Disability and True Belonging

SIMON SMART: John, in your work you talk a lot about identity and what it means to be ‘me’ in some sort of continuous sense. I’m just wondering about this issue, in our Western culture, of rising levels of anxiety and depression, and wonder whether your work on dementia could shed a light on this area and the ways we think about our identity?

JOHN SWINTON: I think, when it comes to personal identity, we have a tendency to think that it’s something we own. And that’s the way most of us think about our own identity, and therefore if you have something like dementia, and you start to forget certain memories about yourself, then you have that sense that you’re losing your identity. But of course, you’re not losing your identity, because your identity is always sitting somewhere else anyway, and even your memory if you think about it – where’s your memory? If I have to remember anything about when I was a child – I have to ask my mother because I can’t remember now – but when I remember then I create a little story about who I was, but actually she holds that memory for me. And likewise, why else do we have computers, why else do we write notes? So your memory is all over the place, and likewise your identity is all over the place.

In relation to anxiety and depression, it depends whether you think these are identity issues or whether you think these are issues that relate to the values that we assume to be normal in terms of achieving in society, because there is an inbuilt sense of anxiety and sadness in any culture that assumes that success means doing the best that you can, and achieving the goals that society expects of you, which are normally financial, and are normally quite hierarchically structured. So as soon as you meet somebody you say to them, “What do you do?”, and then you place them in a hierarchy. And if you say, “Well, I’m unemployed”, then it’s not just you haven’t got a job, it means you’re really devalued by the way that we structure society.

SIMON SMART: Now we sometimes think that including disabled people involves putting a ramp in, and a disabled toilet into a building, and thinking that’s enough. But I wonder if you could comment on the difference between inclusion and belonging?

JOHN SWINTON: To be included you just need to be in the place. So you just have to have ramps to let people in, or big prints, or facilities for wheelchairs, or whatever way that you want that to run. And that’s sustained by law and policy, and it’s vital, in that sense, in order that people with disabilities can be in the room, both physically and psychologically. But the problem with inclusion is you don’t have to care. It’s a technical thing – you just have to do it. But to belong, you have to be missed. In other words, to belong you have to have a space that is your own, a space where when you’re not there people long for you, like the prodigal son’s father longs for his son, like God longs for creation to be in some ways. And so creating communities of belonging means that it’s no longer an option for you, it’s no longer a matter of rights and law, you couldn’t imagine it being another way.

SIMON SMART: Have you seen good examples of that for people with disability?

JOHN SWINTON: I’ve seen good examples of it, within which people are clearly integrated; I’ve seen bad examples, where people have clearly been excluded. But actually, the main problem I’ve seen is people in between. So, if I can tell you a brief story: in some of the research we did with people with intellectual disabilities, we came across this woman who was very involved with her local chapel as it was. So, every Sunday she went along to the chapel, and she participated in the worship, participated in the sacrament, and afterwards they had a cup of tea and did their thing. And then she went home, and she didn’t see anybody else until the following Sunday. So she had a series of friendships which lasted for an hour and a half on a Sunday morning.

Now, there’s many people out there, so it’s not specifically to do with that, but that’s not exactly what most people want: a one-and-a-half-hour-long friendship. And so that’s a good example of being included, but not belonging – but also, the congregation, that hadn’t quite noticed, because the congregation thought it was doing alright, and on one level it was. But you want to be able to be visited, to invite people to your house; you want to be invited to other people’s houses, and then you know that you belong.

SIMON SMART: And you want to be missed if you’re not there.

JOHN SWINTON: And you want to be missed if you’re not there, yep.

SIMON SMART: Working with people who, most of our society would see as right on the fringes, what’s it done for you in terms of a faith perspective?

JOHN SWINTON: Well, it’s changed my idea of what the fringes are. Oftentimes people talk about the idea that Jesus sat in the margins with poor people, with prostitutes, and so on, but I think that’s a misunderstanding, because Jesus who was God sits in the margins, so therefore the margins are no longer the margins. And those people over there –

SIMON SMART: That’s where it’s really happening.

JOHN SWINTON: Yeah, those people over there who were engaging in their rituals and so on, they thought they had ownership of God, were actually missing what was going on there. So I think, I’ve always thought, that rather than sitting and being with marginalised people, I’m actually being in a place where I think God is and wants all of us to be in different ways.

SIMON SMART: Well John Swinton, it’s great to have you in Australia, we appreciate you so much coming into CPX, thanks so much.

