Abstract

The lived experience of disability is increasingly prominent in autobiographical writing. Numerous collections of creative work attest to an expanding market for stories that challenge prevalent stereotypes associated with disability. At the same time, scholars have begun to call for the incorporation into disability studies of poststructuralist critical theory, attempting to extend our understanding of disability beyond both medical and social models. Recent work presents disability as a diverse and ever-changing set of bodies and experiences that eludes any sort of universalizing metanarrative. A further question concerns the convergence in life writing of theory and faith: how do disabled writers interrogate stable identity while also representing religious belief? With close attention to memoirs by Nancy Mairs and Stephen Kuusisto, this paper explores the articulation of "disability theology" by writers committed to challenging the forms of stigma that attach to bodies marked by the difference of disability, as well as bodies generally as they are denigrated by Christianity. Do disability/faith narratives push inevitably toward the resolution of holy reward? Does faith somehow require self-representation as triumphant consciousness, transcending physical failure? How are narratives of spiritual compensation, which tend to suggest that disability can only be endured with the promise of heavenly reparation, inherently problematic from the perspective of disability activism? Conversely, how might narratives that resist cultural pressure to subordinate anomalous bodies to the radiance of the soul or the proficiency of the mind broaden our awareness of the locations and meanings of disability?

Keywords: disability narratives, faith and spirituality, Reynolds Price, Nancy Mairs, Andre Dubus, Stephen Kuusisto, Ruth Cameron Webb

In a striking passage from "Ars Poetica," a poem written for his disabled brother, Greg Fraser bids farewell to the notion of "grace" as a divine state that "free[s] you from the confines of your clay," and urges his readers to "call God 'cause' and be done with it" (2003, 4, 5). Fraser presents his brother's condition–severe spina bifida–as a consequence of "cells," "genes," and the "false logic of his DNA" (3), but does not thus subscribe to a medical model of disability. Rather, he critiques the assumptions that transform a random physical event into a tragedy, one that fractures family dynamics and impels a turn to faith as both explanation and consolation. Because the poet's parents perceive their newborn as a "miracle / gone wrong" (5)–and because they are encouraged in their sense of "failure, doubt, / fear" (4) by the doctor who delivered him–they consign the boy to a hospice and in turn to the periphery of familial and social bonds. But when Fraser writes that "Light's been made for too long of my brother's state" (4), the pun on "light" does not simply call attention to blatant social exclusion or the disparagement of people with disabilities; it also uncovers the forms of prejudice that hide behind compensatory exaltations of spirit at the expense of "deformed" flesh, the "light" of grace or inspiration meant to make up for a damaged body. The "limits of the flesh," here, are thus literal rather than symbolic, "my brother's knees where his thighs / should be" (4), and "Grace" is just "the name of the nurse / who took my brother's matter in her hands." Perhaps most vehemently, belief becomes, for Fraser, "your suspension of disbelief" (4-5), a willing disregard of the operations of language and ideology on the body.

Such a passage neatly encapsulates several facets of contemporary disability studies. The lived experience of disability is increasingly prominent in autobiographical writing in ways that contest what Robert F. Murphy has called "the dehumanization of the disabled" (1990, 117). Numerous collections of personal essays and other creative work from authors in the U.S. and Britain attest to an expanding market for stories that address disability frankly and challenge stereotypes (e.g., Mason, 2004; Crutchfield and Epstein, 2000; Wates and Jade, 1999; Keith, 1996; Mukand, 1994). At the same time, much recent scholarship calls for the incorporation into disability studies of poststructuralist critical theory. Attempting to extend our understanding of disability beyond both medical and social models, such anthologies as Bending Over Backwards: Disability, Dismodernism, and Other Difficult Positions (Davis, 2002), Disability / Postmodernity (Corker and Shakespeare, 2002), and Semiotics and Dis/Ability (Rogers and Swadener, 2001) present disability as "the ultimate postmodern concept" (Corker and Shakespeare, 2002, 15)–a diverse and ever-changing set of bodies and experiences that eludes any sort of universalizing metanarrative. And as Fraser's work makes clear, a further question concerns the convergence in life writing of theory and faith: how might a disabled writer, inclined to interrogate the stable identity maintained by both religious discourse and conventional autobiography, represent religious belief?

With close attention to recent autobiographical work by Nancy Mairs and Stephen Kuusisto, I want to explore the articulation of "disability theology" by writers committed to challenging the forms of stigma that attach to bodies–not just those marked by the difference of disability, but bodies generally as they are denigrated by Christianity. Given still-prevalent superstitions about disability as a sign of cosmic punishment or election, and in view of the typical rhetorical and structural patterns that tend to shape life writing, do spiritually inflected disability narratives push inevitably toward the closure and resolution of holy reward? One question is whether faith somehow requires that the disabled autobiographer figure him- or herself as a triumphant consciousness that transcends physical failure. When disability is depicted as a catastrophe that tests the limits of faith, climactic spiritual renewal provides recompense for the body's collapse in both the author's life as well as in the story that constructs the author's autobiographical self. The rhetoric of spiritual compensation construes disability as a personal calamity that can only be "survived" with the promise of heavenly reparation, and does little to undo entrenched notions of disability as a solely individual, rather than social or political, matter, or of the disabled body as synonymous with a diminished self whose worth can only be restored through divine intervention. But when authors write against the pressure to subordinate their anomalous bodies to either the radiance of their souls or the proficiency of their minds, as Mairs and Kuusisto do, we encounter "counterdiscursive" stories that broaden the cultural conversation about the locations and meanings of disability (see Couser, 1997, 2004).

