Podcast

Interview Date | April 23, 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 gentle ambient music]

CHRIS: “My Dearest Friends, these days I have to admit sometimes of feeling pointed out in the crowd. It’s these people! See those people? We need to make sure we don’t get them sick. That’s why we have to do all this. You know, that kind of attitude, which I’ve not yet experienced in any kind of straightforward way. But it does play on my mind to hear Governor Cuomo hollering, “95% of us are going to do fine with this if we get it.” Is that even true? Nevertheless, I finally have a care attendant, but only because she did not have to go back to school and wanted the hours and has been so wonderfully willing to identify herself, although being rather young, as an essential piece of the community puzzle fighting pandemic. You see, she understands that if she didn’t come to work to care for me, I would be utterly without help, and my wife would need to stay home and likely lose her job. And what is her job? She manages all of the care coordination at our community hospital. Her work has been incredibly demanding, navigating this crisis as it unfolds by innovating scads of new and vital pathways of care for dangerously ill people. No care attendant, no manager? Who knows what chaos. But instead, my care attendant shows up every day ready to do her part, keeping me safe and the house immaculate with a determined spirit and exemplary kindness. All of my friends who are disabled should experience this kind of friendship, commitment, and grace. This is my only and everyday prayer for my dearest friends. And we will get through this, surely. Randy.”

RANDY: Yeah. My name’s Randy Smit. These are words I shared, though, with DisArt some time ago. I am a pastor with a Reformed Church in America and heading toward retirement age, as I am 52 years old with SMA. And live here in West Michigan in Holland with my wife, who you know now is a care manager at our local hospital. And so, yeah, it’s been different for everyone I know. It’s been an unprecedented time in our shared life together as people on the Earth. But we’re finding out here how we’re all gonna do with this. And so, yeah, to reflect a little bit on the pandemic and COVID as it relates to my daily life, it’s certainly raising lots of questions.

But as pastor, I’ll share a little bit of my sense of thanks to start out with that. I’ll say this. I’m an experiential learner. I learn by living. And so, at some point in my life, I was happy to be kind of led or guided into seeing life as kind of a process, a dynamic process, which inevitably means change. Yeah. So, in my own vocational life, I went into ministry work. And as I say, I live a little bit, I see what my circumstances confront me with, and try to respond, make some sense of it, have some understanding of how the world works. So, I just keep doing that! And in my own background, my own tradition, for me, that’s meant growing up in the sort of Christian tradition in the West and yeah, just having a sense that we are, by the mere fact of being alive, we are interconnected. And that we’re interdependent beings. That means you need me, and I need you. And that’s how the world is sort of held together. That comes from some ideas about God. I mean, God, I understand that within God’s own identity, there’s kind of a community. There are parts of God.

So, some of us talk about this old thing called the Trinity. And I don’t mean to be too provincial or whatever to have you all have to understand my religion. No, I’m just trying to express to you that for me, I come from a Trinitarian background, which means we talk about God the Creator, God the Spirit, God the Christ. So, that’s one way to put that. And people know about that a little bit, so that’s not too strange to folks. But even in that, that helps me to understand that as far as my own views and the views of the tradition are concerned, that when God creates the world, at the very creation, we’ve got some sort of strategy that the three of them came up with to share their life and to enjoy that more fully. So, that’s the start of it for me and the finish, right? That the start is the finish. God creates and offers this tremendously weighty and wondrous thing called human freedom.

And human freedom is, for me, one of the greatest mysteries to ever look into. So, we’re free. “Thanks be to God,” we say. And we’re free, and doggone it, why did you make us that way? Because you know where I might be going with this. We’re free to share. We’re free to look to each other and connect and support and recognize the ways we are interdependent, interdependently woven together by need and gift or blessing. But we’re free to pass! We’re free to pass. So, anyway.

CHRIS: I wanna talk a little bit more, because that’s resonating with me quite a bit. And I think one of the things that we had been hearing from other respondents, other interviews, and other things that we’re reading and talking about and writing about that some are choosing, it seems, to be a present and feel other people and their experience, and some aren’t. And so, I’m curious about where you’re seeing that, but also, what does it mean when we pass?

