LISTEN ON YOUR FAVORITE PLATFORM:
CW: disability, chronic illness
LISTEN ON YOUR FAVORITE PLATFORM:
CW: disability, chronic illness
Read John Swinton’s latest book, Becoming Friends of Time: Disability, Timefullness, and Gentle Discipleship.
Jean Vanier was a philosopher, writer, and the founder of L’Arche that exists for people with intellectual disabilities. To learn more about him, click here.
There are over 150 L’Arche Communities around the world. Learn more, here.
I’d love to have you join us for the Everything Happens Book Club as we read Becoming Human by Jean Vanier for the month of July. Click here to learn more.
To learn more about Tonya’s lived funeral and access the liturgy she used, check out the appendix of Becoming Friends of Time. Tonya and John co-wrote the last chapter together.
1. Dr. John Swinton is an ordained minister and professor in practical theology and pastoral care, although he started out as a mental health nurse. For most of his life, his vocation has been to be present with people who see the world differently. Describe someone in your life who sees the world differently from you. What has being present with them taught you about your purpose?
2. A common fear Kate hears is that people are afraid of losing who they are to illness, injury, or disability. John says this is because we assume that we make sense of ourselves by our selves. What or who helps you make sense of yourself? What are you afraid of losing if you lose this narrative?
3. In John’s book, Becoming Friends with Time, he explores the gifts and limits of time, including St. Augustine’s estimation that time is a creature—that is, created by God rather than acting upon God. In this way, John thinks time has a different purpose than simply marking the completion of tasks. Instead, it is an invitation to participate in the re-creation of the world. What do you think this means?
4. Most people think of time as linear and progressive. But people with dementia, for instance, no longer “tense” time as past, present, or future. Being with them can remind us of the profundity of the moment. Think of a time you felt truly in the moment. What helped you to slow down and find space?
5. Sometimes, we don’t choose to slow down; we’re forced to slow down. “When you’re cast into that,” John says, “you have to grieve. You have to recognize there’s something lost before you can find the joy of that moment.” Have you ever grieved a speed of life no longer available to you? If so, describe how you marked it. If not, describe what might change if you did.
6. John was friends with the late Jean Vanier, founder of the L’Arche community in which people with intellectual disabilities live among friends. What John loved most about Jean was his gentleness, a hand hold here, a long stare there. What is something that you do or would like to do more gently?
7. One of Jean’s central beliefs was that the essence of who you are is discovered not in your intellect, but the heart. What does the heart symbolize for you? How have you been taught to value the heart—or not—by your upbringing, education, employment, and/or relationships?
8. When John’s friend Tonya lost her sense of self to a significant brain incident, she took the theological position that her true identity was found “in Christ” and therefore still had value. To make this feel real, she and her community ritualized the end of her old way of life and the beginning of the new in a lived funeral. Where does your true identity originate? What rituals—religious or otherwise—have made this feel real for you?
9. John talks about how, over the course of lives, and depending on our circumstances, we are actually just temporarily abled. This means that “people who have significant disabilities are not radically different from everybody else… we all are moving in that direction of becoming differently abled.” What are you temporarily able to do? What are you no longer able to do? Does thinking of yourself and others this way give you hope or despair, empathy or apathy, or something else?
10. Church can, for Kate, feel like an uncomfortable place to be fragile. Whether injury or illness (coffee or cats), “we’re bringing so many things though these doors,” Kate says, “we need our vision of community to be big enough to see them all.” What is your vision for a community that moves at the speed of love?
Bonus: After listening to this week’s podcast, what part of Kate and John’s conversation resonated with you most? What insight will you carry with you?
Discussion Questions written by author, editor, and facilitator Erin S. Lane.
