic Arts, , as a wonderful website with updates and information. And in particular, it has information I think is really useful for everybody in the Portland area, about who your 抖阴福利导航 board of director is for your region. Um鈥� and if you have any questions about who are the goodies or the bad easy, anyone can send me a note. I’m happy to answer that question. But just to be involved to realize that the board of directors of the 抖阴福利导航 are elected officials, they serve the public. So if they’re not doing their job, they should get the step in and out the door. Um鈥� so those are two resources and I appreciate you, Miri, and all the other workers on this podcast. All students and faculty, uh, and everybody in the public. Your support means a bunch, so thank you. And yeah. Solidarity forever.

Miri: Yes. All right. Thank you very much.

Jacob: Thank you, Miri.

Miri: With the administration, at the time of recording, refusing to budge, and the end of Winter Term approaching, how things are to go down appears uncertain. However, both 抖阴福利导航FFAP and the Associated Students of 抖阴福利导航 have resources available for students to help ease some of those feelings. One of the most important steps for students is to get registered for spring term as soon as possible. Even if you don’t yet have prerequisites or aren’t sure what classes you’re supposed to be taking, signing up preemptively will make the transition into term as easy as possible. Additionally, faculty are working hard to try and make sure that student grades, degree planning and financial aid will continue seamlessly, and that community support will be available both in person and . We’re going into something new here and treading into a realm that in the history of 抖阴福利导航 has yet to be explored. What is clear though, is that the success and safety of their students is these teachers’ number one priority, and it’s now on the administration to prove the same.

Kylo: Thank you for listening to Let’s Talk! 抖阴福利导航’s broadcast about disability culture. Find more information and resources concerning this episode and others at . This episode was produced by the Let’s Talk! Podcast Collective as a collaborative effort between students, the accessible education and disability resources department, and the 抖阴福利导航 multimedia department. We air new episodes on our ,听, and .

Episode Transcript

Transcript edited by Hannah “Asher” Sham

Welcome to Let’s Talk!

Kylo: You are listening to Let’s Talk!. Let’s Talk!, is a digital space for students at 抖阴福利导航 experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of 抖阴福利导航 抖阴福利导航 Foundation, or our community partners. We broadcast on our home website, , on Spotify, on , and .

Meet the Hosts & Today鈥檚 Topic: Surviving Societal Instability with Disability

Asher: Hello, everybody! My name is Asher, and we also have Asher DeHart with us. And, today we are gonna be talking about surviving societal instability as a person with disability. Do you wanna introduce yourself first, Asher, so we can get started?

Ash: Yeah. Hi, my name’s Asher DeHart. Folks call me “Ash”. I work for 抖阴福利导航 AEDR and and PSU, although I took a break this semester because of all the crazy going on in the world. I have done mutual aid and disaster relief for decades, not only in Oregon, but other western states and across the entire United States. I’m a musician and an artist as well and I’m here to share some insight to help people cope with the changing times.

Asher: Sure! Thank you so much for joining me, Ash. And, once again, my name is Asher. I am working as a assistant podcast producer here with the Let’s Talk! Podcast Collective. With how stressful life has been recently, we want to talk a bit about how to survive societal instability, especially for people with disabilities, physical and mental.听

Emotional Survival: What Self-Care Really Means

Asher: The first topic is we’re looking at emotional survival and mental survival, which I feel like is pretty important. So, what is self-care to you in your life, Ash?

Ash: Well, self-care to me is how I take care of myself. I think many of us, that are disabled or in other marginalized communities, are oftentimes caretakers and we do a lot of caring for everyone else around us; especially in troubling times like this. Because, we want everyone to be okay. But, in order to do that work, I have to take care of myself first. It’s been a process for me to learn how to practice self-care. But, self-care means doing the things that I need to do so I can be productive, reasonably happy, and effective.

Asher: Yeah, I feel like that’s very important for sure. I think it’s the same way for me; just self care in general. Whenever I’m having a difficult day, or I just need a step back, so I’m not mad at other people. To just do the things I love; at least that’s my definition of self-care.

Ash: No, I definitely agree with you there. It is really important to find positive things that we enjoy doing. To help maintain that status of self-care so we can be effective students, effective community members, effective activists, whatever our task in life is that we’re facing, is important that we can suit up and show up and be our best, even under extremely different difficult circumstances.

Asher: I definitely agree with you on that. Especially, those of us who have disabilities, whether it’s mental or physical disabilities, we need more self-care than anything else. Just to be very gracious with ourselves. I feel like we would struggle a lot more just with daily tasks in general and we just need to be kind to ourselves in that.

