June 7, 2021

Ep. 41 – Dr. John Swinton – Disability And Difference

  • The distinction between inclusion and belonging.
  • Diversity and normalcy.
  • The brain works itself out in community. It needs people.
  • The difference between curing and healing.

In this episode, mental health specialist Dr. John Swinton shares from his many years as a psychiatric nurse and advocate for community care and inclusion.
He says, “When you spend time with people who see the world differently, you begin to see the world differently,” and until we spend that time, we will continue to struggle with difference and diversity.

Episode Guest

Ep. 41 - Dr. John Swinton - Disability And Difference

Dr. John Swinton

Dr. Swinton is a mental health specialist and founder of the Center for Spirituality, Health and Disability at the University of Aberdeen in Scotland. Through his years as a mental health practitioner, John sees the western concept of time as difficult and even deadly for people with disabilities.

A worldview driven by the demands of the clock makes the lives of those with dementia, neurological and intellectual disabilities seem pointless, and he encourages us to walk slowly and time-fully with those whom society desires to leave behind.

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Transcript: Ep. 41 – Dr. John Swinton – Disability And Difference

Rachel Cram – Well, good morning from Canada, John Swinton.

Dr. John Swinton – Good morning from sunny Aberdeen in Scotland.

Rachel Cram – Is it Sunny?

Dr. John Swinton – Is actually a nice day.

Rachel Cram – Oh, good. Well Aberdeen is a beautiful spot. Roy and I looked it up on the map when we were setting up the time zones for this interview. And you are surrounded by a lot of green and then ocean.

Dr. John Swinton – It’s fantastic. We sit on the northeast coast of Scotland, so we have the great North Sea just on our doorsteps. But I live on the edge of the city, so I have the beach down maybe a mile or so away and then a few hundred yards from where I am is the countryside. It just rolls on forever. Just a nice place. It’s good.

Rachel Cram – With this year, though, you’re like the rest of the world, you’ve been in lockdown. I’m talking to you in your little closet studio that you’ve kind of lived in for the last year, I think. Right.

Dr. John Swinton – It’s my life. The only thing that changes is the face in the screen. Rest of my life is just exactly the same every day.

Rachel Cram – It’s been crazy. Well, you know, as I’m talking to you right now, I’m seeing your guitar in the background, and it’s making me chuckle inwardly because the listeners don’t know this, but we usually do a quick meet and greet the week before the interview. And last week, we met you for the first time and you came onto the screen and Roy was there, too, because he’s there for the tech check and he right away saw your guitar. It’s a Martin I think?

Dr. John Swinton – It’s a Martin. It is. Yes.

Rachel Cram – And before we had even introduced each other, said hello, you guys were talking guitars. Roy had grabbed the laptop and was showing you the multitude of guitars in the studio.

Rachel Cram – It’s what musicians do.

Dr. John Swinton – Well, I know. Well it’s a musician thing, right?

Rachel Cram – A musician thing.

Rachel Cram – The good outcome is that we are actually going to weave your music through this interview.

Dr. John Swinton – It’ll be interested to see what that looks like.

Rachel Cram – So we’re hoping you’re really good. We’ll find out.

Dr. John Swinton – Yeah, so am I. Well you will find out, that’s true.

Rachel Cram – Well, thank you so much for meeting today. I like to start interviews with a question just to ground us in an understanding of who you are as a person beyond your many professional platforms. And so John, I have a question for you. Aristotle stated. “Give me a child at seven and I will show you the adult.” And John I’m wondering, is there a story or experience from your childhood that you see as formative in the person that you are today?

Dr. John Swinton – Well there’s lots of stories from my childhood that are formative, but my father was a minister, and they say that minister sons and policeman sons are the most rebellious and that’s just about right. You’ve got a lot to live down and a lot to live up to and you feel that across the board.

So I was always made to go to church and made to go to this that and next thing and was never interested. But then I had this really strange experience. I had been out on the town with these four guys from a little village just up in the northeast of Scotland, and we’d had a wild night in Aberdeen. And I won’t give you the details because you may just switch me off just now. It was a teenager’s night.

And so I didn’t see them again for a good few months. And then I ended up working up in the same village and I met them again and they all were wandering about with Bibles under their arms. I thought this is really strange. I couldn’t quite believe it, but it turns out something had happened with them and they all had this strange transformation.

And when you see a change in somebody like that, people that you thought you knew suddenly begin to change into something completely different, if you can imagine the contrast between a wild night in Aberdeen and these guys wandering about with bibles under their arms, that shifting my perspective on things. And I think that’s maybe why I ended up being a practical theologian, because I see the importance of practice, doing things as well as believing things. That was quite a formative moment.

