Interpreting Trauma in Narratives by African-American Women with Spinal Cord Injury
Marcy Epstein, PhD; Kathie Albright, PhD; Colette Duggan, PhD; and Tara Jeji, MBA, MD
Introduction
The purpose of this paper is both substantive and methodological. Substantively, this paper focuses on a narrative study of the lives of women with spinal cord injury (SCI). Current national statistics indicate that women comprise 18.3% of the SCI population (Schmerzler, Goldstein & Parkin 2001). Adjusting to life with a major physical disability threatens the most fundamental and routine aspects of women’s lives. Little is known about the impact of SCI on women’s lives, and much less on the lives of minority women. Methodologically, this paper describes a new way to analyze data that not only preserves the integrity and meaning of the narrative, but also facilitates theory-building by paying attention to the structural, contextual, and holistic elements of what has been told from one person to another within the process of SCI research.
SCI Narrative Research: Crossroads of Science and Humanities
In this article we demonstrate the utility of a new form of narrative analysis called the Narrative Form Index and Matrix (NFIM)—a tool that can be used to facilitate the understanding of the experiences of African-American (AA) women with SCI. The NFIM represents the crossroads of science as a form of knowing, and the humanistic endeavor of interpreting the worldly experience of AA women. A professional team working individually and collectively applied this form of analysis to transcripts of interviews of these women as they take up the issue of SCI-related trauma and its impact on their lives.
Our research group was composed of an English academic, a clinical psychologist, a sociologist, and a physician. Two of the four have a permanent physical disability––SCI––and three of the four are Caucasian. We acknowledged the differences among us and the disciplinary adjustments required in combining typically scientific and humanistic endeavors in the representation and analysis of the narratives of peoples’ lives (Mitchell & Snyder, 2000). The relative diversity of our personal experiences and rehabilitation expertise lent itself to a more comprehensive approach in examining the women’s stories, per Barbara Hillyer’s Feminism and Disability, underscored the importance of personal and vulnerable voice, and emphasized self-agency in the representation of life experiences and concerns among those making up a minority population with SCI.
People often find it of value to tell their life stories to others who can empathize with, validate, or even be inspired by them. In circumstances of social isolation, such as the separation that can come about through illness and disability, life stories can often become distanced from human discourse, untold and unheard by others. Our journey into the personal experiences of African-American women with SCI through the vehicle of narrative analysis has been a potent reminder of the wisdom that is passed on through oral tradition as well as the potential healing benefit of telling––even reweaving––the story of one’s life in interpersonal space.
Text-Based Data
The rehabilitation literature has revealed a growing interest in the use of narratives as a way to think about, describe, and understand the experience of illness, trauma, and disability. Proponents of qualitative research use a variety of theoretical and methodological approaches such as grounded theory, ethnography, phenomenological analysis, and biographical methods, to examine and interpret the disability experience from the perspective of the “insider” (Coles, 1989; Kleinman, 1988 and 1992; Dossey, 1991; Mattingly, 1991 and 1994; Peloquin, 1993; Frank, 1984 and 1996; Spencer, