Human Studies 20: 365–369, 1997. 365

Bodies Telling Stories and Stories Telling Bodies

GARY KIELHOFNER & TRUDY MALLINSONDepartment of Occupational Therapy, University of Illinois at Chicago, USA

If ever were a pair of bodies made to dramatize Foucault’s lifelong attackon the objectification and regulation of the body, Bianca and Christina arethat pair. Much of the tale of A World without Words portrays Christina andBianca as remarkably resistant to the tireless efforts of others to regulate theirbodies and hence curtail their way of life. That they mustered so much energyon behalf of their routine pursuits without becoming totally demoralized iscompelling evidence that the ways they had of living their bodies were cogentfor them. Their efforts to claim their own lives are remarkable in that theyexisted at all. What is disturbing about the tale is that so few people in theirworld ever managed to figure out the lives that these two were busily livingor to give those lives any kind of voice in the decisions about their fate.

Our response to the meaning of Goode’s A World without Words is shapedby two interests that at first blush may seem polar opposites: lived embodimentand narrative. However, we believe there is an important dialogue betweenChristina and Bianca’s lived bodies and the story that got told about themin Goode’s work. Further, we are encouraged by Csordas’s (1994) recentargument that the concept of embodiment should offer textuality a dialecticalpartner.

Goode has created a narrative about two persons living highly unusualbodies. What kind of world they inhabited through those bodies, and whatwe can learn and say about their world through interaction with their bodies,represent two problems that are at the core of the failed strategies of servicesand rehabilitation that were visited upon Bianca and Christina.

Let us begin with a brief consideration of how health providers, such asoccupational therapists, come to think about and deal with bodies in thecontext of various kinds of habilitation or rehabilitation organizations. Ther-apists, along with other health care providers, conceptualize and treat bodiesas objects, as part of the res extensa of Descartes’s material world. Subject tothe same causal laws as the rest of the material world, bodies can thus be com-prehended and managed though objective methods. As Turner (1992) arguesin his text Regulating Bodies, scientific medicine has achieved “a narrow,specialized and technical view of the human body as a machine that responds

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in a determinate way to the therapies derived from clinical experience andbasic research” (p. 139).

The whole array of health and rehabilitation services rests on a foundationthat emphasizes that damaged or diseased bodies can be repaired or rid oftheir afflictions. Clinical assessments seek to objectify bodies and to determinehow they are diseased or traumatized as a prelude to effective therapy. Thevery experience of bodily illness or disability, as it is reported by those wholive diseased or damaged bodies, is automatically transformed into meresymptoms, by which they can be properly objectified. Inasmuch as bodiesdo sometimes succumb to transient trauma and disease, such a perspectivehas its uses. However, the paradigm of objectifying and managing bodiesis not so unproblematic when persons must live chronically damaged ordiseased bodies. It is not surprising then that the literature carries more thana few complaints by persons with physical disabilities that they have beentreated as unruly bodies, incapable of managing their ordinary affairs. To thedegree that persons are able to advocate for themselves, they can resist beingtreated as objective bodies. Patients routinely do this with varying degrees ofsuccess. Persons of severely limited capacity, such as Christina and Bianca,have very limited opportunity to advocate for alternative views of themselves.Unfortunately for them, they exemplify the failures of rehabilitation effortsthat treat damaged bodies simply as troublesome objects in need of regulation.

Our argument, and to a considerable extent Goode’s argument, is that dam-aged bodies must be addressed not merely as objective bodies but also aslived bodies. Goode’s remarkably persistent and creative efforts to discoverthe worlds that Bianca and Christina inhabited involved an important con-sideration of their lived bodiliness. His methodological stance paralleled thevision of bodily apprehension of the world offered by Engelbrecht (1968)when he stated:

My body invests the world with meaning even before I think about thismeaning. Certain things in the world already mean colour, sound, flavour,odour, shelter, food, far and near, before I am consciously aware of thismeaning (pp. 17–18).

The world that anyone has is the consequence of a bodily self (Merleau-Ponty,1968). Embodiment constitutes a point of view directed toward a world ofpossibilities that that body reveals. The body that consists of seeing eyes looksout onto a world that is for it a visual spectacle. A body without seeing has nosuch world but it nonetheless has a world – a world that to the seeing body mayremain remote and inaccessible. Goode’s foray into Bianca and Christina’sworlds serves to provide striking evidence for Sartre’s (1970) observation that

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people’s worlds are the correlates of their lived bodies. Inasmuch as Christinaand Bianca were extraordinary bodies, they also lived in extraordinary worlds.

