Give me the names for things, just give me their real names,
Not what we call them, but what
They call themselves when no one’s listening—
At midnight, the moon-plated hemlocks like unstruck bells,
God wandering aimlessly elsewhere.
Their names, their secret names.
—Charles Wright, “The Writing Life”1
How do we know ourselves without knowing God? How can we love God without knowing God? But then how can we know what we do not love? Names for God propel a desire to know more about the one who is named and yet also reveal the inadequacy of human language for God. The act of naming both signifies the limits of knowledge and arouses desire for relationship with the divine. Christian theologians puzzle over this conundrum of the relationship between love and knowledge at the center of human/ divine relationships.
In prior chapters, I have explored the relationships to liturgical space, form, and time that create vital conditions for a diverse group of people to gather and consent to a weeklong liturgy together. In this chapter, I investigate another aspect of a communal liturgy that honors human difference: the arts of naming human and divine relationships, particularly as these relate to the needs and desires that congregants share with one another. I begin with an exploration of names for human lives manifest at Sacred Family rather than with the naming of God. I describe how arts of naming both fail and flourish within rituals of healing, health care, and friendship as each of these parts of Sacred Family’s liturgy elicit visions of a good human life. Each set of rituals reveals not only the limits of different kinds of language used at Sacred Family but also the desire for better names. The dissonance or resonance of names with persons who are known and loved through them are key to a theological aesthetics of a community of difference: the way it feels to share and create relationships across mental differences and power asymmetries. I conclude by arguing that the struggle to name another adequately at Sacred Family is essential to Sacred Family’s love and knowledge of God.
I have been describing an unusual church whose congregants live with and without diagnoses of mental illness, but I have not defined these illnesses. This omission is intentional; it represents the actual experience of Sacred Family, a community where people are not known by their particular diagnoses and who seldom represent their lives as unusual. Mental illness thus marks this nonconventional community, but it does not define it. It is ever-present and yet elusive as community members live with psychiatric disability, each person manifesting that experience differently.
As I attend to manifestations of mental health and mental illness at Sacred Family, I have used a disability studies approach to neurodiversity. Assuming the theoretical and activist premise that “minds are best understood in terms of variety and difference rather than deviations from an imagined norm”2 productively complicates the work of naming mental illness. Disability scholar Margaret Price enumerates this challenge by listing terms used to describe mental disability:
Who am I talking about? So far I’ve used a variety of terms to denote impairments of the mind, and I haven’t yet exhausted the list. Contemporary language available includes psychiatric disability, mental illness, cognitive disability, intellectual disability, mental health service user (or consumer), neurodiversity, neuroatypical, psychiatric system survivor, crazy, and mad.3
In response to this avalanche of terms, Price advocates for an ethic of identification that negotiates the need for solidarity and diversity: “Although I use mental disability as my own term of choice, I continue to use others as needed, and my overall argument is for deployment of language in a way that operates as inclusively as possible, inviting coalition, while also attending to the specific texture of individual experiences.”4 While my own terms of choice differ from that of Price, for reasons I lay out in my introduction, Price helpfully articulates the work of good names, ones that facilitate coalition and community without reducing individual experiences.
Price reminds us that naming, as a culturally dynamic process, is always value laden. Claiming an identity can allow persons to build coalitions across remarkably diverse human experiences, but in the case of mental disability, as Price notes, common terms “have explicitly foreclosed our status as persons.”5 Most names that designate categories of people have a preferred corollary. Mental illness, for example, “introduces a discourse of wellness/unwellness into the notion of madness; its complement is mental health, the term of choice for the medical community as well as insurance companies and social support services.”6 Such terms, even when helpful to individuals and those caring for them, affect the lived texture of individual experience and the resources available or denied as social supports. To invoke one’s status as a person while also claiming the resources one needs for survival can be a struggle.7 The patterns of identification we use for ourselves and others evoke and require a response; names establish relationships. They frame our needs and desires. Using one framework, one name, might establish access to vital medical and social supports and, on the other hand, obscure important aspects of neurodiversity, mental disability, and humanity.
Psychological anthropologist Tanya Luhrmann also writes of the power of a name when she describes the two different approaches, biomedical and psychodynamic, that are often used to interpret and respond to mental illness in North American cultures.8 As she analyzes different “moral instincts” that each approach fosters, she posits that “psychiatry is inevitably entangled with our deepest moral concerns: what makes a person human, what it means to suffer, what it means to be a good and caring person.”9 Such moral concerns affect not only those who receive diagnoses but also those involved in diagnosing illness and administering treatment:
One of the oldest ideas in human thought is that when you name something mysterious and out of control, you gain mastery over it. In magic and religion in cultures throughout history, to know the name for a tree or a person or a malicious spirit was to grasp its essence and so control it (unless you were too weak or impure, in which case uttering the sacred name might kill you). In medicine, of course, diagnosis gives a doctor control because it tells him how he might be able to help a patient. But something of the old magical echoes linger. To produce a name makes you feel that you have begun to master the reality of the problem and that there is, in fact, something there to master.10
Luhrmann argues for the reality of madness and for taking seriously the suffering it causes many people11 but also suggests that no name, medical or otherwise, is finally adequate to the complex reality it seeks to reflect. She reminds us that mental illnesses are not isolatable phenomena in a body-mind but a cluster of diverse symptoms, feelings, and behaviors that are given common names.12
The naming of psychiatric disability involves an individual person’s embodied experiences; it also figures a set of relationships that are foreclosed or become possible through the patterns of identification brought to bear. Thus, in a community like Sacred Family, I encounter congregants who insist on the importance of using “people first” language—people with disabilities or people with mental illness—so that the person might not disappear under the mantel of an illness or disability negatively associated with them. Distancing their person from their illness gestures toward the multifaceted nature of their being, one that is never fully captured by their diagnosis. A divergent approach, one equally concerned with human dignity, emphasizes the explicit claiming of language such as disabled or mad. This occupation recreates meanings associated with disability and madness, in turn creating activist coalitions. Such an approach is wary of the dualisms that imagine people apart from vital aspects of the body-mind with which they inhabit the world and express their needs and desires. Rather than distancing oneself from a disability, one claims its centrality in experiencing the world and relationships, even when such experiences depart from certain ideals of health and well-being.
Sacred Family, like other churches and communities, struggles for good names and body practices that attend to congregants’ losses, desires, and dignity without also erasing particular aspects of mental disability. How to name disability difference, attending to the coalition it creates and the ableism with which it must contend while also fostering desires for solidarity implicit in a community of difference? How to respond to individual textures of loss and suffering that congregants experience without regarding another congregant as a pitiable thing, as one whose life I am fortunate that I do not have? For inherent in a name is a relationship. Who are you to me? Who am I with you? How am I to call you? How are we to speak about some of us?
Such forms of address are always multiple. There are proper names, such as birth names or surnames or nicknames. Miriam. Mr. Cornelius. Brian. These names become aligned with a second form of naming as roles and attributions accumulate. Brian is the vicar, so he becomes Father Brian. And Father Brian is a good preacher. Miriam is a kitchen helper and a Scripture reader. Moving out from the individual to identifying groups of people, names serve to distinguish some groups of people from others. Miriam helps in the kitchen without being called a volunteer because she is also a Circle participant. Kirby is not only an artist. He is an artist with mental illness and a group home resident. Neil is a staff person with mental illness, an ABC (arrives by car), is married, and is a homeowner.
Finally, there is also a naming that arises when one congregant asks another for help or names their struggles or desires before God and community. To intercede for ourselves or others requires a set of names adequate to those described in our petitions. In asking for another’s help, Sacred Family congregants rarely represent their lives as tragic, but the reality of loss lingers and leaves a motif of grief that alters the tone of community and elicits a desire for communal response to the needs of those who gather.
If Sacred Family’s art forms hold and weave community together, they must also address the beauty of each congregant’s life as well as the losses and the sorrows that congregants name. The desire to name one’s own life or experiences adequately, to offer those to another, is part of the work of the people at Sacred Family. At the same time, receiving care requires certain conditions and forms of address, adequate names that facilitate trust rather than objectify members of the community. Such a complex task incorporates and assumes these various forms of naming and misnaming as well as the limits of any one name. The struggle to find precise yet expansive names that resonate with those whom they identify demonstrates a liturgical imperative: the quest for better names.
I begin with an elusive conversation that illustrates one woman’s struggle to name her own experience and identify the meanings of both her intense suffering and her love for her life. On an April morning in the Easter season during my second year at Sacred Family, Miriam and I sit together on a picnic bench. Everywhere the churchyard is in bloom. The gardeners are weeding and watering. Miriam tells me she was a mess when she first came to the church. She wasn’t sure what she was living for. She feels that she is being cared for here. She gestures to the left side of her body. I imitate the gesture, as an inquiry, wondering if she means it to specify something. She repeats the gesture, touching her side this time, to show me.
