Reconfiguring Dis/ability:
Multiple and Narrative Constructions of Self

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Janet E. Schaller
Memphis Theological Seminary

Draft only: please do not cite without permission

My purpose in this paper is to begin to explore the usefulness of constructivist theories of multiple, fluid, and narrative concepts of identity in understanding and responding to the efforts of people with dis/abilities to integrate the many dimensions of self (including abilities and limitations) in light of the dominant (U.S.) culture’s negative representations of dis/ability. I draw primarily on three of my twenty-six interviews with women with dis/abilities to examine the relevance of these theories to real human persons.

The Unitary Self, Dominant Discourse, and Dis/ability

“Penny,”1 a European American woman born in the 1950s, was very young when she contracted the poliomyelitis virus. She could not yet walk. She could not yet talk. She had barely learned to crawl. After months in isolation in a hospital ward for infants and toddlers, the medical professionals decided there was nothing more they could do for her, and she was transferred to a custodial care facility. A similar institution in Memphis was, at that time, called the “Home for the Incurables.” Because Penny was viewed as lacking the capacity for little, if any, improvement, she was given no treatment. She was labeled incurable.

Dis/ability was Penny’s identity—her medical identity and likely her social identity. Her family disputed this and, when those in charge of her medical care refused to offer treatment, a family member picked Penny up from her “incurable” crib and walked out of the institution with her. This snippet of her story gives us a glimpse of the way dis/ability functions as a “master” category and the extent to which persons and allies must go to challenge the implications of a dis/ability label.          

Let me offer one more example before turning to dominant (and dominating) discourse about dis/ability. Adrienne Asch, psychologist and professor at Wellesley College, recounts an experience with peers in the 1980s. As part of an exercise, participants were asked to choose a group with which they identified and stand under the sign that designated that group. After some moments of indecision, Asch eventually stood under the sign marked “disability,” in part because no one else was there. As she explained the difficult of her decision, an acquaintance expressed disbelief that Asch could have considered any other identifying characteristic. Asch’s blindness was so central to this person’s concept of Asch that dis/ability overshadowed any other personal feature.2 A “master” category eclipses everything else.

The social stereotype or construction of dis/ability is already single-focused and fixed, primarily marked by “inability” that is universalized. For example, in the mindset of many, a physical dis/ability indicates a cognitive one as well. Several of the women I interviewed tell of the common experience of servers in restaurants asking their companions, “What does she want?” when taking menu orders. One woman reported the server who said, “What does it want?” and, thus, unintentionally pointing to the “less than human” ascription noted by Goffman of persons occupying certain undesirable categories, including dis/ability.3 To some, dis/ability is viewed with such aversion that death is preferable. “Better dead than disabled” is a common public response to the actuality of or potential for living with a dis/ability.4 The dominant discourse about dis/ability is restrictive and negative.

The pervasiveness of this dominant discourse means that there are times a person with a dis/ability must “buy into” and wear that singular identity as well as times when one must distance oneself from it. For example, some persons need the dis/ability label to receive government (and other) benefits, which require one to prove oneself indisputably “unable.” If one must have those monthly payments or personal assistants or health care in order to survive, one has to emphasize limitations. The dominant discourse that requires an individual to deserve the “dis/ability” label in order to receive these benefits demands that inability be one’s defining characteristic.

Michael White, in outlining the philosophical undergirdings of narrative therapy, utilizes Foucault’s work on the essential unity of knowledge and power to explain the way “unitary knowledges,” that is, unexamined beliefs masquerading as “truths,” shape the lives of persons according to pervasive societal norms.5 Discussing the ways dominant stories are oppressive, Wimberly observes that “[r]ecruiting people into stories and identities that are not their own makes people powerless and disenfranchises them by excluding them from creating their own stories and identities.”6 Communities of faith have their own dominant narratives, including those about dis/ability. The parochial grade school Penny attended taught that dis/ability was a test from God. She disagreed with the teacher, stating that her polio was a virus, and was suspended from school for three days.

But there are other kinds of knowledges besides unitary ones. These are known as “subjugated” or “disqualified” or “indigenous” knowledges. Such knowledges form the basis for alternative narratives that marginalized groups tell about themselves and the world.7  To the extent that people with dis/abilities are marginalized, their storied experiences that contradict the unitary or dominant truths and narratives are a form of “subjugated knowledges.”  These can be accessed to create alternative stories that challenge the truth claims of dominant narratives. Penny’s youthful claim to alternative knowledge about the origin and meaning of her dis/ability never wavered. As an adult, she left the church of her childhood and has never returned.  

