Interview Date | June 2, 2020
JILL: Welcome to the DisTopia podcast, where we look at disability from the inside out. [peaceful music fades in] My name is Jill Vyn, and I’m the cohost of this podcast with my friend and colleague, Chris Smit.
What you are listening to now is the first of two interrelated components of our My Dearest Friends project, both of which have been generously underwritten by the Ford Foundation. The My Dearest Friends podcast, which is produced by DisTopia, is a series of recorded conversations with Disabled people about their individual experiences with the COVID-19 pandemic, and the personal, cultural, and political alterations it has triggered. These informal conversations give our guests the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions raised about the value of Disabled people, the core values of the disability culture, as well as our hopes, fears, and strategies for living an authentic and pride-filled Disabled life.
The second component of the My Dearest Friends project is created in partnership with Disabled artist Oaklee Thiele, who is creating black and white illustrations that represent our collective response to our new and uncertain realities as a Disabled community. Designed as an open invitation to the Disabled community around the world, we invite all of you to participate. More information can be found on Instagram @MyDearestFriendsProject, Facebook, and on our website, DisArtNow.org.
As is true for many of you, our desire for this project is to share our experiences as a Disabled community, to disrupt ableist beliefs, to celebrate a culture whose lived experience of disability necessitates flexibility and creativity, and to validate Disabled voices and perspectives in the midst of the COVID-19 pandemic.
[peaceful music slowly fades into chill, fun music break]
KIP: My name is Kip Henderson. I am 23 years old, and I am an artist with disability. I create comic books, and a lot of my art is centered around superheroes and magic and adventure. And I love storytelling and creating artwork that is going to let people have a sense of wonder or laugh or appreciate the beauty of the world around us. My disability has multiple facets that basically means that anything that can go wrong with my joints is going to go wrong. That means that my arms don’t extend. I’ve had dozens of surgeries on my feet and hips and knees and yeah, all the other joints you can think of, scoliosis in my back. I can walk. I am relatively independent.
When I was 22 months old, there was an operation occurring in which there was an accident, and the oxygen tube that was in my neck was in the wrong place. And so, when they moved the laser, my throat caught on fire. Meaning that for the next five years, I could not talk. And ever since I was little, I’ve worn a tracheostomy in order to supply an additional source of air to go in and help with my body. Currently, I cannot eat, and that was after the five years of not talking. And I’m very grateful to be able to talk right now. And about three years ago, I lost hearing in my right ear. We’re not quite sure why, but life is good at throwing adventures at you. So, that got added to the list of my disabilities!
I love learning, I love laughing, and I love just making art all the time.
JILL: When did you start giving your résumé of disabilities? When did you feel that that was important for you to do?
KIP: Man, I don’t remember it not being important for me to do.
JILL: Oh!
KIP: I remember in elementary school, my mom would come in, like the first day of class, and explain to the other students part of my disability. And after a while, that got old, and I just felt like I would rather not have my mom come in to school and set me apart from all the other kids. I can take care of this myself. Thanks, Mom! The other thing is like, especially as a kid, people are just so curious. And so, it’s like, “What’s that thing sticking out of your neck?” It’s like, “Oh! It’s a trach.” I love answering people’s questions. I love when people are blunt and to the point and ask what they’re wondering about in regards to my disability. I love making fun of people when they ask stupid questions like whether or not I have taste buds in my stomach that can taste the food going into my G-Tube. No, I cannot taste it…! Yeah, and so for as long as I can remember, I’ve always had to navigate people asking questions. And so, you can start formulating how best to go about that. I guess I wasn’t answering many questions when I couldn’t talk. I was mostly using sign language, and my parents were interpreting for me. So, it was probably after that, that I started taking responsibility and navigating people’s questions on my own.
A couple of months ago, I met this girl, and she was incredibly attractive, partly because I went on her website, and it was just engaging. And she was passionate about learning and passionate about creativity. And it just gave a really great impression. And then I went to my website, and I thought, I can do a better job with my introduction! And so, I just made sure that my introduction on my website was funny and engaging, and that really helped me refine the story and make it less about these are the facts about my life, and more about here’s a way to get to know me as a person and the type of writing and humor that I enjoy.
JILL: Well, it worked!
[chill, fun music break]
JILL: You’re in LA?
KIP: I am, yeah. I’m in LA, and we’ve been on a curfew for the past two days.