The essays in André Dubus's Meditations from a Movable Chair (1998) provide one example of a tendency to construe disability as a thing to be wrestled into submission by the individual's imaginative or cognitive talents, a common narrative model that is also highly masculinized in Dubus's rendering of it. While the title of the collection seems to signal a new perspective on self and world based on radical physical change, the thematic constant in Meditations is the ecstatic experience of spiritual reception, a narrative focus that works less to offer a corrective to the belief that the flesh is a thing to be transcended than it colludes in that worldview, relegating the body–broken or otherwise–to the status of vessel or receptacle for grace. Dubus thematizes the fantasy of regaining the use of his legs in recurrent dreams of able-bodiedness or nostalgic recollections of the time before his accident; the motif of having once been but no longer experiencing himself as "whole," a word that recurs throughout the collection, is reinforced by frequent mentions of the date of the accident or the exact number of days, months, or years since the accident occurred. This tension between life before and after insists on the loss of a certain form of physicality as the demarcation between various versions of selfhood, even as disembodied spirituality is held forth as the redemptive constant.

Consider too the alignment of spiritual compensation and mental triumph over disability in Reynolds Price's A Whole New Life (1995). In this story of paralysis from a malignant spinal tumor, Price depicts disability not as punishment for sin but rather as a threshold onto election. The narrative follows an idealizing or ennobling paradigm whereby impairment is rendered tolerable by the assurance of having learned a moral lesson, renewed one's commitment to faith, and overcome bodily failure by adjusting one's own attitude and skills, rather than by challenging ableist social norms and infrastructure. Recounting a vision of being baptized by Jesus in the Sea of Galilee, for example, Price writes that he is assured by Jesus not only that his "sins are forgiven" but also that he is "cured" (43)–an experience that "confirm[s]" his belief that "the creator takes close note of some creatures and apparently very little of others" (45), and that holds out a mystical promise that will "somehow result in [his] body" (46). The vision features Jesus in a healing role, familiar to readers of the Gospels, which some disability scholars have emphasized as an antidote to the demonizing of disability prevalent in religious writing. In Price's telling, however, the consequence of the story is that disability must be comforted by trust in being singled out as spiritually special, an internal reorientation toward one's own body that sidesteps confrontation with dominant paradigms.

Though he disdains the anxious ableist habit of conferring "a misplaced, thoroughly unwanted beatitude" upon "the socially and physically gimped" (178), Price nonetheless asserts that his post-paralysis life is "better" (189)–in part because he is now both more patient as a man and more productive as a writer–and he offers up the story of this "new life" as evidence of "a clear intentional design" (177). The dysfunction that results from illness is hereby rendered inspirational–not an arbitrary corporeal event but a meaningful occurrence experienced as purposeful and planned. Who, he asks, but a "twisted fool," a "megalomaniac bucking for canonization," would exchange "strong legs" and "normal control" for "two legs that serve no purpose but ballast to a numb torso" (189)? The implied answer is that disability is a kind of divinely sent "path" (188) toward self-appraisal, upon which the individual might reinvent himself by overcoming formerly impatient, uncaring, unself-conscious tendencies. Here we see a kind of acquiescence to the expectation, in Susan Wendell's words, that people with disabilities must "overcome obstacles to their participation in activities by their own extraordinary efforts" (1996, 52). For Price, the "whole new life" of the paraplegic is fashioned by faith and the interior work of personal change, rather than any shift in the assumptions or accommodations of ableist society.

Ruth Cameron Webb's Journey into Personhood (1994) provides a final example of narratives in which a disabled identity can be claimed only in the context of a sense of divine election. As Webb's title implies, disability (Webb has cerebral palsy) collapses not just a sense of legitimate or dignified identity but "personhood" itself. Struggling to make sense of her disability, Webb searches for causal explanations, explicitly wondering if she has been abandoned by God, if her condition is a sign of God's disfavor: "Why was my birth prolonged? Was it because the doctor was late in arriving or was it God's will?" (179). Such a query might seem natural or inevitable, given the author's beliefs, but Webb (unlike Mairs, as I explain below) does not eschew the cosmic explanation–indeed, she ultimately embraces the idea that the difficulty of disability must be assuaged by some spiritually compensatory reward. Similarly, she construes her emotional response to being rejected by peers as a personal failure, chiding herself for feelings of intense sadness and "uncontrolled anger" (179), rather than viewing these as a reasonable–even galvanizing–reaction to discriminatory social attitudes and policies.

