Evan Rosa: For the Life of the World is a production of the Yale Center for Faith and Culture. Visit us online at faith.yale.edu. This episode was made possible in part by the generous support of the Tyndale House Foundation. For more information, visit tyndale.foundation.
Calli Micale: The story society tells about what it is to be normal, to be productive, a contributing member of society, are really bound to ideas of intellectual capacity, physical capacity, and in the Christian tradition, especially, a capacity to serve and care for others. When that seems to be removed, or the notion that in one's life, those possibilities could be stripped away from who I am, that's terrifying.
The stories that we tell about normalcy and disability are bound to how we think of ourselves as humans and what it means to flourish. And those same stories invite fear when we even subconsciously or implicitly consider that the loss of memory, a loss of intellectual capacity, could be a real, lived possibility for one's own life.
Evan Rosa: This is For the Life of the World, a podcast about seeking and living a life worthy of our humanity. Calli, for the last thirty minutes, you've observed me have what you, I think, very helpfully called a "disabling experience" - setting up a microphone.
Calli Micale: That's right.
Evan Rosa: You watched so patiently while I attempted to put a mic in one place and then another, and then encountered the, sort of, "incorrigible" is the word.
Calli Micale: Yeah.
Evan Rosa: An absolutely incorrigible mic stand that just would not let me do what I wanted to do.
Calli Micale: Evan, there were all sorts of material obstacles in your way to getting this podcast going. I watched you struggle, trying different possibilities, creative possibilities.
Evan Rosa: Yeah.
Calli Micale: The chair, the stand, the desk, and trying to navigate the space in a way that just was not working for your body and what you wanted to accomplish in this moment.
It was a... it was a disabling experience. It was frustrating. But we also laughed and there was joy in the material struggle.
Evan Rosa: We dropped you straight into the middle of that conversation because I wanted to share a little bit of the disorienting, frustrating experience I had when I invited Calli Micale over to the Yale Center for Faith and Culture office to talk about disability.
Calli Micale: Yeah, so my name is Calli Micale. I study disability and religion. You can find my publications in the Journal of Disability and Religion and soon to be the Disability Studies Quarterly.
Evan Rosa: Calli recently finished her PhD at Yale and will soon be an ordained minister in the Evangelical Lutheran Church of America.
No doubt, this thirty minute battle with a microphone was relatively brief, and I don't at all want to make light of the fact that my norm is not disability. Occasional low back pain and skateboarding injuries notwithstanding, physically and intellectually navigating the world usually comes without the frustration and stress and embarrassment of this little mic battle.
But what's more is that I didn't even recognize it, and that's why I wanted to start with it. When we finally pushed the "record" button, Calli pointed out the instructive irony that I started an interview on disability with a disabling experience. Once she used those words, I just saw the whole thing differently.
Calli Micale: Disability is a category that just, it impacts so many people's lives and it's something that really touches all of us. But because of our normative expectations of what it means to be able-bodied, fit, self-sufficient, independent, able to do and do things on time and get where we need to be and quickly and efficiently, it's also a category that sometimes inspires feelings of fear or anxiety. One kind of pushes it out of mind because- I often want to maintain this image of a self-sufficient, able-bodied person, able to navigate the world and do all the things that my life demands of me.
Evan Rosa: In this episode of For the Life of the World, Calli Micale and I discuss the theological and moral dimensions of disability.
Through three stories of her care and service with the physically and intellectually disabled, one about VA hospital patients undergoing amputation and the loss of a leg, one about autism and the reframing of experience, and one about a power shift, a surgeon's development of multiple sclerosis, and how to deal with the anger and loss of agency and autonomy, feelings of shame.
As set up for these stories, Calli introduces three distinct models for thinking about disability: the minority model, the social model, and the political model. And we talk about the suffering of chronic pain, insensitivity of patronizing temptations to minimize and marginalize and just keep disability out of view, maintaining a sense of hope and possibility, immense loss, the role that spirituality plays in a person integrating a disabling experience, the biblical and theological stories that create or critique our narratives of disability, and finally an examination of the "conditions of possibility," a phrase I love, not just for flourishing, but for making life work at all. Thanks for listening today, friends.