Dominant discourses about dis/ability rely upon restricted and fixed images of, and unitary knowledge about, persons who live with dis/abilities. A unitary and unchangeable self is inadequate to express the richness and complexity of any person. In addition, such an understanding of self can be harmful to the lives of people with dis/abilities, especially when the dominant discourse around and about dis/ability is largely and unyieldingly negative. Rather, the concept of a self, of identity, as multiple and fluid holds promise for better understanding and representing the identities of persons with dis/abilities. When personhood is viewed as multiple and fluid, dis/ability becomes only one of many characteristics a person may possess.

Identity as Multiple, Fluid, and Interactive

Hubert J.M. Hermans presents one way to understand identity as multiple, shifting, and interactive through his theory of the “dialogical self.” In developing the concept of the dialogical self, Hermans draws on the works of William James and Russian philosopher Mikhail Bakhtim. Hermans’ interest in James centers on the latter’s recognition of an “I” and a “Me” within a self. The “I” corresponds to the “self-as-knower” or the “self-as-subject.” The “Me” is the “self-as-known” or the “self-as-object,” which includes a “Mine,” that is, anything belonging to the self, whether possessions, relationships, body, intellectual abilities, and so on. Thus, the self includes persons and objects that would be identified as external as well as those that are believed to be internal. The self is not unitary but dualistic, at least.8

Hermans combines James’ thoughts on the self with Bakhtin’s concept of the polyphonic novel to expand and deepen this theory of the dialogical self. In Bakhtin’s analysis of Dostoevsky’s works, he observes little of an omniscient narrator and, instead, notices multiple characters, each of whom speaks and acts from her or his own locations, circumstances, and viewpoints. “It is as if Dostoyevsky enters his novels wearing different masks, giving him the opportunity to present different and even opposing views of the world, representing a multiplicity of differently located voices of the same Dostoyevsky.”9 In much the same way, the dialogical self is inhabited by multiple voices or positions, internal and external, in a kind of “society of the mind.”10 Multiple and narrative constructions of self encourage the integration of the many aspects and times of a person’s life. The idea of multiplicity of self is reminiscent of Catherine Keller’s concept of individuality as “an integrity of radical inclusion.”11

Hermans offers a theater metaphor as a way of understanding actors positioning themselves at different places on (or off) stage, interacting with one another in multiple “forms of dialogue: agreement, disagreement, negotiation, opposition, and conflict.”12 Additionally, some I-positions might join with others in a coalition to contradict another.13 Some positions or voices have greater value, others lesser.14 Some are safer and more familiar; others may be outside of awareness.15 Hermans notes three ways changes or innovations can occur in the self—through the addition of a new position, the movement of a position from the background to the foreground, and the cooperation of two or more positions to become a subsystem.16 In the theory of the dialogical self with its society of decentralized multiple voices or positions, it is the interaction between these positions that creates meaning and identity for the individual.17

Let’s focus on the experiences of “Zoë” to describe multiple I-positions in a self. Zoë is an African American woman in her 30s.  Obviously, Woman and African American are two positions that can narrate events in her life. She is also a sexual being who likes men. Contradicting the dominant stereotype of people with dis/abilities, Zoë identified herself as a single woman who dates but is not going to “settle” for just anyone. The Woman Who Dates and the Woman Who Won’t “Settle” For Just Anyone become a formidable pair for a man who might think that she would feel lucky to have someone pay attention to her. Zoë is also a hard worker, a very motivated self-starter. In fact, she identified herself as an overachiever who is really good at her job and anything else she tackles. She also noted that she needs and takes time away from the tasks she accepts outside of her job when she finds herself overly tired. We might say that another pair of positions that work together are the Overachiever balanced by the Self-Carer. None of these positions requires the presence or absence of dis/ability. Her physical particularities do not define her, though she is never without those—which is true of all embodied beings.

Zoë also demonstrated a number of I-positions that are utilized to her advantage in confronting the social construction of dis/ability, which could function to minimize her abilities and derail her plans, but does not. Drawing on Hermans’ theater metaphor with each of a selected group of Zoë’s multiple positions or voices entering or exiting the stage at various times and places, I offer an extended example of the ways I imagine these positions interacting over time. These interactions are based on the stories Zoë told me.

