The Disabled Church

Human Difference and the Art of Communal Worship

Rebecca F. Spurrier

• Publisher: Fordham University Press
• Year: 2019
• ISBN:
  9780823285549
• Edition: 1
• Topic: Theology & Religion
• Subtopic: Christian Theology

How do communities consent to difference? How do they recognize and create the space and time necessary for the differences and disabilities of those who constitute them? Christian congregations often make assumptions about the shared abilities, practices, and experiences that are necessary for communal worship. The author of this provocative new book takes a hard look at these assumptions through a detailed ethnographic study of an unusual religious community where more than half the congregants live with diagnoses of mental illness, many coming to the church from personal care homes or independent living facilities. Here, people's participation in worship disrupts and extends the formal orders of worship. Whenever one worships God at Sacred Family Church, there is someone who is doing it differently.Here, the author argues, the central elements and the participation in the symbols of Christian worship raise questions rather than supply clear markers of unity, prompting the question, What do you need in order to have a church that assumes difference at its heart?Based on three years of ethnographic research, The Disabled Church describes how the Sacred Family community, comprising people with very different mental abilities, backgrounds, and resources, sustains and embodies a common religious identity. It explores how an ethic of difference is both helped and hindered by a church's embodied theology. Paying careful attention to how these congregants improvise forms of access to a common liturgy, this book offers a groundbreaking theology of worship that engages both the fragility and beauty revealed by difference within the church. As liturgy requires consent to difference rather than coercion, an aesthetic approach to differences within Christian liturgy provides a frame for congregations and Christian liturgists to pay attention to the differences and disabilities of worshippers. This book creates a distinctive conversation between critical disability studies, liturgical aesthetics, and ethnographic theology, offering an original perspective on the relationship between beauty and disability within Christian communities. Here is a transformational theological aesthetics of Christian liturgy that prioritizes human difference and argues for the importance of the Disabled Church.

CHAPTER 1

Gathering: Unfolding a Liturgy of Difference

[T]urning to the liturgical tradition is not a turning away from other sites of encounter with the Holy One. It is, rather, a turning to all other sites with utmost passion and clarity—but a clarity sharpened, deepened, and nourished by liturgy.

—TERESA BERGER, Fragments of Real Presence¹

For both ethnography and liturgy, particular locations are essential to knowledge of human and divine others. As an ethnographer, I choose to occupy a particular place in order to participate in knowledge that I cannot grasp from a distance. As a participant in liturgy, I likewise inhabit a particular space in order to grasp an experience of the divine that I cannot obtain at a distance from those with whom I gather. Ethnography and liturgy both require access to a physical location, a space for gathering that facilitates the meeting of people with different backgrounds and experiences. Because difference matters to a faithful map of Christian liturgy, here I trace both my own paths of entry into the liturgy that is Sacred Family Church, as well as the access of those who count themselves a part of this community. This introduction to the repertoire of spaces at Sacred Family reveals how people from diverse backgrounds and with different kinds of abilities gather together within the physical location that is Sacred Family.

Liturgical theologian Gordon Lathrop identifies “assembly, a gathering together of participating persons” as “the most basic symbol of Christian worship.” If “all the other symbols and symbolic actions of liturgy depend upon this gathering,”² access to the assembly is imperative. From the perspective of people with disabilities, this access cannot be assumed or taken for granted.³ Access to common worship requires relationships and different ways of sharing time and space. Gathering different kinds of embodied minds into a common space requires “two-way access,” to and from the church and to and from the lives of people with disabilities, so that each informs the other.⁴ In this chapter, I suggest that people with psychiatric disabilities, once they are gathered into a common space at Sacred Family, transform both an understanding of the borders of sacred space and the isolation of a sacred space called the sanctuary. Disability differences amplify liturgical spaces such as Sacred Family by requiring and creating multiple points of access to the divine through a plurality of interconnected centers.

To map liturgy at Sacred Family, I begin with the most recognizably liturgical of spaces: the sanctuary. The community gathers here for celebrations of Holy Eucharist on Sundays and Wednesdays, and for morning and noonday prayer on Tuesday and Thursday mornings. Alongside the sanctuary, I map other spaces of gathering, too, like the garden, the Circle hall, and the smoking area. In doing so, I orient readers to the daily lives of people who help to create spaces of encounter and to the interactions that characterize each encounter. While these spaces and interactions may appear peripheral, they are, in fact, essential to the liturgical fabric of Sacred Family.

