To Belong, We Need To Be Missed

Q&A with John Swinton, director of the Centre for Spirituality, Health and Disability at the University of Aberdeen

by Jessica Bratt Carle

As a mental health nurse for 16 years, John Swinton worked closely with those whom society deems to be “different.” These formative experiences with disability, mental health, and dementia led him to found the Centre for Spirituality, Health and Disability, an international research institute at the University of Aberdeen in Scotland.

Now a world-renowned scholar, he is the author of several books including Mental Health: The Inclusive Church Resource (Dartman, Longman & Todd, 2014; with Jean Vanier) Dementia: Living in the Memories of God (Eerdmans, 2012), and Disability in the Christian Tradition: A Reader (Eerdmans, 2012; with Brian Brock). Church Health Reader’s contributor Jessica Bratt Carle spoke with Dr. Swinton about his background, his research, and how the church can be a place of belonging for people with disabilities.

Jessica Bratt Carle: How does your work as a nurse impact your interest in disability studies?

John Swinton: I was a mental health nurse for 16 years before I “stumbled” into academia in the early 1990s. I look upon my nursing career as my place of formation and my theological career as my place of vocation. Nursing taught me how to see the world in quite particular ways. When you hang around people with mental health problems and folks with intellectual disabilities, you discover that they see the world differently and you come to see the world differently. Theology has taught me what it means to learn to see such things through God’s eyes.

In 1997 we began a program looking at the relationship between spirituality, theology and health, and in 2004 we formed a Centre for Spirituality, Health and Disability. It is a holding space for scholars and practitioners who want to reflect on the current issues with the relationship between spirituality, health, disability and human well-being.

How would you define disability?

Disability has all sorts of political, social and economic dimensions. For example, in order to access certain benefits you have to take on the label of disability as a way of naming your difference. Even if you don’t want to, it’s often pragmatically necessary to do so. But in essence, the term disability is just really a way of marking out and giving a name to difference. The key thing is that you experience your difference, whatever it may be, within a particular social, cultural or relational context. And how that context responds to you will determine the shape of the experience you have of your difference.

For example, within Western cultures, we have a hyper-cognitive understanding of people. We value people according to their intellect and reason rather than their lovability, their connectedness or their vulnerability. That kind of cultural worldview makes a huge impact on how people experience being different. If you have dementia, for instance, you forget certain things and you begin to lose aspects of your cognition; in some sense you begin to lose the sense of who you are. Such experiences have a particular meaning in a social context where you are defined by the stories you tell about yourself and the stories other people tell about you. As long as you can tell your own story, then everybody thinks that you are the person you have always been. The moment you are no longer able to articulate your own history, people start to say, “Well, he’s not the person he used to be.” But that is a mistake borne of a certain kind of culture. As Christians we know that what makes us who we are is God, not the things that we may or may not be able to do.

Likewise, for mental illness. Anything that relates to intellect and reason can become quite dangerous. If you define the essence of human beings as, “I think, therefore I am,” and if you begin to lose some of that or it’s challenged, then you not only have a mental illness, you also have something that seems to culturally threaten your humanness.

So disability is a way of naming difference. It’s a social construct—it’s something that emerges from the ways in which we are taught to notice and respond to difference.

Following from that, what opportunities does the church have to tell a different narrative about differences?

In principle, churches should be wonderful places for people who are different. Paul says that there’s no more male nor female, no more Jew nor Greek, we’re all one in Christ. So, who we are—what our identity is—is not what we think we are or what other people think we are; it’s who we are in Jesus, which has nothing to do with the shape and form of our minds or bodies. Within the body of Christ, diversity is the norm. To be different is exactly what is normal. The problem is, the church and a good deal of modern theology has a tendency to be hyper-cognitive. You have to know certain things and be able to proclaim things in particular ways in order to find your salvation. What if you can’t do that? If you are, for example, someone with a profound intellectual disability, someone who doesn’t have words or the necessary symbols to participate in religious language, where does that leave you? If your whole congregation says that the only way people can find salvation is by proclaiming Jesus with their lips, and you can’t even understand these words, where does that leave you?