Ash: Yes, we do. And something I wanna add is we could have an ideal for self care, but we may not be able to meet that ideal every day or every week or every month. Sometimes we are only able to get part of the ideal met and that’s okay too. We shouldn’t judge ourselves, beat ourselves up, feel negative feelings towards ourself like we’re a failure, because we didn’t hit the mark fully on the self-care ideal. Any positive steps that we take to caring for ourselves so we can in turn care for our communities, our friends, our family is very important and very positive, and folks should be commended for that.

Asher: Definitely.听

Mental Health Supports: Therapy, Nature, Meditation & Community

Asher: You probably know this better than I do, but what are some mental health treatments? Only recently have I been diagnosed with ADHD and I’ve been to see counselors, therapist, and talking to my doctor of getting medication and all that. But, what are some mental health treatments that’s worked for you, Ash?

Ash: Well, I have ADHD, I have autism spectrum disorder, formerly known as Asperger’s Syndrome, and I also have complex PTSD, and anxiety, and a traumatic brain injury. Um. I have been to therapy for many years and I’m still in therapy. The standard pharma medication does not work for me, because I’m sensitive to medication. So, I have sought out naturopathic treatments for these conditions under the care of a doctor and I also use hemp-based CBD products that are free from THC. But, other things that I’ve done to help with mental health treatment, that are a little more outside the box than standard western medicine, yoga, meditation, I do a lot of time in nature. I spend a lot of time hiking in the forest and Forest Park and other parks. Because, it has been clinically proven that spending time in nature raises all the brain hormones and things up there that we need to feel healthy and good about ourselves. So, there’s a lot of different options as far as mental health besides the standard Westernized model. Support groups are also very good to participate in. Some people rely on 12 Step programmings, church, or other religious organizations to help cope with the things that they have going on. It’s a very wide spectrum of choice, as to what you can, do to increase your mental health capacity and to feel better. Especially, during these precarious times. I think one of the biggest is just community.

Asher: Yeah, I definitely agree with you on that, other than therapy sessions. I also have my own Christian community support group that I go to on a weekly basis, as well, just to help verbally, process things and to, get support from people and in turn help other people. I feel like is also very important with these trying times. It’s a give and take of helping other people and also receiving help at the same time, especially in community support situations.

Ash: Exactly, and oftentimes people who are disabled, or from marginalized communities, don’t know how to receive. We know how to give, and we know how to give, and we know how to give. But, sometimes we don’t know how to receive and I suffered with that for a really long time. ‘Cause with complex PTSD and being traumatized at a young age I became very self-reliant on me, and me alone, because I had a hard time trusting people. Over the years, I’ve had to work through that and I had to learn how to trust people to help me. In doing so, it’s made my life so much better and I just celebrated 12 years clean in November, which is just a really wonderful thing. Because, I was able to allow people to help me.

Asher: Congratulations! That’s definitely something to celebrate, for sure! I hope you’re taking yourself out to celebrate, or at least celebrating with some friends that have helped you along the way in that!

Ash: Definitely! There was birthday cake!

Asher: Yes! Let’s go! That’s always the best thing!听

Healthy vs. Harmful Coping: How to Reach Out and Build Connection

Asher: I think you touched on a very great topic, as far as healthy co coping mechanisms in that of reaching out versus being afraid to reach out. What would you say is a healthy coping mechanism of reaching out to people?

Ash: So, here’s a healthy coping mechanism. You might decide to volunteer at the local animal shelter, or you might decide to volunteer serving meals down at Blanche House, or you might go on Meetup and find a hiking group or a book club or another group that shares a common interest that you may have. A detrimental coping mechanism could be; you might go to the bar every night hoping to make friends. And, for some people that’s okay but, for a lot of people, that could lead to excess drinking and putting oneself in situations that could be hurtful or dangerous. So, I learned a long time ago that the bar was not the place for me to make healthy connections. I learned how to make healthy connections with people at school, with people at work, with people that were doing mutual aid in the community, helping other houseless people, things like that. It took me a while to have the courage to be able to do that; it took years. Because, my first few years back in Portland, my trauma was so strong. I had a hard time making friends. I had a hard time reaching out. It took a long time, but I did it one step at a time. And, some days it was baby steps, other days it was bigger steps. Then there were some days where I had a few steps back and isolated more. So, there is a spectrum to developing healthy coping mechanisms. Everyone’s timeline is a little different, but there’s many options out there, especially here in Portland, for finding ways to build community and healthy ways.