A Point of Gathering: The Center of the Sanctuary on Sunday Morning

Mother Daria, a visiting priest at Sacred Family, shares with me an image she has of the sanctuary on a Sunday morning. She has been a visiting priest at Sacred Family for a year when we meet at a coffee shop to talk about the congregation. As a young white queer woman, she embodies some of the differences that Sacred Family gathers and affirms as part of its community. Even so, she acknowledges the congregation’s struggle to make room for the differences of all people who come. Given this struggle, she offers me a hopeful image of what it means to gather such a diverse group on a Sunday morning. From her vantage point she witnesses the moment when the Gospel is carried from the altar to the center of the sanctuary. Lifting the holy book from the altar, the deacon walks with the book into the congregation. According to liturgical rubrics, which provide prayers and instructions for this church’s common worship, the congregation should respond to the reading of good news by standing. The assembly rises and turns in their pews to face the deacon as she reads.

From the front, Mother Daria witnesses different responses to this reading. In her words, “it is an amazing vision, because everybody is in a different place, some people are just sitting down, and facing in their own world, other people are turned toward the gospel being read, other people are like . . . everyone is doing something different and it is all okay, it all fits together. It’s one of my favorite visions to watch.” A multiplicity of responses symbolizes for her the meaning of Sacred Family: It is a place where difference is essential to common prayer.

Many Points of Access: Gathering Throughout the Week

Mother Daria’s story exemplifies the faith of many who come to Sacred Family: a faith that human differences can be gathered and held, and that worship itself holds people together. When I worship in the sanctuary Mother Daria describes, I note the differences in people’s abilities to read, to stand, to focus, to sing the hymns, and to follow a prayer book liturgy. Some people, in the back, are sleeping, and some, in the front, whisper to one another. The range of responses to the gospel reading—bored, resistant, reverent, enthusiastic—reflects the ambiguities of this congregation’s faith and the diverse narratives that parishioners share with me.

Jack, for example, first came to Sacred Family Church for the food. A middle-aged white man living in a group home with other Sacred Family participants, he found the parish as many congregants do: by word of mouth. Housemates spoke about a place to go during the weekdays. I ask Jack how, a year after his first coming, he now describes Sacred Family to those outside the church. Jack responds:

I would tell them that this is a church that is doing what the church is actually supposed to do, and that is reaching out to people with disabilities, whether they be mental or physical, and to become an intricate part in the community, and that’s what they are to me. And I admit, when I first came—I still use tobacco—and I came just to eat and smoke because I was hungry. But after coming for a while and noticing the people in the garden and seeing what was going on around me, I started asking questions, and before you know it, I was a part of the church. But there are people who come just to eat and smoke.

“Is that alright, you think?” I ask.

“Yeah, that’s alright.” he said. “That was me for a couple of months.”

Jack’s story maps entry points into the landscape of Sacred Family. He references the smoking circle at the east entrance, a designated set of picnic benches and cigarette receptacles. Jack’s story involves the Circle hall, where meals are shared. He also talks about the garden where Circle participants tend flowers and vegetables to sell and to eat, as well as to offer to God on Sunday morning along with the bread and wine for communion. In time, Jack is baptized in the sanctuary, and then a few months later, due to a series of hospitalizations, he is absent for many months. Occasionally, other members bring news of him to the church, reminding us of his absence. In Jack’s story, as in many Sacred Family narratives, gathering happens not once, but over time in multiple ways as people leave and come again.

Aisha’s story also highlights this multiplicity. A young black woman and a Circle gardener, she describes her initial encounter with the church as “a little bit forced because I was living in a group home, but the lady who was over the group home had us come here, and at first I wasn’t very fond of the place to be exact.”

“What made you not very fond of it?” I ask.

“We came into the eating area, and it had beautiful pictures on the ceiling, but it was limited space, and I figured that’s the only place we can go, to be in that space outside or in the eating area.”