Picture the positions or voices of Zoë as several actors taking their places on stage as cued. In chronological years, Zoë is fifteen-years-old and sitting at a school desk. The embodied voice of the Dreamer is thinking ahead to college, and planning her class schedule for the next two years. She realizes that she needs algebra to meet minimum requirements expected of an entering college student. She explains that need to her math teacher who responds, “Oh, you can’t do that—it’s too advanced for your abilities. You need to sign up for the continuation of remedial math.” Because of Zoë’s physical dis/abilities, the school system frequently placed her in classes with persons classified as disabled in other ways, either intellectually or emotionally. The processes of universalization (extending limitations in one area to all areas of the person) and spread (characteristics of others spread to those who are nearby) of dis/ability attach themselves to her. Zoë takes in this message of her teacher as a part of herself, so now we have two characters on stage—one, let’s call her the Dreamer, saying “I want to go to college and need to be prepared,” and the other, the self-as-known by the math teacher, the Spoiler, telling the Dreamer “that’s beyond your (my/our) reach—just learn how to use math in ordinary life activities and take remedial math 3.” We see two of Zoë’s identities, each proposing a direction contrary to the other. In some persons the battle between the Dreamer and Spoiler, an “I want”-“I can’t” dialogue, might continue and immobilization set in. This does not happen with Zoë. Another position enters stage left to break the deadlock by aligning itself with one of the other voices, thus creating a subsystem with dominance over the other. In Zoë’s case, her mother enters the stage of her mind, takes her place next to the college-going Zoë and says, “Don’t let anyone tell you you’re not good enough—follow your dream.” We can call this voice the Defender. Thus, with the alignment of the strong Defender and the Dreamer, Zoë persists in her efforts to take algebra despite the Spoiler (within and without) who suggests more modest goals. Though the confidence that her skills in math extend beyond remedial courses prevails in Zoë’s self-concept, it does not convince the school system.

Continuing with the theater metaphor of the dialogical self and expanding it to include the layering of positions,18 that is, the positions or voices may develop or mature over time (or fail to accomplish that and become entrenched), let us look in at another scene from Zoë’s life. It appears that the previous scene was a memory that an older Zoë, now 22-years-old and about to graduate from college, is recalling as she fills out a job application. When she completes the form, she gets in her car but moves off center stage as Zoë the Dreamer at sixteen-years-old appears front stage and approaches Mr. Hayes, the Driver Education teacher, to go out for behind-the-wheel driver training. Mr. Hayes, doubtful and momentarily taken aback by Zoë’s suggestion, ushers her into the back seat of the drivers’ education car while he directs another student to sit behind the wheel. The lesson ends with Zoë still in the backseat. Over the next few weeks Zoë asks about the next lesson and is put off each time. The stage scenery shifts—the Dreamer is at home, complaining to her mother and aunt about the aborted driver training lessons. We see the Defender aligning herself with the Dreamer as the Doubter stands beside the Spoiler. Off stage we hear the voice of Zoë’s aunt making a phone call. “Mr. Hayes, this is Vicky Adams calling. Yes, I’m Zoë’s aunt. She is disappointed that she has not been included in the driver’s training schedule. Yes, I understand you doubt her ability to drive, but I assure you I will go to any lengths to make certain she is given a chance to learn to drive. I am confident that she can do anything she sets her mind to. I expect you to take her out in the car this week and teach her to drive.” The Dreamer, Defender, Doubter, and the Action-taker (her aunt’s efforts become another position) move off stage as the Applicant parks the car, grabs her crutches from the backseat and her bag with the job application, and walks haltingly toward the building. In this scene, we noted how positions or voices within the dialogical self take on new experiences and learn to navigate the challenges of life in new ways. We also see how the dominant discourse about dis/ability continues to present obstacles in Zoë’s life.