“I don’t feel a lot, but I feel it right here along the side. It didn’t take a lot. I thought it would, but it didn’t. I don’t know what it took, but it happened. I hope I don’t lose it. It’s special but not that special.”
“What makes you feel taken care of?”
“The people on the job; they talk to you, and they don’t just throw you away.”
“It’s a way of being talked to?”
She nods, “Then I look for my death. I keep seeing Rev. Jess bury me in the cemetery.” She has tears in her eyes.
“Did you tell her that?” I am concerned and want her to share her burden with the priest.
“I’m afraid it would be too heavy for her.” She goes on to explain, “It worries me: not to die—death doesn’t worry me—it’s like a nagging toothache, death and life, death and life.”
“It’s like feeling between them?” I am trying to understand.
“Yeah, it’s taking me one way or another. I can’t get any more emotions in. I hope I can get it together.”
I observe her as a peaceful presence at Sacred Family and am always impressed with what she brings to the community through her kindness. She looks surprised when I tell her this, but then she nods. She makes a comment about giving back. I assume she is talking about giving back to a community that cares for her, but actually she has another meaning in mind.
“Give back to the Lord and let the Lord do what he wants to do. Sometimes it don’t turn out the way you think it should. I don’t know why [the Lord] had to work [in my life this way].”
She describes her own physical abilities and limitations. She takes one or two steps and then sometimes she can’t move. She attributes this to God. “I walked around the building once but then [God] won’t let me go again.” And later, “My psychologist calls it stress. He sees it all over me.”
“What does he tell you to do?”
“He wants me to walk, to exercise.”
A week later, we return to this topic of living between life and death. This time Miriam emphasizes life rather than death. “You have to be grateful for life because life is given to you, given to all of us.”
“No matter how hard it is?”
“No matter how hard it is. We should appreciate it, and somehow put our arms around it, or put your arms around yourself and just be thankful.”
“How do you embrace life?”
Miriam wraps her arms around her body, reaching as far as she can in a partial embrace. “You can’t get it all the way around there; you wish you could, but you can’t. Hug life, and love life.”
When Miriam describes her condition as “between life and death,” she describes an embodied experience rather than a single word for her condition. She stresses the importance of those who address her and recognize her life rather than “throwing her away.” She refers to multiple powers involved in naming her experiences of her life: the Lord, a psychologist, a priest, and staff members. In other conversations, she refers to housemates, fellow congregants, and family members. Each one plays a part in determining the experiences that congregants like Miriam offer to or withhold from one another. Each offers a different set of names to help Miriam interpret her sorrow and her desire.
Like Miriam, Sacred Family as a community is an interstitial space that holds multiple frameworks for interpreting the losses and desires of congregants. Sacred Family congregants often describe their community through the general category of mental illness or mental health challenge or mental health disorder. At the same time, specific diagnoses are rarely given or known in regards to each individual congregant. Within a medical framework, staff and congregants often interpret themselves and one another through the lens of medications. Certain behaviors may be attributed to a change in medications; if someone is acting in a way that is unusual for them, others might wonder if they quit or changed medications. Frequently in and out of hospitals, some congregants compare hospitals and medical care as others compare restaurants or grocery stores, evaluating the treatment they receive and the quality of food they get at each place. In addition to mental illness, many parishioners suffer from other serious health conditions. Most congregants assume the importance of regular medical assistance and treatment in navigating day-to-day lives even as they often fail to receive the medical attention and recognition they require.
Sacred Family also names needs and desires through a recovery framework, even when that term is understood in different ways. If Aisha refers to recovery from mental illness as doing things that people without mental illness don’t think you can do, another congregant talks about his recovery as learning not to do things that are harmful to himself. When congregants offer a recovery story, they often narrate a transformation in lives and relationships as they learn to name and live with a mental health diagnosis. Naming and understanding one’s mental illness is pivotal to such a narrative of transformation. Recovery language connects Sacred Family to other day programs that many Circle participants attend on days when they are not at Sacred Family. Although other programs are often referred to as school whereas Sacred Family is the church, implying the different roles these institutions play in congregants’ lives, the church, like other kinds of mental health programs, is understood to offer a kind of therapy through its programs.
Mason describes Sacred Family as therapeutic when he tells me his story. He began coming to the church after he experienced some “issues with [his] mental health” and lost an apartment that he had lived in for more than ten years. He moved in with his family, and they recommended that he come to the church because they knew it had mental health programs. Now he participates in all that the church has to offer: arts, bingo, yoga, support groups for individuals with diagnoses of mental illness and addiction issues, Wednesday evening church services, social time with interns on Wednesdays, meals, morning prayer, and a NAMI Connections group. He explains:
[T]he whole program is beneficial to me, because being bipolar you have a manic episode, and then you have a depression episode. And coming here after a manic episode, it somewhat prevented me from going into a depression by interacting with the people that [have] mental health issues. Even some of the staff deal with issues, and so that was good. And being involved in art programs, it’s somewhat like a group therapy. To a certain extent, it keeps your mind occupied, rather than just sitting and dwelling on your problems and your issues. Last year I had a lot of trauma, you know. I had some events that took place that led up to me coming completely off my medication. And being bipolar, when you come off your medication, you really go into a manic state or high, that brings about euphoria and then it leads to confusions and that leads to hospitalization or institutionalization or incarceration, which this time, I went through the incarceration problem. Before that it had been a long time, since the ’80s, that I’d been hospitalized.13
He goes on, “Over the years, I’ve been participating in mental health programs, group therapy, stress management, anger management, substance abuse programs and things like that, and dealing with the thought process, and being bipolar.” As a person with bipolar disorder, he finds that “coming to Sacred Family . . . it just gave me something to look forward to the days that I came here, to be active and be around people that can remind me that I could be worse or I could be better, but I’m just grateful that I’m alive. Some of the staff who have [mental health] issues are actively working to provide services to people who do need help.”
While mental illness and communal participation are often interpreted though language that is not explicitly religious or Christian, these frameworks are also used alongside ecclesial claims that emphasize the inherent equality in those who gather. Sacred Family and its members refer to the transformation of loss through liturgical rhetoric: restoration of dignity, conferred through baptism and through the love of God; the relational obligations of children of God and the unity of a community of people who share love and friendship with one another and with God. Likewise, congregants may refer to their losses as caused by mental illness, but they also attribute suffering in their lives to the will of God. As Miriam remarks, God saw fit to work her life this way even if she doesn’t understand why. Circle participants are often willing to attribute their hardship and hopes to divine agency. At the same time, therapists, doctors, caseworkers, and caregivers are frequently cited as important agents in the navigation and interpretation of everyday obstacles and choices.
Such varied frames for naming human experience provide different tools and lenses for those who use them. While they are often used in complementary ways, competing references also create uneasy coalitions, particularly as one congregant names another’s experience in relation to their own. Is this person I am speaking about my brother, a patient, a client, the poor, or crazy? Is she part of them or one of us? Is she low-functioning, or is she a gifted child of God? Am I a friend in mutuality or a staff person who enforces community rules? Is she a priest who buries one of her beloved congregants, or a fundraiser who supports recovery of people marginalized by mental illness and poverty? Are Circle participants teachers who help to shape and guide the interns who learn from them, or are they a demanding crowd from whom church workers, as disciples of Christ, need to seek rest from time to time? This plurality of references provides a window into the multiplicity of roles assumed by those who come to the church, different frames for naming and knowing another’s life. They mark the ongoing struggle of a community that resists practices of segregationist charity but is also embedded in systems that interpret poverty, blackness, and mental illness primarily in terms of lack or deficit, and poor people with mental illness as unfortunate, needy recipients of charitable services.
Implied in a variety of overlapping discourses are also visions of what kinds of transformation a congregation desires for itself and for those who gather. Restoration of community, recovery from a mental illness, cure of a disease, and healing in response to suffering offer different paradigms for tracing the trajectory of a human life. Sacred Family is a coalition where the struggle for names adequate to each person is essential to its aesthetics of suffering, healing, and claiming one another.
