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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 ¶¶Òõ¸£Àûµ¼º½ 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 ¶¶Òõ¸£Àûµ¼º½, ¶¶Òõ¸£Àûµ¼º½ Foundation, or our community partners. We broadcast on our home website, , on Spotify, on , 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– I would say– 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– I would say– 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 — 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? 

Caleb: I think one of the surprises for me is that Ironic. I think given  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– 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.Ìý

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 – 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 – And keep in mind, this is their wedding anniversary night, right? They’re dressed nice– 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– 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– 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.Ìý

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.Ìý

Episode Outro Disclaimer

Kylo: Thank you for listening to Let’s Talk!, ¶¶Òõ¸£Àûµ¼º½’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 ¶¶Òõ¸£Àûµ¼º½ Multimedia Department. We air new episodes on our , our Spotify channel, , and .Ìý