RANDY: Yeah. Let’s go back to the statement, the statement I shared originally that you read. And thank you again for reading that. I don’t think it’s in anybody’s mind overtly that, “Boy, if it weren’t for these disabled folks, we wouldn’t have to be doing any of this.” Or, “What are we doing? Saving a couple elderly people?” I’m being really crass, right? I haven’t had any of that kinda attitude, and nobody says that. It’s just, but it still has significance for me that there’s this felt sense of being pointed out, a felt sense in me, that there are some who are pretty angry right now that they’ve gotta disrupt, profoundly disrupt their livelihood and etc., family life to an extent that they don’t find rational. I think the real struggle there is just to keep looking into that divide or that kind of disagreement about how careful is sufficient and how careful isn’t. Right now we’re talking about how long quarantines ought to be going, right? That’s the great argument going on right now.

But, you know, we want people to be aware. And then there’s always this question, right? Like, is a person who’s not aware or not as aware of how going out and about right now, they might not be as aware of how dangerous that would be. And in which case, it’s a bit of an education challenge, maybe. But the other part of that is—and you can kind of feel this, too—more to the point is, yeah, you know, I’m not responsible for what I’m not aware of. Therefore, I’m just kinda gonna live my American, little independent bubble, you know, little consumer, individualistic kind of identity out there. I do what I want, and that’s what it means to be American. And I’ll take care of mine, and you take care of yours.

I mean, what we’re seeing right now, kind of a anti-globalization movement, where when things get tough, nations pull back, religious groups pull back, and defend. But to stay with that point of feeling pointed out a little bit. But again, it’s not overt. And some people would make that argument, say, “Oh, we’re not intending to say that elderly people aren’t important or folks who are disabled or, you know, folks who are more vulnerable. It’s not about them. It’s about me.” In which case, I might say, “Yeah, but do you really understand the science? Do you understand how bad this could be?” And I think we’re still finding that out too.

[gentle ambient music break]

JILL: And so, we were talking about how do you get a whole society, a whole world to be tuned in when it’s not being talked about overtly in the news? I had received an email yesterday in reference to “the oppressors.” And I’m like, oh, no! What are you saying? This is to a whole group of people. You are so far amiss to what’s really happening for the minority experience. I don’t think that everybody reads it the same way that I do. [chuckles]

RANDY: Are you talking about like liberate Michigan from the oppressors, right? The oppressor isn’t me, right? They’re really not thinking about me. They’re not thinking about people like me. They’re thinking about limit. My sense is that the scope of their concern just isn’t as broad and that their life experiences, for various reasons, haven’t brought them to that, I’ll use the word “awakening,” which is pretty loaded. But at some point, you awaken to the world beyond your family, beyond your own, or you don’t. And really, history, broadly speaking, some human beings are just not living in the same world, right? And so, it’s about consciousness and awareness and so on. I’m trying not to get swallowed up in too much of the vitriol, ‘cause I can get pretty upset and shake my fists. Or I’ll find a care attendant to help me shake my fists, you know? [laughs] “Can you shake my fist?” I still wanna try to stay open to hearing what at least, as I started off, I’ve learned experientially, right? My theological kinda top 10 most important things theologically, that’s changed over my last 20, 30 years.

So, yeah, maybe it’s got something to do with offering. And you guys are doing a great job with this, offering people a window, something to look into, some way to witness this broader life experience that includes everybody without ripping some people off or gypping people of their freedom. How about that? You know, they want their freedom!

JILL: Yeah.

RANDY: Let’s not pretend. How can you have your freedom, and we care for everybody? Let’s go!

JILL: So, here’s another one, Randy. [chuckles] So, Chris, then this morning points out, “Did you see this Facebook post from one of our friends,” who posted what appears to be a woman who has a face covering, and she’s holding a sign that says. “Sacrifice the weak. Reopen Tennessee.” OK. So! Here is contrast.

RANDY: That’s different than where I was just speaking of.

JILL: Yes, it is!

RANDY: And wow. Let me just have a minute with that. Let’s just share that. Share it with the world, and let everyone say, “Who’s on board? Who’s on board with that?!” Oof.

CHRIS: I mean, it’s unfathomable to me, unfathomable to think that there are more than one person that believes that. But yet, the sign is there, and by association, the hundreds of people that are surrounding that sign, in my mind, create an association of meaning. I mean, personally, you know, you say you try to stay away from being angry or whatever. I end up rolling right into that anger. I wanna push on that anger thing because, for the listeners who haven’t realized yet, you and me are brothers, and we share the same name. We share the same parents, obviously, and share—

RANDY: They’ve probably lost track of who’s talking at this point.