“Did it feel cramped?”

“It did, and it was a whole bunch of people I didn’t know. That’s what I remember.”

After leaving for about a year and a half because of a close relationship turned sour, she returned. She now comes to work in the garden, but does not attend services. She cites differences in her religious beliefs, differences with which she does not think everyone at the church would be comfortable.⁵ I ask what keeps her coming back to the Circle in spite of her initial dislike of the church space and in spite of differences that distinguish her from other congregants. “I think it’s the friendship. There are a lot of people who respect you as a person. I remember when I left the Sacred Family for about a year and I came back, they treated me like I was a celebrity. They yelled, and they were saying ‘yay!’ I was like, ‘I didn’t know you guys would miss me so much.’ ” Her return also has to do with a sense of peace she feels here as compared to other programs for the mentally ill that she has attended. “Sacred Family is peaceful. There isn’t many fights. There isn’t really many people arguing. There’s just a whole bunch of friendship, and if not friendship, it’s like your distant family. You don’t really talk, but at least you know that people are there for you when you need them.”

Aisha’s narrative, too, reflects spaces and relations across the Sacred Family landscape that enable her presence here. The church space that initially felt crowded to her transformed into an experience of “distant family,” who take note of her coming and going, even if she does not engage with everyone. The garden, which centers her time at Sacred Family, provides a space outside the dining hall and sanctuary where she tends to relationships with other gardeners. Although she does not feel comfortable sharing her own faith with everyone who gathers, she now describes her relationship to the community as one of peace rather than coercion. A consensual relationship to Sacred Family involves her ability to choose the spaces and activities in which she participates. Aisha speaks of the garden itself as a site of encounter with God. Recalling a teacher who nourished her appreciation for growing things, she describes her first encounter with the garden at Sacred Family: “When I first went into the greenhouse and started working, it was like the garden of Eden; I was in the right place.” Aisha did not immediately access a “right place” at Sacred Family but discovered this place over time and through multiple gatherings. Finally, it was the garden rather than the sanctuary that created this possibility.

Like Aisha, Fiona recalls an initial gathering at Sacred Family as unintentional, something she may not have chosen. As a wealthy, middle-aged white woman and a church member with no mental health diagnosis, she remembers her slow conversion to this community. About fifteen years ago as a member at another parish, a Sacred Family volunteer invited her to a dance for Sacred Family congregants. She recalls the motivations that compelled her to accept the invitation:

I was just getting to know people . . . I always like to make new friends, new church community. I thought: ‘Okay, I’ll come to the dance’. . . . I had no clue what this was. I thought it was a way to meet friends at St. Mary’s, which is ultimate [wealthy Atlanta], and so I come down here and think ‘holy moly!’ That night I came and I brought Coca-Colas, and I had no idea what I was coming to and it really was quite different than my world, and it really captured me. And then I came down here (to Sacred Family) and after I got over the . . . not shock, well it was shocking right at first, but after I thought, ‘what in the world,’ then I was really interested in learning more and then I started volunteering.

I ask Fiona what captured and shocked her.

Well, you know I’m a professional, wealthy, affluent, white woman that lives in Atlanta, Georgia, that lives an exquisite life, and so you come to Sacred Family, you come to a [church] that is in [this neighborhood], which I didn’t even know where it was, and it’s like, okay, (she pauses), and then everyone here is . . . they look, they speak, they smell differently, clearly very, very different, because this is not from my world, so, just initially, it is very surprising to someone who lives in the village or the bubble that I live in. I was like: ‘What? What the hell?’ But not only negatively, just in . . . I wasn’t . . . I didn’t even know what Sacred Family was. . . . I think that it is not unusual actually because it’s raw from our definition when you live in the bubble I live in.

“So what captured you?”