In one sense, it is surprising that this message is such news. However,clinicians and scientists appear to have failed to ask the question of hownon-normative bodies might apprehend their worlds both because of thedominance of the objective view of bodies and because of the lack of methodsand concepts for considering the lived bodies of persons with disabilities.

In this regard, it is worth mentioning Leder’s (1990) concept of bodilyvectors. In The Absent Body he argues that the givenness of certain formsof embodiment provide preferred pathways of perception and action. Thesepathways are not fixed and, in fact, their power is that they are inherentlyexploitive, making use of what the body is and how it can best find its ownexpression in the world. Viewing damaged bodies as vectors would appearto hold a great deal of promise for future understanding of persons withdisabilities. Csordas (1994) gives us an example of this kind of approachto understanding damaged bodies in his analysis of a Native American withepilepsy who, like many others with seizures, becomes deeply religious.Avoiding either overly psychologized or purely cultural explanations of reli-giosity among epileptics, he argues that religiosity can be seen as an adaptiveprocess emerging out of the bodily-given circumstances of the individualinteracting with culture:

[T]he patient’s search for words is thematized as religious not becausereligious experience is reducible to a neurological discharge but becauseit is a strategy of the self in need of a powerful idiom for orientation tothe world (Csordas, 1994, p. 287).

Such explanation seeks to take seriously an embodied person’s “taking up anexistential position in the world” (p. 287).

Taken together, Csordas’ and Goode’s works are highly instructive forthinking about persons who live damaged bodies. They provide an argumentthat persons with damaged bodies are not to be seen as essentially faulted ordoubly disabled (as in having a psychopathological reaction to their primaryphysical insult). Rather, they propose the behaviors of such persons shouldbe seen foremost as strategic attempts to come to grips with their uniquesituatedness. Such behaviors, then, are much more than symptoms pointingto a damaged, objective body. They are instead understandable as the bestevidence we have about the existential worlds within which these persons arelocated. With such information, services could then seek to enter rather thanto negate those worlds.

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Clinical appraisal would begin not by asking how a particular body isdamaged or faulted but by asking: “What kind of a perspective or circumstancedoes being in this kind of body provide?” and “How does this person’sbehavior reveal strategic sensibility in light of his or her embodiments.” Intime, the answers to such questions might begin to build up a system ofunderstanding of the kinds of vectors that different disabilities represent. Inthis way, cumulative knowledge on embodiment may begin to give clinicalpersonnel pathways on how to enter into the worlds of persons with extremedisability.

Whether in the case of single clinical assessments or in systematic studiesthat would add to a body of knowledge on bodily vectors, there needs tobe discourse on embodiment. Objective bodies can only reveal symptomaticdata about their flaws but subjective, lived bodies have another story to tell.Toombs (1992) argues that clinical discourse on bodies should give seriousattention to the lived body, resulting in a form of narrative that highlightslived illness and disability experiences.

While such well-known work as that of Klienman (1988) and Coles (1989)underscore the utility of clinical narratives of illness experience, we wouldlike to allude briefly to some of our own investigations into creating narrativediscourse on disability (Mallinson, Kielhofner, and Mattingly, 1996; Helfrichand Kielhofner, 1994). Our own work has sought to understand both the dis-ability experience and the experience of therapy by persons with psychiatricand with physical disabilities. In examining patient narratives over the lastfew years, we discovered that patients often construe therapy quite differentlythan therapists do.

One way in which we have come to view the situation is that therapists seepatients as “coming into” therapy, sometimes literally into a physical placedesignated as “occupational therapy,” and at best as coming into a process thatis defined as “therapy.” Patients, however, see therapy as an event that entersinto a much more important drama, their life narratives. Therapy alternativelybecomes insulting, distracting, helpful, or entertaining according to how itfits into the life of the patients, as the patients themselves see that life, notaccording to the plan of the therapist but according to the scheme of a life inprogress.

While Christina and Bianca cannot tell us their stories, Goode has shownthat some access to the text of their lives is possible. That Goode’s interpre-tation may have some hermeneutic flaws – and Goode generously admits tothis possibility – does not bother us. Just as verisimilitude, and not facticity,is the goal and criteria of a good story (Bruner, 1990), the final measureof success in generating clinical stories should be the power of the clinicalnarrative for providing ways to enter into the lived world of the other. In

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that regard, Goode’s work is exemplary and highly instructive. Counter asit may run to ideas of standard measurement and professional behavior, itoffers a methodology of clinical relevance. The dominant clinical assessmentmethods available today offer windows almost exclusively on the objectivebodies of patients and clients. New methods that give entry to subjective,lived bodies are badly needed. We have in A World Without Words, and in therelated works mentioned above, an important beginning.