You write about the difference between inclusion and belonging in the church, saying that to be included you only need to be present, but to belong means that you’re missed when you’re absent. Can you explain this idea more?

Disability studies and disability theology can often focus on the political; pushing for human rights, justice and inclusion for people with disabilities. And of course, that is all necessary. But within these discourses, inclusion is perceived as primarily a political term. You have to have legislation wherein it is illegal to exclude a person with a disability. So they are included because the law says they have to be included. That may be necessary but politics is not enough.

The problem is, you can then have a situation where people can be included in the same church communities, and no one speaks to them. The legal enforcement of inclusion gets people in the room, but it doesn’t mean people have to love them. It doesn’t change people’s hearts.

The idea of belonging, then, is a lot richer and more theological. It means that you are in the room but also you belong in the room. And if you are no longer in the room, then people need to be looking for you. You know that you belong when you’re missed. It’s like the prodigal son’s father who rises and looks for him because he misses him. It’s that kind of deep longing and that deep missing that is the essence of the body of Christ.

For example, we worked with a woman named Lorraine. Lorraine had an intellectual disability. She went along to chapel every week, and she loved it. She loved the worship, she loved to sing, and she loved to be with others. And so she would go to worship, sing, do her thing, and then afterward she would have coffee and go home. And for the rest of the week, she wouldn’t see anybody. So, it looked like she was included—and indeed she was included—but she didn’t belong. What she ended up with was a series of friendships that lasted for an hour and a half on a Sunday morning. Now, who amongst us wants to have friends who only talk to you during an hour and a half time slot on a Sunday morning? It’s better than nothing, you could say, but I don’t see anything in the gospel that says, “Let’s create communities that are better than nothing!”

Of course it’s not just people with disabilities who find belonging difficult; many of us do. How many of us call one another in the middle of the week? Or better, how many of us are called during the week? Our churches are full of people who sometimes see each other for an hour on a Sunday morning and don’t miss each other in between. But the experience of disability can make that sense of not belonging more intense because loneliness is often a central aspect of many people’s lives. Creating communities of belonging, then, is perhaps one of the most profound ways in which the church can really become the church.

You mentioned the story of the prodigal son as something that can inform our sense of belonging. Are there other themes or passages from Scripture that are especially relevant for you?

One of the things we often forget is that Jesus sat with tax collectors and sinners—not reformed tax collectors and sinners. When Jesus was a guest at another’s home, he wasn’t trying to persuade the host to be like him. It was only as he began to befriend people that they had to opportunity to change. But his point was not to change them; his point was to be with them, to be a guest in their presence. The rhythm of guesting and hosting is the rhythm of incarnation.

That kind of rhythm of hospitality is precisely what church communities need to capture not just with regard to people with disabilities, but for everyone. When it comes to people who are different, it is not a matter of charity or pastoral care. It is a matter of faithfulness. Our job is not to try to transform a person into someone who looks like “us,” whoever “we” may be, but to actually think differently. What might it mean to be a guest in the life of someone with advanced dementia? To enter into their lives and learn what it might mean to be a disciple when you have forgotten who Jesus is. What could it mean to be a guest in the life of someone with a profound intellectual disability, someone who doesn’t have the words to be able to articulate faith? What might it be like to experience God, without words, without concepts, without symbols? Once you are drawn into that kind of divine hospitality, you can begin to see that ministry to people with disabilities is not something that “specialists” engage in. It draws you into the very heart of the gospel and what it means to be human.

Describe what you mean when you say that someone with profound intellectual disabilities may not know about God, but they know God.

In Jeremiah 22:16, Jeremiah describes King Josiah as a good king, and then he moves on to say “because he looks after those who care for the poor” (that’s my paraphrase). And then Jeremiah says, “Is that not what it means to know me?” In other words, knowing God is not simply knowing things about God. Knowing God is a social practice—it’s a way of being in the world. It’s something we do with our bodies and our minds in the power of the Spirit. Now I’m not saying that you work your way into heaven! My point is simply that God is love, and Christ’s incarnation is the embodiment of love. Love needs to be embodied.

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