JILL: Yeah. I heard 8:00. Is it 8:00?
KIP: Last night it was 5:00 pm.
JILL: Oh, even earlier. Yes, I had read that it was like the first time in a very long time that that curfew has been.
KIP: Yeah.
JILL: What’s the situation been in LA?
KIP: I mean, pretty crazy downtown, but nothing where I am. I’m on the border of LA and Orange County. We haven’t seen any rioting, but certain parts of the freeway are closed.
JILL: Yeah. Well, I hope that this hour of time together is kind of a nice break and maybe a place to just process some things.
KIP: Something that I’ve noticed as well is that in this time period, there seems to be like multiple stages and multiple seasons, that everything just changes and keeps moving forward without a consistent response to the virus, for instance. Our bodies and our minds go through phases as we begin to try to process this thing.
JILL: Yeah, I agree. At least from our, my personal perspective and my family’s perspective, it’s actually the lack of consistency is a bit unnerving.
KIP: Yeah.
JILL: Because we’re trying to make decisions about what we’re gonna do or not do on a daily basis. There’s no planning ahead, which I understand. But it doesn’t help when you’re not sure who to trust and what other people are doing.
KIP: Yeah. My friend and I were talking about how something about the current situation that just depletes energy as we encounter something that we’ve never encountered before. And so, we’re operating at a limited capacity. And whereas we might’ve normally been able to give like 100% of our energy to a given day, now we’re giving like 30 or 40% of our energy towards a given day. And I’ve found that part of what’s been helpful with that is the fact that I’m doing less with everything going on. I’m not going out as much. I have more time to sit and process with myself. And I’ve actually been a bit intimidated by everything opening back up a bit, because it’s just another thing to put on my plate in terms of things I need to navigate.
As a person with hearing loss, navigating crowded and noisy environments can be potentially more exhausting for me than it is for other people, and so I need to make sure that I have enough to give myself to listening well to other people and making sure that I can hear and understand them. And so, as life begins to open back up, it’s something that I’m having to carefully navigate in terms of pacing myself and making sure that I’m giving myself grace as I move forward carefully, and don’t feel the need to attend everything as it resumes.
JILL: How much do you read lips?
KIP: I don’t read lips. I’m pretty good at hearing, but actually about 80% of what I hear is based on context. And so, I’m really good at listening and filling in the blanks of what I didn’t hear using context. Humor is often funny because it doesn’t fit the context of whatever we were talking about. And so, humor is sometimes difficult for me in a noisy environment because the funniest people are always so random, and sometimes it takes me a second to figure out what crazy thing they could’ve said this time.
JILL: Which is interesting, because as I was looking through your website, and I found your video that you created I don’t know how long ago, but it’s very clear that humor is integrated in everything you do.
KIP: Yes! Oh, man. I find humor is so valuable. My favorite interactions as a Disabled person are when people around me feel open enough to laugh with me and poke fun at my disability. So, this is really interesting. I’ve talked to other Disabled people, and for some people, there seems to be a lot of pain around people not allowing us to communicate our own needs. And so, for a lot of people, that’s people assuming that they are not as Disabled as they actually are. For somebody like myself, I’m very independent, and I have a lot more visual cues that a lot of people know that I am Disabled. And so, I constantly have to advocate that I am, in fact, more independent than other people would assume. And so, for me, humor is a really essential part of that, because if I can make fun of myself, then that lets other people know that they can relax their guard around me and that they don’t have to be on edge about whether or not I can emotionally handle a playful jest that they would engage in around their other friends.
It was especially grow true growing up, because as a child with a disability, you’re so much less independent in agency, and you’re not as established as somebody who can take care of themselves. And so, a lotta people can be really careful around you. And that just was really exhausting for me because I just wanted to be like all the other kids. And I would see them being pushed around, and I would see their friends— “Making fun of” has like a negative connotation, but there’s a certain level of laughing at somebody that shows that you really respect that they have the emotional capacity to be made fun of or to take a joke. And so, when somebody gives me the respect of making a joke about me, that’s really delightful. As quickly as I can, I wanna bridge that gap to letting other people know, hey, I am emotionally strong and competent and would delight in approaching my disability with humor and letting you know that you don’t have to walk on eggshells around me.
JILL: When you were talking about being a kid, we kinda like it when people pick on us because it means you’re part of the group! Like, pick on us in the fun way, right? In the, you’re part of the group.