Despite an accomplished 20-year career as a clinical psychologist working with people with disabilities, Webb thus suggests that "personhood" is ultimately derived not from professional success or the kind of interdependent living that she herself helps others achieve, but rather from divine affirmation of her spiritual worth, in an experience narrated as ecstatic rebirth. Even at the end of this story of persevering against cultural prejudice, Webb is still "throw[ing her] angry self again and again against [her] Creator," and asking, "Why am I brain-injured[?]" (179). She then recounts being told that "the Great Spirit has a purpose for [her]," "'a special mission from the Lord, the Great Spirit." Like the blind man in the gospel of St. John, Ruth is "asked to reflect God's glory in [her] disabled body" (179-80). Rededicating herself to God may not in itself be problematic, but by suggesting that feelings of inferiority and shame are appropriate responses to an individual's disability, or that the trauma of coping with oppressive social practices can only be rectified by belief in special election, Webb's religious paradigm perpetuates rather than revises the stigmatizing of disability generally.

In contrast to these tales of spiritual compensation, Mairs and Kuusisto explore the intersection of faith and disability in ways that do not coincide with problematic binaries of spirit and matter. These writers narrate identity in terms of, rather than in spite of, their physical conditions, and faith is not invoked as the solution to personal tragedy (or, conversely, eschewed as irreconcilable with the putative injustice of physical dysfunction), but as inextricably bound up with an ever-changing and adamantly corporeal disabled identity. Mairs's Ordinary Time (1993) and Kuusisto's Planet of the Blind (1998) thus follow desultory paths that mimic the material conditions of multiple sclerosis and blindness, respectively. Because neither writer hopes for grace nor holds to the promise of an afterlife to make amends for the travails of disability, their texts do not follow linear trajectories organized around epiphanical moments. Inflected by poststructuralist theories about both the instability of identity and the social, discursive origins of disability, each text is open-ended, lacking resolution, but each also returns to the grounding effects of faith in something that the authors look to as a source of love and human connection. Faith becomes not the end-point of a uniformly structured narrative but an intermittently recurring emphasis that serves to remind readers of the inextricable link between body and spirit. The vicissitudes of disability, rather than the stable constant of any God, are the fulcrum around which Mairs and Kuusisto organize both faith and text; disability commands the shape and the rituals of faith and text alike.

In Ordinary Time: Cycles in Marriage, Faith, and Renewal (1993), Mairs makes an explicit connection between the form of her work–an essay collection rather than a unified narrative whole–and a state of being she defines as one of constant process: Catholic feminist with MS is "so provisional an identity" (101) that it must be discovered time and again in repeated instances of narration. In this sense, Ordinary Time is only loosely a spiritual autobiography, one that openly diverges from the sort of generic model established by such a text as Augustine's Confessions. Where a conventional conversion narrative pushes toward a known conclusion, with dramatic tension produced less by the uncertainty of the outcome than the extremity of sinfulness its author must overcome, Ordinary Time shapes the story of a self-proclaimed "convert en procès" (101), and the essays amassed therein demonstrate the ways in which faith, feminism, and disease are ongoing rather than "settled" states (100). With each new piece, the collection enacts its author's philosophical position that her identity as a disabled, Catholic woman, far from being pinioned in essentialist interpretations of bodily attributes, is a kind of consciously chosen work-in-progress that demands accommodation to a "lack of closure" (100).

No single, linear arc is even possible, Mairs suggests, given the unpredictable course of MS as it intersects with the "oxymoron"–"incongruous beyond reconciliation"–of Catholic/feminist (2). A commitment to deliberate inquiry is more Mairs's defining ethos than anything like the confession of spiritual waywardness (though her writerly persona, here and in each of her collections, certainly trades on a frank transgression of what she has referred to as public decorum). It is more that Mairs maximizes the faceted nature of a book of essays–the formal equivalent of adjusting to change, of practicing renewal–to instantiate her belief that identity is only ever partial, always in the process of emerging. This emphasis on resisting "tidy" endings (100) correlates with Mairs's insistence that Ordinary Time not be construed as a "prescription for carrying out the 'righteous life'" (7). From its opening pages, the book takes "I don't know" as its signature precept, and its inquiry into the presence of God in one woman's life begins not from "some loftier plain" but rather with the adamantly corporeal "exigencies of my husband's chemotherapy" (6). Not knowing is central to the approach Mairs takes toward the kinds of ideological absolutes that frame cultural attitudes toward the big questions–the body, gender relations, religious experience, and so on. Not knowing means having to plunge into what cannot be immediately or even fully understood, into territory that may be addressed by but never fully transparent in a sacred text, described but never truly objectively by a medical journal. Anomalous embodiment, by definition, challenges social pressure to abide by, to buy into, neat and fixed meanings; an unruly body defies pretensions of control over the flesh, or notions of selfhood as separable from the messiness of physicality.