Kate Bowler: I’m Kate Bowler, and this is Everything Happens. I have always been obsessed with time, but I think I’m getting worse. Whenever I think about cancer, all I picture is a clock. Tick, tick. Then, I start to feel a little frantic. How can I get everything done? When is my next scan? Then I look at my son, my beautiful snake-obsessed sidekick, and I worry, “Am I doing enough? Shouldn’t he have already started learning piano? Why is this going by so quickly?” Tick, tick. Then, sorry mom and dad if you’re listening to this, but the fragility of my own health makes me completely obsessed with my parents now that they’re getting older. Have we taken all the trips we need to take? Have we said what we needed to say? Tick. See, I’m a monster. The weird thing is, time isn’t fixed. Time isn’t just hours and minutes. It can be a blink or an eternity. Ask any woman who’s had a baby. Oh, you know exactly how many hours you were in labor. Or, if you’re with your mom who has dementia, or your son with autism, who loves his rituals, these are different clocks altogether.
We keep time differently, depending on our season of life, or our personalities, or experiences. But, also depending on our abilities and disabilities, our possibilities and our limitations. Today, I’m speaking with Dr. John Swinton. He is an ordained minister and a professor in practical theology and pastoral care at the University of Aberdeen. He is a prolific author and leading expert in the field of disability theology, as well as the founder of the Centre of Spirituality, Health, and Disability. John, I’m so grateful that we’re speaking today.
John Swinton: No, thank you for the invitation. I’m looking forward to it.
K.B.: I’m so curious that you were not always a theologian or a minister, but you were a mental health nurse for 16 years. How did that draw you into what you do now?
J.S.: That’s true, I was. It’s really strange because when you look back at your life and try to work out what God wants from you, it very often makes no sense whatsoever. So the way I kind of try to make sense of my history and my present is that for most of my life, my nursing life, I kind of hung around with people who see the world differently. So I spent a lot of time with people with mental health challenges, people with intellectual disabilities, people with dementia. When you hang around with people who see the world differently for long enough, you start to see the world differently yourself. So that kind of shaped and formed the way in which I look at things, and the way in which I understand myself and the world.
J.S.: When I came into theology, which would’ve been, I don’t know, 1989 probably, early ’90s, that became my place of vocation, where I began to think, “Well, I’ve done all these things and I’ve thought about these things. How do I understand that with the perspective of what God is and who human beings are before God?” So my formation turned into my vocation. So these two things are, although they’re really different and sometimes dissonant, they’re absolutely necessary, because it means that as a theologian, I bring certain questions to the table that perhaps, if I’d just come through school, I had come through a different route, I wouldn’t have been asking them. So mysterious as journeys are when you’re in the thick of them, actually I think there’s some continuity between these nursing years and my theological years.
K.B.: Well, you do seem really focused on these big questions, not just who we are when we’re well, but then, who we are when we aren’t. I find that people tell me about their fears a lot, and one of the most common ones I hear is people saying that they’re really afraid that they’re going to lose who they are, whether it’s to illness, or injury, or disability. Why do you think that’s so frightening to people?
J.S.: I think it’s difficult, and when you see it particularly sharply in issues around brain damage and something like dementia, where people are more afraid of dementia than they are of cancer, for example. The reason for that is exactly as you say, that people think that this particular condition takes away your identity. The reason that we think that way is because we assume that the way in which we make sense of ourselves is a personal narrative, something that we do by ourselves. So when people use language like, “He or she is not the person they used to be,” what they’re really saying is that they no longer can tell the story they used to tell. So you get this idea of the self as an autobiographical self. As long as you can tell your story of where you’ve been, where you are, and where you’re going to be in the future, then you are who you are. But, if you can no longer tell that story then you cease to be. So people use that language, “He or she is not the person that they used to be.”
K.B.: That reminds me of an aging care facility that I heard of where, on the doors, there were life stories about the patients written there, so that nurses and anyone who came in could tell the story of who that person was beyond just the pills and the regimen and the changing of the sheets. According to the people who work there, it really shaped how they cared for those people, and maybe even how they loved them.