Rachel Cram – Well, the whole dynamic around raising kids to share our faith perspectives, it’s an interesting one isn’t it? Forcing kids to attend places of worship always seems counter intuitive to me. I’m not sure how often it works out. Our teens may need to try some different paths before they land on what will work for them.

Dr. John Swinton – Yeah, that’s exactly right. And also try to avoid making your kids do really boring things if you want them to flourish in your family. Being made to go to church every week was just terrible.

Rachel Cram – Well that transformative moment that you had is important. Kids kind of need to find their own way to that.

Dr. John Swinton – Yeah, that transformative moment is important because no matter how difficult you think things are for your kids, and I’ve got lots of kids, actually, there’s a lot more going on than you think. And there’s always that transformative moment where you see them differently.

Rachel Cram – You have five children, right?

Dr. John Swinton – I do have five children.

Rachel Cram – And have you raised them with that mindset then of not forcing them to go to church.

Dr. John Swinton – Yeah I have. When they were young I used to take them along to church but they all make their own decisions and they’ve all grown up into really nice people. They’re really good kids. They still are good kids. I’ve still got three of them at home, which is a bit unfortunate. I could do with a bit more space during lockdown.

But the interesting thing about our family, and your listeners may find this interesting is that four out of my five kids are adopted. And I’m adopted. My brother and sisters are adopted. My cousins are adopted. And so adoption is kind of the way that we do family. It’s just what everybody does.

And then twenty years ago, my wife became pregnant with, who’s now my youngest daughter, out of the blue. And now we have to explain to her how she’s the only one in her extended family that only has one mother. So she’ll be in therapy forever trying to work that out.

So we are quite an open family. People can come into our family and feel comfortable quite easily. And I think that’s something to do with the structure of our family,that kind of different dynamic that goes on within it.

Rachel Cram – That’s so interesting. I have six kids and my youngest three are adopted as well.

Dr. John Swinton – Oh, is that so.

Rachel Cram – Yeah. And I hear what you’re saying. I think that when you realize that you can love completely with your whole heart somebody who is not blood related to you, who didn’t come out of my body, it does change things because we absolutely are capable of doing that as human beings.

Thanks for telling me that. Well, as a rapid over-fire of your adult work and family life, I think you actually started out as a truck driver. Is that right?

Dr. John Swinton – I did. Yeah, I did do that. I drove a van, then a truck. We call them lorries here.

Rachel Cram – A lorry driver. Right.

Dr. John Swinton – And it’s the best job I’ve had in some ways, because, you know, you go out in the morning, you do your job and you come back again and you relax with your family or you go out and visit your friends. You don’t carry things. And I always find that quite apart from the fact that I just like driving, actually the idea of just coming home and not having to think about things. I do look back at that and say these were good days.

Rachel Cram – And regarding “leaving it at home,” I imagine you did kind of leave that behind when you stopped driving a lorry, because from there you became a psych nurse.

Dr. John Swinton – I did. I was a mental health nurse for 16 years. And to be honest with you, it would have been impossible for me to do very much of what I’ve done now had I not had these formative years, so they’re very important years in a lot of ways.

Rachel Cram – And now you’re a professor, writer, theologian, and the focus of your work is health, disability and time so it seems you’ve distinctly moved from the kind of career where you leave your work at work.

Dr. John Swinton – Well, I have, but it drives you nuts though, because you can’t get away from your own thoughts. So I get paid to think. And once you get into these kinds of complicated and interesting conversations, you find yourself waking up in the middle of night, still having that same conversation with yourself. So I’ve been a chronic insomniac since the day I started my PhD.

Rachel Cram – Well, clearly you’re fulfilling your job description on ‘thinking’ John, because over the last 20 years you’ve written over 10 books centered around what you call, “The human experience of disability.” And in your most recent book, you said this, and I’m going to use this to launch you into some questions. You said, “As a nurse working in the area of mental health, I frequently encounter people whose lives have been radically changed by stroke, encroaching brain tumors or traumatic brain injury.” And then you go on to say that, “The question of who they were after their incident or accident and the continuity of who they are now was always a source of uncertainty, tension, confusion and grief.”

I’m intrigued John, by how you address these questions of ‘Who we are” and what you call “The big story of the brain?” Can you describe what you mean by that? What is the big story of the brain?

Dr. John Swinton – Yeah. One of the problems, I think, with the kind of culture that we have in the western world, at least, is that the things that we prioritize are things like intellect, reason, clarity of thinking, speed of thinking, these things. And we incorporate that not only into things that we value, but also implicitly or explicitly into things that we assumed to be essential for our humanness. And when you encounter a condition such as dementia or stroke or brain damage, which takes away some of these things, you know, our ability to think quickly or to cognate in the way that we used to, the temptation is to begin to depersonalize people, to begin to think, well, this person has brain damage, so therefore they can’t be the person that they were before. And you hear people saying that quite a lot, particularly in relation to people with dementia. And, you know, he or she is not the person they were previously. Which means the assumption there is that you are the story you tell about yourself. You are your memory. You are your brain.