Christian liturgies both invite and anticipate names for those who suffer. Liturgical impulses that reach back deeply into the traditions and texts of the church encourage prayers to God for the transformation and alleviation of suffering. They offer patterns, gestures, and language for the naming and anointing of those who are sick. Thus, in his meditation on the liturgical imperative to bring human pathos to the divine ethos, Don Saliers recalls a fifth-century petition from St. James’s liturgy: “Remember, Lord, those in old age and infirmity, those who are sick, ill, or troubled by unclean spirits, for their speedy healing and salvation by you, their God . . . ” The prayer goes on to ask that God “disperse the scandals, abolish wars, end the divisions of the churches.” Commenting on this prayer within the scope of the church’s liturgical work, Saliers argues that “to pray with the people of God is to remember the world, to be in dialogue with God about the sufferings and yearnings of the whole inhabited world.”14 Such dialogue requires the church to name these sufferings and yearnings. The conundrum of a community, where loss and pain are disproportionately experienced by some through experiences of mental illness, ableism, poverty, and racism, is that the naming of suffering and yearning can evoke pity, condescension, and stigma. Petitions by and for some kinds of people both mark divisions and erase differences among a congregation.
At the heart of Miriam’s reflections on her own struggles is the thought that she might be thrown away by those who regard her suffering but disregard her struggle to embrace her own life. Like Miriam, theologian Simone Weil reminds us of the difficult and powerful asymmetries inherent in situations of affliction. In Weil’s view, “the strong” are likely to perceive “the weak” as “things.” Those who suffer often lose their relational identities as subjects or persons when beheld by those who fear or pity them. Claiming relationships of solidarity across vast differences of experience and asymmetries of power is practically impossible. Weil frames this impossibility as spiritual opportunity when she describes both “the preservation of true self-respect in affliction” as something “supernatural,” and “love for our neighbor, being made of creative attention” as something “analogous to genius.”15
Absent the genius of creative attention that is true love of neighbor and the supernatural self-respect that is true love of oneself, to misname a human life is commonplace. Indeed, the typical turn to pity or charity as response to disability has often resulted in the misnaming of disabled lives as either tragic or inspirational rather than ordinary.16 In light of such misnaming, Eiesland argues that we need to pay attention to the creative means through which ordinary people “incorporate contingency and difficulty” into their lives and hold themselves together through relationships, technologies, and forms of expressions.17 Such creative attention requires naming the human body as both “habitable and inhospitable—a body of plenty and privation.”18 It also supposes communal practices by which ordinary people are enabled, through the support of others, to hold themselves together and to act out against discrimination. Creative attention names not only individuals but also coalitions that are both erotic and political, whose struggles involve desire for one another rather than pity or condescension.19
With such modes of condescension and creative attention in mind, in what follows I investigate three rituals of Sacred Family’s typical weekly liturgy that explicitly invite the community into the arts of naming: rituals of healing, health care, and friendship. By rituals, I mean patterns of repeated activities that require communal participation and involve constellations of words, gestures, and responses that shape the community of Sacred Family over time. Such rituals illustrate the struggle for adequate names for one another and for God, names that are essential to the work of those who worship God together. A consideration of the repertoire of names used in these rituals reveals the tensions between multiple frameworks and discourses for naming persons and relationships at Sacred Family. Each set of rituals anticipates particular kinds of needs and desires that another might have and uses a set of names to respond to it. But each also reveals limits in the language it employs, and thus echoes the struggle for adequate names for oneself and another that such rituals perform.
At a Thursday morning staff meeting, Father Brian begins with a prayer for the healing of the world. After the prayer, Eve asks, incredulously, “Healing of the world?” as if she’s overwhelmed with the thought of such an impossible task at the beginning of a staff meeting. “One germ at a time,” Father Brian jokes. After an update on the status of picnic tables and path maintenance, the staff name particular Circle participants about whom they are concerned. One by one, they offer names to the Circle staff for additional wisdom or more information: Edgar is in the hospital, Nicholas has a brain tumor, Tanya is looking fragile, Denny has been losing weight, Raymond has been acting inappropriately with the nursing students and has been asked to stay away until he expresses desire to change this behavior. In many of the situations named, the one doing the naming neither suggests nor intends intervention, but rather attention and regard for each person.
Such naming of community members and their needs is not only the work of the staff but also the regular work of the community. Sacred Family’s weekly liturgy differs from many other churches in its regular emphasis on healing services and prayers as practices in which congregants can name their lives before God. Every other Wednesday, a liturgy of healing and anointing takes place. After scriptures are read and prayers for healing are spoken, two long lines form in front of the priest or a deacon or pastoral intern. Many congregants wait their turn to offer their concerns and to allow another to pray for and anoint them. Additionally, most Sundays, optional prayers for healing are offered in the back of the church after communion: a few congregants kneel at a wooden bench near the door during the service while another congregant faces them, naming them, hands resting on their shoulders, to pray for them.
As a researcher, I come to these healing rituals aware of the criticism and suspicion that many disability scholars, activists, and theologians bring to the Christian church’s rhetoric of healing and the misnaming of disability as tragic through such practices. Many disabled persons remind us of their experiences of the violence of healing rituals: experiences of being publicaly prayed for again and again in the desire for eradication of disability; moments of being approached by strangers in public spaces, who desire to lay hands on a disabled body and pray for their bodily transformation; and language that imagines the healing of the whole world through metaphors of blindness, deafness, and brokenness transformed.
Disability studies scholars Snyder and Mitchell, reflecting on biblical motifs of healing, argue that Christian desires to imagine a body-mind healed and restored diverts attention from the more difficult work of imagining a world with adequate social supports for persons’ well-being:
the restoration of bodies to normative health through acts of faith healing ultimately devalues our commitments to the demands of embodiment overall. Miracles of the body (that is disability cures, the alleviation of chronic illness, resuscitation of the organism from non-being etc.) function as a form of deus ex machina in stories hard-pressed to resolve corporeal crisis in any other way.20
Theologian Sharon Betcher punctuates the bitter effects on those often targeted for such attention and healings: “The Spirit and its healing efficacy? Believe me, most disabled persons have been exposed to the fervor of its promise and the bite of its rejection when our bodies proved heretically resistant to cure.”21 Betcher also criticizes the trend in modern, liberal, Christian theologies to turn away from ideals of supernatural power to heal and toward the wonders of modern medicine: “While liberal theologies set aside supernaturalism, our close alliance with the miracle of modern medicine leaves us with a comparable anticipation of health as normalcy. But to wish me normal is no kindness, no generosity of spirit.”22
Eiesland describes her own experiences with faith healing as more ambiguous. While she acknowledges the negative effects of many healing rituals, she also claims the power of laying on of hands “as restorative and redemptive. These physical mediations of God’s grace have often kept me related to my body at times when all of my impulses pushed me toward dissociating from the pain-wracked, uncomfortable beast.” She points to a charismatic meeting when a group of nuns responded to her pain, alleviated her isolation, and revealed her “spiritual body” through the laying on of hands.23 Thus, while Eiesland invites a critical stance toward the desires instantiated and expressed through healing liturgies, she also recognizes their potential in claiming persons as desirable within Christian communities. Healing rituals might likewise name belonging and intimacy within community and provide some relief from pain.
At Sacred Family, congregants heartily embrace the optional Wednesday healing ritual. In a liturgical community where congregants are often selective about the elements of a liturgy in which they participate, such ready responses signal a compelling resonance between the formal gestures of the liturgy and the desires of congregants. I entertain multiple interpretations for such eager participation: the depth of concern that congregants experience for their own well-being or the well-being of those they love, their desire and faith in God as an agent of change in their lives, a moment when the official liturgy acknowledges the sacredness of touch and gesture that unofficially play out within this community at other times, and a unique Sacred Family ritual that encourages one-on-one interactions and that invites each voice to name something about themselves in the formal liturgical space. Because this ritual of healing is simultaneously public and also private, within the eyesight but out of the earshot of other congregants and researchers, I have limited access to the healing configurations that take place.
Then one Wednesday evening Wallace suggests that I go forward to participate in the healing and anointing ritual myself. While I intended to participate at some future time, I am caught off guard. What should I bring to the front? When I equivocate, Wallace urges me on. I’ll go if you go, he suggests. I ask if we can pray for other people, and he assures me that we can. He tells me he is going to pray for his family. We stand one behind the other in a long line of congregants. While we wait, we greet the people beside us in line who are waiting for Father Brian. A few of those who wait for prayer embrace one another.
As I get closer to the front, I can see Deacon Elizabeth place her hands directly on each person’s head. In contrast, those who face Father Brian put their hands out, he touches his hands to their hands or shoulders and asks: “Anything special?” but their responses are inaudible. When I reach Deacon Elizabeth, I name a friend, Sophia, who has cancer. I haven’t seen or talked to Sophia in years; I have heard about her health struggles through a mutual friend. Yet in this moment I name and claim her as a friend. The deacon’s prayer for me emphasizes healing in body, mind, and spirit both for me and Sophia and ends with a prayer for our joy.