When I encounter my world, it's on the assumption- it's usually on some kind of ground level assumption that I'm going to be able to do whatever it is that I want to do. I'm glad we started here at a, sort of, felt, raw, experiential place because I think the disorienting nature of it... you know, a faltering and spinning or hitting a wall, that one didn't work, or, you know, all the doors are locked.
It was disorienting, it was perplexing. Guide me through some of the other experiences, and what language do you like to bring experience of disability, or disabling experiences?
Calli Micale: Because disability is all about materiality, it's about our bodies and our minds, how they're interacting with the material space, the kinds of obstacles that get in the way and the creative negotiations that folks come up with when they're faced with such struggles.
Evan Rosa: How do you understand disability? Let's just lay the definitions out there.
Calli Micale: So one way we can think about disability is in terms of impairments. Physical impairments, mental impairments, social-emotional impairments, and these variety, wide-ranging, never the same impairments create inhibitions: our limits, our struggle with the way that society is arranged and set up.
Another way to think about it is that disability actually emerges from how society has been thought. We have arranged the world in such a way that ramps and elevators, for example, are not necessarily present for all folks to access physical space.
So society has ideas about what the average body is like and can do and then those ideas get incorporated into the way that society is arranged politically, and also how material structures get physically constructed.
Evan Rosa: Yeah. So I'm hearing internal and external. And at least one way of reading it is there's impairments that might be internal or at least endemic in some way, contextually, within the life of the individual. But then there's external forces, societal forces or community, or just other individuals perhaps.
Calli Micale: Yeah, there's the physical reality of our bodies, and there is the internal perception of how folks are perceiving what it means to be a human in the world.
And there's another way one can think about disability, and this one really emerges in the mid 20th century with disability activism that in some versions of the story culminates in America, at least, in the 1990s, ADA. But this story is that folks with these non-normative bodies and minds came together, they gathered and organized collectively to create a category of disability that would then empower them in the public sphere.
Evan Rosa: So tell me a little bit about... are there good terms for each of these three approaches? How would you describe them?
Calli Micale: Yeah, so the first one is sometimes referred to as the minority model of disability, that there are minority bodies and minds. They diverge from a kind of normative conception of what it means to be an able-bodied human.
Evan Rosa: Got it.
Calli Micale: The second one is sometimes referred to as the social model of disability. It's not that there's something wrong with individual humans. What's wrong or what's different is the way that society has perceived those folks. And the third way is... the third is sometimes called a political model of disability that emerges out of a collective action, the way that the disabled themselves have organized and formed a collective identity.
Evan Rosa: Okay. So then with these three in hand, how do our starting points with respect to understanding disability lead to different approaches for care, different approaches for advocacy, and a different approach to understanding the experience itself? And are you going to draw from different ones? Is it a sort of melange or... where do you stand?
Calli Micale: So this is something- my students especially struggle with this because we all want an answer. What's the right way to think about disability? What's the best way? What will do the most justice? The trouble is that all of these various modes of thinking and living a disabled life, they all need to be on the table and they all come together because the reality is there are... folks are dealing with physical impairments. They're dealing with chronic pain and the real suffering that emerges out of experiences of disability. And so the first model or the first way of thinking disability as a minority body or a body life, that becomes really crucial for the way that it can really recognize the suffering.
But the second model is important too, because it forces us to look at the arrangement of society. The conditions of possibility that empower our lives or that create obstacles to our flourishing.
And then the third model is important because here we're centering the disabled experience and the ways that folks with disabilities have come together despite all of the odds that seem to be against their living and flourishing, and they have come together and they've made community and they've created a collective action that has really transformed and changed the very structure of our society.
Evan Rosa: As I hear you describe this third political model, I'm sort of hearing in it a kind of analog, maybe to a kind of liberationist approach, where there's sort of like... you can go through a minority understanding, even a social understanding of disability and yet still marginalize and keep folks out of view at times, continue to ignore or really fail on the approach to care.
But there's something morally substantive in this third option where there's a kind of preferential option of some kind for those who are disabled. And so I'm wondering if you can provide some kind of filter or overlay for how to think morally about each of these different approaches to definitions.