J.S.: That does. I think what that does is it gives a body a context. As professional caregivers come very late in somebody’s story, it’s very easy for them to only see what they see in this time of difficulty, in this time of change. What that kind of thing does is it reminds us that this is a person with a history, a person who has loved many people and been loved by many people, and continues to be loved by many people. But what it also does is it opens up the possibility that the person has a future. One of the things that sometimes concerns me, particularly in relation to something like dementia, is the assumption that what is important is always that which is past, rather than that which is present, or that which is to come in the future. So I think that kind of reminder of who you are not only locates a person as a person within a history, but also says, “Well, what can we do to ensure that this person has a good future that has possibilities even in the midst of the difficulties that they encounter?”
K.B.: Your latest book, Becoming Friends of Time, has a lovely, I would say, defense of thinking about the limits and gifts of time. What are some of the limits of the ways that … I mean, I’m kind of a monster when it comes to efficiency and schedules. What are some of the limits of this way of thinking about time?
J.S.: You mean the limits of your monstrosity?
K.B.: Yeah, be really specific about me. That’d be so great.
J.S.: I understand. But, it’s interesting because one of the things that I do push into that book is the way in which time is constructed in different contexts and different cultures even. So people walk more quickly in New York than they do in Paris, because they have a different understanding of what time is. But, theological time, time that God has, is really interesting, because the way that St. Augustine talks about time is, he says that, “Time is deeply disrupted.” You can see how much it overwhelms us sometimes, trying to keep to schedules and how to keep to time. So much so that we end up with depression, anxiety, and all sorts of difficulties, particularly within Western cultures. So Augustine’s keen to work out what God’s relationship is with time, because he thinks if God is implicated in time, then God changes. And God can’t change because he’s changeless, in Augustine’s opinion. So the way that he resolves that is by coming to the conclusion that time came into existence when God created the world.
J.S.: So time is a creature, something that’s part of creation. So when creation falls, time falls, which is why we have so much difficulty with controlling time, and with it, controlling us. The essence of what he says is that we need to redeem time and put it to its proper purposes. In other words, begin to recognize that some of the ways that we think about time in terms of punctuality and tasks may be important penultimately, we need to get things done, but ultimately, time has a different purpose, a different way of helping God to participate in God’s recreation of the world, in that sense. I think claiming that back is really important. That’s why something I learned a lot from working alongside people with profound intellectual disabilities, for example, because you have to slow down and take time for those things that the world considers to be trivial, because if you’re moving quickly in that context, then you’ll see nothing. But, if you slow down and recognize the significance of the moment, and the significance of slowness in that sense, then you’ll see a whole lot of things that you could never see if you’re living a life of speed.
K.B.: When we’re talking about people with dementia, in particular, can you give me just a sense of what kind of time they live in, and what it takes from people around them to live in that time with them?
J.S.: Yeah, well, normally we think of time as linear and progressive, moving from one period of history to the next period of history. But, when you get to that stage in your life where you’re living with dementia, that mode of time, or being able to tense time, to put it in past, or present, or future, it’s no longer available to you. So the present becomes extremely important. So being with people in the moment is really, really profoundly important, which is something that we never do. All of us are kind of driven by a particular understanding of time. We’re always watching the clock, or always planning for the future. It’s very difficult to slow down and just find that space within the present. But, that’s precisely the space that you need to inhabit if you’re going to be alongside people with advanced dementia.
K.B.: I don’t think I thought a lot about slowing down until I was forced to slow down, and then it was miserably slow. It was the space between scans, and just the inability to live in future tense forced me to notice things. But, that was one of the most intense educations that I’ve ever received in figuring out what to love, because now there’s a weird… there’s a weird slowness, especially. I try to do this thing where every day I notice what the big moment is and it’s almost always something hilarious my son has done. I was trying to have a meeting, a very important meeting, and I was on my phone, and he’s in his little jammies, and he crawled up on my lap and he looked deeply into my eyes and he whispered, “Is now a good time to talk about lizards?”
J.S.: And of course it was.
K.B.: You’re right, I need to get off this phone. Now is the right time to talk about lizards.
J.S.: That’s right. That’s great.