It captured me in so many different ways . . . after me getting over the shock and surprise, then I settled into [it]. This is the experience of coming to Sacred Family; it has been my whole life and still could be today: the very worst thing that could ever happen to me, to be homeless and to lose my mind—that would be my deepest fear of my universe, to be homeless and to lose my mind. And then you come here, and that’s what this is, and I meet my fear, right there in my face, raw, staring back at me, touching me, looking at me, doing the hokey-pokey with me at the dance . . . because that was the first thing it was, a dance. That was my deepest fear, and then you settle into it and you take a breath, and you know, okay. And that’s what captured me and hooked me. And the fear hasn’t gone but it’s . . . so I’m right here with [the fear] . . . because even from that first dance, it was fun. I didn’t know anybody. Yeah, it was my deepest fear, but it was fun. . . . And I kept coming back, learning, and just being really interested, and interested in mental illness and poverty and learning about my friends here . . . I’m kind of embarrassed. This could be anybody. This could be my brother. This could be me. These are just my family here that suffers from severe mental illness and poverty. From where I sit, I often think, you know, what I have are resources and a support network that keeps me tethered to my bubble and my village, but it’s real, I believe passionately, for all of us, fragile, and if you become ill and/or your resource network goes, anybody could be here. You could come from any walk of life. This could be me.

Fiona speaks of spaces in the city that are segregated, and at the same time, she speaks of these spaces as permeable because of the possibility of psychiatric disability. She imagines that she could end up on the street or in a group home if she were to lose her mind, her social network, and her material resources.⁶ She enters Sacred Family through a dance hall in another parish and also through the sharing of hamburgers and Coca-Cola. Fiona rarely comes on weekday mornings, when Aisha attends Sacred Family, but she describes Wednesday evening Eucharist and the suppers afterward as a place where she learns about spaces that exist outside of the bubble of white, abled wealth she describes as home. Fiona’s first encounter reflects common reactions to mental illness and poverty on the part of those who visit Sacred Family. Whereas anxiety initially objectifies the people she encounters, turning them into shadows of her fears, through regular encounters with Sacred Family, she is able to perceive those who gather as persons, as family, rather than as projections of her fear. While she continues to grapple with her fear of mental illness and poverty, Sacred Family lures her into a way of inhabiting and creating community premised on dignity rather than fear. Fiona eventually becomes a Sunday morning regular; she later moves into a leadership position at the church. After that position ends, she disappears for a time.

Another leader in the parish, a young white man named Neil, recalls being gathered into life at Sacred Family when he was a seminary intern. He locates the time and space when his lines of identification crossed with those of Circle participants.

My job [as an intern] was just to come and be with people. I thought that was the greatest thing ever . . . I wasn’t a chaplain facilitating this prayer service, I was Neil, who was getting to know a host of people and in the process evaluating what my own hang-ups were and the ways I was preoccupied with myself that was damaging to others. . . . At the time, I was going through some very dark days myself. I was very depressed . . . I was in a bad place. I was drinking extremely heavily, I mean, shocking amounts of alcohol each day, and living just a very sad, depressed, and lonely life, and meanwhile coming to church here (He begins to laugh.).

“And it was a good place to come?” I ask. “How did you find it as someone who was feeling in a dark place?”

“And it was a very healing place to be.” He tells a story to illustrate this claim.

I missed a week of site work because I was hospitalized for psychiatric observation for suicidal ideation. So I just, I called in sick. I missed that week, and the next week I was back again. I was sitting out at the picnic benches drawing because I just love to draw . . . and the man sitting next to me is Jason, who in many ways is, or no longer is, but has been, one of the most significant sources of frustration in my employment at Sacred Family. I would not say he is my nemesis, but if I had a nemesis, it would be Jason.

And so Jason said, ‘We missed you last week. You weren’t here.’

I said, ‘No, I was out for the week.’

Then he asked, ‘Well, where were you?’

I answered, ‘I just, I wasn’t feeling well. I didn’t come in.’

Then Jason said, ‘What was wrong? What was wrong?’ (Neil uses his voice to imitate Jason’s pestering voice.)

And I said, ‘Well, I had made plans to kill myself, and instead of killing myself, I committed myself for psychiatric observation. And I was in the hospital.’

And he said, ‘Which hospital were you in?’

Then I said, ‘I was in [this] hospital.’

Jason said, ‘Well, which room were you in?’

And I said, ‘I was in the first room to the right.’

And he goes, ‘Oh! The one with the huge plexiglass window?! The plexiglass observation wall?’

And I said, ‘Yes, the one d...