Let’s look back on stage as the many voices of Zoë buoy her up as she continues to face challenges from the perceptions of others. As the Applicant moves along, another figure accompanies her. By the conversation we identify this other figure in Zoë’s self as the Believer. The Believer is talking. “This is your job. It was made just for you. This is the job you have prayed for. I know, I know, this is not the job you had in mind when you majored in American literature in college. But remember your study partner when you took the Black lit class—remember how she cried as she told you her story while you were reading The Color Purple. Remember how appalled you were that she could live in and survive such circumstances. Remember how you went with her to the sexual assault crisis center as she signed up for those groups and how you took the bus with her each week to and from the meetings, week after week. She came into your life for a reason. You were being prepared for the work you are now to do. Be brave—you are ready for this. Remember the voice you heard last night at evening prayers—‘I will be with you and guide your way.’” The Believer walks side by side the Applicant as Zoë struggles through the double glass doors. Zoë’s Body complains about the lack of automatic doors as first her right arm leans against the door, inching it open, holding it with the right-hand crutch until little by little the door is open enough to get the left arm and crutch and her bag through the doorway. The Body sighs as it steps into the hallway and lets the door close behind it. Zoë notices that the woman behind the counter directly in front of her is staring at her with her mouth half open. Zoë walks toward the woman as the woman hurriedly shuffled papers when Zoë looks her way. The Applicant asks for Ms. Turner. The woman at the counter tells her Ms. Turner has an appointment. The Applicant informs the woman that she is Ms. Turner’s 10 a.m. appointment. The Doubter appears with the Spoiler in the woman’s place as the Applicant hands in her paperwork. The Applicant and the Doubter face each other and the voices of “You can’t”-“Yes, I can” begin to argue the merits and impossibilities of Zoë’s skills in her mind. Before the disagreement really gets going, the Believer takes the Applicant’s arm, saying, “This job is yours,” while the Defender steps to Zoë’s other side to tell her “Don’t let anyone make you think you are less than you are.” The Action-taker brings up the rear and whispers, “Look at all you’ve accomplished.” These actors fade off stage.

The time is one year later; we see Zoë in her office in the building with the double glass doors. She picks up the phone and begins to ask about a masters’ degree program in Human Resources. We can anticipate that the Defender, Doubter, Spoiler, Action-taker, Body, and Believer (and many others) will continue to negotiate the world as Zoë’s many identities develop and expand during her life journey.

This is a small sample of the multiple positions in Zoë’s experience of herself. We can see the thread of dis/ability that runs through many of Zoë’s experiences, but it is only one thread. Her identity and her life are so much more than one strand woven into the tapestry of this one self. Furthermore, when that thread does appear, it is usually first in the hand of another to whom one or more of her voices must respond.

Contrary to Penny, Zoë has a very positive relationship with her church family. She is actively sought by her pastor and members of the congregation to contribute her skills in organization and program design. They are allies with her family and friends in challenging the dominant narratives about dis/ability and recognizing the alternative narratives she is creating. 

Further complications of identity arise when dis/ability is acquired. Dis/ability was noted early in Zoë’s life. “Rebecca” was in her 20s before she became a person with a dis/ability. In addition, Rebecca’s body as well as her life were dramatically and traumatically altered. We turn next to her story.

Disrupted Identity

Rebecca is a European American woman in her late 20’s. She is a high school history teacher and an advocate for dis/ability rights. Let’s look at likely I-positions for her five years ago—before she moved to dis/ability territory. One voice within her “society of mind” is I-as-female. The Woman position knows herself as one whose attractiveness is noticed by men. Another part of her identity is as a sexual being who prefers women, thus Woman who Dates finds this attention by men unwelcome. She also values the spiritual voice. Her Spirituality position narrates a story of change over the past decade from leader in her youth group as a teen to one who was put off by her denomination’s doctrine on women and homosexuality to one who now places importance on her reverence of nature. The Artist position loves her job as a pastry chef. She loves using her fingers and hands and pastry tools to create impressive and unusual cakes and smaller edibles. Her Body position felt gangly and awkward as a youth but now feels strong and sure and enjoys physical activity. Among her multiple identities is also the Book Lover who is a voracious reader, especially of mysteries and cookbooks. Then, the unthinkable happens. Rebecca is in the wrong place at the wrong time and becomes the survivor of the malicious activity of another. Though not the target of the wrong doing, she bears the consequences. So, Survivor is another voice with a story to tell.

Dis/ability complicates Rebecca’s identity. Becoming a person with a dis/ability, or being a member of any marginalized group, complicates one’s identity. For some persons, though, the transition is more gradual than for others. “Edie” survived a spinal cord injury and, like Rebecca, uses a wheelchair for mobility. But the extent and permanence of Edie’s injuries were not known or recognized immediately. By the time she understood the permanence of them, she had become an expert at maneuvering the chair and felt mostly at home using it. Also, Edie’s appearance was unchanged. Rebecca, on the other hand, needed to get used to a “literally new physical image.” The appearance of the Body, which gradually had changed from awkward and gangly to attractive, underwent a dramatic change in little more than a moment’s time. “The first year I was out of the hospital I really avoided looking in the mirror. [But] [t]here was a time—I remember it very clearly . . . when I looked in the mirror and, looking into my eyes, I felt I didn’t know who that person was that I was seeing. That was scary and really sad, because I felt I was not that person in the mirror. And, I really didn’t like what I saw.” No concept of identity can lessen such trauma or the profound disruption of a person’s sense of self, the sense that, as Rebecca states, “I felt I was not that person in the mirror.”