K.B.: I’ve been taught that there’s good things to be found if you really can just slow it down a bit.
J.S.: Yeah, and I think in your situation it was an enforced slowness, so there is a kind of grieving process to go through. You’re grieving for the speed, the type of time that you’re familiar with, and you find yourself cast into this world of slowness, which is not the same thing as always being in that world which, for many people with certain forms of disability, that’s just the world you live in. But, when you’re cast into that, you have to grieve. You have to recognize there’s something lost before you can find the joy of that moment. It sounds like your son is a very wise little fellow.
K.B.: Another reason why I’m so glad that we’re talking today is because of your friendship and love for the late John Vanier.
K.B.: What an incredible guy. For people who maybe haven’t heard of him, would you mind just giving a little snapshot of who he was and the life he lived?
J.S.: Well, John Vanier is the former of what’s known as the L’Arche community, which is French for The Ark. It’s a place of safety in the way that it originally worked itself out. But, John Vanier began his life in the Navy, in the Canadian Navy. What’s interesting there is that he began his life in a context of violence and war. He became disenfranchised with that, and entered into the Academy. He ended up doing a PhD studying Aristotle. So he moved from this context of war and violence into this highly intellectualized context of the Academy in Paris. During that period of his life, he explored various facilities and asylums for people with disabilities, and also I think people with mental health challenges would very often be lumped together, and he was absolutely shocked by the way in which people were treated. By the abject poverty that people lived in, by the violence that they were exposed to, by the abuse. He came to the conclusion that people with disabilities, in this case intellectual disabilities was what he was really talking about, are some of the most oppressed people in the world.
J.S.: So in response to that, he didn’t begin a new social or political movement. He engaged in a small gesture. What he did was he took three men with profound intellectual disabilities into his home in Trosly in France, and decided to live with them, not as carer and cared for, but as friends in the spirit of the Beatitudes and the friendships of Jesus. But, out of that small gesture, and that caring dynamic is really important because it’s not a place where people with disabilities are cared for, it’s a place where everyone is welcomed and lives together in the friendship… out of that small gesture, something like 135 or 136, I can’t remember off the top of my head, large communities have grown up across the world, all working with that dynamic of becoming friends and welcoming one another. So it’s that movement from war and violence to highly intellectualized life to a life of deep simplicity and timefulness that I think is absolutely fascinating about John Vanier’s journey. But, John Vanier himself is a pretty special person.
K.B.: I have this book club for listeners of this podcast, and our book club pick for this month is Vanier’s Becoming Human.
J.S.: Oh, yes.
K.B.: I think, in part, because I don’t think I’ve ever learned more about this category of precarity than from learning about his life and his works. How beautiful our loves can be when we assume that everyone, including ourselves, are delicate. What did you love most about him?
J.S.: I loved many things about him. But, what I loved most about him probably is his gentleness and his ability to do things that breakdown social barriers, that under normal circumstances are… I remember I met him in Birmingham in England two or three years ago. We had a conference at a discussion forum at a monastery, at a nunnery rather, in Birmingham. The nunnery was at the top of a hill and the big driveway that goes up to the monastery. I got out of my taxi and I was walking up the driveway and John Vanier came down the driveway, grabbed my hand, embraced me, and the two of us walked up that driveway holding hands like, I don’t know, like a strange old couple. Under normal circumstances, that wouldn’t be my norm.
K.B.: I’ll remember that for when we meet. I won’t go right for the double hand hold.
J.S.: You should try that. But, what struck me there was it was absolutely natural. I didn’t feel inhibited and I didn’t feel awkward doing something that I really normally would be inhibited and awkward. He had the ability to do that. He had the ability to look at you, sometimes he would look at you for 20 or 30 seconds, nobody looks at one another for that length of time, and opening that space and kind of looking so that he could see, rather than simply looking, so that he’d be… But, it’s the gentleness of John that’s the key, because one of the things that he draws attention to is that Jesus in the Beatitudes says, “I am gentle.” The goal is to create the universe and cast the stars into space as gentle.