Calli Micale: Yeah, I think you're right. The worry is that a purely scholarly take that focuses on either just the minority, the kind of minority model or the social model, can become patronizing. And so really centering the stories of those that identify as disabled and/or those that face disabling experiences on a daily basis, that really centering those stories and narratives becomes crucial for doing the work of disability justice.
Evan Rosa: Yeah. I need to confess, I often don't feel like I understand the terminology or the language that the disabled community wants to use or finds most empowering. And so I wonder if you could give 101 on how to orient oneself to learning how to speak about disability better.
Calli Micale: Evan, you're not alone. Scholars are always debating about the best language to use, whether it's disability or a kind of... there's been a reaffirmation of the language of "crip" as particularly empowering disabled identities.
Evan Rosa: Interesting.
Calli Micale: There's just a wide variety of the debates about which model is best to use for thinking disability and the language... every book about disability you read is going to give an argument for different sorts of language and norms around how to talk about disability. And so the reality is that folks within the disability community and within disability studies more broadly are asking these very same questions about what language to use.
And it has been fluid. It will continue to change as we talk and engage and explore what it means to do disability justice.
Evan Rosa: So we've defined a few different categories or approaches, we might say, to understanding disability when it comes to understanding an approach to care, advocacy, solidarity, inclusion.
How does that... how do we begin to think about that because I imagine that there's going to be, there's already some, there's some valence already built into the way you described the minority, social, political views. There's moral valence that seems it's already there. How do you lay the groundwork for understanding an ethic of disability? You just want to tell stories?
Calli Micale: I think we should tell stories.
Evan Rosa: Maybe that's itself instructive, right? That there is a kind of bottom-up experience that you have to appreciate and understand that might be inherent to an ethics of disability.
Calli Micale: Yeah, so my approach is really rooted in stories, in narratives of the body, in narratives of interactions and experiences of disability. It's also rooted in the stories that have been told about disability. Stories that are biblical in nature, the healing narratives of the gospels.
But also theological story, right? So in Augustine, City of God, for example, Augustine is going to talk about healing as a witness to divine activity, which may on the one hand suggest that what happens when one really believes or has faith, is that disability is miraculously gone and suggests that disability is actually something that is morally wrong, that has to do with a moral impurity or something that is morally wrong with the person. This is a kind of narrative that stretches throughout Christian history that folks with disabilities have been hurt by, especially when folks, you know, lay hands on the person in the wheelchair and pray that God will somehow miraculously take disability away.
Evan Rosa: Yeah. Like, I'm using air quotes: "fix them."
Calli Micale: Yes. Yeah, exactly. As though to be disabled is necessarily to be broken, in need of healing.
But Augustine, in The City of God, in the very same book, I believe it's book 22, he talks about wounds and scars of martyrs that actually remain on their bodies in heaven such that it becomes a feature, an identifying feature of who they are and what they have done in this life. It's a mark that is then glorified and amplified in the resurrected body.
Evan Rosa: That's Thomas and resurrected Jesus, right?
Calli Micale: Exactly.
Evan Rosa: Explore the wounds in the resurrected body.
Calli Micale: Yeah. So there are these stories that are scattered ubiquitous in Christian history and thought that also say the disabled body is a sign of divine activity, a sign of God's wondrous involvement with the created world, that God cares about our pain and our suffering, that God is present with us in that suffering.
And then... are you ready for this next step?
Evan Rosa: Yes.
Calli Micale: And it's these stories for Christians that really make a difference when they face a disability or experience of disability. So I'm going to tell you a story.
Evan Rosa: Please.
Calli Micale: This summer I spent working in the chaplaincy office at a VA hospital in Connecticut. And I was assigned to the surgical intensive care unit and so spent a lot of time with folks preparing to receive, receiving, and then experiencing the aftermath of amputation.
Evan Rosa: Amputation. Oh my goodness.
Calli Micale: Yeah. So...
Evan Rosa: Wow.