JOHN SWINTON: My pleasure.|SIMON SMART: John, in your work you talk a lot about identity and what it means to be ‘me’ in some sort of continuous sense. I’m just wondering about this issue, in our Western culture, of rising levels of anxiety and depression, and wonder whether your work on dementia could shed a light on this area and the ways we think about our identity?

JOHN SWINTON: I think, when it comes to personal identity, we have a tendency to think that it’s something we own. And that’s the way most of us think about our own identity, and therefore if you have something like dementia, and you start to forget certain memories about yourself, then you have that sense that you’re losing your identity. But of course, you’re not losing your identity, because your identity is always sitting somewhere else anyway, and even your memory if you think about it – where’s your memory? If I have to remember anything about when I was a child – I have to ask my mother because I can’t remember now – but when I remember then I create a little story about who I was, but actually she holds that memory for me. And likewise, why else do we have computers, why else do we write notes? So your memory is all over the place, and likewise your identity is all over the place.

In relation to anxiety and depression, it depends whether you think these are identity issues or whether you think these are issues that relate to the values that we assume to be normal in terms of achieving in society, because there is an inbuilt sense of anxiety and sadness in any culture that assumes that success means doing the best that you can, and achieving the goals that society expects of you, which are normally financial, and are normally quite hierarchically structured. So as soon as you meet somebody you say to them, “What do you do?”, and then you place them in a hierarchy. And if you say, “Well, I’m unemployed”, then it’s not just you haven’t got a job, it means you’re really devalued by the way that we structure society.

SIMON SMART: Now we sometimes think that including disabled people involves putting a ramp in, and a disabled toilet into a building, and thinking that’s enough. But I wonder if you could comment on the difference between inclusion and belonging?

JOHN SWINTON: To be included you just need to be in the place. So you just have to have ramps to let people in, or big prints, or facilities for wheelchairs, or whatever way that you want that to run. And that’s sustained by law and policy, and it’s vital, in that sense, in order that people with disabilities can be in the room, both physically and psychologically. But the problem with inclusion is you don’t have to care. It’s a technical thing – you just have to do it. But to belong, you have to be missed. In other words, to belong you have to have a space that is your own, a space where when you’re not there people long for you, like the prodigal son’s father longs for his son, like God longs for creation to be in some ways. And so creating communities of belonging means that it’s no longer an option for you, it’s no longer a matter of rights and law, you couldn’t imagine it being another way.

SIMON SMART: Have you seen good examples of that for people with disability?

JOHN SWINTON: I’ve seen good examples of it, within which people are clearly integrated; I’ve seen bad examples, where people have clearly been excluded. But actually, the main problem I’ve seen is people in between. So, if I can tell you a brief story: in some of the research we did with people with intellectual disabilities, we came across this woman who was very involved with her local chapel as it was. So, every Sunday she went along to the chapel, and she participated in the worship, participated in the sacrament, and afterwards they had a cup of tea and did their thing. And then she went home, and she didn’t see anybody else until the following Sunday. So she had a series of friendships which lasted for an hour and a half on a Sunday morning.

Now, there’s many people out there, so it’s not specifically to do with that, but that’s not exactly what most people want: a one-and-a-half-hour-long friendship. And so that’s a good example of being included, but not belonging – but also, the congregation, that hadn’t quite noticed, because the congregation thought it was doing alright, and on one level it was. But you want to be able to be visited, to invite people to your house; you want to be invited to other people’s houses, and then you know that you belong.

SIMON SMART: And you want to be missed if you’re not there.

JOHN SWINTON: And you want to be missed if you’re not there, yep.

SIMON SMART: Working with people who, most of our society would see as right on the fringes, what’s it done for you in terms of a faith perspective?

JOHN SWINTON: Well, it’s changed my idea of what the fringes are. Oftentimes people talk about the idea that Jesus sat in the margins with poor people, with prostitutes, and so on, but I think that’s a misunderstanding, because Jesus who was God sits in the margins, so therefore the margins are no longer the margins. And those people over there –

SIMON SMART: That’s where it’s really happening.

JOHN SWINTON: Yeah, those people over there who were engaging in their rituals and so on, they thought they had ownership of God, were actually missing what was going on there. So I think, I’ve always thought, that rather than sitting and being with marginalised people, I’m actually being in a place where I think God is and wants all of us to be in different ways.

SIMON SMART: Well John Swinton, it’s great to have you in Australia, we appreciate you so much coming into CPX, thanks so much.