Mairs writes that "to speak of the interpenetration of soul and body ... smacks more than a little of scandal" (85), but also that "I can't get rid of the things that make me me–my crippledness, my writing" (128). The persona who leads her readers through discussions of such abstractions as grace, forgiveness, charity, loss, and love is thus a highly specific, and specifically female and disabled, figure, one whose only certitudes are that embodied subjectivity will always elude the imposition of predetermined meanings. Ordinary Time offers no last words, only an account of one individual disabled woman's endeavor, in her words, "to make God up, over and over again" (10). Mairs makes God up as a process ("the holy as verb, Godding, not Godness or Godhood" [11]) that is located in the everyday enterprise of "find[ing] out how ... best to live" (7). There is something slightly audacious in this textual declaration of creating the Creator, an assertion of the integral part the author plays in manifesting godliness, however that is understood, in both her own daily life and in her audience's consciousness as they read her written work. But this is precisely the kind of revisionary act that many disability theologians have called for "in the bid," to quote Doreen Freeman (2002), "for nuanced perspectives to affirm people with disabilities as theological agents" (72). Making up God in the image of process, indeterminacy, and embodied transformation (a notion that flatly contradicts doctrinal definitions of the divine as eternal and unchanging), Mairs also makes herself up as an authorized subject, an agent of theological interpretation.

If she exhibits a certain daring in her construction of God, however, Mairs is far from grandiose. Indeed, her word for a concept of God that reclaims the spiritual from lofty transcendence is "homeliness" (10), which corresponds to the "ordinariness" Mairs means to impart not just to matters of faith but also to the unexpected, the strange, even the crude: "shit is God's creation, too" (25). "Ordinary time" signifies imitation of the life of Christ as "this life" (23), which is also a way of insisting that "this life"–female, disabled, and "shame[d]" by Christian "taboos" (25)–is holy, deserving of love. Ordinary time is not liturgical time or the eternal of salvation, but simply the minute-to-minute experience of teaching, parenting, writing, the "endless dragging around of an increasingly crippled body" (23), and the daily act of feeling one's way toward some sense of connection to God. Mairs's unique narrative strategy lies in this dual retrieval: defining the spiritual in earthly, fleshly, female terms (God is consistently "she" in this text) while recuperating her own embodiment–making it graceful, as it were, despite (or precisely because of) being "ruined by multiple sclerosis" (222). If the presence of God in one's life is ordinary, so too is the presence of disease.

As one specific instance of how Mairs renders certain religious rituals less as sublime mysteries than "homely" activities, we might consider her descriptions of receiving communion. Mairs writes that the "nourishing quality of the Eucharist, freely offered to anyone who's famished, has always been a central metaphor for me. I don't partake because I'm a good Catholic ... I partake because I'm a bad Catholic ... I need food" (89). In a discussion of taking communion before she has officially converted, she underscores the inclusiveness of the church she eventually joins: "wafers were handed out indiscriminately ... They simply fed me along with everyone else" (88). Mairs seeks not simply an individual experience of what she calls "koino topos: the common place" (192), but something at once more mundane and more revolutionary–a "new world order" that she captures with characteristically respectful irreverence in the question, "Would you like half my sandwich?" (190).^[1] Such a query extends the notion of communion beyond the mystical and inherently "exclusive and hierarchical" (190) transaction of the Mass to a shared experience in which both parties are fed; the half sandwich suggests symmetry, rather than inequities of rank, and the willing offer of the self's own food enacts a redistribution of resources that has important implications for how societies respond to disability. Nancy Eiesland (1994) has rebuked church architecture and habits of ritual that prevent people with disabilities from taking communion at the altar along with their fellow congregants.^[2] More broadly, a prevailing ethos of interdependence and mutuality, rather than symbolically parental or monarchical relationships, would make untenable the kinds of distinctions that shunt people with disabilities to the margins, which lower the communicant before the fatherly priest.

Mairs construes a right relation with God in the same terms that have characterized recent theorizing about disability and the challenge that physical differences pose to idealized notions of health, beauty, and social worth. For Mairs, spiritual experience is inseparable from a fiercely held egalitarianism, perhaps her most fundamental precept as a feminist and disability activist. She writes that any relationship "structured in terms of 'heads' and 'subjects' violates the radical mutuality of realized love, both ours for one another and Christ's for us" (133), and frequently reiterates an insistence on "reciprocal rather than hierarchical" (139) interpersonal configurations. The kinds of inequities that impede the lives of people with disabilities in an ableist society are obviously incompatible with a system of relationships founded on authentic engagement with others and respect for difference. True reciprocity requires acknowledgement of others as separate and legitimate subjects in their own right, a form of recognition that demands in turn integration of those aspects of human existence we tend to marginalize, condemn, and demonize–particularly the self's own corporeal messiness.

Mairs's concept of religious practice as defined by "doing a do, not avoiding a don't" (139) further resonates with an ethical approach to disability that begins with individuals' re-examination of prejudices and/or their efforts to renegotiation their commitment to ideological rules. Julie Allan has made compelling use of Foucault's system of ethical behavior in her work on the inclusion of disabled students, arguing that inclusion can be reframed as an ethical project in which everyone involved in the educational enterprise–teachers, parents, disabled and able-bodied students alike–participates in the work "of shaking habits," "dispelling commonplace beliefs," and "taking a new measure of rules and institutions" (Foucault, 1991, 11-12, quoted in Allan, 281). Allan writes that an "ethical project of inclusion" is both "something we must do to ourselves" (293) and a process of transgressing entrenched cultural narratives: School officials are challenged to re-examine paradoxically exclusionary prejudices that inflect the goals of inclusion; nondisabled students are invited to learn new patterns of response to difference by becoming more self-reflexive; and disabled students are empowered to view themselves as fully legitimate, desiring agents rather than individuals "in need." What Allan describes as "playful and disruptive boundary work" (290) in the education community coincides with Mairs's embrace of faith as an active form of interrelationality between embodied equals, a practice that refuses those prohibitory aspects of Christian theology whereby both women and the disabled have been excluded from full participation in worship and in pastoring.^[3]