Calli Micale: Christians, many of the Christians that I worked with, and in this case they were all Christians, they went in to surgery thinking about loss. Loss of employment, loss of fun hobbies that- maybe it was hiking with a friend or going for a bike ride.
Evan Rosa: And so these are patients that you're describing. Like you're walking through the process with them as they're anticipating what it's going to be like.
Calli Micale: We're talking and praying. We're reading Scripture together and it always starts with thinking about the loss. But then as there is prayer and Scripture, and this often comes from the patient themselves, a feeling of divine presence in the process, in the experience of loss. And in each case, what seems to emerge, the loss doesn't go away.
Evan Rosa: Sure.
Calli Micale: Yeah. There are feelings of loss and that continues.
Evan Rosa: That's going to be a simultaneous kind of thing, right? Please continue though.
Calli Micale: But then there's possibility and hope. So I worked with one man, a Baptist, a lover of prayer and song, and he started thinking about what amputation would open up for, spending more time with the grandkids because he wouldn't be working. What it might mean for longer phone conversations with friends in California.
That all of a sudden that there is a sense that the loss coexists with possibility and renewal and Christian stories of divine presence and divine activity and a kind of being with us in our pain and our suffering and experiences of disability, that that becomes... that religion and faith becomes- has a sustaining function in one's life and carries one's through, and then opens, and I want to say that the Holy Spirit is totally involved here, but opens then one up to new possibilities, creative possibilities for engaging with one another in our communities and what can happen when we approach disability through different narrative frameworks.
Evan Rosa: Can I ask what was amputated? I want to know more about the personal story and we can keep his identity safe, but I would love to know some of the details to enter into some of what it was like.
Calli Micale: Yeah, so I'm thinking of two men in particular that I worked with over the summer. One experienced an amputation of almost the full left leg. And the other experienced the amputation of the bottom half of the left leg below the knee. And there was a lot of struggle when the patient discovered that the amputation would need to go further above the knee. Struggle because of the limitations that might bring with respect to movement and navigating that this particular patient had become accustomed to.
Evan Rosa: So you talk about the role that spirituality plays in understanding, I think what I'm hearing is, the whole of the experience. Not spirituality just as a response to understanding possibility, but very much understanding the loss itself.
Calli Micale: Yeah.
Evan Rosa: And integrating them. So I'm wondering how you would describe the process of- the word "integration" comes to mind, because of the both physical and mental aspects of enduring a disabling experience like this where you go from at least, you know, you go from "able" to "disabled." That must feel disintegrating in so many ways to the individual. And I can only imagine that we might set up a—societally, with respect to both advocacy and healing and care—we would want to help them find reintegration of some kind, just personally. But how do you think about religion's role in this process?
Calli Micale: Yeah, I think you're really onto something, the kind of- the stories that we tell about life become a kind of fodder for our own formation, self-formation, and how we then go on to perceive who it is and what our meaning and purpose is in the world.
And so going through a disabling experience, moving from what especially from the outside often looks like a kind of "self-sufficient, normal,"—I'm using airquotes here—"normal" body and life and then moving into especially a kind of existence that is perceived both internally as a disabled existence and also from society as, and now you are marked disabled because of the physical amputation that is visible to everyone around you. That there is a disintegration of the kind of self that one- self and story that one had constructed. And, yeah, I think religion is, it's both: it is a tool to help in the reconstruction, the gathering together of the various pieces of who and what I thought I was, but now I am something different. It's also- those very experiences can also serve to critique the narratives that have emerged out of religion, about what it means to be, for example, "whole" or what it means to live a graced and flourishing life.
Evan Rosa: Yeah, and I think, well, here's what I take to be a common take, is that the proliferation of miracles in the gospel narratives, for instance, where the quote, "lame" or "sick" or just "ill" of many different varieties are healed.
That's a kind of norming experience for some people, or at least is purported to be, is that, "well, this says disability just is meant to be healed and unless it's healed, there's no wholeness." And I think we want to challenge that but it's tough when you're operating from a Scriptural model that at least seems to be commonly read that way. How do you read the body of miracle stories in the Scriptures? I'll stop the question there. How do you read them?