CHRIS: Yeah.

RANDY: Is this Randy? Is this Chris?

CHRIS: [chuckles] Right. But I want us to unearth that fact, because you and I have had conversations in which I express an anger or a frustration that’s a little different than yours. And I think that that’s been a really great way for you and I to process with each other about what these things feel like. So, when I think about COVID-19 and I think of the urgency of it, I do think of that woman with the sign, right? I don’t go immediately where you, and I think where Jill goes sometimes, too, which is to find that commonness, to find that common human experience and let that guide my action, right? I wonder if you might talk a little bit more about that and help us explore that a bit, the difference between feeling anger or urgency and then empathy. And how those two can work together and how maybe they don’t.

RANDY: Just in terms of my own experiences— And that’s not to pit them at odds with each other. Certainly anger, fear, disgust, plenty of that in the face of these kinds of unconscionable ways of seeing other human beings. It’s painful. It’s eye-opening. And then at some point, if it’s not quite that pointed, if it’s more of a sense of lack of awareness, I wanna be hopeful. Hopeful that we might stay in conversation on an ongoing basis as a culture, as a community so that people’s viewpoints can broaden through more and more experiences. So, I don’t know. I can’t begin to peer into what sorta life or what sort of lifestyle or what core experiences could lead somebody to that kinda ugliness. And sadly, it’s been part of the human dynamic since the beginning.

JILL: Some people are better than others at seeing all sides of the glass. And it seems like you’re someone who takes the time to do that. So, I do hope that you continue to write and share, and we can find ways to put it out in the world as what you’re saying, that education and lack of awareness. Can we move people from where they’re at through conversation and engagement?

RANDY: Yes. Without them feeling as though it’s a threat to something really vital to them, like taking care of their family or having a job, you know. Those are real things. And it’s just a crazy time. And frankly, our media, our media right now, there are only a few places I trust to get news. And I even feel kind of manipulated crisis gets people to tune in. The more combat, the more conflict, the more crisis they can bring, I mean, cultural divide is good for ratings. Yeah. And you add a pandemic to that, man.

RANDY: It’s a whole other world we’re in now, it seems.

CHRIS: Yeah.

RANDY: We watched almost two hours of news last night.

CHRIS: Oh! That’s rough.

RANDY: I know! And then we were like, “What are we doing?”

CHRIS: [laughs]

RANDY: So, I’m like, day by day, there’s so much to find out, such a dynamic experience for everyone.

CHRIS: What were you watching?

RANDY: Well, just some of the more in-depth. On PBS news, we had a couple interviews with some WHO people.

CHRIS: Yeah, yeah, yeah.

RANDY: I kinda like the in-depth, get some of my questions answered. So, those types of news programs are preferable.

CHRIS: Mmhmm. I listen in the morning, and that’s probably the worst time to listen.

RANDY: [chuckles] You don’t wanna end your day with it either.

JILL: [laughs]

CHRIS: No, exactly! [laughs]

RANDY: Yeah!

[gentle ambient music break]

One part I would probably wanna put in here that would be meaningful to me is to go to the end of those words I was sharing around experiences of care. And we’ve also talked about Crip Camp a bit and how that shows people, gives them a whole new look at living with disability and things like that. But when I say I would want for every one of my disabled friends to have a care attendant like the one I have now, I mean, that. And [long pause] um…yeah, some emotion, some emotion right there for me…. It’s not good enough for some of us to prosper while others are not, while others are struggling. And as I draw nearer to disability conversations and studies and so on, which I’ve kind of not been part of up until about the last couple years, I guess what’s been, what’s always been part of that dynamic is that we are a community. We understand each other to a certain extent. And even there, there can be disparities. For me, I can’t carry this as a burden.

Am I grateful to finally have good care and a person I can get to know, somebody who’s going to be present in a way that helps me to flourish and them? It’s a rare thing. I’ve known it, Christopher, you’ve known it, and we know when it goes away. I know when it goes away, when you don’t have the help that you need. And some of the toughest times are when some of us are doing quite well, and then a few of our friends are not! That doesn’t feel like a victory to me. So, all that to say, though, we’ve got a world, I think, in which these relationships of care can work and continue to work. I think we live in a world that inevitably is headed toward more and more awareness of our interdependence as people, the fragility of being human, the vulnerability that all of us carry. People have to kind of experience how interdependence can, or acknowledging their interdependence can lead to deeper ways of living more fully.