KIP: Yes.
JILL: You get the inside jokes. You’re part of a community. I think humor and playfulness—I don’t know about for you, but for me—go hand in hand.
KIP: Oh, yeah.
JILL: Yeah.
KIP: I totally agree. I remember a turning point for me was in 5th grade. My friends and I were walking to school, and I had to sneeze. And I went to go sneeze, and my hand went— This is a vent or an HME unit that is a filter that I wear. If I hold it like this with my fingers around the vent just like that and I breathe out, [honking sound] it creates like a honking noise. And so, when I went to go sneeze, I discovered this like [honk]. And all of us just stopped. And in 5th grade, there’s nothing funnier than something that sounds like farting. And so, we all just froze, and there’s this moment of realization of like oh my gosh! What noise was that? Ever since then, it was like that became another tool in my toolbelt to quickly dispel any sort of compassion or pity that I wasn’t desiring in the moment right now, and I could quickly turn the conversation towards humor by pointing out that only I, with a trach, can make this silly honking noise.
JILL: Yeah. And I don’t know that you grew out of that, actually.
KIP: Oh, yeah!
JILL: [laughs]
KIP: Yeah, to this day, there’s few things funnier than the farting noise.
JILL: I know! Yeah, I thought we’d grow out of it, but we just don’t, you know? [laughs] So, it’s pretty funny.
[chill, fun music break]
JILL: It seems to me that there’s a lotta work that you, and maybe many Disabled people that we’ve talked to, they feel a sense of responsibility toward the other people in the room. Like, proving myself, dispelling pity. Your art and your humor is a bridge to the non-disabled or the maybe people who are in a different place of understanding. And I find that really interesting that it’s from you to other people creating that bridge. And I’m wondering if you could talk a little bit about that.
KIP: Yeah, that’s really perceptive and totally accurate. I remember starting my art in middle school, and people were like, “Oh, that’s cool.” And then I remember doing sketching more and more. And my sophomore year of high school, I was sitting next to this kid, and he was expressing a genuine interest in me because I had my sketchbook out, and I was drawing. It just hit me all at once that like oh my gosh, if I have my sketchbook out, people’s first impression is wow, what a talented individual. Instead of oh, this is a handicapped person that I need to interact with in a certain way. And so, that genuine interest because of my talent in art, because of that, I started just pouring more and more into my artwork. And I remember everywhere I would go, I would pull out my sketchbook and start drawing in a public situation, because especially at that age, to let people know oh, this guy is competent. This guy has talent. This guy is independent.
Often, I feel whenever I walk into a situation, especially as a kid, I’d always watch for people’s eye contact and see whether or not they thought I had mental capacity to be the person that they would interact with. Like at a hospital, does the nurse talk to me, or does the nurse talk to my mom? That kind of thing. Everywhere I go, it’s like, make eye contact, smile, let people know that there’s something working in here. Just ‘cause it’s really painful when people assume that your abilities are other than what they are, especially in my case, mentally. I remember going to Disneyland with a friend, and her and I were getting on a ride. And the cast member at the front of the line looked at her and said, “Oh, can you tell him to tie his shoes?” And I was just mad for the next half hour, you know! Just really frustrated that the interaction had gone that way. I just felt kind of insulted that the cast member had assumed that I was not capable of tying my own shoe or the assumption that it needed to be tied or anything that like, that they had treated my friend like my mom or something in that regard.
And so, you’re absolutely right that whenever I enter a space, I’m acutely aware of how other people see me. It’s a lot less of a problem as an adult because people can more readily pick up on the fact that I am, in fact, independent. So, there’s still traces of the problem, but I don’t wanna make it sound like it’s something that I face every single day on every single occasion. But it’s still true that I use my art, that I use my humor, that I look like I dressed myself, and I try to present myself in such a way that people know that they can interact with me as an equal.
JILL: There’s a couple things that pop out there. So, one, this emphasis on independence. But also what you’re talking about is this almost instantaneous assumption making that people have and that you’ve become acutely aware of when people are making certain assumptions, probably it sounds like within the first couple seconds of meeting someone. And that it’s very deficit-focused, those assumptions.