But of course, when you think about it, yes, it’s important, we need our brains to breathe and to be on the planet. But we need relationships. We need community. We need other people to enable us to function well. And even interestingly, we need other people for our brains to develop effectively. You know, some of these stories that you hear about kids who have been locked away for the first nine years of their lives and then they’re discovered and they’re rescued and then they come back into community. Oftentimes, people can’t speak. And the reason they can’t speak is because in order for the piece of your brain to be processing speech, you need to be spoken to. So even with the brain, it doesn’t just function by itself. It needs other people. It’s something that works itself out in community. And the brain is plastic. It responds to experience. It responds to what’s happening. It’s always changing and always shifting around.

So the idea that it’s just your individual brain inside your cranium makes sense culturally but actually, that’s just not the way that the brain works and it’s certainly not the way a human being works.

So when you think about that more extended understanding of who you are, then the questions of what happens when you begin to lose your identity because of brain damage, it becomes something that belongs to the community. It’s not just a loss that you have. The community loses something, but the community also holds you. It holds you in your identity, it holds you in that place of safety, that place of value, even though you may be difficult and confused and all these things.

So it’s not so much just to say that you’re not your brain, that your brain’s not important. But it’s not all that there is.

Musical interlude #1 13:15

Rachel Cram – When there’s a brain injury or a loss of identity for loved ones, I think the sadness and the depth of that loss can override our capacity to respond in the most respectful, helpful, humane manner. And I’m intrigued by your phrase, “the brain works itself out in community.” Can you give an example of where a community’s response to a person’s loss of identity has been to hold them in that place of safety and value and then, what was the result?

Dr. John Swinton – Yeah, that’s complicated. One of my colleagues who’s a hospital chaplain works specifically with people who live with dementia. And she loves it there because she sees it as a challenge in the sense that she wants to challenge society’s view that people actually are not there. So her relationships open up different spaces for people.

But she talks about her encounter with one woman who has advanced dementia, called Beatrice. Now Beatrice was an elderly woman in her 90s with advanced dementia, and she was oftentimes completely unresponsive. And she said, “I sat down with Beatrice and I said, Beatrice, I’d like to pray with you.”

So she began to say the Lord’s Prayer. And she said, “Our father,” that’s as far as she got. And then Beatrice started to pray and she prayed and prayed and prayed and she wouldn’t stop praying for about 15 minutes. And she couldn’t quite work out some of the words that she was saying, but she was very earnest and she was doing something that was completely surprising.

The point there would be that your natural assumption, the assumption of many people that encounter somebody like Beatrice is to think, “Well, there’s nothing that can be done.” But if you have a certain type of relationship, if you’re able to be with her in that moment and to open up that line of communication, this case through something that she remembers well, then all sorts of surprising things can happen. But left on her own, nothing happens.

There’s some interesting research that points out that if someone with dementia is left to their own devices over time, it actually has an impact on their neurological structure. Because they’re not socializing the neurons and the synopsis of the brain are not working particularly well and so actually exacerbates their dementia. And so they’ve already got this condition, but it’s made worse because nobody’s been in contact with them.

Rachel Cram – For many of us, we are going to experience people that we love with some form of brain trauma, some sort of loss of who we thought that they were before. When we come into these situations of change, you used the phrase, “Be with them in that moment.” I know that’s a big part of your work. What makes this such a challenge for us as people and as a culture?

Dr. John Swinton – Yeah, one of the problems for modern people like you and I is that we have a particular relationship with time, which is not very healthy. And so if you think about it, you know, we buy time, we use time, we waste time. Everything that you do with your money in a capitalist economy, you do with your time. And so time becomes a commodity, becomes something like a packet of Cornflakes or a Snickers bar or whatever it is. It’s like that, you buy it and you sell it. But that’s a really unhealthy way to live your life because we’re always looking to the future and we rarely notice what’s happening in the present, because if you’re always looking at the next task, you have to do or the next place you have to be in, you don’t actually notice what’s happening in the present.

Now, if you’re with people with profound intellectual disabilities, you know, people who have limited movement and have limited cognition, if you take that understanding of time, and place that into your relationships with that group of people, then it’s going to be disastrous. You’re going to be so demanding that they move quickly you actually forget that in the slowness of the moment, being with these individuals, you can learn things, you can see things, you can see a different mode of time. You can become aware of the present. And when you can become aware of the present, you begin to see all sorts of things.

Rachel Cram – John, there’s the familiar phrase, “time is money.” We hear that all the time. What would be the Dr. John Swinton version of that? What would be your rendition?