Calli Micale: This is a question that so many of my students come to class with on the first day, is this "brokenness-wholeness" motif in Christianity, the damage it has done, especially for folks with disabilities that cannot be cured, for whom disability becomes an integral part of their identity. They may even have experiences of pride or affirmation associated with living a disabled life, with being in disabled community.
And so what to do with these, yeah, the narratives of healing and cure that are scattered, especially throughout the gospels. For me, I think it's important to emphasize first the metaphorical nature of the story, that oftentimes, that disability is being used in a literary sense to draw attention to the site of divine activity. And in the metaphor, what's being talked about is a transformation from sometimes doubt to faith, sometimes a kind of- a state of sin to a state of acceptance. And the function of the disabled body in those narratives, sometimes disability is associated with sin, but other times in the narratives, the disabled person is the one that is elevated as having a kind of superior faith.
Evan Rosa: Yeah. The one that's coming to mind is the Pool of Siloam where, "your faith has made you well," and it's just like this incessant calling after Jesus, Son of David. And in this scenario, if I'm remembering rightly, there's just no one there to place the man into the waters when they get "stirred." I confess, I don't know what that means.
Calli Micale: That's right. There are folks that are clambering over him because he's lame and he just, he can't get there fast enough.
Evan Rosa: And he's pushed to the side. Yeah. Which I imagine bespeaks at least one kind of context that, I think, that we do still have with us today, which is a clamoring or a kind of urgency and anxiety to move toward healing and to move toward the elimination of disability. And yet he just keeps getting passed up.
Calli Micale: Yeah. So here the story is one of slowness, of constancy, of a kind of unwavering faith despite intense pain and suffering.
Evan Rosa: Okay, so you're describing this as sort of calling attention to the site of divine- please rephrase this because I liked the way you put that but I'm missing it.
Calli Micale: That disability, because it is societally shocking, calls attention to the site of divine activity. And those narratives, I think, yes, I think Christians ought to critique the attachment between- and critique metaphors of disability that attach disability to sin in particular. And we should rethink, of course, what it means to be whole and rethink what the Scriptures are really telling us about wholeness and the appearance of faith. What sort of bodies have access to the work that Christ is doing in the world?
And disability studies has all sorts of resources, and disabled experiences and stories have all sorts of resources for returning to those passages and looking at them... and looking at them differently.
Evan Rosa: Can we talk about intellectual disabilities?
Calli Micale: Yeah.
Evan Rosa: That's a different kind of disabling experience for a person and so do you have any stories that you would might want to get started on there?
Calli Micale: I do. Yeah, so here's a story from my own experience. Every Christmas, I return to my hometown where my parents still live.
Evan Rosa: Which is...
Calli Micale: Neenah, Wisconsin.
Evan Rosa: Cool.
Calli Micale: It's just south of Green Bay, about an hour and a half north of Milwaukee, for those that know Wisconsin geography.
Evan Rosa: Do you have a hat that looks like a block of cheese?
Calli Micale: Of course. Requirement.
Evan Rosa: Continue. In Neenah, Wisconsin. You're going back for Christmas.
Calli Micale: Yes, I grew up in Wisconsin. I go back for Christmas every year and hopefully a few other times as well, and one of the kind of crowning moments of going back to visit my parents is getting to worship Christmas Eve with my mom. So we, yeah, head into worship, sit beside one another, and I need to confess a little bit about my own engagement with worship.
Evan Rosa: Okay.
Calli Micale: As a scholar of Christianity and Christian thought, I tend to spend most of my time in worship critiquing the sermon, critiquing the liturgy...in the most generous way possible, but in my head, that's how I stay engaged in worship.
Evan Rosa: Sure, sure.
Calli Micale: There are a few other things I like to do, which kind of push against some of the...
Evan Rosa: I know that lots of listeners are just waiting with bated breath on this one. I think you're talking to the right crowd.
Calli Micale: Push against some of the normative practices of Christian worship or the sorts of things that have been said about Christian worship. So one of my... one of the things that I do, which is noticeable only to myself, is that I on occasion sing harmony, which I see is pushing back against a very famous Dietrich Bonhoeffer, central in my Lutheran training.