KIP: Yeah. So, I would say in my case, it’s very deficit-focused. But I’ve talked to other people with disabilities. And oftentimes, their disabilities are pushed aside as if they don’t matter, and they’re told, “You’re more able than what you are saying.” So, I have a friend who has invisible disability in that she’ll have chronic pain. And so, if she goes out, she might take a cane with her if she’s going to be walking for a long period of time. And her friends say like, “Why do you have a cane? You’re not Disabled.” And so, she has the opposite problem. It has to do with what’s visually presented. So, she’s a very beautiful person with no, like she doesn’t have a trach, she’s not limping or anything like I am. And so, it’s a lot harder for people to realize that she might need to be accommodated for. Whereas for other people, it’s very easy for them to realize that I might need to be accommodated for. It’s a different experience and not one that I realized was different until a few years ago in my life, when I was talking with her.
I think that, on the other hand, the fact that our brains can make rapid decisions like that is incredibly valuable and something that we need to recognize has real purpose and is incredible in getting us out of danger and providing quick reflexes. But because that’s so important to, especially when we, as a creature, needed to survive with fast reflexes in terms of is this approaching person dangerous, yes or no? How do I react quickly? That was so essential for us. But now, it’s working against us because so often, if a person of color is walking towards me, and my instant reaction is danger, then that’s incredibly damaging to society and to a relationship. We can’t really control that first thought that occurs to us, but what we can control is that second thought. And so, if somebody approaches me, and the first thought is oh, I need to make sure that he’s accommodated for and that I don’t insult him or anything like that. And then their second thought is, wait. Let me ask him. Let me let him set the pace for our relationship. Or let me let him express to me what he can and can’t do and give him that responsibility. That second thought is what ultimately defines a person.
And I think that we need to give ourselves grace for the first thought, because that’s something valuable and something that we can’t control and something that ultimately needs to be worked on, especially as it regards race. Because that first reaction can be incredibly important to a situation where somebody’s life or well-being is on the line, and that quick reaction can be devastating at times. I don’t know how to go about, as quick as we can, get to that second thought that really defines a person.
JILL: I’m wondering if it’s through relationship building.
KIP: Yes.
JILL: Until we have more and more and more of those interactions and conversations and listening, I think that first thought will be a reflection of all the inputs we’ve had since we’ve been born. It just seems like we just have to get to know people differently.
KIP: Yeah. I found that one really helpful practice for listening is, when you’re listening, don’t try to assume that you know everything. And so, when you’re listening, you go on, and you attentively pick out things that interest you and things that you want to know more about. And you keep asking questions. And then the other thing is I have a friend who, whenever he’s listening, if he ever has come to any sort of conclusion from what he’s listening to, he phrases it, “I wonder if this is true.” And then that gives you an opportunity to respond to that. And that’s something that I really admire in him, is his ability to listen.
And that’s something that I really wanna carry into my relationships, is using that “I wonder” phrase as a way to, instead of saying like, “Oh, it must be like this,” that you pose it as like a hypothetical. Like you’re contributing something that could be refined, and it opens it up for more conversation and lets the other people check in and be like, “Oh. That is accurate. That is what I was trying to say.” Or they can say, “Actually, that’s not at all what I was trying to say, and let me kindly offer you a refinement or a clarification on what I was going to say.” And that doesn’t just apply to breaking down biases or prejudices when it comes to disability or race or anything. That’s just, I found that to be helpful in friendships and in relationships and communing with other humans.
JILL: Yeah. I think that is a really good tip.
[chill, fun music break]
JILL: There’s a couple things also: your connection to your faith seems to be very strong. And then it was interesting on your Instagram, recent post, you have the image of the box with “Jesus!” on the side with an exclamation mark, and then you have a mattress. And then you’re—I assume it’s you—pushing really hard against it. And it says, “I’ve always struggled to fit my story into that box.” And so, I’m wondering, is there conflict between your convictions and the experiences, like the actual experiences you’ve had in the church?
KIP: Yeah! My faith is incredibly important to me. Yeah, thank you for asking. My brain works in storytelling. I think about how the things that I say have a beginning, a middle, an end, and I’m always thinking about how the things that I say can go from a place of chaos or pain or dysfunction. And then the way a compelling story works is that let’s draw into redemption and unity and order. That’s just how good stories work. And so, what’s really tempting is to tell soft lies about your experience because you know that they make good stories. And so, for years, I just assumed that the good story that I had to tell was how my life went from pain and disorder as in regard to my handicap and surgeries into the chaos that was my early childhood and how the redemption was dependent on God in the midst of pain. And that’s a really good story to tell. If it was true.