Dr. John Swinton – Time is love. Or time is for love, would be the way I would look at it. I know that sounds like a bit of an old hippie but I’m not uncomfortable with being an old hippie. But if that’s the orientation to your usage of time, then I think you begin to see things differently.

There’s a spiritual tradition called the sacrament of the present moment, which is where you suddenly step back from where you are and recognize that every breath you have, every gift that’s been given to you, is a gift by God. And so you suddenly realize that the time that you have, the time that you’re given is a gift and that your task is to give that gift of time to everybody around you. So when you take that kind of approach to somebody who has brain damage for whatever reason, then you can begin to see, if you like, sacramental moments. You suddenly, just know that there’s something going on that wasn’t before. If you’re moving too quickly, you miss all that. You’ll get your tasks done, you’ll get things done well and effectively, but you’ll miss the person in the midst of that. So that idea of slowing down and taking time for those things that, you know, the world considers to be trivial is really, really important.

Rachel Cram – So “sacramental moments,” that’s a great phrase. These are about being present in the moment. Can you say a little bit more about why that perspective is important?

Dr. John Swinton – It’s important in relation to what we’re talking about but in general, it’s important because one of the big curses of our time is we’re developing cultures of absence.

Rachel Cram – What does a culture of absence look like?

Dr. John Swinton – Well, if you go into a restaurant you see people sitting around the same table with everybody on their own phone. So they’re present but absent. So they’re not present to the people around them, they’re actually absent. And social media does that. It kind of shapes and forms us to be naturally absent.

And I think shifting in our understanding of time and beginning to think about ideas like the sacrament at the present moment helps us to be present not just in a caring context, but as human beings. It helps us just to be present, to recognize the significance of really being in the room and of the room.

Musical interlude #2 20:14

Rachel Cram – I think this conversation, even with what you just said about being in the room and of the room, it resonates on so many different levels, even beyond disability. You say, “Being human is a broad range of possibilities.” What it means to be human and how we show up in the room is a really important conversation when you’re considering race, culture, gender, sexual orientation. Do you see conversation about disability as part of that broader range of possibilities?

Dr. John Swinton – Yeah, I do. You know, often we talk about ‘What does it mean to be human,’ as if it’s just one thing. And the person I learned to think differently about that was from a English practical theologian called John Hull, who’s written some really interesting work on blindness. Now, John Hull was an educator and a theologian who in his early 50s began to lose his sight and eventually became completely blind. And he describes the experience of going blind and what that means to him. When he first completely lost his sight he was trapped inside himself because, as a sighted person, you’re always looking out, you’re seeing things around you. But his first response was, he can no longer do that. So he was very insular.

And so his whole world was turned upside down. But then he began to change his perspective and he says that, you know, “I began to realize that being sighted was just one way of being a human being.”

And there are a lot of things that he began to learn from his blindness. So his hands, for example, became not just things to lift up and write with, but actually the primary sensory organs that he felt his children’s face with because he knew he would never see his children’s face again. But he learned over time to see the beauty of his children by touching them, by feeling them, by moving his hands in a different way.

And so he began to see that actually being sighted is only one way of being human. There are lots of other ways because the things that he learned as a blind person, you know how to describe colors, how to understand sounds differently, are things that a sighted person couldn’t do. So he brought to the table understandings of the world that weren’t there before. And his key insight was that, “I began to realize that being human was a wide range of possibilities rather than a single thing.”

And I think there’s a deep wisdom of that for the way that we encounter difference today, would that be race or gender, whatever it is, rather than thinking that there’s a central norm that we all have to push towards, if we think about this idea of being human as a wide range of possibilities, we can only understand what it means to be a human being if we take into consideration all of these possibilities, if we listen to all of these different voices. And eventually we’ll begin to have this beautiful, rich tapestry of humanness within which hopefully we can find a sense of belonging and a sense of being together.

So I think that insight from studying disability and John Hull in particular, is invaluable for the politics of difference today.

Rachel Cram – “A beautiful rich tapestry of humanness” that is a wonderful descriptive hope. I love that. Thank you John.

Dr. John Swinton – Pleasure. These are great questions.

Rachel Cram – Well, these are important topics. As you were sharing this story about blindness, and then in a larger conversation about disability, there’s a marked contrast between finding a cure and finding healing. You say this, let me just find it here. You say, “Healing is possible even if cure is not,” and that healing comes through, and this is what you say, “finding a place in the world where one is comfortable with who one is and what one is in the world for.”

Dr. John Swinton – Yeah, I think sometimes we conflate healing and curing in a way that’s unhelpful. So curing is, you can maybe say that medicine likes curing because when you identify some broken part or some damaged part and you use your therapeutic skills to fix and mend that and everybody wants that. Nothing wrong with curing.