CHRIS: The element that I really want other people to hear about is the fact that when care is good, what that feels like, but when care is bad, what that feels like as well. You’re highlighting something that I think is really important: that you and I have this odd reality that often, when you have great caregivers, I am struggling. [laughs]

RANDY: Yeah, right!

CHRIS: Right? And when I have good caregivers, you’re struggling. I have one caregiver, as you do, during this COVID time. And my caregiver called last weekend, got a cold, felt pretty crummy, called the CDC. They gave her a test. We had 48 hours where we were like freaking out that maybe she was gonna be sick. She got her test back. She’s not sick. She doesn’t have COVID. But she’s been gone now for six mornings, you know. And it’s hard. It is hard. It’s also a game of knowing how much to share with people too, right, and knowing how much to…well—

RANDY: I’d like to know more about that.

CHRIS: Yeah, yeah, yeah! For sure.

RANDY: What do you mean? What do you mean?

CHRIS: I can get up and have my life here and struggle with caregiving, but then when I get on Zoom or when I’m at work, I can put on the happy face and whatever. And in reality, a lot of us hide a lot of, you know, a lot of frustration. Yeah.

RANDY: And that what I’m hearing then would be this pressure, which I’m familiar with. I know exactly what you’re talking about. Some kind of a dis-integrating pressure to have to live in the reality of what it actually is to be me at this moment and the perceived kind of professional or public—but we can go through all kinds of different ways of speaking of it—but the sort of official you or something, or the workplace you. And maybe so wanting those to be held and seen and witnessed and appreciated for what they are, the whole of you to be seen.

Best way for me, if I can talk about an experience I had. It was an ongoing experience. 8:00 a.m. every Monday was when I had to work at the seminary. It was a part-time job. It’s about an hour and a half day, and that’s it. All right? So, but it was a great opportunity to be using my gifts and helping folks. It just felt like a perfect fit. And I did it for over 10 years for Western Theological Seminary. So, it was a real joy. 8:00 a.m.? Never a joy. Let’s just say that. I’m gonna paint the worst case scenario, and then I hope it brings up we’ve just talked about: doing this public self and this other part that’s like they have no idea what, you know! So, here it is. It’s 8:00 a.m., and yeah, I got care attendant who’s shown up and who’s been trained. And here comes the beginning of a schedule at seminary and thinking through, OK, are we doing well? Am I and my care attendant doing well enough to get this done, right? Are they trained up enough? Are we a good enough team right now? So, well, we’re gonna find out, right? We’re gonna find out. How do you find out?

JILL: [chuckles]

RANDY: You find out ‘cause you have to do it. You said yes to the job. You said yes to the care attendant. Thank God they said yes to you. And here we go. And my pants are gonna be twisted. And I’m gonna be huffing and puffing late to get there on time. My hair is not gonna look quite like I like it. We’re gonna have a lot of challenges going on from 6:00 a.m. to about 7:59, right? Just trying to go to the bathroom and positioning and where are my candies? I might be talking for an hour, and just all this stuff that you have to get together. And you pull into the seminary, and you sit down in that room. And there I am, just sort of breathing, you know, waiting. And what’s my job, by the way? My job is to be, for the students, a non-anxious presence. Hurry, hurry, hurry, hurry, hurry! Run, run, run! Go crazy. You know, all this, all these challenges of care in the morning. You can’t believe you made it! And you sit there, and then you’ve got to be the one to open up the space. And that’s gonna come out of you, all right? And some mornings, I hope you’re getting the sense, pretty difficult. And I hope I don’t have to pee at 8:20. And just a lot of variables.

[gentle ambient music break]

I want everyone who would ever know me to see that whole picture, and by grace or by love or whatever, I’ve known tons of people like that. And otherwise, I wouldn’t be making it. But isn’t that the quintessential experience? Tell me what you think about this. There is a sense in which I couldn’t have shown up every day either and talked about my terrible, difficult morning, right? My role and function was to show up and be that to them.