But what I’ve found is that a lot of pain comes from a change in circumstance. And so, as somebody that has had a disability my entire life, there’s a lot less pain in my life regarding disability as there is somebody, like, I have a friend who has a degenerative muscle disease that was onset later in life. And so, she is losing things and losing functions each month. And that’s just heartbreaking and incredibly painful. Whereas for me, I’ve had a baseline of like, of course it would be incredibly painful to lose the ability to eat, but as of right now, you can see that that’s how I eat. That’s the bag that hangs. And I love being able to plug in and keep working! It’s just incredibly efficient, and it’s not painful to me, you know? ‘Cause I’ve adjusted. I have a lifestyle that revolves around that. And so, it took me a long time to realize that the story that I have to tell is not necessarily one that revolves around my disability. A part of that is in my life. It’s tempting to tell that story because I know that it’s a good story. I know that I can use it, and when I tell that story, people will say like, “Wow! That’s so amazing what God has done in your life.” And part of that feels good, and you’re like, yes! I told a good story. And I won over this 60-year-old woman who’s been praying for me my entire life.
JILL: But that’s the story that they expect to hear.
KIP: Right! Exactly.
JILL: This overcoming, God has been a savior story.
KIP: Right. Yeah. And so, it just took me a long time. And on top of that, it was just really painful, this dissonance of because I was so good at telling that story, people assumed that my relationship with God was thriving and 100% perfect because people around me and myself included were telling that story so effectively. Whereas in reality, there was just a time in my life where I just felt a lot of pain because of different addictions in my life that I felt like I wasn’t achieving progress in. And that dissonance between where I thought I should be and where I actually was in terms of my ability to control myself was just really painful and really hard to navigate where I thought I should be in terms of my relationship with God and where I felt I actually was.
The way that the pain resolved was I had to realize I have to stop telling the disability story in such a way that it’s not true. Because while it is very true that certain times of pain were spiritually enriching for me, like recovering from surgery, that wasn’t over the threat of my life overall. And so, I had to stop telling that story, and I had to realize that so much pain in life comes from being inconsistent with your values. So much pain. And so, I was inconsistent with my values, which are not the same as everybody else’s values. So, for me, my values, I’d prefer not to engage in something like pornography. And so, as long as I am living inconsistently with my values, that’s going to cause just a lot of pain. And so, for me, realizing that my first priority above relationships, above my reputation, above my job was living consistently with my values. And for me, that was my Christian faith and my relationship with God. And so, being able to reprioritize and put that first.
I had a habit of punishing myself or being down on myself when I would fail to live within my value structure. And realizing that the way people change is not through punishment. People change because of the relentless curiosity. If I approach everything with curiosity. Like if I said, “OK, why did I act out in this way?” If I continually give myself kindness in terms of curiosity and the same with other people. If somebody does something that I’m not happy about, instead of saying, “You shouldn’t do that,” I need to say, “Please help me understand what’s going on.” And that’s like what we talked about earlier. It’s like using that “I wonder” phrase, using open listening and not making judgments. I think just curiosity is such a valuable virtue that we can implement with others and towards ourselves.
For me, the way I realized that was through reading my Bible and delving more deeply into my Christian faith and realizing that Christ implemented curiosity and kindness when he would approach other people. And so, that’s something that I need to approach with myself in giving myself kindness and curiosity as I navigate pursuing change in ways that I want to change myself. And I know how to tell a good story, but that doesn’t mean that it’s always the true story. And so, holding myself accountable. And oftentimes, once you get to the true story, that’s when you realize, oh! It’s not over yet. The story doesn’t have a good end because I’m in the process. If I told a story, and it hits the bottom and it doesn’t come back up, that’s OK. That means that I have room to grow and more story to be told.
JILL: Which sounds so much about how you do art. You said you don’t have it all figured out before you start drawing.
KIP: Yes.
JILL: It’s a process for you. And to me, when you’re talking now, it’s like it’s very consistent with how you’ve processed life through your art. It just feels enlightening, like you’ve had this enlightened moment and that vulnerability is what people were commenting on your post, your Instagram post, is that there seems to be strength in your vulnerability and your authenticity.