Robert A. Neimeyer offers a narrative approach to identity that, though different from Hermans’ dialogical self, is not incompatible with the concept of multiple identities and adds to it an understanding of a disrupted personal narrative, such as Rebecca’s. Neimeyer develops a taxonomy of disruptions of self-narratives, identifying three types—disorganized, dissociated, and dominant.19 The disorganized narrative is consistent with the type of traumatic disruption of identity expressed by Rebecca. Neimeyer’s description of a disorganized self-narrative points to painful sensory experiences, prenarrative fragments of memory that are “radically inconsistent” with the individual’s pre-trauma narrative, and challenges to one’s primary beliefs about the way the world works.20 The meaning one makes of life and self resists simply and easy organization when an event that makes no sense has irreparably torn the previously woven fabric of life and self. How can one organize the remaining pieces of life so that they fit together in a meaningful way when the known parts of self are literally and figuratively blown to bits, scattered by the explosion, and the mirror reflects an unrecognizable image?

From Rebecca’s story, constructing a meaningful life and identity is a slow and painstaking process. But after about five years (when I interviewed her), she had taken major steps to do that. She explained little of her process, but she did give a view of her life and self now. Thus, I can extrapolate a bit about various I-positions and their change or consistency over time. She also was open in noting some places that remain, to use Neimeyer’s term, disorganized—places and images not yet woven into her current understanding of self.

Many of her pre-trauma voices still tell a story consistent with the former ones. After five years, she is still a Woman Who Loves Women, not dating because she has a partner. The Book Lover traded in mysteries and cookbooks for books about World History. The Book Lover and Historian create quite a team. The Artist can no longer use the tools of a pastry chef, but she can create with words. She writes. And she creates exciting class projects for high school students whose interest in history is sometimes difficult to arouse. Spirituality still loves nature and, rather than long hikes in the woods, takes long rides as the sun is rising to begin her day. Body has less aversion to mirrors, though catching sight of herself in glass doors can cause a “double-take . . . because I am still surprised to see myself looking as I do.” But “that’s a lot less common than it used to be. I do think I am internalizing this new image of myself, this literally new physical image of myself.” Even so, shopping for clothes is difficult, and she “avoids [looking in] the mirror.” Still, “there are times [when] I can actually look in the mirror and like what I see.” In thinking of the multiple positions on stage in the theater of multiple identities, I wonder if, for Rebecca, it might be more accurate to imagine two Body voices, one speaking from the pre-trauma position and one from post-trauma. The latter may have stories to tell that continue to be inconsistent and disorganized—and that may be enough. Rebecca’s transition from not liking what she saw in the mirror to sometimes being quite fine with her reflected image may be connected to the positions and voices in the self that come from family and friends who delight in her.

Like Zoë, Rebecca’s various positions must align to defend against attacks by the dominant culture’s representations of dis/ability. Her activism in dis/ability rights organizations and, thus, her contact with other persons with dis/abilities, provide her with still other internal voices that affirm her worth.

Implications for Communities of Faith

Communities of faith are notoriously excluding of people with dis/abilities, often seeing the disabled as an opportunity for, or an object of, their good works. What can communities of faith learn from an understanding of multiple identities in combination with the first-hand accounts of Penny, Zoë, and Rebecca?

First, we can acknowledge that there is no single way to make meaning of the presence of dis/ability. Furthermore, the person inhabiting the dis/ability gets to decide what it means to her.

Second, we can note the importance of being the kind of presence or influence or way of being that another can take into herself to help revise or resist devaluing representations of dis/ability.

Third, the value of multiplicity of identity could lead to an appreciation of the multiple variations of bodily forms within the human community as well as an indication of the coexistence of many attributes and stories, abilities and limitations, within every body. Communities of faith could challenge the concept of a “normative” body, a type of unitary, acceptable body, and reconstruct the category of body in a way that includes and values the variations of bodies that exist, including dis/ability. 

Fourth, integration of multiplicity within faith communities might include revised narratives about the connection between dis/ability and divine activity.  Rather than readings of dis/ability as divine punishment or test, we might mine the tradition to find strands of narratives that take note of God calling persons with dis/ability, such as Moses or Paul, just as God does nondisabled people.

These are only a few possibilities for communities of faith to become places of belonging to all persons, with or without dis/abilities. One key for doing this well is to listen to the voices of those whose stories have been silenced or perspectives ignored in past traditions.

NOTES