JILL: I’m gonna challenge you on that. I can see in that situation there’s this pressure to be the model of what has always been. But what happens if you go into that culture and that situation, and we shift that model and turn it upside down, and we become role models for other people in those settings? And the only thing that I can relate to is experiences of my own depression or anxiety over the years. And if I parented to hide all of that, my kids would still know, right? But if I parent in a way that’s honest and authentic with them and say, “Gosh, I’m really having a tough day today. Not every day is this way, but I’m having a tough day. These are the things I’m working through,” I am more authentic in myself. And I see that, yeah, there’s times where you have to put on a mask. I think that’s a human experience, that if we’re gonna connect with people, even people who don’t experience disability, that is a human experience. I see it in my own kids. And I don’t wanna derail this, but I wanna say that there is a shift, so people who don’t identify as disabled in your classroom and in your seminary may have identified with that human experience of needing to put on a different face. So, how many of the students could grow from your being a role model?

RANDY: I appreciate you bringing that up ‘cause it was part of our experience over this 10-year. There were times when I would just open up and tell them, you know, and just be more real in order to fulfill this kind of beautiful thing that you’re showing, right, that you could have with your kids. And so, I did have some of those moments, but it was part of my role and function of my job. See, that’s the other part: not to show up at work all kerfuffled, you know.

JILL: I completely understand that. I mean, there’s a time and a place and a frequency with which to do that.

RANDY: Well, and imagine the feeling! I’d show up. I’d say I had four, five kids in my group. I’d do all this to get to work, and three of them wouldn’t show up! They couldn’t get their butt outta bed, to throw on sweats, to cross the street. [laughs] Those are the tough ones. And then I tried not to lecture them, but I pretty well could have, right? I could’ve said, “Do you have any idea what time I had to get up today to be here to do this with you?” That would’ve been inappropriate, in my view, to take that bent. But I could’ve, right?

JILL: And I would imagine through being in the position that you were in, you were a role model to people that you had no idea.

RANDY: Well, there’s a lot of good give and take in those experiences, and I’m grateful to have had them. Yeah. That wanting to be genuine, that’s just part of who I am. It’s just part of me that just wants to just be honest and open. And I think it comes from being bohemian. [chuckles] I think Czechs, Czechs are pretty straightforward people for good and for ill, you know. They’ll tell you what they’re thinking. So, yeah.

CHRIS: I didn’t have that role model. I didn’t have that adult person. Like you and I didn’t really have— I mean, I don’t know. Maybe you had it somewhere else, and I didn’t—

RANDY: Not early enough. Not early enough.

CHRIS: No. What the messages we got from home and from our high school, which was a pretty experimental program, was, again, like, you can do anything you want. Put your mind to it, work hard, and you can do it all. That obviously helped us and motivated us and got us to where I think we are today. But it also meant that we stifled a sort of disabled awakening in ourselves until much later in life. Would you agree with that?

RANDY: I would indeed agree with that. It was always a sense of you only need a little bit of help. We’ll get you out there. Just lots of pressure to get your supports and get going and get moving. It’s paradoxical for me. It was so important. And it’s also carried some pretty heavy work for me to do, sorting things out a little bit later in life about self-acceptance.

One friend, once upon a time, good professor friend of mine, he says, “Randy, when I sit with you and we get talking, I hardly even know you’re in a wheelchair!” At the moment, I said, thanks be to God, of course. Awesome. Isn’t that what we all wanted? All right. Couple years down the road, yada, yada, yada. Things are tougher. Life’s getting interesting. I’m 52 now and my body is breaking down and I’m doing less and blah, blah, blah. And so, I have another mentor friend. And now what does he say? He says, he’s like, “You know, you are disabled.” He said, “He loves you, man. That’s for sure. But when that professor said that, he erases how much of your identity, right?” When I’m with you, I hardly even know you’re handicapped. Look out. Watch out for that.

CHRIS: I haven’t articulated this before, but I’m trying to think it through as we talk. The final three or four years of teaching when I was working DisArt and Calvin University at the same time, I was feeling welcomed and known in my work with Jill and DisArt and was not feeling welcomed or known in the work for Calvin. And I think that part of what that meant for me was putting up a facade and not embracing that disabled identity that you’re talking about, right? So the guy who says, “God, I never see your disability,” you know, that’s exactly how my students and I would talk. They would be like, “Boy, after two weeks, I don’t even, I don’t even notice.” And yeah, I thought that was fucking great.