KIP: Yeah. Yeah. That was really eye-opening for me. Like I said, I’d told stories before regarding my handicap. People would say like, “Wow, that’s so encouraging. I’m so inspired. I’m really proud of you.” And I would sit there and think like, I feel uncomfortable. Why do you think that— Because to me, my disability is something that is just life, and it’s not necessarily something that I feel I should be praised for. Because I just, like everybody, got dumped into some sort of situation. And just because my situation is more visible doesn’t mean that it’s any less powerful than anybody else’s situation and how they’ve been able to cope with that. And so, I didn’t feel that I necessarily merited any sort of recognition.
But within that post and within those comments, I began to realize that this is something different. This is something that I am potentially proud of and a story that I do want to tell and recognition that I can receive because it’s not longer a story that I’m fabricating in order to give people what they want to hear. This is something that was genuinely painful for me. Overcoming addiction was genuinely painful. And I’m incredibly thankful for, I don’t know, something about the way that I approached that situation, that’s something that I want to celebrate in a way that I didn’t necessarily want to celebrate success around my disability.
JILL: Yeah. It feels like it’s moved you into the world where disability pride and disability community and as a advocate and as someone who people can connect with. Because it was your story versus more of the collective story.
KIP: Yeah.
[chill, fun music break]
KIP: Yeah. Part of what you said made me think of earlier life experiences in which I was actually really opposed to associating within disability circles. As a kid, I would be pulled aside to go to the Special Ed class once a week, and I did not connect with those kids at all and felt really embarrassed that I had to leave my friends within the classroom and go be off in my own special circle for a period of time. And that grew in me a real desire to distance myself from other people with disability. And that took a long time to unlearn and to realize that I am, in fact, Disabled, and that’s not something that I need to be ashamed of. And I can actually take joy and pride in associating with other people with disability.
And so, the trip in which I met Oaklee over in Washington D.C. was eye-opening. I loved meeting all of those people and being able to connect with this vibrant community, and everyone was so different. And there were other people who were independent and other people who were dependent in certain ways. And everyone had to be compensated in some way, and that was not at all a source of shame. Or a story that needed to be told on their behalf. Nobody came up to me and asked, “Hey, just so you know, I’m here for you and can do anything you want.” It was everybody’s unique responsibility to make sure that if they needed needs addressed, they approached the coordinators themselves and verbalized those needs. Which was just something that I’d never experienced before in my life in the same way: that nobody came up to me and singled me out. They gave me the space to say, “Hey, I need a chair during the art exhibit because I can only stand for 20 minutes at a time,” that sort of thing.
JILL: It gives you a opportunity to have more personal agency.
KIP: Yeah. Giving myself the opportunity to grow and to be comfortable in that environment was so valuable, because I’d never been given the chance to be comfortable in that environment. Like, for so long, my life had been striving to be perceived as normal, and so I just relentlessly tried to push down any sort of disability association without realizing what I was missing out on.
JILL: Wow. It sounds like that experience when you met Oaklee with the VSA, that that was kind of a coming out moment for her as well. I’d love to hear what’s drawn you to the My Dearest Friends project that she’s a significant part of, obviously.
KIP: Yeah! I mean, her urgency to be her is just really admirable. I’ve loved following her on Instagram. I’ve loved seeing how much joy Coco, her dog, has brought her and opening my eyes to how important dogs like that are and how important it is for me to not approach those dogs while they’re on the job.
And I have a real hard time bringing the conversation towards something heartfelt and serious because for so long my life has been people approach my disability with a real seriousness that I don’t always appreciate. And so, for me, My Dearest Friends is the opposite side of the spectrum, where some things really do need to be taken seriously. And that’s an area that I need to grow in, because whenever something becomes too serious, I think, I would rather not involve myself! Both in areas of disability, like being compensated for different areas of disability, and for areas of race and racism. It all gets so serious so quickly, I quickly think, I would rather not contribute to this conversation. But silence is deadly, and that attitude can be really destructive at times. So, that’s something that I’m hoping to grow in.
JILL: I have a shirt that, “Adventure happens at the end of your comfort zone.”
KIP: Yeah.
JILL: And sometimes we have to remember the growth happens at the end of our comfort zone when we go into the unknown, and we begin to explore what our own biases are or why do we think this way? Where’s this coming from? Naturally, my brain connects that to media, which then, you studied film in college as well. And I’m wondering how much the experiences of studying film and media shapes, in your mind, who we are.