A disability theology as Mairs articulates it thus entails a restless ("playful and disruptive") relationship to dogmatism, and it also takes seriously the concept of Christ as divinity not simply corporealized but "fragile," "mutilated" (195). Mairs takes to task the Church's "revulsion" (198) toward physicality, which she ascribes to the operations of hegemonic power interests upon bodies it "infantilize[s]" as impulsive, helpless, sinful, or sick. Genuine belief in the "murky and numinous" notion of the Word made flesh, of "a God who put on a body" (3), Mairs suggests, would demand a more accurate account of human bodies to recognize the fluctuations and variations of physical existence. In recent efforts on the part of the Church to rewrite the meaning of physicality (such as John Paul II's Theology of the Body), the body is redeemed by its obedience to principles of chastity and "control" and to normative heterosexual marital relations; it is not a sexually appetitive or "deviant," an odorous or unpredictable body. A disability theology, by contrast, "incorporat[es] the fullness of human contingency and ordinary life into God," as Eiesland writes; "[i]n presenting his impaired hands and feet to his startled friends, the resurrected Jesus is revealed as the disabled God" (100). Freeman concurs, arguing that a disability perspective allows us to understand the story of Christ resurrected "not [as] a perfect God but a disabled one," which thus "affirms the full personhood of people with disabilities," "deconstructs norms of embodiment and makes us rethink the limits and boundaries of our bodies" (83).

Mairs is adamant on two seemingly opposing points. First, she invokes identification between God and humanity in its every possible guise. God is "in" (and "among, beside, around") us (162); God is "she" throughout Ordinary Time to allow "more readily" for a sense of identity between author and godness (163). But at the same time that she depicts human identity in terms of spirit–a force larger than the individual, a kind of "realized love" (133)–she also states that selfhood is resolutely biological: "since the 'I' that I conceive myself to be is constituted by complex biochemical events played out in a discrete organism, when those stop, my subjectivity terminates" (219). God is "drawn 'down'" among people who "embody" (163) the divine, while Jesus is "embodied to the end" (195). Self is inextricable from real flesh, but it is a flesh made "simply a body" (203), neither exalted nor condemned, by its relatedness to God. Like Eiesland and Freeman, Mairs thus presents the concept of Christ incarnate not to shame her own broken body but instead as a corrective to "the linkage between baseness and the body forged by Hellenized Christianity" (199). "[D]isability not only does not contradict the human-divine integrity," Eiesland argues, "it becomes a new model of wholeness and a symbol of solidarity." Christ represents not an idealized human form but "the full range of humanness," including (and perhaps especially, Mairs hints) "sinners, cripples, paupers, and women" (185).

This interweaving focus on matters of body and spirit correlates with another intriguing overlap in Ordinary Time–Mairs's representation of disease in strictly scientific language with her faith in a theological premise that does not make rational sense. She describes MS as "a random reasonless process" (184), a "relentless degeneration of [her] central nervous system" (178), and refuses the dual trap of regarding bodily ailments as opportunities for personal growth or signs of cosmic "nastiness" (184). At the same time, she defies reason by "willingly" (179) believing in the possibility of miracles, or "accept[ing]" that Jesus' resurrection happened "while knowing perfectly well that it didn't" (197). But of course this integration is the overarching theme of the collection: Religious belief need not preclude a relationship to the body that accepts its idiosyncrasy, its vulnerability to pain and loss and its mortality, as fundamental to existence and identity. The kind of autobiographical narrative that Mairs favors, here and elsewhere, looks squarely at the whole of human experience because to bracket off some elements while idealizing others is to perpetuate what she critiques as a system of domination and subordination. The coincidence–the lateral influence, so to speak–of science and faith, flesh and spirit, body and self, human and divine, is precisely her point.

Bemoaning the lack of "clear models" for her particular position as an adult woman confronting the kinds of illness and impairments associated, in an ableist society, with both the infirmity of old age and the helplessness of infancy, Mairs suggests that she writes her own life as a gesture of camaraderie and comfort for "anybody whose life unfolds out of sync with general social patterns" (214). In Ordinary Time, this means in part disputing the apparent contradictions between Catholicism and feminism, between an unruly body and a worthy soul. But the conversational tone and attitude of easy companionship that characterize Mairs's work can be deceptive. Scholars from a variety of fields have cited the importance of personal narratives of disability in illustrating the ways in which "people with disabilities have transcended their discursive constitution as dependent subjects" (Hughes, 2005, 85, 89). Disability autobiography operates at the level of both theory and praxis, giving the lie to the dematerialized body of poststructuralism ("a body devoid of material substance," in Bill Hughes's words [89]) while furthering the cause, as it were, of the "ordinariness" of disability by recounting it in forthright, unapologetic, demystified terms. Mairs is at once dedicated to this kind of fierce honesty about lived experience and unafraid to display her theoretical fluency.