J.S.: He always would challenge you to say, “Well, what would it look like if we did our politics gently, or we did our relationships gently, or we did our economics gently?” And, of course, that sounds ridiculous. However, that’s exactly what we’re commanded to do. So for John Vanier, I mean, the essence of who you are is not discovered in your intellect, but it’s discovered in your heart. So he says that the heart is the place of contact and relationship, the place where you engage one another, and the place where you engage, ultimately, God. So he discusses the practices of L’Arche and that kind of way of engaging with people as the way of the heart, that as we recognize who we are at the level of the heart, so we get past the kind of cultural baggage of intellect, that intellect is somehow the most important aspect of who we are, and being able to articulate that ourselves in particular ways is what makes us clever and important. So he says, “No, it’s their hearts that matter.” And you access the heart in a very different way from the way that you access the mind.
K.B.: Yeah. You write so beautifully too about when, for example, in brain injury, there’s even a more stark before and after in people’s lives, so that this can be really difficult for people who had a very strong sense of themselves as a brain, an intellect, someone who could engage, and then they are altered somehow. I wondered if you could tell me a bit about your friend, Tonya, and what happened to her and the lived funeral that helped her think through what she might yet be.
J.S.: Tonya had a significant brain incident, or brain damage, via a car crash which changed her personality in certain ways, so for example, certain colors that she used to like she didn’t like, certain foods she used to like. Some things that were kind of central to who she was no longer were available to her in that sense. One of the things that troubles people with brain damage is continuity of the self. One moment you can be one way of being in the world, and a very brief moment later, you can have all sorts of changes. That’s why suddenly, for Tonya, the idea of being in Christ is really important, because she had such a fragmentation of her story caused by this brain injury that actually the continuity that would be the natural continuity wasn’t there. So she had a theological position, a position to help her to understand who she was before God, and who she was as a human being and a continuing valued and loved person. But, that theological position required some way of making it pastorally significant because we can do all sorts of things.
K.B.: Yeah, but how do you make it feel real?
J.S.: That’s exactly right. So the way that she dealt with that was through ritual, so she had what she describes as a lived funeral. She gathered together her pastor, and her friends, and people from her church, and they stood beside a river. Each one of them had a handful of petals which they held in their hands. The pastor said some things about Tonya, her friends said some things about Tonya then and Tonya now. She said some things about Tonya then and now. So together they celebrated in that sense what was and recognized that although things had changed, this new phase in Tonya’s life was still valuable, even though there was a big shift. Then, they threw these petals into the river. The symbolism was that as the petals were washed down the river, so her old self in that sense was moved into a particular position, clearing way for the new self, which was still being created in that sense because she doesn’t know what she looks like, because she can’t look back in her history and predict the future. But, she can in community and with the help of her friends look towards the possibility of a hopeful future. So it’s that ritualized and significant change I think is important.
K.B.: I feel that too, sometimes, just the need to get permission to be changed.
K.B.: You still wish that you were the way you were before. I mean, I hear it all the time and I work in the Academy, so it’s a gerontocracy, so everyone has hip problems, but we hear it in this mourning that we have, she said with great respect of her colleagues who she loves. But, we’re always never exactly what we were, right? We lose stuff all the time.
J.S.: We do.
K.B.: I also really appreciated what you said about over the course of our lives, and depending on our circumstances, that we are actually just temporarily abled. We get little… we get moments where we can do things, and sometimes those are seasons and they pass, as opposed to always imagining there’s some perfect, ideal self that we can identify.
J.S.: Yeah, I think that’s right. I mean, the aging process shows that you’re always changing, and shifting, and not always for the better. But, also, there’s just the simple fact in life that all of us sit in the precipice of some disaster. No, it doesn’t take very much to change your life. I mean, I’m saying that to you, because you’ve experienced that. But, it doesn’t take much to change your life. So thinking about a disability as something that we all participate in in different ways is a beginning point. Now, you don’t want to get in the situation where you say, “Well, I wear eyeglasses, so therefore, I know what it’s like to be blind.” But, the fact that people who have significant disabilities are not radically different from everybody else is a really important beginning point, and that we all are moving in that direction of becoming differently abled. Some of these differences we’ll welcome, but some of them we won’t. That’s just how we deal with that.