KIP: I loved so many things that you said just then. I think you’re absolutely right that adventure happens at the end of your comfort zone. And I think that good stories are the ones that display that most accurately. One concept that I’m absolutely fascinated with is this idea of the leap of faith. I’ve written about it some. But it’s this idea that the way forward is to jump, is to jump precisely into what you’re most afraid of. And we see that in all great movies, is that the hero realizes that they would rather die or risk death than stay within the status quo. And so, whatever they hold dear—and usually that’s life itself—must be sacrificed at the altar of change. And so, they leap. Like, in Spiderman’s case, Spiderman realizes I have this fear, I’m physically stuck, and the only way forward is to jump off a building and trust that it’s going to be OK. And I would rather leap off a building than stay stuck where I am right now. And so, the hero leaps. And ultimately, that’s when true change happens, and they achieve like a baptism or a transformation into the new self.
And we see that echoed throughout stories and throughout Christianity, where there’s a real sense of dying to yourself before you can be reborn. And so, that’s something that we just have to do every day, is that whatever we’re not comfortable with is precisely what we need to step into. And whatever we most desire to change is what we most need to be willing to die.
So, in terms of media and how that’s affected me, studying storytelling has been so rewarding, because good stories tell you how to navigate life. If you’re watching the right movies, if you’re reading the right books, that’s going to make us better individuals because we’re going to reenact what we see the heroes in those stories do and become heroes in our own lives and be able to spread order and beauty into the lives of those people around us, oftentimes starting with our families and then spreading out from there.
[chill, fun music break]
JILL: You have so much wisdom to share. I’m just soaking it up. This podcast is initiated because of the COVID-19 pandemic, so I’m curious how things have been different for you, I mean, how your life has been different, how you’re thinking about this. Wonder if we could focus just a little bit on COVID specifically.
KIP: From first glance, it would seem that my life has not changed dramatically because of COVID. One experience that I’ve found seems to be new to me is that so much of my relationship with the outside world can be shipped to my door in a way that a lot of other people can’t do. So, for example, that is how I eat, this milk bag. This goes straight to my stomach. I enjoy food. I can’t swallow it, so if I eat it, it’s just purely for enjoyment where I eat and then spit it back out. But it’s not a necessary routine for me. And so, I don’t feel the need to go out to eat all the time, and I don’t feel the need to go to the store and buy food. And so, it was like a week ago I went to the store for the first time with a friend to pick up some stuff that he had to get. And I was just like, oh my gosh! Everyone is outside wearing masks and people having to line up to go outside of stores. And everybody else has known this for like two months or something like that. But I’ve just been holed away in my house because I haven’t had a real need to go outside. And so, it’s just been bizarre to like, my main experience with COVID is a, I can’t go, I couldn’t go into my job for a long time and was working from home, and I really missed my work friends there. And then several of my art classes that I was taking were online. Yeah, it’s been different for me because I don’t have to interact with the outside world so much.
The thought of going back to interacting with the outside world, as much as I miss my church and everything revolving around it, it is going to take some time for me to have the mental capacity to resume some of those things. I’m very much an introvert, and I really enjoy one-on-one interactions. But as soon as experience is outside of that, it’s hard for me to be heard because of my voice, and it’s hard for me to hear in noisy environments. And so, those things can get exhausting pretty quickly. And for the most part, that’s something that I can handle. As I resume entering those spaces like church, I need to work myself back up to it. Because it’s just a habit that I’ve gotten out of, and it’s just gonna be I need to make sure that I’m not balancing other things in my life that are new and crazy when I begin to reenter those spheres of interacting.
The other thing that COVID has done is before, I used to always go out to the Natural History Museum or the aquarium to go draw. That was my outing that I would go to about every week. And so, without those activities and without going out and visiting with friends, I’ve had a lot more time to myself. And so, that’s meant that I can really work through and process different things that’ve been painful for me in the last year and just really take time to sit and document and process those things. For me, COVID has been somewhat exhausting for those reasons, because processing takes work. And the things that I had to process, because my brain didn’t have new, exciting experiences to draw on, it was going back through old experiences that hadn’t been fully addressed yet. But it hasn’t been the amount of chaos that it’s been for some other people.