A similar principle of candor and interrogation characterizes Stephen Kuusisto's Planet of the Blind, though Kuusisto's is a more poetic, less overtly pedagogical text than Ordinary Time. Kuusisto makes frequent use of mythological imagery in his quest for a comfortable relationship to Christianity, reworking mythic tales that stigmatize blindness as the mark of naiveté and obliviousness or idealize it as the outward sign of insight, intuition, and innocence. As the title suggests, Kuusisto's story includes a frank description of his own implication in the alienating consequences of prejudice against disability by denying his impairment and attempting to "pass" as sighted, but ultimately, the "planet" of blindness is depicted not as the source or exile of fearsome creatures but rather as one to which all adventurers interested in alternative modes of living–i.e., "seeing"–might wish to travel. Indeed, motion is one of the book's dominant motifs, displaying both literally and figuratively Kuusisto's process of constructing a blind identity; where scenes involving movement initially dramatize his (and others') wish that he were sighted, motion comes, importantly, to convey his shucking of the stasis and passivity associated with blindness. That eschewal, of the privileging of vision, is fundamental to Kuusisto's narration of faith, which seeks the reconciliation of body and spirit and locates spirituality in the unique, and purely physical, workings of his eyes.

The prologue of Planet of the Blind takes a Virgilian path, playing on conventional tropes of blindness as both a fall into darkness and a sign of mystical insight. Lost in Grand Central Station, Kuusisto takes the arm of a "railway employee" (2) who leads him, along with guide dog Corky, through the "hemlock darknesses"; as they "descend through the tunnels under the building" toward Kuusisto's train, so too does the narrative seem to associate blindness with confusion and helplessness, a loss of dignity or self-reliance. The intriguing reference to hemlock–and by implication both witchlike cunning and Socratic death–coalesces at once the figurative deceptiveness associated with whatever is "blind," the poisonous depths of suicidal despair to which the impaired might be presumed to sink, and yet also a Socratic exhortation toward inquiry and self-knowledge. In this sense, Kuusisto disturbs the downward trajectory of his own image: the train toward which he is conducted by the accommodating stranger implies forward motion, rather than a plunge into despair or eventual re-ascent; and it is the "moving" itself that Kuusisto claims as "holy" (1), rather than any object lesson about sinfulness that would ensure regeneration or a state of grace.

Kuusisto names mobility as the locus of divinity here in this "temple for Hermes" (1): "the very motion," he writes, "is a breeze from Jerusalem." Hermes, of course, as guide for the souls of the dead as they descend to the underworld, invokes a particular sort of journey, not simply capturing the ghostly subterranean atmosphere of the subway system but also hinting at the liminal status of disablement: This blind traveler is somehow shade-like, the hapless follower of a more powerful god into a deathly nowhereness ("the blind are either supernatural or subhuman," writes Georgina Kleege [2000, 28]). But as god of land travel, Hermes also points to Kuusisto's terrestrial movement, and the reference to Jerusalem conflates paradigms in a way that disturbs precisely that kind of morally inflected interpretation. Indeed, in this revisionary place of worship, Kuusisto is neither holy seer nor benighted sinner, and the mythos of fall and resurrection is replaced by the "slow motion" of a blind man accompanied by a guide dog and by the leap of faith that comes from touching and trusting a human stranger. And while Grand Central is construed as a sacred place, it is not exactly a source of oracular wisdom: the procession of Kuusisto, Corky the dog, and their helpful railway employee represents more mundane–indeed, resolutely earthly–experience, a way of being in the world in which guide dogs and strangers, not gods or prophets, assuage "the turmoil or anxiety of being lost" (1). Emphasizing companionship and bodily, rather than metaphysical motion, the scene suggests that grace is to be found in the here-and-now of interactions that simply accommodate rather than obscure disability.

The spiritual dimension of Planet of the Blind is also characterized by a "new light" (1) that is both metaphorical and physiological. One of Kuusisto's stated goals is to dismantle the "either/or" (5) thinking whereby blindness is perceived as the absolute and subordinated other to sightedness. To the contrary, Kuusisto announces not only the fact that he does see, but also depicts what he sees in highly lyrical terms that emphasize color and beauty: the train station is "supremely lovely" (2), morning light is "stained glass" (7), a darkened restaurant undulates with "silver threads, teeming greens, roses, and smoke" (7). Such descriptions evoke the visual distortions caused by Kuusisto's condition (a scarring of the retinas known as "retinopathy of prematurity"), but they also suggest an orientation toward the world, a way of being and apprehending the self and its relation to others. The painterly celebration of his vision underscores the fundamental turn narrated by Planet of the Blind: Kuusisto's decision, well into adulthood, to identify as blind and to set aside a lifetime practice of denying his disability. Blindness is thus presented as a new way of seeing, associated not with mystical insight but rather with an acceptance of the particulars of embodiment and with a critique of ableist myths that shroud blindness in mystery and fear.