Asher: Yeah, for sure.听

Finding Community in Portland: The 鈥楶ortland Freeze鈥� & Giving People Grace

Asher: I relate to your story, and I’m sorry that you had to go through all that too. It’s difficult right now, especially in this day and age, where I feel like a lot of things are online and trying to meet with people in person; it’s difficult. Especially if it’s like a really big community group. You sometimes get lost, or, if it’s a smaller community group, it’s pretty tight knit and it’s difficult to get in and meet people and make potential lifelong friends. But, I’m also glad that you managed to find the support you needed.

Ash: And, I’m glad that you found it too. Portland does have a freeze. Their whole Reddit page is devoted to the Portland Freeze. People are friendly and nice here, but when it comes to really making friends, it can be difficult. I think a lot of that ties into the neurodivergency in this town. There are so many neurodivergent people in this town. Folks want to be friends, folks want to reach out, folks want to do things; and yet, sometimes, when it comes to taking that step, they don’t know what to do. So, you don’t get that phone call from the person you gave your number to, or that person that you were going to have coffee with might have canceled. But, it isn’t for us to take that personally. I’ve chosen to look at it from the standpoint of perhaps this person too feels nervous or scared, or may be neurodivergent, or have other mental health issues that are preventing them from stepping fully into the arena of friendship and community. I try to allow people the space to do that, because it was definitely given to me when I wasn’t able.

Asher: I definitely agree with that.听

Resource Roundup: Support Groups, Street Roots & Disability Master Lists

Asher: What are some resources for families and individuals? Support groups or communities, people that we can reach out to whenever we’re having a difficult time?听

Ash: There’s a lot of groups. Particularly for the autism folks, Oregon has a number of autism self-help groups. There’s a number of community groups centered around neurodivergent people. I think we’re gonna list those all at the bottom of the podcast page, so people can take a look through there. Also, one that I like to stop by is downtown. It’s the Maybelle Center for Community, it’s right in Chinatown, and it’s a place for community. It’s a lovely spot and anyone can go there. Housed, unhoused, everyone is welcome. It’s a place for folks to sit and talk and find community. Also, too, I’ve met a lot of really great people volunteering for the Blanche House. Because, there’s all kinds of people that spend time, volunteering there. I’ve met a lot of great folks that way as well. Again, there’s lots of stuff on Meetup too. All kinds of different organizations and groups. If you’re a student at 抖阴福利导航, there’s all kinds of things on campus where you can make community. The Women’s Resource Center, the Queer Resource Center, the Veterans Resource Center, and all kinds of clubs and activities. Community is there so, whenever you’re ready, reach out and find what matters to you and meet people that share those interests.

Asher: Definitely! Thank you so much for sharing all those different resources. We’ll definitely place them at the very bottom of the podcast in our resource list. If you want even just reach out to a local church or a local religious group, as well. I’ve only found out about this recently, but there’s something called, ““, and correct me if I’m wrong, Ash…

Ash: Oh, yeah! “Portland Street Roots”. “The Street Roots” are the folks that put out the newspaper and, the formerly houseless people, write for and sell. Some people, still houseless, are involved in that project and they also put out the little books with all the resources that you see around town. There’s also a lot of resources there that are available; anywhere from housing, to community, to medical, to groceries, all kinds of stuff. There’s also the Oregon Disability Resources master list. That was compiled by the University of Oregon and it’s called “Able Find”. That has everything that you could ever need for disability resources across the entire state. We will post that at the bottom of the podcast.

Asher: That’s so cool! Yeah, I didn’t know about that little booklet until a friend of mine shared it with me, because she was in need. She was like, “oh yeah, I found this really cute little booklet that a community member gave me!”. I took a look at it and, man, it’s a hefty read! But, it’s also encouraging to see how many resources are available in Portland. All you need to do is just look it up and just ask, really.

Ash: Yes, and it covers not only Multnomah County, but also Clackamas and Washington.

Asher: Yeah, for sure.听

Physical Survival: Food Help, SNAP Gaps, Pantries & Meal Delivery

Asher: With that, that is a great segue into our next topic, which is about physical survival. Recently there was that whole government shutdown and SNAP Benefits being delayed and all that. It was very heartening to see local coffee shops come together to provide food for those who have missed their SNAP Benefit Payments, and are unable to provide for themselves.