Standing in front of Deacon Elizabeth, I recognize the intensity of this work of praying for each person one by one as we bring a motley diversity of concerns and petitions to the front. On another day, when I ask the deacon about her participation, she emphasizes the non-verbal communication rather than the spoken request: “Sometimes they don’t even need to tell, it’s just, when I make eye contact with someone in that setting, they are coming to me because they feel they need something, and they think I can help them access that. It seems like an enormous privilege to me.”
Ginny, another congregant who works for a disability advocacy organization, offers prayers for healing on Sundays after communion. In her description, healing prayer forms an intercessory triangle that is mysterious and intimate to both persons involved in the effort.
It is a very private, a very confidential moment, but it’s where I get to know people and where people get to know me, and where . . . I don’t say, ‘oh my goodness. what am I going to pray?’ It’s like we’re in communication with God, and I can pray for things, and people say ‘oh, thank you!’ so it’s a very three-way thing. I’m there to pray because I believe prayer changes things. The person is there to pray because they believe prayer changes things. But half the time we neither one know what we want, or I don’t know what they want.
“So there’s a mysteriousness to it?”
“Yes, there’s a mystery.”
“This is something I can do. I think this is something a lot of people feel uncomfortable doing.” She goes on to describe the language she uses to name those for whom she is praying: “Often when I’m praying for someone, I’m praying for my friend, my sister, or my brother, but it’s very meaningful, and I have seen the depth of love for each other, love and trust in God that I don’t see any place but that kneeling bench.” She clarifies that she is not the healer. “People ask, ‘Are you going to do healing this morning?’ and I say, ‘I am going to pray, and God is going to do the healing.’ ”
Knowing that Ginny advocates for people with disabilities, I bring up the ways that the disability community challenges religious and Christian discourses of healing. Ginny responds:
Well, let me make this personal. People will say to me of Belinda (the young woman of whom she is a friend and guardian), ‘What’s wrong with her?’ And my answer is: there is not a thing wrong with her. Not a single thing! Do I pray for healing for Belinda? No. I pray for blessing. I pray for continued health. And I have that struggle; my mom had cancer. Did I pray for healing? I, I remember saying to God, ‘I don’t know, you know. You’re in charge. I love her. I don’t want her to hurt.’ You know. So all I can do is bring this concern. You know, I heard a sermon . . . that the Scripture doesn’t say, ‘Now organize your prayer concerns. Get them organized. Make sure they’re organized. Make sure they’re legitimate. Then prayerfully on your knees, in quiet, take them to God.’ It says, ‘Cast your cares upon him!’ which kind of means as you’re running, you’re throwing ’em in God’s direction. (We both laugh.) And so I do pray for healing if people ask for healing, you know, but often times I find that in the prayer I’m saying, ‘Lord we don’t know what healing means, but you do. So whatever that means, please grant it!’ You know, who are we to say that having schizophrenia is a problem? Society has made it a problem. For my beautiful [relative], it’s not schizophrenia. But we don’t see that he has a problem; we wouldn’t want him any other way, you know. I’m just so glad when he reached the point of his life of saying, ‘God made me this way, and God doesn’t make mistakes. I don’t understand, but isn’t that good enough?’ So do I want Omar [a congregant] not to hear voices? It’s fine with me if he does, but I can ask God to keep him safe and to help him know when he’s being tempted to do things that aren’t safe.
In Ginny’s analysis, rituals of healing name human fears and desires before God for God to sort out and to work with as God sees fit. Healing prayer does not seek to remove disability but plays a role in the radical acceptance that congregants claim for themselves and for others. In a highly organized formal liturgy, Ginny imagines healing prayers creating a safe space for potentially disorganized desires, desires that neither the petitioner nor the one who speaks a prayer fully understands. Such forms of healing suggest that to offer one’s anxieties and desires to God is more easily done with the accompaniment of another’s voice, touch, breath, hope, trust, and imagination.
Having taken up this discussion with those whose acts of naming guide the healing prayers of this community, I also explore its perceived meanings with those who come forward to name their needs and desires before God and the intercessor. One morning at the art program I bring up Sacred Family’s healing liturgy with two of the artists. Kayla tells me that when she goes forward to ask for prayers for healing, she prays for marriage for herself and for the whole world. She goes on to explain the role that marriage plays in healing: “You can be healing anything that needs healing. I chose to pray for not only myself but [for] everybody [who] needs it, like the world . . . everything would be better. I don’t know how they feel about this, but this is my opinion: if everybody would get married and let marriage grow.”
“Hmm,” I make a surprised sound, pondering what it means to let marriage grow.
In response, she continues: “They don’t know how to do it? I could tell them.”
“So why would marriage make the world better?” I’m trying to understand.
“Because two care more.”
“Care more?”
“Yes, care more. There’s two in the house. One gets sick, the other one can pour the bread, pour the food. And it’s a lot that each, that both of them could do together. They could clean up the house together and never get tired. They could go to the movies; that way one person ain’t got no business sitting up in a movie by hisself. And if you get a partner to go with you, it’s okay, but you never know what’s going through their mind just as well as you know what’s going through your mate’s mind. But your mate is always a gender to you. Nobody knows like a mate know another mate.”
“So it’s about being known?”
“Yes, and loved,” she concludes.
Rose, sitting next to Kayla, insists that marriage is more complicated than this: “You can’t just count on the marriage because lots of times, things change with the marriage.”
“I pray for that too,” Kayla interrupts.
Rose talks about the possibility for betrayal that exists in marriage, but Kayla sticks to her position: “I need to have marriage because I need somebody that is strong there with me. I need some love from that person and give that person back love. I understand I can find another friend to do it, but another friend isn’t going to get to the nitty-gritty with you. (We both laugh.) You know what I’m talking about.” Kayla goes on to explain, “They (friends) have their own life to live, and when you’re married, the life is combined.”
From a disability perspective, we might conclude that Kayla’s dream of healing, while not a dream about her individual body-mind, nevertheless assumes the power of normalcy. She imagines the best form of community, love, and social support through the institution of marriage and through the name of wife or mate. Kayla dreams of marriage, when marriage is a form of community in which many at Sacred Family do not currently participate even as they desire romantic partnerships. At the same time, Kayla’s description of marriage resonates with an ideal of companionship that the church names as one of its most important responses to the needs of those who come: supporting friendships and loving relationships that are life-giving to those who enter.
As I listen to Kayla and Rose debate and disagree about the healing efficacy of marriage, I find it appropriate that the healing prayer invites us to bring these disparate, even discordant, desires and to name them to God with the help of another. I compare Kayla’s desire for marriage to the way Rose describes healing at Sacred Family during a different conversation: “If we get sick, we can be healed. Yes, we see lots of healing. When someone needs help by getting somewhere to stay, that’s healing.” She goes on to enumerate other examples of healing, such as when Beatrice brought a blind man, whose name she has forgotten, chocolate milk. “That’s healing, that’s helping that person out, that’s giving a helping hand.” Later in this conversation, she comes back to this topic of healing: “People come there with no clothes, no shoes, and they will go and get shoes and clothes from the clothes closet, to go on people’s feet, coats to go on their back, clothes to put on their body.”
“And that’s healing?”
“And that’s healing . . . that will keep them from getting sick.”
Kayla and Rose map the church’s work of healing through different kinds of knowledge, ways other than diagnosis of illness or the identification of a cure from disease: healing comes from good caretaking and companionship. Kayla imagines the healing of the world as one in which each person shares a name and is therefore deeply known by the one with whom life, work, and play are equally shared. Rose, too, imagines the church’s participation in healing as its ability to know and name what each one needs: clothes, food, chocolate milk, preventing sickness. To be able to participate in the work of healing, one must not only call on the name of God but know the needs of those in whose healing one participates.
Weekly rhythms at Sacred Family are defined not only by rituals of common prayer but also by health care practices: checkups, health screenings, consultations, and educational workshops provide a different set of practices and words with which to identify one’s needs and desires. Many congregants value the fact that health care professionals attend to them during their time at Sacred Family. Many eagerly dialogue with nursing students about their own health issues, whether or not they follow the advice set forth. While not overtly liturgical, these rituals nevertheless shape an ecclesial space in which people are known as more than patients or consumers. Such relationships between Circle participants and those who offer medical advice take on a tone that is shaped by the possibilities of ecclesial rather than medical space. A nurse, for example, describes the church as a place where she can only make recommendations; she cannot prescribe medications. She is limited in what she can do for congregants, but she also embraces a space where she can foster relationships of trust and respect based on a community of joy rather than self-improvement. Thus, she urges a congregant to see a medical doctor at a hospital for high blood pressure and also to write poetry again. Naming him as poet rather than patient fosters a different set of relationships (mentor and artist rather than nurse and patient) that helps them both pay attention to his overall stress and well-being. Likewise, she expresses pleasure in being known at the church not only as a healthcare worker but also as “the nail lady”—the one who selects an assortment of nail polish for foot clinics and pedicures.