The "mad, holy vision" (7) of blindness is thus an emphatically physical one, and Kuusisto's narrative, mythologically inflected as it is, does not repudiate his body; rather, his narrative is his body–not simply because the subject is blindness but because its careening movement forward, its poetic stretches into descriptions of vision and feeling, attempt to reenact blind experience. That experience, however, does involve overcoming a sense of guilt and embarrassment about being disabled, and much of Planet of the Blind is taken up with Kuusisto's attempts to pass as sighted. "A disabled child," he writes, "is without a category: one simply doesn't see them" (13). This sense of cultural invisibility (recalling the reference to other-worldly shades in the book's opening scene) is commonly articulated in disability narratives; the anomalous body, one that doesn't abide by societal regulations of gender, movement, shape, or speed, is at once excessive and illegible. To be "seen" as blind is to occupy "the world of the invalid" (one version of the planet of the blind) (15); rendered literally invalid by his culture's inability to acknowledge disability as merely one other form of human embodiment, Kuusisto experiences profound ontological displacement.

This sense of being at odds with a body that refuses to behave by the rules of conduct and appeal is in turn displaced onto his weight; rather than confronting his vision problems, Kuusisto tells us that he overeats and starves, as if first to solidify his wayward body and then to deny the body whose dysfunction emasculates him. As a boy, he is "buried in his girth, fat with anguish and defeat" (33); later, as a teenager "overflowing with blind shame, embarrassments of the flesh, humiliation of the demiurge" because he "cannot look you in the eye," he "learn[s] to starve" himself, becomes "thin as Christ" (52-53). Such emphasis on mortifications of the flesh clearly invoke the spirit/body binary underlying references to blindness as a form of punishment or sign of sin, endemic to religious symbolism; Kuusisto pays the penance for his guilty blind eyes by variously transforming his embodied self. Perhaps more pointedly, his fluctuating weight manifests what Wendell refers to as the myth of control, a "cultural desperation" (102) to police the unpredictable workings of the body. "My identity," Kuusisto writes, "is being solicitously honed" (53); "urgently thin," he becomes "a thirteenth-century novitiate practicing the ars moriendi, the holy art of dying" (56-57). In Wendell's words, the "first commandment" of disability is "Get well or die" (105).

Ultimately, it is the corporeal intake of the Eucharist that begins Kuusisto's reclamation of himself–his embodied and disabled life. Importantly, he signifies this journey back into living through a food which is also a body. "Jesus' richest gift" (62), in Kuusisto's words, the Mass represents the very simultaneity of spirit and body that the narrative seeks to claim for the disabled self. On the planet of the blind (a significantly terrestrial, rather than celestial, metaphor) "no one needs to be cured," "people talk about what they do not see," and "God is edible" (148). With that latter claim, rather like Mairs offering "half [her] sandwich," Kuusisto implicitly but provocatively inverts the structure of delivery of the Mass to locate agency in the mouths of believers. It is not just that Christ nourishes through the wafer, but also that the faithful, already depicted as residents of an alternative world, actively eat; God is an object as much as a source. The journey that begins in the Hades of Grand Central–figuring out "where [he] should be in the world" (14) and feeling lost because he persists in trying to pass as sighted–culminates here, a paradoxically hallowed planet where faith is articulated not as a compensation for impairment but rather as bodily sustenance.

Towards the end of Planet of the Blind, Kuusisto recounts the myth of Tiresias, whose blindness is first a punishment for refuting a god, then a sign of his prophetic powers. Noting the collapse of Tiresias's physical blindness into a mystical and ecstatic insight, Kuusisto declares that "No real blind person can avoid the inner prickles of discomfort that accompany this metaphysical terrain" (187). If spiritual purity or proximity to the divine is repeatedly defined in terms of salvation from the frailty of the body, then how does a blind man reconcile his faith with his impairment? Kuusisto decries the theatrics of a televangelist whose staged cure of a blind man speaks less to the power of spiritual commitment than to a deep-seated cultural interpretation of physical disability as misfortune; in this context, italicized and reiterated ("'This man has faith!' ... 'This is faith, my friends!'"), "faith" is an empty signifier, circulating around a void. Kuusisto writes that he sometimes "lie[s] awake and fuss[es] about matters of the spirit" (187), and pointedly asks "So what is faith?" (188). The answer for him seems to lie somewhere between Kurt Vonnegut's contempt for faith as "just faith in faith" (188), where belief is simply the good feeling of believing, devoid of content; and a blind woman's recourse to the cliché that "God only gives you the burdens you can carry" (188), a form of religion that construes disability as an intentional affliction and then assuages that sense of encumbrance by imagining that disability is a kind of test. To bear it stoically is to demonstrate one's righteousness.

Kuusisto can claim that he "can't live without faith," then, because his text has rewritten the meaning of that faith according to the logistical and psychological realities of blindness. At Grand Central Station once again in the epilogue of the text, Kuusisto confronts a millennial soothsayer predicting that the end of the world "is coming" (191). "Poised" with guide dog Corky "to go forward" (190) into that world, Kuusisto ends his text by resisting such eschatological predictions; his is not a cosmic vision of the holy seer, but simply a blind man and dog about to push forward into rush hour and "a future that holds out possibilities" (190). Belief is his accompaniment, not his puppeteer. Divinity, in Kuusisto's story, resides in the undulating shapes and intense colors that his severely limited vision discerns as sheer beauty, and in the unexpected forms of intimacy that result from his eventual acceptance of the symbols–first cane and then guide dog–of blindness.