Ash: I haven’t had some experience on this recently helping others to locate food who had lost their food stamps. Again, the street roots guide has every food bank in the city listed. So, that’s an excellent source of information on where to get box meals, meals to go. I’m a big fan of “Neighborhood House” up in Southwest Portland. They serve the Southwest side of town and parts of the Northwest side of town, but anyone can go there and they have lots of fresh produce and they’re open several days a week. There’s a plethora of food pantries around the city. Again, Blanche House has meals to go and sit down breakfast, lunch, and dinner. You can find times on their website. All your social service organizations like “, and they use salvaged items that are donated from restaurants and other organizations, and they cook both a meat based meal and a vegan meal once a week. You can sign up on Wednesdays and that meal is delivered to your door on Saturdays. No questions asked. It’s really great and it’s super helpful to be able to get a hot meal to folks if they’re hungry. Also if we have any students or listeners today that are seniors, Meals on Wheels is still servicing the Portland area, despite cuts from the Federal Government. So, if you are disabled or 60, I believe it’s either 60 or 65 or older, and you need food service; please get ahold of them and they would deliver hand cooked healthy meals to you. and others give out meals, snacks. There’s lots of ways to get food in the city if you need to eat. Another really great organization is the “

Asher: I’ve heard a lot about Meals on Wheels. I heard that their meals are pretty good too.

Ash: We also have heaps of Free Food Markets and Farmer’s Markets in the city. They have the PSU farmers’ market, they have Farmer’s Markets available in all different neighborhoods. PSU and 抖阴福利导航 both are doing free food markets. I think that’s really wonderful for students and faculty alike. Both have the food pantry, so that no one is going hungry on campus.

Asher: Oh, yeah. For sure. I heard about the Free Food Market only recently; running through hard times myself and needing to find a couple things to fill the pantry. The Free Food Market, especially at 抖阴福利导航, is a great resource, that you could find on the Panther Hub and also on the 抖阴福利导航 home webpage.

Ash: Definitely.

Shelter 101: Overnight vs. Transitional Shelters (and Housing Barriers)

Asher: What are different kinds of shelters available? And once again, Ash, you’re the most knowledgeable out of the two of us. Tell us a little bit about all these different shelters that we talked about initially. First, “overnight shelters”. What are those?

Ash: Okay. So, overnight shelters, also known as emergency shelters, are short term overnight beds for folks who are in need of shelter. What that translates to is you go to the shelter, we’ll take the one over up in Northwest Portland, on 14th, you line up, you get a bed, you get a nice meal, you get to sleep, and then they wake you up the next morning and you are on your way. It is not a reserved bed situation. So, you’re not gonna come back to the same bed every night. You could be in a different bed, or you might have to go to a different shelter. Basically, that’s what an overnight shelter is, or also known as an emergency shelter.

Asher: Oh, interesting. Wow. What about transitional shelters?

Ash: Transitional shelters are a little bit different than overnight shelters. A transitional shelter is a shelter where you come in and you maintain the same bed and you are able to store your stuff there in a locker. You come in every night at a certain time, check in, et cetera. Most of them have a curfew. But, you come home to the same bed every night. That provides a bit more stability, especially for students and working folks, because you’re not running pillar to post trying to figure out where you’re gonna stay. If Overnight Shelter A is full and Overnight Shelter B is full where am I going to go? A transitional shelter is a guaranteed bed. Some have no exit date like the TPI Couple Shelter, and other shelters run by TPI. They do not have an exit date and you can stay as long as you need to, as long as you abide by the program rules. And, some have exit dates of six months to a year, two years. It just depends on the organization that’s running it.

Asher: I bet. Correct me if I’m wrong transitional shelters, in this sense, is for people who are looking for housing? Or is that a different kind of shelter where they stay there, but they’re also in like a queue for low income housing?

Ash: Many folks who are at Transitional Shelters are in queue. They have a voucher or they’re waiting on a voucher. They’re either looking for an apartment or waiting for that voucher to come through, so they can get the apartment and move out of the shelter into long-term housing. But, you also have people at transitional shelters who do not have a voucher, who are working, or going to school, and they are utilizing services their until they can, maybe, get the savings up. Because, landlords require so much now to rent in Portland and the surrounding areas in Oregon. You have to make three times the rent. You have to have a certain amount of money in savings. You have to have been at your job at least six months. And, that’s for all parties involved in a housing situation, in a standardized apartment, or house rental. So, not everyone has that, so they’re able to utilize the transitional shelter until they can get that job that’s going to help them move into better housing situation, or they have the job and are waiting to get the savings up, so that the landlord will approve. There are transitional shelters for families as well. So, that is the difference between an overnight shelter and a transitional shelter.