RANDY: You’re like, thank God. Finally. All right!

CHRIS: Yeah. Until I started doing this work, right? And then I was like, wait a minute. It’s not good.

JILL: You know, I was only part of the last few years. From the outside view, it worked in your favor for people to see you that way for how many years you worked there until you needed accommodations. So, when you started asking for some flexibility in the early time to start later and remote teaching, some things were appreciated and accommodated and some were not. I know that it became really challenging when your disability was interfering with the systems that had been set up for the last 18 years that you were working there. It was kinda disheartening to watch and stressful, more stressful than it needed to be for you.

CHRIS: Absolutely. And I think when I started as a professor, I still hadn’t had that awakening, right? And so, when I started writing about disability and I started doing more Disability Studies work and sorta getting known for that work, it was kinda fun to bring disability into Calvin, right? ‘Cause they saw it as a validated field of study. And yeah! They loved it. They thought it was great until it became real.

RANDY: Confusing? Or confusing for them?

RANDY: It was never confusing, but it was all in the land of theory and philosophy. But then when the theory of pain and the theory of discrimination and philosophy of oppression came alive in my own body, that’s when things went wrong, I think, or went really difficult.

JILL: And you had students where you had this great, the January series class where that’s where you could be most honest and open about disability. I joined that class a few times, and I would say that you had probably a larger percentage of openly disabled people who came out as disabled, whether for the first time in that class or going into the class because of they knew who you were and your teachings. And it was really validating. So, what happens when that could be filtered into other classrooms or other studies or validated in a different way? Because I felt like the students, they really felt heard, listened to, appreciated for who they were and are.

[gentle ambient music break]

CHRIS: And Randy, I would hope that this resonates with you, but I never had a problem with students, nor did you have a problem with parishioners.

RANDY: Nope.

CHRIS: Right? It was the structures, and it was the—

RANDY: Systemic.

CHRIS: The systemic folk and the people, quite frankly, who represented the power of those systems that Randy and I have never easily, I mean really, we haven’t gotten along with those authorities in our life. I wonder if people see that as us being ornery or pissed off or whatever. But as we’re talking about it, it really feels like that there was some friction between our lived experience and the lived experience of the structures around us.

JILL: [chuckles] And we had a conversation with another one of our interviewees about not being accepted for a volunteer position because she asked for accommodation, and they were worried that other people would ask for the same accommodations. So, how much does that play a role? So, if one person asked to work remotely, well, now it’s gonna open the floodgates because everybody’s gonna have that ask. Or it’s not gonna be fair, which is so backwards because it’s already not fair! Right?

RANDY: I’ve heard that from a church that said that to me about something I wanted to do, and I would’ve needed to do it a little bit differently to fit my circumstances and yeah. Yes. I’ve heard that before. Absolutely. It’s always kind of a stopper. I’d be like, well. I guess I don’t have an answer and maybe others would do it. I don’t know if others would. In the moment, I’ll be honest, I would kind of expected that they would accommodate me. If they get that attitude, then they’re like, oh, somebody really expects to be accommodated! I had that turned on me too! What’s the word I’m looking for? Demanding or what’s the word that we get?

CHRIS: I remember very distinctly. Maybe remember this memory, too. You were interviewing for a job. We don’t have to say who was for. But you got that—

RANDY: Entitled.

CHRIS: Yes. Entitled. [laughs]

RANDY: You’re so entitled. You’re entitled? You think you’re entitled to this?

CHRIS: Right. Right. So, you were interviewing for a job. I was in graduate school. And something came up. We don’t have to talk about who the jobs was with. But a decision was made not to hire you. But one of the reasons they gave you is that, as I remember it, is that it was gonna be too expensive for them to have a caregiver fly with you or whatever.

RANDY: Yeah.

CHRIS: And I remember thinking when I saw Crip Camp that if that movie would’ve been out in the ‘80s, like if that would’ve come out in the ‘80s and people would’ve been able to watch that, I sometimes think of the differences that it would’ve made—

RANDY: Yeah.

CHRIS: —for people to know that history, for people to know that heritage of action, so that when we’re asking for things like an extra plane ticket or an extra 10 minutes for a bathroom break or a later class, that people would sort of link up the two things. We didn’t have that. We didn’t have that. It wouldn’t have been quick. But I think if it would’ve happened over time, there may’ve been a little bit more understanding in the imagination of that history. But maybe.