K.B.: When I got sick, I found that the church wasn’t always my favorite place to be. I have an amazing pastor, and my church was wonderful, but it felt like kind of an uncomfortable place to be fragile. So I wonder, how can the church be more welcoming for those of us who are experiencing something life changing, like an illness, or a disability?
J.S.: Yeah. Well, I’ve been doing some research recently on mental health challenges, and how Christians live with severe mental health challenges. One of the things that’s come up in the context of major depression is how reluctant some congregations are to embrace sadness and how the way in which we structure our liturgy really assumes that happiness is equal to faithfulness. So we’ve kind of forgotten the tradition of lament, the ability to articulate sadness, and brokenness, and disappointment, and sometimes very difficult language, the psalms of lament (there’s more psalms of lament than any other psalm)…and to use that as a way of understanding both what it means to be in the context of worship, but also what it means to be a human being who is going through things that seem deeply unfair, and deeply unpleasant. We don’t really have that language. The same thing goes for those of us who live with chronic or enduring illness. There’s always an emphasis on healing but there’s very rarely an emphasis on how you can live well and live faithfully with enduring forms of illness, be that psychological or be that physical. So I think the beginning point is to recover lament and begin to really think what it means to worship together, bearing in mind the huge diversity of experiences that are in any congregation at any particular moment in time.
K.B.: Yeah, yeah, but also to allow me to take my coffee into the main service, that’s also a desire I have.
J.S.: Well, at my church you can take your cat in. There are no restrictions, and people do.
K.B.: But, in a way I think that’s a good vision. We’re bringing so many things through these doors, and we need our vision of community to be big enough to see them all.
K.B.: I’m so glad we got a chance to do this today. Thank you so much for talking with me.
J.S.: No, it’s been a real pleasure. Thank you, Kate.
K.B.: Carpe diem. Seize the day. I think I always thought that was an imperative about time. Go get them tiger. Get at it. Speed up already! Choose the passing lane. When I listen to John, I’m reminded to slow down. I need to stop flying by at the speed of anxiety and deadlines and exhaustion. As John writes, God’s time is gentle, generous. It moves at the speed of love. In God’s time there is enough, enough to sit down and draw a breath, to look more deeply into the eyes of people who we are lucky enough to love, and feel the secondhand of the clock stop ticking. I don’t know, that kind of time suddenly makes me feel a little more human, a little more able to see others who need to live like me in a different time, to live soul to soul, to ask ourselves, “Is now a good time to talk about lizards?”. I hope so.
K.B.: So many thanks goes to our amazing partners who make all this possible. The John Templeton Foundation, the Issachar Fund, the Lily Endowment, North Carolina Public Radio WUNC, Faith and Leadership, an online learning resource, and Duke Divinity School. Not to mention, my favorite team, Beverly Abel, Jessica Richie, and Be the Change Revolutions. I’d love to have you read along with the Everything Happens Book Club as we dive in John Vanier’s Becoming Human. Find me online @KateCBowler or at KateBowler.com for ways you can participate. I’d love to hear what you thought of this conversation. It would mean so much if you left a review on Apple Podcasts. This is Everything Happens with me, Kate Bowler.
I love when John Swinton says, “I kind of hung around with people who see the world differently.” His gently humorous, kind yet brilliant insights and responses are clearly shaped by this ability to respect, appreciate and even enjoy a wide range of human experiences. Great podcast, Kate!
When I tried to go back and listen to this episode with John Swinton it wouldn’t play online or on Apple Podcasts. Is there a problem with the file? I’ve never had this issue with any other episode. I really wanted to listen to it again and share it with some friends.
Oh wow – thanks so much for letting us know! We are working to get that resolved now!