Asher: That’s very cool. Yeah, I have a couple of friends who were in transitional shelters, at one point, and then they transitioned out into more permanent housing, or into roommate situations too. I totally agree with you, with the idea of rental stuff; it’s so difficult that there are so many different kinds of conditions. Even when you move into a rental agreement there are some things that you’re not allowed to do. Especially, in my situation where I’m living at, I’m not allowed to have guests in the home, unless clearly specified during the day and no overnight guests as well that makes sense too. But, it’s also just very difficult to plan around get together with friends from outside of the home and you always just need to meet outside and stuff, which is very difficult.

Ash: We’ve seen since the pandemic that landlords have just become tighter and stricter, and stricter, and stricter. I can understand why landlords want good tenants. I’m not really here to discuss that. What I’m here to discuss is that some of the landlords have become so stringent that it’s just denying people housing. Especially, disabled, persons, and persons from other marginalized communities. So, at what point does an overzealous landlord, become discrimination? That’s perhaps a topic we can discuss on another podcast. But, people wonder, they’re like, “why are there so many houseless people in Portland?”. Well, because the landlords want things that most of the general public just don’t have. You have to be in a certain income bracket to even begin to qualify for housing unless you’re getting subsidized housing. Then there’s a wait for that too.

Asher: Oh yeah, for sure. Definitely.听

Safety & Specialized Housing: DV Shelters, Youth Shelters, and Sober Housing

Asher: The next shelter is “Domestic Violence Shelters”. Tell me a bit about those. It’s also very self-explanatory itself, right?

Ash: So, domestic violence shelters are shelters that accommodate folks who have faced domestic violence in the home, sexual violence, human trafficking, child abuse, verbal abuse, emotional abuse, stalking. The spectrum of what is entailed under the title of “Domestic Violence” is quite wide. So, if you have been a victim of any of those that I just listed, you would qualify to be housed at a DV shelter. DV shelters are normally very confidential, they’re in confidential locations. There are certain sets of protocols that, participants and staff abide by for the safety of all those who live and work there. It is a safe place for individuals; male, female, trans, non-binary, other marginalized genders, children, and their pets can come and seek shelter, seek safety, and rebuild their lives after a devastating incident of violence in the home or other DV related incidents.

Asher: With Domestic Violence shelters, is there a period of time for people to be in those shelters, or are they able to stay like indefinitely, or is it like a case by case kind of basis?

Ash: It is a case by case basis. It also varies from state to state and program to program. If we have any listeners today, who are being abused, I just wanna say that has happened to me in my life when I was younger. There is help out there and I came through it, and you will come through it too. If you are in the Portland Metro area, you can call the ““. You can also call, ““, and you do not have to call the police to receive services if you do not want to call the police. YWCA also has a domestic violence program and there are countless organizations in the city; such as “Rafael House” and others that you can get referred to. They also have the “Address Confidentiality Program” in Oregon and that is a safe mailing address so you can receive your mail without fear of interference from a batterer, or trying to find out where you might be.

Asher: Oh, wow. That’s a lot of moving pieces. You’re right to say that it’s definitely like by a case by case basis. Maybe some people need to stay a little bit longer, or some people are just looking to get out of the country or state. I’m sure there are services that help in that.

Ash: Yes, there are. There are relocation services here in Oregon for persons who are being abused of all genders. So, if someone needs that, “A Call To Safety” or “Gateway” can help with that too. Because, a call to safety and gateway are the two. Big organizations that place people and they are 24/ 7. There’s also the ““, which we can list at the end when we do the resources list. We’ll make sure to have all that in too.

Asher: Oh, yeah. Definitely. The next kind of shelter is a Youth Shelter. What’s a Youth Shelter?

Ash: So, Youth Shelters are for young people who are not with their parents or legal guardians for whatever reason. Youth Shelters, generally, take children and, I think it’s up to 23, here in Portland, from six to 21, 22, 23. These are shelters for children or unaccompanied minors who’ve been abused and they have various confidential locations throughout the city for Portland’s youth who have been abused. They tend to house children within their own age group. So, the older kids will be in the older kids’ house, and the younger kids will be in the younger kids’ house. They help children who do not have the option of going back home, children or teenagers who may have been kicked out for being trans, or non-binary, or another marginalized gender, children who may have been kicked out for being gay, kids whose parents just chose to abuse them, for whatever reason. These are safe places, that young people can go to receive help. And Portland, again, has several agencies for, youth that are in need. One of the main ones is right downtown near Powell’s, and it’s called ““. So, if we have anyone listening today who’s being abused in that age group, stop by “New Avenues for Youth” or try to give them a call and get some help. Because, you deserve to be safe, you deserve to be heard, and you deserve to be accepted just how you are and for who you are.