Such multiple frameworks for relationships can also cause tension. One afternoon, Lamar, another health care worker who also experiences mental illness, stops me in the hallway to tell me about saving a church member from choking during lunch the previous day. After saving the congregant, he later went to document this event, describing what had just happened to “Patient 57.” In the process of writing, he suddenly stopped himself and wondered how he could write about a human being, whose life he had just saved, in such a cold and detached way. Later he would explain that the church gives him a way of engaging people “human to human”—a kind of interaction he distinguishes from his former work in the hospital. In such human-to-human relationships, he plays the serious role of helping to save lives at the church and is also an entertainer and a clown. He wants to become a better advocate for congregants and to fight against the neglect he worries that some of his patients/fellow congregants experience in their personal care homes. As he searches for other ways to name the people for whom he provides medical care, he also takes on other names and roles, keeping fluid the relationships that might ossify between medical expert and mentally ill patient. At the same time, he also names some of the people he sees as “doomed,” as those for whom there is no hope because of their mental capacities and poor health.
While Lamar describes his relationship with congregants through multiple roles and names, those who come to the church, particularly those who spend short amounts of time within the community, struggle to establish relationships beyond a medical model and to respond to the health concerns that clients face. For example, one group of nursing students lectures the community on topics related to health: good exercise, nutrition, and bedtime routines. Their advice for self-improvement assumes a level of autonomy that appears dissonant with the everyday worlds that many congregants negotiate. Many live in group homes with limited control over the food they consume, the shoes they wear, and the bedtime routines they choose within regulated communal spaces. Some of the pleasures that may be essential to the passing of time each day—a walk to McDonald’s or a walk to the corner store for chips and a soda—conflict with the ideals for healthy living proposed by the medical students. One group implicitly names another as free agents of their own health and wellness without acknowledging the financial resources and the institutional structures and strictures within which patterns of eating, drinking, bathing, dressing, and exercising are constrained.
While many Sacred Family congregants struggle to retain the tips for healthy living nursing students offer them, for their part students also struggle to acquire the relational knowledge necessary for interaction with congregants. For example, one morning I notice a group of the nursing students standing together talking; only one of them sits down near Circle members. She clearly desires to interact with Circle participants but does not seem to know how to initiate such interaction. Engaging her in conversation, I discover this is the second part of her group’s clinical rotation in mental health; their first took place at a psychiatric hospital. She comments on the differences between the two settings. In the psychiatric hospital, people are in crisis and on more medication. At Sacred Family she witnesses more compassion for people. But here she finds it more difficult to get to know people. It was easier at the psychiatric institution where they had charts, and she could read people’s diagnoses and ask them about details on these charts. However, she thinks that if her group came more often, participants might recognize them, and it would be easier to interact. She imagines the medical tools of chart and diagnosis as social tools to facilitate interactions, but she also acknowledges that more time might produce different social tools, such as more adequate names to foster dialogue.
I recall her comments some months later when another volunteer and longtime Sacred Family church member also articulates a desire for knowledge of congregants’ diagnoses. Unlike the students, Melanie has considerable experience with mental illness, both as a parent and as a health care professional who enjoyed spending time with her schizophrenic patients. During home health visits, she was troubled by the very brief amounts of time other nurses spent with their mentally ill patients: just enough to take blood pressure, pulse, and give medication, but not enough to interact with them, or to ask about their housing situation, or to attend to other health concerns. In contrast, she enjoyed spending time with her patients, with whom she got along well: “Maybe it was that they sensed that I didn’t fear them. A lot of people do fear people with mental illness.”
She is also now a parent with a child who has mental illness and has struggled with the stigma they experience, for a time keeping her child’s mental illness a secret from the neighbors for fear of their reactions. Nevertheless, even with her own intimate knowledge of and experience with psychiatric disability, she recalls a time when she was shocked when a Circle regular turned around and hit her after she touched him on the back. She has since come to understand that he does not like to be touched except from the front; she attributes his response to a diagnosis she did not know about at the time. She imagines that if she had known his diagnosis or knew the diagnoses of others, it might enhance communication across difference. As it happened, this congregant was suspended for a time for hitting her. He never apologized when he returned, but now they shake hands during the passing of the peace, which seems significant to her. Thus, Melanie refers to both the medical (diagnoses) and the liturgical (sharing peace with one another) as frameworks for maintaining healthy relationships between members at Sacred Family.
But Melanie also describes for me other ways that Sacred Family encourages its congregants to know one another and to support one another’s well-being through frames that do not rely on medical diagnoses as mediation. She describes her relationship with Henry, a congregant who often experiences intense anger. “I’m really having a hard time,” he might say when he comes to help her with daily tasks at Sacred Family. When she asks him about his bad day, he describes the voices that talk to him. Henry gets tired of trying to argue with these voices because they want him to do bad things; he doesn’t want to do bad things, so it gets him down. He also tells her how voices “got to him” a couple of times, and he had almost committed suicide. When he is upset, she and another longtime volunteer and congregant reassure him and make him a hot beverage. He then sits by himself in a corner of the parish hall for a time. According to Melanie, by the end of the day, he often says, “I’m feeling really great.” She concludes this story by expressing a desire for more opportunities to exchange stories with congregants who come. Sometimes she feels that completing her volunteer work at the church limits the amount of time she listens to stories of struggle that congregants might otherwise share with her.
Melanie imagines that the challenge of relating well to one another at Sacred Family church is affected by North American society. “We tend to look at people, and think ‘are you better than they are’ or ‘are you less than they are,’ and you have to fight that all the time.” She recalls the gradual communal acceptance of a trans woman who comes to the church, as well as more and more openness around members who not only have mental illness but are also gay. Sacred Family, like other communities, is a place where those who attend continually compare themselves to one another through a variety of different statuses both within and outside of mental illness. And yet, she claims, the church is a place where congregants are named and known in ways she has never experienced in other contexts. She describes it as “learning to love the smallest thing in people, you know, it may be that the constituent has a particularly nice dimple or . . . a good smile, or the way that they come up, and say, ‘Hi Melanie.’ It’s little things like that. It’s the only world where, where, little things like that mean a lot, at least to me. It’s very important.”
Melanie’s description resonates with other descriptions I have received of Sacred Family—ones that name another congregant’s face or laugh or smile or tone of address or walk or irritating habit as essential to an image of what Sacred Family is. A bodily mark or gesture or the face of one is named as an image for the church as a whole. The power of such naming on a communal level resonates with the similar work of identifying that goes on in the easy yoga circle as we seek healthy bodies and relationships through stretching and breathing together. As yoga practitioners, we name together the different parts of our anatomy in order to become familiar with our body-minds. Invariably, anatomical names give way to other more playful names, such as naming the spine as a slinky toy. Each name focuses our attention on both the wonder and the pain of our bodies as we move and breathe. Just as attention to the small, repetitious movements of yoga helps practitioners move more easily through their own bodies, so attention to the small repetitious sounds and sights of community invites more fluid interaction than those prescribed through other kinds of roles and designations. Such names that require creative attention to our own bodies and to the bodies and gestures of others anticipate a greater degree of intimacy and belonging than the sole knowledge of a proper name, given upon introduction. At the same time, such attributions (such as associating Wallace and Joshua with their remarkable, jubilant, raucous laughter among other descriptors of them) also evade the hierarchies and statuses of other designations such as titles like volunteer or categorizations such as “people with mental illness” through which relationships can be circumscribed and negotiated.
During one Advent, I sit beside Daniella on the bus ride back from an outing to see the Christmas lights. We discuss the pleasures of the outing and of the Christmas season. Eventually, she talks about the house she lost, a three bedroom near downtown, with a backyard where she liked to sit outside and watch the squirrels and the birds. I imagine aloud that it might be hard to go from having your own house to living with a lot of other people. She says it was hard at first, and she used to stay upstairs most of the time, but now she comes downstairs more. “I have learned that to have friends you got to be a friend,” she concludes. She says that it has helped coming to Sacred Family and to another program on Mondays and Wednesdays. She likes coming to Sacred Family better than the other program because of the art and because “more people here know my name, and maybe I don’t know their names, but I recognize their faces.”
Of all the rituals that Sacred Family emphasizes as central to its response to the marginalizing effects of poverty and mental illness, informal liturgies of play, work, and friendship are central to its vision of healing. Such healing through friendship is intended both for the scars of stigma and for the prejudice of those who fear psychiatric disability, for naming loss or desire implies and requires a relationship, a condition for entrustment through which one can expect help or recognition from another. Not everyone is baptized or even a member of the church, yet those who come seek a relation to one another mediated through the church, a relationship that is not familial in a conventional sense but that nurtures a sense of interconnectedness and belonging. When congregants come from worlds where they are not claimed or cannot claim a relationship with others in conventional forms of family and friendship, Sacred Family offers a common name. At times this common name feels sufficient to those who claim it; at times it feels inadequate.