Evan Rosa: He and I parted ways once I discovered his aversion to harmony. What the heck?
Calli Micale: So pushing back against church authority is something that is a key part of my worship experience.
Evan Rosa: That's a healthy thing.
Calli Micale: I do this to my mother as well, which she doesn't like. I sing very loudly, most of the time on key, which she both finds endearing and embarrassing, somehow, simultaneously. So while I'm doing this and playing my own kind of Christian worship game, there is an autistic woman named Aksana. She's seated on the other side of the worship space and... oh, I need to take a step back. Do you know, do you know the Zimbelstern?
Evan Rosa: I don't think so.
Calli Micale: It's an organ stop that's shaped like a star and it...
Evan Rosa: You have to back up further though because I don't think anyone's going to know what an organ stop is.
Calli Micale: It's an attachment to the organ that is played to mark, like, really important points in a hymn. So perhaps a hallelujah. It might mark that. And historically, they are not in tune. It clamors, it's loud. So it's star shaped and it has a bunch of bells.
Evan Rosa: And I found one online. Here's what a symbol stern sounds like.
Calli Micale: I hate them because...
Evan Rosa: Tell us what you really think.
Calli Micale: Because they disrupt my ability to stay on key. They like interrupt my worship and practice. They like, they make a loud noise and then I can't get back into the hymn that I was singing and irritating my mother who is sitting right beside me.
And so I am having these feelings of irritation and annoyance and, "ugh, why did the Germans have to create that in the 16th or 17th century or whenever it was?" But Aksana, the autistic woman seated on the other side of the worship space, she starts laughing and clapping in response to this, like, loud obnoxious clamor.
And all of a sudden, my attention is drawn to her and it shifts my relationship with the Zimbelstern, with the disruption of worship. And all of a sudden, I see the kind of joy and pleasure that it's creating for her. And seeing that joy all of a sudden, like, I'm like transformed in the moment and I have this whole new relationship with the material space, the sounds that I am engaging. And, yeah, it feels like... I don't know, church people sometimes talk about this as a God moment or something, but yeah, it feels like grace or something, this radical turn.
Evan Rosa: It's also just a kind of noticing, centering Aksana's experience. So you center that experience and allow it to completely reset the norm. There's a mode of reception and appreciation that you might not otherwise have been able to tap into.
Calli Micale: Yeah, and I think for me, what's really important is that from a second person perspective, I have no idea really what's going on in Aksana's world. I can observe that there is some joy and pleasure, but I don't know how she is interacting with what's being communicated in worship other than it's- appears to be creating intense feelings of joy.
And so for me, I don't want to project my own theological interpretation on her experience, but at the same time, I think that interaction becomes then a lens through which we can rethink the role of sensation and human interaction even at a distance in worship and what that might mean for how it is the Holy Spirit is interacting with us even in or, I hope, interacting with me even in my feelings of irritation, annoyance, critique of the Christian tradition more broadly as I engage on all those various levels, how the Holy Spirit is working through sensation to transform my own experience, even at the level of just pure affect and emotion.
Evan Rosa: The word "otherness" or really "strangeness," and I don't mean that in any particularly loaded way: "difference." That's an avenue I want to make sure we get to, which is that feeling of disorientation or a feeling of, you know, something being "abnormal" or "strange," "alien," "other." It's a kind of, you know, you might say "xenophobia," really, a fear of the other, that would lead to an anxious approach to simply wanting to either marginalize, hide, clean up. I'm trying to describe a more vicious approach of healing, which is healing to almost eliminate what really we don't need to receive as wrong in the first place or as broken in the first place. The stigma that follows disability of all kinds, but particularly intellectual disabilities, it leads to a kind of fear.
Calli Micale: Yeah, I think you're totally onto something because it is- and this is connected to what we were talking about earlier with respect to the stories society tells about what it is to be normal, to be productive, a contributing member of society, are really bound to ideas of intellectual capacity, physical capacity, and in the Christian tradition especially, a capacity to serve and care for others.