Asher: Oh, definitely. Yeah, I totally agree with that. Is there also a transitional period or like you said, that they house up to 25, or was it 23?

Ash: I think it’s 23 in Oregon. It varies from state to state, but I’ll have to double check that one. There are short term programs, there are longer term programs and there are programs to help get kids get into housing. I know that ““, also in the southwest region of downtown, outside in does a lot of work with the youth that are on the streets too. So, if you can’t make it over to “New Avenues For Youth”, you can stop by “Outside In” and request services there or give them a call. Again, if you are a young person who is being abused at home, or in whatever situation you are living in, you can seek help without having to call the police if you don’t want to.

Asher: Oh, yeah. Definitely. Next is Sober Housing. I can sort of guess just by the name itself; Sober Housing basically is for those who are getting out of drug use and alcohol use, probably.

Ash: Sober housing is for folks that are in recovery from substance or alcohol. Most sober housing requires complete abstinence from all drugs and substances, including THC, even though it’s legal. You have privately run sober housing, that’s run by individuals in the community. You can also have sober housing that’s run by the ““, which is a long time group that’s been around for decades that provides sober housing for folks. A lot of organizations that we’ve already discussed in our discussion of shelters; domestic violence, they too have options for sober housing. TPI just opened a sober shelter for folks who are houseless, but that are trying to maintain recovery, or who just choose not to drink, or take any kind of drugs or smoke weed and would like to be in an environment where, they’re not going to have a bunk mate, in the next row over, that might be drinking or using.

Asher: Are there also, once again, long-term programs and short-term programs for sober housing situations?

Ash: There are. And, there’s sober living where you can just go for a couple of months. There’s sober living that’s more intensive to where it could be a year to two years. It just depends basically on what you need as an individual. The rents tend to be quite less than what you would pay for a room in a house, or in an apartment.

Asher: So, for sober housing, different from shelters of course, you would need to pay like a fee to have a place听

Ash: yes, but there are agencies that help cover sober living costs, especially when someone’s first getting outta treatment and needing to go to sober living. There are organizations that help cover that. If you’re a musician who has published anything, “” actually pays for treatment, sober living, and therapy. So, they’re a great resource if we have any listeners today that are published, musicians in need of help. Get a hold of “Music Cares” in Los Angeles. They’re a subsidiary of the Grammy Corporation.

Asher: Oh, wow. All the way in LA. Wow!

Ash: Yeah, and they helped people all over the United States. They helped me.

Asher: Oh, sweet! All these shelters, we’ll put all the different resources definitely down in the, resource links below.听

Rental Help, 抖阴福利导航 Care Team, and Eviction Defense Resources

Asher: Are there any other housing and rental assistance, or eviction defense and other 抖阴福利导航 Housing Resources that you can think of, Ash?

Ash: Sure! Housing and rental assistance is a big one. “” does a lot of work in that area. I know that TPI provides rental assistance to their clients; when they find a place they help them get things paid for. Again, Street Roots, your number one go-to guide for everything you might need. As far as social services, they have a whole section that lists rental assistance in all three counties; Multnomah, Washington, and Clackamas. Local churches oftentimes will do housing and rental assistance too for both people that visit their church and also for folks that don’t, as charitable contributions. I think “Rose Haven” does some rental assistance. I’m not sure how much. But, again, we’re so lucky here in Portland that even though you may have difficulty finding housing; once you do find housing there are folks there that can step up and help you get that first month’s rent, that last month’s rent, and that deposit together. 鈥�” does a lot of work in that area, “

Asher: Are there any 抖阴福利导航 housing resources that you know of, Ash?听

Ash: I know that The Care Team, Haley and them in that office, they do great work when a student becomes houseless or needs stable housing. I know that 抖阴福利导航 just opened an apartment building that’s low income for students. I recall reading about that. But, if you’re in need of housing resources and you’re a 抖阴福利导航 student. You can go to the Queer Resource center, you can go to the Women’s Resource Center, you can go to the Veterans Resource Center, you can talk to a professor, or someone in student services, and they will write a referral to The Care Team. You can meet with a care representative who can discuss your situation with you privately and get you the help that you need. They’re great folks in that office. They work really hard to help 抖阴福利导航 students and their families. If anyone’s listening and needs assistance, don’t be afraid to reach out for help ’cause the help is there.