But healing is a different thing. Healing is to do with your personal sense of well being, your feeling of being loved and cared for, your sense of having a meaning and a purpose that drives you through even in the midst of difficulties. And so healing is a dynamic that pushes you to find yourself, even in the midst of the most difficult situations.

So if you’re living, for example, with enduring schizophrenia, at one level, it’s a very difficult condition to live with, a very difficult condition to find cure for, in that sense. But you can find relationships, you can find community, you can find peace, you can find purpose. If others will give you value, you can find value. In that sense, you can find healing. So I think it’s a very useful distinction between curing and healing at that level.

Rachel Cram – So with physical or mental health, cure is not alway a possibility but healing is always possible. Is that what you’re saying?

Dr. John Swinton – Yeah, I think that’s absolutely right. And it’s interesting within the area of mental health, there is what’s called the recovery movement. And the recovery movement takes the term recovery from psychiatry, but gives it new meaning.

So within the psychiatric context ‘to recover’ means to get over your condition and to no longer have depression or bipolar disorder, whatever it is. But the recovery movement says, “No, a better way of thinking about recovery is that even in the midst of the difficulties you’re having, you can find meaning and purpose and hope and value, and you can find a sense of future which suits you.”

So I can recover even if I’m still in the midst of my hallucinations or in the midst of my depression. I can still recover because I can hold on to that possibility that I can do the best that I can, I can be the best me that I can, within this situation.

Now that moves you away from the idea that you’re always ill because one of the problems with the way that we think, particularly in relation to enduring mental health challenges, is that somebody is always ill. You just have to get used to that, take your medication. You’re always ill.

But if you begin to take that healing dynamic and that recovery dynamic, then you’re not always ill. You can be well in the midst of illness.

Rachel Cram – I think this way of thinking that you’re describing, creates a big cultural shift. You’ve said, “Culture fools you into seeing the world in a certain way. When you spend time with people who see the world differently, you start to see the world differently.”

Can I ask you a two part question on that?

Dr. John Swinton – You may.

Rachel Cram – First of all, can I ask you from the perspective of mental health, how is our culture fooling us into seeing the world?

Dr. John Swinton – Well, there’s two ways I would address that. And the first thing is just what I mentioned earlier on, that the prioritization of intellect and reason is quite a new way of seeing the world, but it makes it very difficult for people for whom that’s not the best way they function in the world. People for whom community and friendship and love are equally as valuable.

So if you’re a society for example, which really prioritized the issues of community and love, rather than simply intellect, then you wouldn’t necessarily need the label of intellectual disability anymore because it wouldn’t be a disability. People may need help to do certain things, but the meaning of that term, ‘intellectual disability,’ would be redundant because that’s not the way we would be thinking. So the culture constructs it in that way.

But the second way is quite interesting. I try not to go on too long with this, but there’s a really interesting British, Scottish actually psychiatrist called Iain McGilchrist, and he looks at the brain and he says, “Historically within neurology, we make the distinction that the right brain is creative and arty and the left brain is mathematics and science.”

He says, “It doesn’t work that way.” He says, “Actually, both sides of the brain are necessary for imagination and creativity and mathematics and science.”

He says, “If you can imagine a flock of sparrows on a pebbled beach looking for food. They need to have a concentrated attention to be able to find their food in amongst the pebbles, but they also have to have an awareness that helps them to pay attention to the possibility that there’s a predator there. Otherwise, while they’re looking for their own lunch they become somebody else’s lunch,” as he puts it.

And he says that what’s happened with human beings is that over time we’ve learned to pay attention to the world in a particular way, western human beings in particular. That grasping left-brained way of looking at things has become the way that we see the world and that other dimension of imagination, creativity, has been pushed into the background.

And he says, over time we’ve distorted the way that the brain functions. And now it looks to us as if this kind of concentrated particular type of intellect and reason is the way that human beings should be. But actually, that’s just because we’ve forgotten about the other dimensions.

He says, “We need to use our brains, the fullness of our brains. Of course, it’s important to have science and reason and intellect but it’s also important to have imagination, creativity, community and so forth.” And so he pushes us to think about a counterculture way of thinking about the world, which means using both dimensions of your brain. And when you do that, then we become more compassionate, more holistic people.

Rachel Cram – Well, it’s sad to think that becoming compassionate and holistic is countercultural.

Dr. John Swinton – Yeah.

Musical Interlude #3 30:22

Thanks for listening to family 360 and our conversation with author, professor and theologian Dr. John Swinton.

Our next episode is with Dr. Bal Pawa, author of bestseller The Mind-Body Cure – Healing Pain, Anxiety, and Fatigue by Controlling Chronic Stress. She shares the story of a tragic car accident that changed her life and her perceptions on the pursuit of health and wellness.