When that seems to be removed, or the notion that in one's life those possibilities could be stripped away from who I am, that's terrifying. The stories that we tell about normalcy and disability are bound to how we think of ourselves as humans and what it means to flourish. And those same stories invite fear when we even subconsciously or implicitly consider that the loss of memory or a loss of intellectual capacity could be a real-lived possibility for one's own life.
Evan Rosa: I don't know how this particular phrase lands. It's not my own. I heard it once, but I've reflected on it before that "there's really just two kinds of people. Those who are disabled and those who will be disabled."
How do you react to that phrase? Is it too simplistic?
Calli Micale: It's a truism that I think is often true. But yeah, I think what's really true about that is the way that disability impacts everyone's life and there are visible disabilities, there are also invisible disabilities: folks that live with chronic pain, those that experience depression and anxiety, which is now being included in the category of disability. Those also that have experiences of cancer and other illnesses that are now being incorporated into what disability studies scholars think of as disability more broadly.
Evan Rosa: What I find interesting about that is the sense in which it tells us something about our own humanity and about what it means to flourish as a human.
And so here's another one that like... I'm just going to make the claim; I don't stand by this claim, but how do you respond to this because I think it's embedded in a lot of our- what you might think of as knee jerk responses to disability in American life, is that "disabled lives are not worth living." How do you respond to that?
Calli Micale: Yeah, I think that that sentiment is really in- at the heart of the kind of idea of what it means to live the dream of the American life, which is a life that is rooted in ideas of self-sufficiency, of independence, of a capacity to engage in work and particularly fulfilling or meaningful work. It's rooted in ideas of autonomy, but also ideas of contribution and service and being able to give back to the society at large.
And disability really counteracts- and in disability studies, we might say, has counter stories for what it means to live a flourishing life. What are the values that actually make a difference? Can I tell you another story?
Evan Rosa: Please. Yes.
Calli Micale: So this is another story that comes out of my chaplaincy experience at the VA hospital working in a surgical intensive care unit. I was working with a patient that was in the late stages of MS. And so...
Evan Rosa: Could you just describe multiple sclerosis?
Calli Micale: Yeah, so I'm going to describe I think just the physical situation that this particular patient was in. He was totally dependent on others for care. This included... he had a colostomy bag, so couldn't go to the bathroom on his own. Needing to be washed and bathed by others. Constant feelings or insecurities around how he was smelling because of that real physical reality. He couldn't eat without assistance from a caregiver, and what was so striking about this particular patient is that he had a long career as a surgeon.
And so now the roles are reversed where the surgeon, whose meaning and purpose was to care and heal others, is now faced with the situation where he's the one needing to receive care, who's in pain and who will not experience healing.
And so when I first met this patient, he was angry.
He was suffering, struggling because he felt like his life was now worthless. He said, you know, "my whole meaning and purpose was to care for others. And now I can't use the bathroom without significant help from other people. I need to ask someone else to cut up my food."
And his own experience of that real just utter dependence on the other folks in his surroundings, the dependence, the no longer being able to care and work and serve others really made him feel like his life was no longer worth living.
Evan Rosa: It's interesting to think about that through the lens of power, right, or autonomy, governing oneself. But in the case of a surgeon being charged with the care and governance of others and then to have that flipped around is a truly... there's different layers to that. And so because of the extremity in this case, right, going from being an extremely skilled physician who can enact healing in others to then not just losing that capacity slowly, but then actually having to become a person who is radically dependent on the other, the shift of power in that man's life must have felt just extreme.
Calli Micale: That's right. All of the power and material gain that comes from being a surgeon, and then to be what feels like for him a kind of imprisonment in a hospital room, unable to even shift one's body in bed. It's a radical shift in life experience.
Evan Rosa: How do we support individuals in retaining a sense of agency through the process? The experience of agency is one of these things that you can't necessarily count on that always being there. Agency comes and goes, and the question of dependency, and I should say interdependency on others, and just the concept of needing people to help us or do things for us, that's a reality of life. How do we manage that and try to provide some kind of perspective that could suggest that life is indeed worth living in light of living with disability?
Calli Micale: So first I want to talk about what happened with this particular patient...
Evan Rosa: yeah, please. Let's finish that story.