Asher: I wish I would’ve been able to reach out to, 抖阴福利导航 Housing Resources back when I first started with 抖阴福利导航. I didn’t really make a very good choice with my first living situation. I looked for a place to live in on Craigslist of all places! I was very young and uneducated during that time. So, that was… But, you live and you learn and I’m glad to hear that there are all these different housing resources in case I ever do come into rough times and all that. So, yeah. Highly appreciate that.听

Ash: You also mentioned eviction defense. Clear Clinic is the stalwart in eviction defense here in Portland. Their office used to be located at 抖阴福利导航 Cascade, and I would come and work for them on Fridays. I still, hand out flyers for them and stuff. But, they have moved to the East Bank Loss, on Ash Street. They still have the same website, but they are no longer tied to 抖阴福利导航. I think that the work that they were doing, just became so widespread in the community that they needed to spread their wings and grow, and I commend them for what they were doing. So, the Clear Clinic, they do eviction defense, they do expungement for misdemeanors and other expungable offenses in the State of Oregon, they also handle DACA and name and gender changes, and they’re doing wonderful work in this scenario, that we’re currently facing, with immigration law. If you need any of these services go to the website, give them a call, they’re wonderful people and they have wonderful folks that work on the eviction defense team. I’ve seen many success stories come out of the work that they do there for folks who are being faced with losing their housing.

Asher: Yeah, that’s a very important resource, especially just with how expensive everything is getting, just with how the rents are not matching up with the living rates.

Ash: I definitely understand what you mean and there is a need for folks who can do eviction defense in the State of Oregon. Here’s the wonderful thing that a lot of people don’t know; in the State of Oregon you can be a paralegal and do eviction defense. You can only do eviction defense, but you can still do eviction defense without having to be an attorney. So, if we have any paralegals out there that are retired, or someone considering maybe a career in the law, eviction defense is a growing field and it’s wide open for paralegals in Oregon. Take a moment to investigate and see if it’s right for you.

Asher: I love that! I had no idea that was a thing! Legal stuff wise, I thought that would just be like a lawyer’s job. I didn’t know that there was a specific role, as far as, eviction defense and all that.

Ash: Yes, there is in Oregon and we’re really lucky to live in a state that allows that.

Rebuilding Community: Starting Conversations & Coping with Loss

Asher: Community, as far as physical survival. We as humans, we’re not meant to be by ourselves. We’re meant to be with other people, whether you’re introverted or you’re very extroverted, you wanna be around people. The first question, for me is it’s been difficult also just over the years, is how do you reach out to people when you don’t know how to? When I first came here to the States, I didn’t know anybody. I didn’t know anybody at all. The only people I really knew were the family that I, pretty much, couch surfed with and even then it was difficult to just reach out to a community that I met for the first time. What’s your experience in that, Ash?

Ash: It can be very hard to reach out to people when you don’t know how to. Coming from the environment that I was raised in, I really wasn’t shown how to do any of that. So, I had to learn on my own through trial and error. But, for me it’s just always been about going, “Hi! I’m Ash! What’s your name?”. Just a simple act of kindness is saying, “Hi, how are you today?”. You never know, it could open up the doorway to conversation and friendship. So, I just really strive to live my life by just reaching out to people with kindness, reaching out to people with care, even if it’s just a, “Hi! How are you?”, or “have a good evening!”. Just acknowledging other human beings that are in my immediate sphere, in my day-to-day life that I pass, or that I see at work, or the grocery store, or here or there. I’ve made friends through playing music, and I’ve made friends through work, and I’ve made friends through making art; I met my partner at a concert after a protest. So, I had to overcome my fear of humans by learning how to just say, “Hi, I’m Ash! How are you?”. When I got comfortable doing that, over a period of time, then I learned that I could talk more with people beyond that.

Asher: Just taking the initiative and just like reaching out and be like, “Hi! My name is this…”.

Ash: Nine times outta ten, I think other people are afraid to take the initiative now. Just pinging back to the whole technology thing; we love technology, as long as it’s used responsibly. Technology is a good thing. But, it has also trained people not to be forthcoming, in person. Because, everyone’s staring at a laptop, or a screen, or got a phone in their hand, or this, that and the other. So, in-person communication skills are not what they used to be, and I realized that if I wanted to make friends, I needed to take the initiative.