And now back to our conversation with Dr. Swinton as he describes how we expand our view to possibilities when we spend time with people who see the world differently.

Rachel Cram – Here’s the second part of my question. In your quote you said, “When you spend time with people who see the world differently, you start to see the world differently.”

I think this kind of “rich tapestry appreciation for humanity” that you’re speaking about, does occur in loving families. I think one of the gifts of a family is that you spend a lifetime with people who have their own disorders, their own abnormalities. But because there’s so much love and commitment to their well-being we’re less presumptive in claiming what “order” is or what “normality” is. And I think that is part of what opens us up to all these possibilities. I don’t want to be preaching your point, though.

Dr. John Swinton – A couple of things I’d say there. The origins of that statement was that in terms of my personal and professional formation, spending time with people who see the world differently means I learned over time, implicitly and explicitly, to see the world differently. It wasn’t an educational process that I sat down and learned from a textbook. It was simply when you are open to the strangeness around you, it suddenly stops being strange and then you become somebody who lives and sees the world in a different way.

And I think sometimes parenting is just like that, that sometimes the expectations that we have as parents are probably based on our own fantasies, our own ideas or our own upbringing. And so, you know, if I think of it in my own situation, my mom and my dad, you know, their idea of a successful child was somebody who had a good education and got a decent job. Whereas my expectations as a parent is to have a good job is one you like. It doesn’t really matter what it is you do. And that’s partly because I push against my parents

Rachel Cram – As we all do.

Dr. John Swinton – Exactly. And in the end, you’re right, it does come down to the issue of love.

There’s a really interesting scholar, Thomas Aquinas, who had a definition of love that I use all the time. And he says, “Love is saying to the other person, ‘It’s good that you exist. I’m glad that you’re here.’”

And I think there’s something powerful about that in relation to parenting, because at a minimum, we want to say to our children. “It’s good that you exist. I’m glad that you’re here.” We don’t always feel that way. But then love is more than an emotion. It’s an attitude. It’s a way of being in the world within which, “It’s good that you exist. I’m glad that you are here,” reminds us of the necessity of love to both bring us together in a relationship, but also to make sure that that relationship isn’t overwhelmed or overpowered by my desire for my child or my husband or whomsoever it may be.

Rachel Cram – Thank you. These are very generous answers. I realize we’ve side stepped off disabilities but I really appreciate how you’re tying all this in.

Dr. John Swinton – I’m Ok

Rachel Cram – Ok, well then, if coming together like this is complicated even in families where there is hopefully, a commitment to time to spend with each other so that we can see each other differently, what are the challenges of the wider society offering that kind of time?

Dr. John Swinton – It’s a good question. Maybe I can answer that with an example. Many years ago I worked as a mental health chaplain, working with people who were moving from the psychiatric institution into the community. And my task was to help them to find a spiritual home with a religious community. And I worked primarily with people who were living with schizophrenia. And I remember one young guy, his name was Tony, who I spent a lot of time with and I would take him along to what was probably quite a welcoming, open church in the city. And sometimes he would like it and sometimes he would settle, sometimes he wouldn’t settle. And so for him, it was kind of an ambiguous place. But the key thing there was that that particular community created a space where friendship was possible. In other words, he knew that it was a safe space where he could go to, and where he could actually in principle, find friendships and relationships and a sense of belonging. I think creating spaces where friendship is a possibility is what we can do. So being open to that possibility, a space where people who are different can come and then you can find healing or find a relationship in that way, but they don’t have to be there.

And the second thing connected with that is perseverance. My job was to stick with him over time as he tried to do these things, as he tried to get into these kinds of communities. And although sometimes he didn’t exactly appreciate my presence and made that quite clear, my job in that case, but also my vocation was to persevere, to always be available to him as a friend, as a source of healing. And even when he rejected the communities that we were involved with he knew that he could fall back on me to be there, even though, you know, sometimes he was a bit abusive, but he knew I’d still be there. So I did that in a professional capacity but that’s what I think we have to do, just as people.

Rachel Cram – Over the last few decades there’s an increasing push toward inclusion. And I think as individuals, we tend to see ourselves as inclusive, wanting to broaden our scope of understanding by rubbing shoulders with a variety of people and perspectives like you encourage people to do. I know you struggle with the limitations of a word like inclusion. What are the limitations of inclusion? Where does that fail people like Tony? People that are really needing community.

Dr. John Swinton – Yeah, there is a distinction, an important distinction between inclusion and belonging. One guy I worked alongside was really, really keen to go to church. And he went along to church, and he went there for round about six weeks and during that time, nobody spoke to him. He was in a wheelchair. One person patted him on the head as he was going by and that was all the contact that they had the whole time. So he eventually left and never went back.