Lillian, for example, describes the struggle of identifying with a church community as she once did with her own family. She tells me that my name is the name of her sister. “I don’t see my people,” she remarks. Her people are scattered. She lived in the same house for thirty-two years until the house went into foreclosure. It was a house she shared with her mother and son. Her son was shot when he was twenty-two. Five years ago, her mother died. When she lost the house, she lost pictures of her grandmother and her great-grandmother and her great-great-grandmother. It was hard, but “God saw fit this way,” she concludes. “I try not to live in the past.” She begins to sing, “One day at time.” And then concludes, “It’s hard to live without family and get used to being alone. It’s hard to know other people the way you know your family.”
Rituals of friendship at Sacred Family involve the struggle to learn and remember another’s name. Rev. Jess begins and ends each Sunday school class by asking us to say our names aloud to remind us that we are known and loved by God. Likewise Laura, the yoga teacher, begins each class by asking that we go around and say our names; she tests our memories, explaining that it is important that we remember each other’s names. But many in this community know each other’s faces but struggle with first names. It is easier to remember the closing phrase of each yoga gathering, “Namaste, the light in me sees the light in you,” than to keep track of the names of all the people who come and go from the circle. Yet even when community members forget each other’s proper names, even when congregants are irritated with or belittle one another, they also know those who claim Sacred Family as their community. Congregants name when a van mate is missing or when someone has a doctor’s appointment and is absent from the circle at yoga. They claim their relationships with and through the church as an important condition for being able to ask for help from another person. Sacred Family offers relationships, through which congregants identify their responsibilities to one another.
Some congregants regard Sacred Family as a form of kinship in light of absent or faraway blood families. Tanya, for example, describes Sacred Family as those who visit her when she’s sick in the hospital, as the people you can call when you have a problem. She also wishes that it were possible to sleep at the church sometimes when you need a break from your home life. Aisha wishes the church gave driving lessons. Sacred Family is also a place where many celebrate the holidays or mark a birthday or a graduation. In celebratory moments, conventionally familial moments, there is often a hope and expectation of recognition from and by others at the church. In some cases, to be church family is to provide a relational space that is not so complicated by past relationships.
This is true not only for Circle participants but also for some interns and nondisabled church members who have had difficult relationships with mental illness within their own families. Sacred Family responds to their losses by offering a different set of close relationships within which to claim those who have psychiatric disabilities and to reimagine psychiatric disability itself. Aaron, for example, describes his strong reluctance to intern at Sacred Family because of a challenging situation with his own parent who has mental illness. He did not want to engage mental illness because he was tired of dealing with his parent’s condition. But through the Wednesday evening rituals of hanging out with congregants, chatting and playing games, he discovered that his familial experiences aided him in developing life-giving friendships with Sacred Family parishioners.
Aaron describes a friendship with a woman at the church. He found her to be quiet, almost unapproachable until one day she was listening to the radio and they discovered their common love of music. Now every Wednesday, when he comes, he seeks her out. “There’s some days she wants to talk, and some days she don’t, but I believe what started off this genuine friendship is that although we are different, we have a lot in common, so we based our friendship off the commonalities, and the commonalties were magnified. So whether or not she understands me when I talk, or I understand her when she talks, we have music in common, we laugh together, and we play UNO.” The relationship has challenged him to extend himself to look for commonalities in those he sees through difference. Such relationships have also given him more confidence to talk to people he meets on the street.
These friendships have, in turn, informed his relationship with his parent. He has started to listen to and understand her better. He had been raised in a church tradition that viewed his parent’s illness as a spiritual illness, a tradition that prayed out of her the demons and “all this craziness.” He now claims healing through a church that names mental illness as “a serious condition that needs to be evaluated by a licensed professional not by a reverend.” Because of his experience at Sacred Family, he feels she shouldn’t be “ostracized and crucified again. She’s been crucified enough. This is a medical condition! So I’ve been offering: ‘Do you want to go to therapy? Do you want to go to counseling? Do you want to talk to someone? Maybe I’m not the person to talk to, but you need to talk to someone.’ ”24 He has encouraged her to leave her own church and to go to a place that is more welcoming and has more of the support she needs.
Sacred Family has also been important to him because it is a place where he spends time with other black men. At the university where he is a student, he is often made to feel like an outsider, that he is not as desirable or adequate as his white counterparts. At Sacred Family he encounters a sense of home and peace through a solidarity and camaraderie with other black men who attend. He names his relationship with others at Sacred Family as a “brotherly or sisterly experience not as a[n] ‘oh, this is them and this is us’ but as a unified sector.” It has also been an eye-opener for him to see so many black men dealing with a mental illness. He feels grateful for a place that is welcoming and open to them in a way they would not be welcomed in other church spaces. At the same time, Sacred Family is also a place where racism results in forms of address that condescend or belittle black congregants in actions that have been upsetting to him. He recalls guest churches that come to serve meals “where you have a white superior who may be trying to give instructions or giving out food or whatever, talk down [to] or talk at a parishioner at Sacred Family.” He questions the origins of this condescension but also identifies its emergence at the intersections of race and mental illness.
Sacred Family provides a place to name and claim mental illness outside the intense context of immediate family. It creates coalition through common identification with those in very different circumstances. At the same time, intersections of black and disability identities result in misnaming; forms of address belittle or condescend to those who struggle for respect. Unlike Aaron, many Sacred Family congregants are more willing to talk about the challenges and power asymmetries of ableism than to talk about the racism embedded in the poverty through which many congregants experience mental illness. Sacred Family is thus both a site for black solidarity and a location for wealthy white condescension and for obliviousness in regards to the effects of racism in situating manifestations and experiences of psychiatric disability. Across these divides, rituals of friendship heal some inadequate names but do not eradicate others.
Another intern named Simone recalls her own struggle to regard the dignity of persons with mental illness, especially in light of her past. Even though she is someone who has experienced the effects of poverty and abuse, she describes the initial prejudice she felt for the kinds of people who gather at Sacred Family. When she first came to Sacred Family,
[T]here was just something here that uncovered something within myself. I was crying the entire time . . . it really took me back to what I was experiencing in my youth and some of the things I haven’t dealt with. I think that’s what made Sacred Family one of my first options. I have two family members; we have a history of schizophrenia in our family. . . . But I know that upon finding out about that, I was kind of distant, and I did develop or already had a prejudice that I never really recognized.
Toward the mentally and physically disabled. And which I didn’t, it left me feeling really inhospitable and unopen, and it’s been interesting how since I’ve been here, my level of engagement with people in general has changed, not just with marginalized communities but just like with people, I’m able to see past who are you to see who you actually are . . . I’ve stopped putting my own standard [on] people and [telling them] this is how you should live. It was done to me, and this is where I am.
In contrast to putting up a standard for people that they cannot meet, Simone names the goal of Sacred Family as she comprehends it: “Here they’re not made to live the life that we feel that they should live. We’re just trying to help them live a more full and dignified life.” She sees this dignity in the hope that parishioners have for their own lives and the ways “they love on each other.” As part of the church leadership, she describes the relationship of staff and interns to the congregants who come to the church:
We’re not here to fix people, but we’re just here to listen to their stories and to affirm that they are beloved members of God’s community and to lay power at their feet. We’re not the ones in power, [but are here to remind them] that they hold power; it’s not often that they’re reminded of that. I like that here there’s no contrast between those that are consumers of the services and those that are providing it, that we’re all, we’re all equally growing, no one’s better than another, no one’s able to give more than another, cause I don’t think I’ve given as much as I’ve been gifted—really encouraging words and wisdom and it’s just nice to be somewhere where you’re not put in such a place where you constantly have to be a provider, like that you’re not held to such a high standard that you can’t meet it, that you’re welcomed as you are, and I wasn’t used to that.
Simone’s description of Sacred Family reveals both the ideals of Sacred Family as well as the struggle for language that is part of everyday interactions. The church offers a set of relationships within which to overcome past prejudices but also offers competing frameworks for understanding relationships of mutuality and hierarchy—us and them, consumers and providers, beloved of God, those who are recognized as powerful and those who need to be reminded that they hold power.