JILL: I think you’re optimistic on that one.

CHRIS: [laughs]

JILL: But I like that optimism. But the almighty dollar, you know, in the decision making. I think some companies, yes.

RANDY: More of it plays in my mind is in trying to find a church, another job as a pastor, and being passed over quite clearly by some folks who were not nearly as well trained, in my view. I came to find out that one of our area churches hired another guy instead of me, and his job in the last year or year and a half prior was a caddy at the golf course. He was younger than me. He was much taller. Pretty good looking young man, and they went with him. So, I’ve had more of those kind of things are playing in my memory. But, yeah.

[gentle ambient music break]

CHRIS: What else haven’t we talked about that you wanted to make sure we talked about?

RANDY: Well, first, I just really wanna know what kind of danger I’m in! Fear is a real thing, still, for me. I can name that. What is gonna happen beyond this? What are we going to learn from this and what comes of it? I wonder if that broader view of the human family, what it means to be human, what it means to be one human family. I like to speak of it as that, you know. We’re all children of God. I wonder if that will ever sound so nice and simple. Most of the really good stuff is quite simple. And then somehow it gets complicated. But yeah. That’s one of the questions I have. I wonder about what’s going to change, if anything? Yeah.

This has been great just to have time to talk back and forth in kind of an open setting and to just be staying in contact with others through this time. We’ve got some tough calls to make as individuals who are disabled. I’ve noticed some things online about care dynamics that are becoming complicated because one person’s spouse is a nurse. My spouse, for example, my wife does work at the hospital. She doesn’t deal with patients, but she still is connected to that, to that space. Yeah, I kinda wonder over time what happens? When do I invite another staff person into my home? Right now we’re in a period of grace, right? A good space. But my care attendant’s needs are that of a student, you know, in process. These times don’t last forever. So, yeah, just trying to be answering those questions about when is it OK and safe enough to hire new people. And that’s more of a practical thing with COVID.

But the ethical dilemma—it’s not really a dilemma—but the pressure comes in where I would like to really have my autonomy around that choice. And, you know, others would be greatly convenienced if I would cooperate and be willing. And it would help me, yes. It would help me to have more care. And it will raise my level of threat. So, make your choice. Don’t like that choice. I don’t like feeling the pressure of having to choose between getting my wife some support, some more help for me, and taking a risk of exposure. I’m not alone in that.

CHRIS: Absolutely. Yeah, having to make that decision, my gut is always to let Lisa make that decision and to encourage her to say whatever you need is what we’re gonna do. And yet, she knows as well as I do that letting somebody else in is a threat not only to me but to her and Moses as well, my son.

RANDY: You got a blessing in that, in that agreement, ‘cause that’s something. [chuckles]

CHRIS: That doesn’t come over tonight. That comes from—and Jill knows this and Lisa knows this—it comes from a whole marriage worth of navigating care—

RANDY: Yes.

CHRIS: —navigating that relationship, right? And so, I feel bad for people who have disability in their family who haven’t had to deal with this question. For the first time, now they’re dealing with it. How do we deal with care and not having care and the risks involved?

RANDY: Somebody pretty vocal on one of our web groups, who was talking about it with her husband, right, as a nurse, and just trying to figure that out. Is he gonna lose his job? I mean, right? Then, where would they be?

JILL: Well, that’s a whole nother conversation about how care is being paid for.

RANDY: Oh, my. Yeah.

JILL: As people are losing their jobs, if they pay for care out of pocket or if you’re not getting enough care, you know, that’s a systemic issue.

CHRIS: Can I just say the fucked up part, though, if I could? And that is that if I quit DisArt and went on government, I would have my whole care paid for, right? I mean, if we didn’t live under the poverty line and if we got divorced from our wives, right, and had zero, you know what I mean. Like that’s the weirdest part of our system is that literally, if I stopped working, I could pay for care a lot easier than I do now.

RANDY: At a CIL.

CHRIS: Well, at a CIL or through an agency that, again, yeah, I don’t have any control over, and there’s all those things as well.