Now that community included him. So he was there. There was plenty of ramps for his wheelchairs and so on and so forth. But nobody really cared. In other words, he was included, but he didn’t belong. So to belong, people have to value you. People have to want you to be there and people have to miss you when you’re not there. So to belong, you need to be missed.

So the difference between inclusion and belonging is, inclusion is a legal term that means that we have to do certain things to make places accessible for particular groups of people. That’s a good thing because we need laws and regulations and we need human rights legislation to make sure that people are protected. But on it’s own it’s just not enough because it can’t make people love people.

If you think about love, “It’s good that you exist. I’m glad that you’re here,” legislation can’t do that. You need something else and that’s something else, is to create a community of belonging which is much more engaged, much more committed to one another and much more of a place where you can find your space and be respected and valued for who you are.

Musical interlude #4 38:40

Rachel Cram – I think to live life like that, to be a community like that, it requires a restructuring of our gathering places, to create that opportunity for belonging. Earlier you mentioned ‘the culture of absence’ and shifting our understanding of time in order to address that culture. In your writing you say this about time. You say, “Western time is clock time. Time is a marker of our productivity. The desirable state of human beings is to be able to efficiently handle the economics of time in a world that adores speed and worships efficiency. This is woven into what we consider to be normal and abnormal.”

So John, as someone who’s only lived only with Western time myself, what’s our blind spot with time?

Dr. John Swinton – Yeah, well, across cultures and historically, there’s been all sorts of different times. You know, if you take the idea of the clock, for example, the clock was created by the monks to mark the times of the spiritual practices, you know, so it would go off in the morning and then halfway through the morning and in each of these times they would pray or they would read scripture, they would chant or they would meditate. So time was intended for spiritual purposes. And the interesting thing about the clocks in the early days was that they only had one hand. And so there was no second hand. So there were no minutes and no seconds. Just these marks, these spiritual makes of the day.

Rachel Cram – This is how clocks were first created?

Dr. John Swinton – The first mechanistic clocks. And so when the clocks, mechanical clocks, moved out into the broader society, there was an addition of the second hand. And with the coming of the second hand, you have minutes, you have seconds, and you can be punctual. You can be on time for things in a quite different way, a more specific way than you could be if you’re simply waiting for the movement of God through the day.

And then if you take that into the context of capitalism, where time and money come together and the ticking of the clock actually counts as a space where you can make money, you can see how time begins to be adopted by society in quite a different way.

So if you’re a rural peasant and you don’t have a clock, then you’re going by the seasons. So you have a different kind of relationship with time and with nature and with the environment. With the coming of the clock, the second hand of the clock, all that changes and now time becomes for money rather than simply for the production of enough for yourself. It becomes for money so you can sell to other people and lots and lots and lots and lots of other people. And that’s a very brief history obviously.

That’s the kind of time we live in and that’s the way we think about time very often in the social and political realms, but also within the personal realms, that it always has to be for something. Whereas in some cultures, time is just there. It’s a place to live in, it’s a place to be in.

And so Aboriginal time is quite different from African times, quite different from Japanese time. And there’s a lot of really interesting research done on the geography of time, with time understood differently across cultures. People walk faster in New York than they do in Milan, these kinds of things.

Rachel Cram – Yeah. You have said that for people with disabilities, and again, I think we can probably extrapolate this to a wide range of us as human beings; you’ve said, “time is not only damaging, it can be deadly.”

Do you see in these other cultures where time is not western clock time, do they have more space for the kind of belonging, inclusion that we really want to see in the western world?

Dr. John Swinton – Well, it’s interesting. That’s a great question. I’ve been doing a lot of work recently on mental health challenges. And one of the interesting things is that you’re much more likely to recover from schizophrenia if you live in certain parts of Africa, than if you live in downtown Los Angeles. And the reason for that is that a western model of something like schizophrenia is that you have an enduring mental illness, you’re going to have to take medication for the rest of your life. You’re never really going to be able to work again. You’re going to be a patient forever.

Whereas in certain parts of Africa and also in some parts of India, they have a different understanding of community, different understanding of the diagnosis of schizophrenia. So people will continue to be part of the community. They’re not stigmatized in the way that you might be in some other context. You still have a job. You still actively participate in the community and people get better. It’s a much better environment for people to do that because it’s slower, there’s more focus, there’s a community and you’re not rejected and stigmatized in the way that you are in certain other parts of the world. So that’s one example of the way a culture really does make a difference.

That plus the fact that rising rates of anxiety and depression across the Western world, incorporated with people taking their lives at a horribly frequent rate, indicates they were doing something wrong with the way we’re thinking about time and the pressures of culture.

Rachel Cram – Yeah, well, this topic keeps coming up again and again laying out that this is a problem but we haven’t really had a clear way forward. And as I read your books and listen to your lectures, perhaps we need to step away from western clock time. But that’s very complicated.