It is possible, then, to narrate the conjunction of faith and disability in ways that avoid–or even directly challenge–attitudes toward physical impairment as symbolic evidence of divine wrath or favor, attitudes that perpetuate the cultural marginalization of disability. Eiesland writes that "[e]mancipatory transformation must be enacted not only in history, but also in imagination and language. Liberatory theology of disability is the work of the bodily figuration of knowledge" (90). In the work of Mairs and Kuusisto, disability and faith are unmoored from their conventional symbolic association and brought together in unfamiliar, imaginatively radical juxtapositions that tell new stories of what it means to believe, to be disabled, to be a self.

References

Allan, J. (2005). Inclusion as an Ethical Project. In S. Tremain (Ed.) Foucault and the Government of Disability (pp. 281-97). Ann Arbor: University of Michigan Press, 2005.

Corker, M. and Shakespeare, T. (Eds.) (2002). Disablity/Postmodernity: Embodying Disability Theory. London: Continuum.

Couser, G.T. (1997). Recovering Bodies: Illness, Disability, and Life Writing. Madison: University of Wisconsin Press.

Couser, G.T. (2004). Vulnerable Subjects: Ethics and Life Writing. Ithaca: Cornell University Press.

Crutchfield, S. and Epstein, M. (Eds.) (2000), Points of Contact: Disability, Art, and Culture. Ann Arbor: University of Michigan Press.

Davis, L.J. (2002). Bending Over Backwards: Disability, Dismodernism, and Other Difficult Positions. New York: NYU Press.

Dubus, A. (1998). Meditations From a Movable Chair. New York: Vintage.

Eiesland, N. The Disabled God: Toward a Liberatory Theology of Disability. Nashville, TN: Abingdon Press.

Freeman, D. (2002). A Feminist Theology of Disability. Feminist Theology, 29, 71-85.

Foucault, M. (1991). Remarks on Marx: Conversations with Duccio Trombadori. New York: Semiotext(e).

Fraser, G. (2003). Strange Pieta. Lubbock: TX: Texas Tech University Press.

Hughes, B. (2005). What Can a Foucauldian Analysis Contribute to Disability Theory? In S. Tremain (Ed.) Foucault and the Government of Disability (pp. 78-92). Ann Arbor: University of Michigan Press, 2005.

Keith, L. (1996). What Happened to You? Writing by Disabled Women. New York: The New Press.

Kleege, G. (2002). Sight Unseen. Yale University Press.

Kuusisto, S. (1998). Planet of the Blind. NY: The Dial Press.

Mairs, N. (1993). Ordinary Time: Cycles in Marriage, Faith, and Renewal. Boston: Beacon.

Mason, M.G. (2004). Working Against Odds: Stories of Disabled Women's Work Lives. Boston: Northeastern University Press.

Mukand, J. (1994). Articulations: The Body and Illness in Poetry. Iowa City: University of Iowa Press.

Murphy, R.F. (1990). The Body Silent. New York: W.W. Norton.

Price, R. (1995). A Whole New Life. New York: Plume.

Rogers, L.J. and B.B. Swadener (Eds.) (2001). Semiotics and Disability: Interrogating Categories of Difference. Albany: State University of New York Press.

Wates, M. and R. Jade (Eds.) (1999). London: The Women's Press.

Webb, R.C. (1994). Journey into Personhood. Iowa City: University of Iowa Press.

Wendell, S. (1996). The Rejected Body: Feminist Philosophical Reflections on Disability. New York: Routledge.

Endnotes:

^[1] Interestingly, André Dubus also employs the metaphor of a sandwich as a way of rendering the sacramental as an everyday, everywhere, opportunity, and also portrays the experience as commonplace: "it is ordinary," Dubus states directly (159). Dubus writes that making lunch for his daughters is not "the miracle of transubstantiation, but certainly parallel with it," and calls "each motion" of putting together sandwiches "a sacrament" (89). However, Dubus's repeated mention of his legs, the loss of them, and the "memory of having legs that held me upright at this counter," works against the kind of "new world order" that Mairs calls for, one based not only on egalitarianism and reciprocity but also the image of God as disabled.
back to text

^[2] "For many people with disabilities," Eiesland explains, "the Eucharist is a ritual of exclusion and degradation. Access to this celebration of the body is restricted because of architectural barriers, ritual practices, demeaning body aesthetics, unreflective speech, and bodily reactions" (113).
back to text

^[3] Eiesland (1994) cites scriptural passages such as Lev. 21:17-23 (which prohibits anyone "blind or lame, or one who has a mutilated face or a limb too long, or one who has a broken foot or a broken hand, or a hunchback, or a dwarf, or a man with a blemish in his eyes" from entering holy spaces) as having been used "to warrant barring persons with disabilities from positions of ecclesiastical visibility and authority" (71).
back to text