Calli Micale: ...and the transformation that he underwent, and then I want to speak about it in more general terms. So for this patient, there was a constellation of symbols that he used to construct what it means to live a meaningful, fulfilling life. And those included things like autonomy. And autonomy: being able to provide and give care, being independent and self-sufficient.
So what happened in our conversations, as I would meet with him two or three times a week over the course of the summer. What happened is that kind of constellation of symbols fell apart and together we started to rework a new set of symbols that then could guide his own thinking about what it means to live an existence not worthless, but actually has glimmers of hope and life and worth, even in a completely dependent state.
So we talked about relationship and we got to practice, like, developing with one another a relationship. I remember, you know, I was able to - he loved this - I was able to bring him some writing. I was working on an article at the time, and he could push back on some of my thoughts but also be a kind of collaborator, a kind of intellectual collaborator in his best moments for thinking about disability and experiences of disability. And then that, being able to find alternative modes of interacting and engaging and also giving...
Evan Rosa: What's interesting about these symbols, forgive me, is just the way that they construe the self, right? There's symbols for the self and it's interesting how at least that aspect of a life worth living does have to do with how you regard yourself and how you come to accept the most trying circumstances that end up coming your way.
Calli Micale: Exactly. Yeah, so here it was about a kind of a shift from autonomy, independence, caregiving to a kind of model of the self based in relationship, in receiving care and also giving it back in these new ways that were not the technical ways of a surgeon, but were the ways of a kind of a conversation, a deepening of thought and life together. And that became a new framework for thinking, for him, what was possible.
And I think more generally with my students, when we're thinking about alternative ways to think about care and disability together and what it means to live a flourishing and fulfilling life, we start with the kind of bare conditions of possibility.
And sometimes it's helpful to think at the kind of minute level of one's own day. What are the conditions of possibility for your day to go well? What are all of the things, like do you pick up clothes from the dry cleaner? Does someone wash your clothes? Are you engaging with your kiddos at home? Who, what are all the people and the material circumstances that are necessary for you to go about your day and do all of the things that you need to or want to get done?
And then we'll take a particular experience. Okay, now, what if your life is one marked by chronic pain? What are the conditions of possibility, then, for you to experience those same relationships? What do you need? What do you need from the folks in your midst, in your kind of immediate circle? What's the work that they need to do so that you can continue to produce podcasts or have interesting conversations with your friends? What are all the various material and financial facets of making that possible for you?
And then how do we think about that on a local level with respect to the policies that cities need to put in place for citizens to have those creative and meaningful possibilities for their life?
Evan Rosa: Conditions of possibility is a really generative way of framing things. You can see both how it can assist someone who might encounter various forms of disabling experiences. You can see how it helps frame and contextualize that life for someone who is otherwise quite able.
What I'm hearing in your point about the conditions of possibility for making life work for all of us is that we're not nearly as autonomous as we thought we were. We're not nearly as individual or independent or powerful as we might tell ourselves. What I'm picking up on is the process of trying to appreciate how the conditions of possibility are often set by forces outside of us, other people, let alone the condition of possibility of life being set by God and held together by God in the first place.
Calli Micale: Yeah. Yeah, and I think, I love that you brought God into the conversation because I think religion and religious life can actually be an empowering tool, first for that it helps us recognize our various dependencies on others and particular material circumstances for life to happen. But it can also be empowering for folks that start to notice when those things aren't working. And then that can be an empowering tool to motivate us to perhaps make some changes, shift policies, or build that ramp that the church still hasn't found fun to put in place.
Evan Rosa: What I hear there is to now pay attention to those conditions of possibility and interact with them in more creative ways, and think about the- you know, think about these conditions, which seem so familiar, seem so normal. In some cases, they seem like if they changed, then life wouldn't be doable. None of us can set up those conditions on our own.
Thank you so much, Calli.
Calli Micale: You're welcome.
Evan Rosa: For the Life of the World is a production of the Yale Center for Faith and Culture at Yale Divinity School. This episode featured Calli Micale. Production assistance by Logan Ledman, Macie Bridge, and Kaylen Yun. And I'm Evan Rosa. I edit and produce the show.
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