There’s a quote by Mahatma Gandhi that’s inspired Family 360, and I quote it to guests with some regularity and I think it might fit in here John. Gandhi said, “If we want to reach peace in the world, we must begin with the children.”

And John, you have five children. You have a grandchild. I know this kind of puts you on the spot, but issues of time; what can we as parents do to begin with the children if we’re going to hold time in this different way?

Dr. John Swinton – Have a lockdown.

Rachel Cram – A pandemic. Oh, that was not the answer I was hoping for. OK, but build on that, OK?

Dr. John Swinton – To be perfectly honest with you, I haven’t spent as much time with my kids in years, than I have over the past year or so.

Rachel Cram – Through the pandemic.

Dr. John Swinton – Yeah, some of that’s been good, some of that’s been bad. When you’re together too much it gets complicated, but it did bring me to realize the preciousness of the time that you have with your kids, because they’re not there for very long. You only have a major voice in your kid’s life for a relatively short period of time, at least explicitly when you hope that whatever you say to them they’ll take in the good ways into their lives.

And so my sense would be, that what I’ve learned from the pandemic, which maybe pushes into your question, is take time to be with your kids. Take time to think with them, take time to work out what’s going on in their lives instead of what you would want to be going on in their lives and then just find that space regularly to sit down, have a meal and make sure that you’re part of their lives, but you’re not overpowering their lives.

And I think these times are precious. So value it, notice it because you won’t get it back. But also be pleased about it, because that time you spend will transform their lives. They may not articulate it in quite that way, but it will do.

Rachel Cram – I love that advice and I feel like I want to see if I can get even more from you from that, because we really do need to shift how we handle time in our western culture and I absolutely agree that spending time with our kids, slowing it down, the pandemic has made us do that. I feel like we need something more radical than that.

Dr. John Swinton – Yeah, well, it’s difficult because the only person that can model something more radical is yourself. You know, Michael Jackson once said, “If you want to make the world a better place, take a look at yourself and make that change.” And then there was an, “Ooh!” at the end.

Rachel Cram – Maybe we can weave that into music here.

Dr. John Swinton – Exactly. But it’s true actually. I mean, because if we wait around for other people to do it, it will never happen. So I think that rather than thinking, “What can other people do?” begin to make the change in ourselves.

So those of us who are involved with communities, be that football teams, soccer teams, schools, families, whatever it is, religious communities. We need to think about how we can make these places manifest, show this radical new time that we desire, because unless people see it, they’re not going to know what it means. It’s a nice idea but it’s a bit like my experience with my friends after my wild night out in Aberdeen. Unless I had seen them my whole life might have been completely different. But when I saw them and saw the possibility of a change, then I was able to engage with that. And I think if we really take it seriously and think this is important, that we need to change ourselves, but then we need to push that into thinking about how can we change our communities. Even small changes around our communities so that people can see the difference.

Rachel Cram – It’s kind of tough to beat your Micheal Jackson rendition as a wrap up but I’ll give you a chance to do that because I think we have just a little bit of time left. So I’m going to reflect back on your statement, “Being human is a broad range of possibilities.”

John, can you share a last thought on how we step into life in a way that allows us to see the possibilities of ourselves and of others belonging in a more meaningful and inclusive way?

Dr. John Swinton – Well, I guess we need to begin by recognizing that very often we don’t do that. To go back to some of the things that we’ve talked about in relation to disability, one of the things that disability, intellectual disability in particular reminds us is that the culture that we live in, the norms that we normally assume to be normal, the priorities that we have in life, are actually probably rather illusory, and that there are other ways in which we can look at the world, but we can only look at these other ways if we are prepared to actually open our eyes and notice other people.

Noticing means that you have to respect the other person in their difference and act in a hospitable manner. So, if we take that idea of love, you know, “It’s good that you exist and I’m glad that you’re here,” and use that as a lens to audit ourselves and see who it is that we think, “We’re glad exists and we’re glad that they’re here,” and those people who we’re not, then that’s the beginning point for changing.

So a self-audit based on love might be a place to notice things and noticing things is a beginning point for change.

Rachel Cram – Hmm. Well, I thank you for bringing your work and wisdom to this conversation so that we can notice these things. I found this a very interesting conversation. John, I thank you so much for your time today. It’s been such a pleasure to talk to you and I am so excited to hear your music and to weave it through this interview. So turn around. Grab that guitar. And start playing.

Dr. John Swinton – I’m on my way.

Rachel Cram – Thank you, I hope you have a great rest of your day.

Dr. John Swinton – Thank you both for what’s been a really interesting afternoon. So I appreciate that.

Roy Salmond – Thank you for your wonderful answers.

Episode 27