JILL: Yeah. Like you said, it takes energy to be in the social world. Can you imagine a world where you don’t have to gear up to participate in it? Where church or the places that you really want to go are created with you in mind, or other people who have different needs or experiences? I mean, all of us experience life differently, and I don’t know, where it’s just different, and that we take some learning from this. Because there’s a lot of people who are able to take a breath and maintain energy in a way that they weren’t before. So, I’m curious if you can imagine a world where you’re accounted for differently.
KIP: Yeah. That’s something that I don’t feel like I have all the answers to yet. I think that a lot of suffering needs to be dealt with on an individual basis in terms of instead of advocating for the system to change, perhaps people need to take a look at their life and change first. So, that sort of philosophy would say that a lot of the responsibility lies in the individual rather than society as a whole to rework itself so that the individuals are accounted for. But on the other hand, a person is disabled only to the extent that they’re not accounted for within society. Because nobody views vision impairment as a disability because they can just wear glasses, you know? And so, that seems to be 100% accounted for in terms of like, we don’t need to accommodate to an incredible degree to accommodate people with glasses. Whereas people with wheelchairs really do need ramps and elevators within—
I mean, that’s just something that I don’t have the answer for yet in terms of how could I be accommodated for, and what would that look like? My first thought is I’m responsible for putting myself in situations that I can cope with and that my disability, to some extent, is my responsibility in terms of I can enter situations and I can make certain petitions and I can navigate spaces and exit spaces as I need to, to navigate my disability. But that doesn’t mean that people’s awareness and people’s accommodation wouldn’t improve my life. But in my experience, my focus is more on not being treated as other. It’s really exhausting for me when I know that other people are making mental adjustments on my behalf, and so if I was to tell somebody, “Hey, I don’t appreciate being referred to as someone with special needs. I prefer the term ‘disability’,” that’s something that I’m not going to enter into lightly. Because while I do prefer the term “disability” as opposed to “special needs,” I don’t like the word “cripple,” and I don’t think “special needs” accurately describes my condition, I think the words “disability” and “handicap” are, in my mind, perfectly acceptable to use within my case. And so, if I express that to somebody, now they’re going to be careful to only use the words “disability” or “handicap” around me. And that’s going to be something that they have to navigate on my behalf.
Whereas what I really want is for a close friend to jokingly call me a “a cripple” because they know that it’s the opposite of what I want, and they’re just hoping to get a rise out of me. So, what I really want is for people to feel like they can joke around with me. And so, as soon as I introduce the topic of accommodating for me, now they’re going to be careful around me. And that’s not something that I want. Like, when people compliment me, I say, “Thank you.” And then if one of my friends compliments me, if it’s something that I want to be close with, and they compliment me, I’m quick to say like, “Oh, yeah. I am pretty great, aren’t I?” Because now they’re not going to put me on a pedestal, because they realize oh, I’m just inflating his ego, or he doesn’t need to be complimented. It increases the odds that they’re going to jokingly insult me later if I say like, “Oh, yeah, I am pretty great, aren’t I,” when they compliment me.
And so, my philosophy is, I personally want to take responsibility for both advocating for myself when I do need things to be adjusted, and I want to take responsibility for alleviating suffering in my own life in terms of not entering situations that I know are going to make me suffer or make me uncomfortable. And so, I’m trying to navigate where the line is in that. Because society does need to change, but I think change starts with each person assessing themselves as an individual rather than pointing the finger at society first.
JILL: You are consistently a bridge builder. It seems like that’s what your art and what you as a person work to do, is being a bridge builder. And honestly, I just think you wanna be the butt of every joke, and then you know you’re in.
KIP: Yep! Precisely!
BOTH: [laugh]
[chill, fun music plays through the next few lines]
JILL: So, that’s cool! But yeah, but you’re talking about cultural change. You’re talking about when you went to VSA, you could take a breath, right?
KIP: Yeah.
JILL: And that’s cultural change.
KIP: Yeah.
JILL: Which is also systemic change. It’s hard work. It’s intangible change.
KIP: Yeah.
JILL: Yeah. Wow.
Kip, I really appreciate your time, so thank you for everything.
KIP: Yeah, thank you so much!
JILL: Thanks for listening. Be well, keep your distance, send us your comments, questions, and your submissions for Oaklee Thiele to hello@DisArtNow.org. Please make sure to follow the My Dearest Friends project on Instagram, Facebook, and DisArtNow.org. And thanks again to the Ford Foundation for their support of this work and to cat enthusiast Cheryl Green for the transcription of this podcast episode.