Asher: I’m definitely guilty of that. Of having difficulty, as far as communication wise in person, it’s so much easier just to text people. You’re able to formulate what you wanna say without tripping over your own words and you’re able to delete stuff, you’re able to add things like later on down the line. But, yeah. I totally understand what you’re saying; reaching out and taking the initiative first to reach out to people.听

Ash: In person communication requires the ability to be vulnerable; and for those of us that are marginalized, for those of us that have PTSD, for those of us that are autistic, or with other disabilities, it can be very, very hard to have that vulnerability. So, hard!

Asher: It’s so hard!听

Ash: But, It can be fun!

Asher: Yeah, it can be fun once you like get over the jitters, get over the awkwardness of getting into a conversation, and really start rolling. Then probably, yeah, you would be able to have a very fun time and meeting new people and discovering stories and all that. It’s what I love.

Ash: Yeah, I mean. You helped me so much, Asher. Because, remember when we first met? I was kind of shy and I was nervous and didn’t know if I would fit in working at 抖阴福利导航. But, you and several others, that we all worked together, it’s made such a difference in my life. Like my job with 抖阴福利导航 has made such a difference in my life as a human being, as an activist, as an artist, as a musician, as a human. And, it came from the friendliness, and compassion, and acceptance that was shown to me by everybody in the AEDR office. So, hats off to you Asher! ‘Cause, you really helped me!

Asher: Aw! It’s okay! It’s what we at Let’s Talk! Podcast Collective do! We want to spread awareness and we also just wanna make it an inclusive environment for people of all backgrounds, and all nationalities, and all different disabilities. Last question, what can we do if we lose our community? Over the years, just with myself, I’ve gone through so many different communities and a lot of communities that I had to be like, “this is not helping me anymore”, and to step back and other communities that pretty much just “left me on read” or “ghosted”, if I were to put it in like a dating sense, if that makes sense?听

Ash: Yes. There’s a lot of different reasons why someone could lose their community. They might move, they might change schools, they might have had a falling out with someone in the community. There’s a lot of different ways people can lose community, and losing community can absolutely gut a human being. It’s a very hard thing to go through and I’ve been through it once before and it was devastating to me and it contributed a lot to my complex PTSD. It took time to heal from losing the community; working with the therapist, talking that through, becoming okay with myself and realizing that. What happened really wasn’t my fault. That the best thing I could have done for my own self was to just walk away, because my ideals didn’t match up with the ideals of the community that I was with at the time. So, there’s a grieving process, yes, and once you heal you come back to yourself and then you have the ability to go out and make new community. But, there is a grieving process there, and a healing process, and it is different for everyone. So, if you do lose your community, don’t be afraid to take the walk through the process to heal from what you just lost, so you can go make more friends and more community. Because, it’s really important to honor yourself in doing so.

Asher: Thank you so much for sharing that, Ash! That’s very, very encouraging and I totally agree with continuing to still just being open to finding new friends and finding another community even after if you lose your other community.听

Ash: Yeah, like when I used to drink and party, I had heaps of friends and this and that, and I had lot of friends here, friends there everywhere I went; friends, friends, friends. But, once I stopped drinking and I stopped getting high and doing the things that I was doing. Those people didn’t wanna be my friends anymore. That kind of made me sad because I certainly didn’t judge them for what they were doing. But, it was just a fork in the road for me. I had to heal from the fact that those folks couldn’t be in my life anymore and I couldn’t be in theirs. But, I had enough dignity and self-respect for myself to know that, I’m gonna allow myself to feel these feelings, which kind of suck, but then, on the other side, I’m going to continue on with my life and I’m gonna make new community wherever I go.

Asher: For sure.听

Closing Thoughts, How to Reach the Podcast, and Final Credits

Asher: And, for those of us, who are listening in, if you ever need community and you wanna reach out to us, go on and look for us on Let’s Talk Podcast collective or even reach out to us through the Panther Hub. Also, Let’s Talk! Podcast Collective. Thank you so much, Ash, for speaking to me on all these different topics and I’m sure we’ll look forward to our next episode together to talk about more topics. As far as, how to help others with disabilities during these trying times. Thank you so much!

Ash: Thank you so much for having me, Asher. It’s always a pleasure to come on the podcast and be a part of this community and I’ll have Asher post my public email at the bottom. So, if anyone wants to reach out, you can totally email me and I will respond. Thanks so much and have a great day, wherever you may be.

Asher: Thank you so much.

Asher: Thank you for listening to Let’s Talk 抖阴福利导航’s broadcast about disability culture. Find more information and resources concerning this episode and others at . This episode was produced by the Let’s Talk Podcast collective as a collaborative effort between students, the Assessable Education and Disability Resource Department, and the 抖阴福利导航 multimedia department.

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