While it is common for Sacred Family congregants to celebrate the bonds that emerge as they share space and time together, there is also a limit to what this community can do and be for each other. Sacred Family cannot play the roles that family members often play for one another. When congregants leave the boundaries of the church for a long period of time, they often lose track of one another. A parishioner moves or is moved by a family member to a new home or setting, and Sacred Family no longer knows where they are. While a constant stream of newcomers brings fresh energy, insight, and friendship into community life, these ever-shifting relationships also create waves of loss.
Aisha engages this loss when she describes both her enjoyment of and her frustration with the interns who come and go. Such newcomers are vital to the energy of the community as their intense interest and enthusiasm are important catalysts for fresh ideas, activities, and conversations. On the one hand, Aisha confirms Sacred Family as important to her well-being because of its friendly, familial relationships, and yet she mourns the different statuses that people within the community occupy. “On the one hand, there are no doctors or therapists here. They actually educate you about your illness, which other places, they educate you but they don’t educate you enough. They treat you like children. But [at] Sacred Family they treat you as if you’re family or a good friend. They’d do anything to help you.”
When I ask her what makes it hard to be a community here, she also talks about relationships: “I like that people are coming here to intern, but then it hurts when they leave. Because, you know, you kind of build, maybe not always a friendship, but you grow kind of fond of the person, so it kind of hurts when they leave. I don’t like when they do that!”
She laughs, and explains further:
I’m the type of person who kind of, I have a wall because I don’t want to get close to someone, and then they leave, and I never get to see them again. That’s one of my issues that I need to work with, and I don’t think the Sacred Family is helping that much with that because they come and go, and they never come back. I don’t like how you may build a real friendship, but there are statuses, and when the person has a certain status, you can probably keep up with them, but it’s not the same as a true friendship where you could go and have dinner or lunch or hang out. It’s not that type of friendship. It’s more like I care about you, but we’re a different status, so that hurts.
She goes on to imagine occupying a position where she could maintain ongoing friendships with interns outside the boundaries of the church: “I feel like I could be in that place one day but it takes time.”
I ask her to talk about her conception of status and what values are behind it. She responds:
For instance, it’s kind of like when a person is just there for interning, or something like that, and they can’t really have a real friendship with you or anything else like that. They can’t really hang out. It kind of hurts. I kind of look for people who are my age or maybe fun or something so I kind of want to keep in contact with them, but you can’t really if they’re . . . Facebook them or anything like that, but I guess it’s like a rule here, or everywhere, that you can’t be a real friend to the person who is a client here. And that goes everywhere.
I tease this out: “It’s interesting because it’s both a church and a community but you also feel you have this client status where you can’t have that kind of relationship.”
She acknowledges the boundaries of church space as the boundaries of some friendships: “I feel like the people I come to see, as long as I come here I get to see them, but if I don’t come here, I don’t get to see them.” She wants to name them as true friends but is frustrated by the implicit rules that govern rituals of friendship here.
“So it’s a friendship that is very contingent on this place? Do you feel like other friendships you have are not as contingent on a particular place?”
“Probably . . . I have plenty of friends who are not connected to this place.” She points out that she might have a relationship outside the space with someone who has a mental illness (someone whom she understands to have the same status as she does) but not with someone who does not. Still, even with this experience of different statuses, she wants to make sure I capture that
[T]his church is a real blessing to many people here. They get a different experience. People who don’t have a mental illness get a perspective of what we’re really like as people: that we have feelings and that we can love and that we’re human beings. And people with the mental illness here, we grow here together, even if we don’t really talk much, we still have an understanding that there’s love here and understanding . . . [this place] helps you more to cope with problems. I think I’ve changed over time because I’ve become more responsible.
“How does it help you to cope with your problems?”
“We go to community meetings on Thursdays, and you talk about your problems, and you can talk about anything that is of the here and now, how you’re feeling, and they’ll give you advice or make you feel like you’re not alone. I went from not being able to take care of myself to being able to take care of myself 100 percent on my own.”
“You live on your own, right? And that was just being able to talk with people about what you were going through?”
“I think I just grew up on my own, but the coping skills help me manage staying on my own.”
“What is growing up? Is growing being responsible?”
“Yeah.”
“ ’Cause you said that in another program they treat you like children, and I wonder what the differences are between being treated like children or being treated like an adult.”
Like, for example, the other place they would . . . they basically gave out a paper and asked you what type of tropical fruits have you tried, and that was like for maybe third graders or something. I’m pretty sure, well, I guess not all of us, I guess I should be more considerate of the people here who may not know a lot, but I feel like that was an insult to my intelligence . . . Or coloring and stuff, which—I guess coloring is fine, but I don’t want to do it ’cause I’ve done that.
“Being an adult is having options?”
“Yeah,” she laughs.
“About what you do and don’t want to do.”
“Yeah.”
Aisha cherishes Sacred Family as a place where she is named as an adult and as a person worthy of true friendship; but she also continues to struggle with the statuses assigned to her through her mental illness and the ways these statuses are performed within Sacred Family’s weeklong liturgy. To be named and regarded as a person rather than a client or an adult rather than a child is not something she takes for granted, and that affects her perceptions of herself. To be named by another as a friend she often experiences as genuine for a time and as deception when other paradigms come into focus.
Inserted into the Christian church, the struggle for good names is both personal and ecclesial. In evoking the rituals and rhetoric through which Sacred Family responds to congregants’ desires and losses, I have attempted to show both the desires and the struggles for adequate names and lenses through which to view one’s own experience, as well as another’s. A congregants employ different frameworks for their relationships with others, they often hesitate or pause, searching for words that convey truths about themselves or about the people with whom they pray.
It is possible to interpret this struggle as a failure of the community to claim the fullness of theological or liturgical language: a failure to manifest true spiritual friendship, or sibling love in Christ, or to demonstrate the bonds between children of God who are one body in Christ. Rather than interpreting such dissonance as a failure, I find it productive whenever this gap allows those who hesitate to pay creative attention to the powers and assumptions at play in any one frame. As Aisha notes, one cannot free oneself of condescension by employing the word friend, or rid oneself of status by claiming the ideal of unity. Rather, congregants must continue to name the hierarchies that separate them from one another and to imagine the conditions for entrustment that would allow them to claim a life together. On the other hand, as Aaron and Simone testify, the desire to call another person friend might also facilitate a renaming of relationships outside the community, ways of regarding familial relationships or encounters with strangers, certain irritations or prejudices associated with disability, illness, and poverty. In the failure of adequate names and in the simultaneous desire for better conditions through which to ask for help and to respond to another’s concern, suffering, loss, or oppression, some relation that cannot yet be named or fully imagined is held in the contradictions. In the hesitations and in the silences a name is given and then retracted or replaced by another.
How, then, might the struggle to name human lives relate to the church’s work of naming God as part of its Christian worship and to the knowledge and love of God that is required? Following a divine name into a world in order to explore that world is a theological task, according to Eiesland. “The challenge for the Christian is to engage one or more ‘names’ of God and to follow these images into the worlds they open,” she argues.25 It requires those whose experiences and frustrations illumine the terrain of inhospitable or habitable spaces for lament, petition, and praise. Certain names for God might open into violent landscapes for human life. For example, Eiesland argues that living with Jesus as the suffering servant or conquering lord has often created a difficult space for disabled to emerge as an adequate name for one who would follow that Christ. On the other hand, naming the disabled God as the one who returns to the disciples after his crucifixion with scars on his body opens a more habitable world for people with disabilities. The disabled God incarnates hope as one who returns without pity or condescension to engage the losses experienced by friends in the aftermath of his crucifixion and resurrection.26
One morning, I chat with Aisha and Andie as they weed a flowerbed at Sacred Family. They ask about my teaching, and I describe to them my struggles to teach Eiesland’s The Disabled God to a small group of students at a nearby university. They resonate with the image and do not find it hard to follow.
“It’s like the song, ‘What If God Was One of Us,’ ” Andie suggests.
I agree with her, repeating the lyrics of the 1995 hit by pop artist Joan Osborne: “What if God was one of us / just a slob like one of us / just a stranger on the bus / trying to make his way home?”27
“I love that song!” Aisha chimes in. “Many people get mad all the time [about the song], but I like it. If Jesus walked the earth once, why he can’t do it again?” Andie murmurs her agreement. Aisha goes on, “That song makes me cry every time. It makes me be kind to all the people on the bus,” she adds and then repeats, “It makes me cry every time.”
In this very short conversation, Andie and Aisha have managed to illustrate Eiesland’s argument with which my students struggled. The disabled God matters because a name for God, a symbol for the divine life, deeply affects our everyday religious practices and the ways we perceive ourselves and one another. Aisha’s desire to be kind to people on the bus is summoned through a name for God.
Andie, Aisha, and I enjoy our common love of this song as we contemplate the disabled God. Then Kayla comes over. Hearing the last part of our conversation, she joins in. “I know where Jesus is,” she tells us. “Have you heard of Japan?” We look at her in surprise. She tells us that if she had plane tickets, she would take us there.