RANDY: Oh, man. I got a client right now. They’re so relieved. They’ve been trying to do independent living at a place. They’ve got a revolving door of care. This person is kind of tough to communicate with, in terms of her own speech and languaging. It’s very difficult to understand her sometimes. I think that’s got something to do with it. Long story short: COVID comes, and she’s back with her parents. And they’re in their 60s, and they’re gonna wear out. But she’s happy as a clam just to be home. It’s that constant set thing. You know who’s gonna care for you. You know who they are. You’re not wondering about what’s gonna show up at the door the next day. So, agency stuff, that gets me into a whole other thing because we have a healthcare…. [laughs] That’s a crisis before COVID, right? And now you add COVID. So, it’s strange. She wants to live independently. You better believe it. But those are real complex things.

[gentle ambient music break]

RANDY: I was having a bad spot, and I was trying to get some counsel or friendship from my pastor. And I was really griping a lot about, you know, just by virtue of the fact that I’m alive, I have this extra job! Oh, you wanna live? Oh, you have a job now to find. You find it. You find it. You find the care. And I must’ve been in some dark cloud of just a tough patch. And she said, “So now, at some level, it sounds like you don’t think you should ask to provide for your own care.” And I said, “That is absolutely correct!” And we just got a little quiet. All the pressure to find care, hire, make it work out, be nice, remember this, remember that, teach them this way, be kind, pay them well enough. Uh buh buh buh buh buh buh buh. All that’s on me! Is it too radical to say those born disabled will be provided for by the rest of us?

CHRIS: That’s how it was when we were little, that people provided for us. And we had rarely a say in the kind of care. I guess I would rather work to get my own care if it means that the care I could get is consistent to what I expect. Yeah. If I don’t give a shit about what kinda care I get, I could just stop talking, and people would probably take care of me. Do you know what I mean? But they wouldn’t do it in a way that was in line with the things that I care about.

RANDY: Right. Maybe I’m at the paradoxical level of why anyway? Why ever? Philosophically.

CHRIS: Right.

RANDY: Why am I here in need, and they are not? That sort of thing that belongs to God. OK, good. Yeah.

JILL: [chuckles]

RANDY: But it’s also up to us.

JILL: But how would all of that change if you had the money to be able to pay caregivers what they’re valued?

RANDY: There it is. Absolutely. It’s connected to that. If they were paid well enough and it was mutually understood to be a job, a career, all it would take is Tom Hanks taking care of a cripple for one week and say, “You know what? I’m learning more about my Tom Hanks life,” You know, make it popular. Some key people have to have this experience of caring and being engaged in it to make it that kind of a, make it more holistic, as you guys were talking earlier. That these can be connections that are very life-giving and supportive of a really good résumé at some point. Oh, you’ve done that kind of work. So, you know how to cooperate. You know how to communicate. You know how to deal with vulnerability, right?

CHRIS: And you know how the problem solve, right?

RANDY: Problem solving. Yes.

CHRIS: You’ve tapped into that disability culture value. I think Sean Penn is probably our best bet, though.

RANDY: [huge laugh]

CHRIS: Like he’s all like helper dude. And remember during Katrina, he went out in his boat and picked up people. He’s the guy.

RANDY: God bless her. Helen Hunt has done all she can.

CHRIS: Yeah, that’s right. That’s right.

RANDY: She’s still doing a show right now on Masterpiece. It’s a World War II thing, and she’s delving into the terrible treatment of disabled children during the Nazi regime. So, add that to your files. But she is still at it. Why is she so concerned about disabled people, do you know?

CHRIS: Ellen Hunt? Oh, The Sessions.

JILL: She was in Castaway, I’m looking, Twister.

RANDY: We need some of the big stars too. I’d like to have the rights and the advocacy for rights put right up against that together so that those two don’t get artificially divisive, somehow politically, right. Whereby we have to somehow choose between equal rights and access or support and care.

[gentle ambient plays through the next few sentences]

CHRIS: Mmhmm.

RANDY: Then if you ask for both, whoa, then you’re really entitled! You want a ramp and a button and a sign.

CHRIS: Forget it—

RANDY: You know, aim high.

CHRIS: [laughs]

RANDY: Hope we can talk again!

CHRIS: Absolutely. Well, thanks so much, man. Thank you for spending your morning with us.

RANDY: You bet!

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.Music: “Homage Fromage” by Podington Bear. (Source: freemusicarchive.org. Licensed under a Attribution-NonCommercial 3.0 International License.)