JOHN SWINTON: My pleasure.|SIMON SMART: John, in your work you talk a lot about identity and what it means to be ‘me’ in some sort of continuous sense. I’m just wondering about this issue, in our Western culture, of rising levels of anxiety and depression, and wonder whether your work on dementia could shed a light on this area and the ways we think about our identity?

JOHN SWINTON: I think, when it comes to personal identity, we have a tendency to think that it’s something we own. And that’s the way most of us think about our own identity, and therefore if you have something like dementia, and you start to forget certain memories about yourself, then you have that sense that you’re losing your identity. But of course, you’re not losing your identity, because your identity is always sitting somewhere else anyway, and even your memory if you think about it – where’s your memory? If I have to remember anything about when I was a child – I have to ask my mother because I can’t remember now – but when I remember then I create a little story about who I was, but actually she holds that memory for me. And likewise, why else do we have computers, why else do we write notes? So your memory is all over the place, and likewise your identity is all over the place.

In relation to anxiety and depression, it depends whether you think these are identity issues or whether you think these are issues that relate to the values that we assume to be normal in terms of achieving in society, because there is an inbuilt sense of anxiety and sadness in any culture that assumes that success means doing the best that you can, and achieving the goals that society expects of you, which are normally financial, and are normally quite hierarchically structured. So as soon as you meet somebody you say to them, “What do you do?”, and then you place them in a hierarchy. And if you say, “Well, I’m unemployed”, then it’s not just you haven’t got a job, it means you’re really devalued by the way that we structure society.

SIMON SMART: Now we sometimes think that including disabled people involves putting a ramp in, and a disabled toilet into a building, and thinking that’s enough. But I wonder if you could comment on the difference between inclusion and belonging?

JOHN SWINTON: To be included you just need to be in the place. So you just have to have ramps to let people in, or big prints, or facilities for wheelchairs, or whatever way that you want that to run. And that’s sustained by law and policy, and it’s vital, in that sense, in order that people with disabilities can be in the room, both physically and psychologically. But the problem with inclusion is you don’t have to care. It’s a technical thing – you just have to do it. But to belong, you have to be missed. In other words, to belong you have to have a space that is your own, a space where when you’re not there people long for you, like the prodigal son’s father longs for his son, like God longs for creation to be in some ways. And so creating communities of belonging means that it’s no longer an option for you, it’s no longer a matter of rights and law, you couldn’t imagine it being another way.

SIMON SMART: Have you seen good examples of that for people with disability?

JOHN SWINTON: I’ve seen good examples of it, within which people are clearly integrated; I’ve seen bad examples, where people have clearly been excluded. But actually, the main problem I’ve seen is people in between. So, if I can tell you a brief story: in some of the research we did with people with intellectual disabilities, we came across this woman who was very involved with her local chapel as it was. So, every Sunday she went along to the chapel, and she participated in the worship, participated in the sacrament, and afterwards they had a cup of tea and did their thing. And then she went home, and she didn’t see anybody else until the following Sunday. So she had a series of friendships which lasted for an hour and a half on a Sunday morning.

Now, there’s many people out there, so it’s not specifically to do with that, but that’s not exactly what most people want: a one-and-a-half-hour-long friendship. And so that’s a good example of being included, but not belonging – but also, the congregation, that hadn’t quite noticed, because the congregation thought it was doing alright, and on one level it was. But you want to be able to be visited, to invite people to your house; you want to be invited to other people’s houses, and then you know that you belong.

SIMON SMART: And you want to be missed if you’re not there.

JOHN SWINTON: And you want to be missed if you’re not there, yep.

SIMON SMART: Working with people who, most of our society would see as right on the fringes, what’s it done for you in terms of a faith perspective?

JOHN SWINTON: Well, it’s changed my idea of what the fringes are. Oftentimes people talk about the idea that Jesus sat in the margins with poor people, with prostitutes, and so on, but I think that’s a misunderstanding, because Jesus who was God sits in the margins, so therefore the margins are no longer the margins. And those people over there –

SIMON SMART: That’s where it’s really happening.

JOHN SWINTON: Yeah, those people over there who were engaging in their rituals and so on, they thought they had ownership of God, were actually missing what was going on there. So I think, I’ve always thought, that rather than sitting and being with marginalised people, I’m actually being in a place where I think God is and wants all of us to be in different ways.

SIMON SMART: Well John Swinton, it’s great to have you in Australia, we appreciate you so much coming into CPX, thanks so much.

JOHN SWINTON: My pleasure.