We are at a loss for words. Then Aisha says, “Cool!” as if she is perfectly fine with the idea that Jesus is in Japan. Kayla continues our conversation by adding another song to our theological reflection: “Do you know the song ‘Jesus is on that mainline / Tell Him what you want’?” Later I ask Kayla why she thinks Jesus is in Japan. She has a persistent interest in Japan, sometimes evoking it in her paintings. She says because they have a lot of problems in Japan. She heard they eat dirt there.
What if God were one of us? Aisha imagines a scenario in which we can see all the strangers on the bus as deserving of kindness and in which we are moved to tears by a God who chooses public transportation as her way of travel. I imagine a context in which Kayla follows the disabled Jesus to Japan and finds the Japanese to be other than the people with the problems she has imagined. Sacred Family reveals that even in the space and time of a liturgy that claims God’s infinite love for each one, the church struggles to manifest and articulate this reality. It is difficult to name a world where God is with everyone we meet. It is hard to imagine because we are often strange to one another and to ourselves. It is much easier to pray for the poor and the disabled and the Japanese than to invoke the vivid and manifold array of individuals and relationships summoned through such phrases. Yet to claim God’s name as intimately connected with people we name as other demands creative attention to both God and others. Where God is named as present, those who worship this God must pay attention and homage. When God is named in association with unlikely people and places, this name arouses curiosity. Who is the God who rides the bus? Who is this Jesus in Japan? Who is this One whose holy name evokes curiosity and compassion but resists pity and condescension?
At Sacred Family, multiple interpretive frameworks laid on top of one another blur an image of mental illness, of poverty, of church membership. The blurred image, the dissonant sounds that accompany them, hover beneath the dis-ease of some congregants in describing their relationships with others. Language betrays the inherent difficulties in imagining and cultivating relationships amidst the dynamics of power and privilege that constitute Sacred Family. While at times its members ignore such dissonance, there are moments in conversations and interactions when the inadequacy of terminology reminds those who attempt to speak through them that they require better words than those most immediately available. Such dissonance reminds us that the disabled God, or the mad God, who might also be the poor, black, queer, Asian God, is not often named as such within the walls of Christian churches. If Christ is the one in solidarity with those who have mental illness, then this God is not often in the pews, but is on the bus, on the street, in the psychiatric ward, at McDonald’s, in the corner store, and outside the group home. Christ rises elsewhere. Into the struggle to name God’s location, imaging and relating to Christ though the peace of the Spirit marks a recognizable path of love to what is not yet known.
Meditating on the same New Testament Easter texts in which Eiesland discovers and names the disabled God, theologian Rowan Williams names this Christ a “familiar stranger.” Christ as “alien friend,” whose life opens a new world for the Christian church, is never the possession of the disciples or of the church. The church is continually reminded of the strangeness of the Christ who comes again to speak the name of those who thought they already knew him but realize they do not. Jesus returns to the disciples after his resurrection as one who recedes from the grasp of any who would claim him:
The risen Jesus is strange and yet deeply familiar, a question to what we have known, loved and desired, and yet continuous with the friend we have known and loved. His strangeness and his recognizability are both shocking, standing as they do in such inseparable connection. . . . The risen Jesus returns as a loved friend and brother, and at the same time holds us off: he shows the marks of familiar human pain, yet refuses to be only a consoling mirror-image of our suffering.28
The Christ who appears in the gospel texts is a surprise to the disciples who believe they possess the requisite knowledge of him. Coming to and receding from the church’s grasp, the risen Jesus, the disabled God, calls for the church to journey. In following the stranger, those who seek Christ cannot escape the “consistent echo of disorientation and surprise” that hovers around these stories of Jesus’s return to those who are his followers.29 Or, as Wallace, joking, once put it to me during a church service, in his playful reformulation of a eucharistic response: “Christ has died, Christ has risen, Christ is gonna get you!”
Reading Sacred Family through the Easter texts, in the company of Eiesland and Williams, we might say that human lives are often got or caught or found in the gaps and beats between the names, the terms, the tensions in what is articulated (a place of unity and belonging premised on the dignity of each one) and what is manifest among those who gather (a place where true friendship feels impossible). Here there is a family that is not and cannot be family. Here friendships nourish some, and many fall short of lasting relationships that work with the nitty-gritty of love over time. Here adults claim one another as children of God and address one another, condescendingly, like small children. There is a patient who is also a poet and gardener. There is a medical expert who has mental illness and is a comedian. There is a nurse who is a nail lady. There is a woman who lives constantly in the struggle between death and life and still embraces her life. In the building and witness of this community, even imperfect names hold the hope for more and better words with which to name another. The dissonance between one name and another sounds and arouses the desires of congregants for a different understanding of themselves in relationship with themselves and others. There are questions to be asked: Which names are harmful? Which names give life? Which words are adequate to the task at hand?
To discern the right names for relationships in our liturgies is never easy, for our language for human life is halting and impoverished. Some names we must throw away in order to regard the person whom we address with the honor they deserve. Some names, however, can lead us into life together, and we must pursue, try on, and find these names. If God calls Sacred Family as the church, as a beloved community, as a circle of friends, this God must name and nurture desire not only through tension but also affirmation, claiming those who gather as those who belong to one another and who respond to one another’s needs in recognition of this belonging. If dissonant names signal confusion and desire, what then is the sign that any name resonates with the relationships that arise among a group of people that gather in Jesus’s name in the invocation of the Spirit?
Occasionally, at Sacred Family, the liturgy invites such moments of illumination, not as single names, but as a crescendo of names performed by the whole community. One Wednesday evening, for example, on the celebration of the Eve of the Ascension, the church gathers to remember the life of Albert, a community member who recently died. Before the sermon, as is the Sacred Family tradition, the priest gives an opportunity for congregants to share memories and stories about Albert. One young man begins by saying what a nice guy he was. Kayla remembers how he used to stroke her chin and teased her about having a beard. She says she is really going to miss him. Another man remembers that he was a great artist. Shonda recalls his classy dress and his classy smile. Deacon Mac appreciates that Albert could trash talk with him. Father Brian reflects on the kinds of suffering Albert had experienced and the ways he treated others with respect even when he was suffering. Hannah stands up and holds a colorful painting that Albert made of a small bird sitting on a barbed wire fence. The community breaks into a spontaneous round of applause for this work of art, a physical reminder of Albert’s life and work. In the course of this service, Albert’s life, his struggle and his hope, is named in many different ways, refusing one-dimensional portraits that might be summoned through names like mental illness or program participant, or even child of God.
If there are moments of dissonance that are part of Sacred Family’s frames for acknowledging relationships, then there are also resonant refrains when an accumulation of names responds to the question of how one will know when a name is adequate to the person who is loved. Such moments more fully name the life of the person they symbolize and thus generate an experience of beauty within Sacred Family as community. The performance of such names reflects the artistries of social interaction that give rise to them. They amplify the desire of a community and of God for a person who might otherwise be thrown away.
Adequate names matter. They matter to the embrace of the beauty of human connection and well-being, even when those connections involve a struggle between life and death. They require many different relationships over time. They matter not only to the ones whose lives deserve many more words than poor or destitute or bipolar or client or constituent or staff or vicar or us or them; they also matter to the naming of God, who is addressed through language that connects God to and through God’s relatedness to the creation. Christians often name God—know God—as one who heals disability or illness, or as the one who loves the poor and destitute, or the one who reconciles black and white people, or as Salvation or Love. But the arts and struggle of naming at Sacred Family reveal that God is only known and loved when those words themselves become flesh, again, so that the complex lives they symbolize become shape and sound and relation rather than stereotype or caricature. For, if God is the One who loves the poor and destitute and heals the sick, then this God is known only when the lives of “the poor” and “the destitute” and “the sick” are not reduced to one-dimensional symbols of complex human experiences and Christians begin to know the multifaceted people who elicit such depths of divine love and the coalitions that help God’s people in the struggle for life. Words become flesh when there is sufficient time and ample space to know and love another human life in multiple forms. Thus, the work of the people in a liturgy is not only to name God but to name well those with whom and about whom Christians pray.
Taking on the particularities of human flesh, such names both touch this God we name and reveal their own limits, especially when Christians pray for healing and transformation of the world. God’s name is not known or loved apart from the creative struggle for adequate human names. This struggle to find good names and pay creative attention to relationships of difference is the journey of those called to discern and name Christ’s presence among us. Such naming occurs through desire, rather than an illusion of control: a desire to know where God is, with whom God sits, how God heals, and through whom God befriends those who hope and struggle to embrace their own lives.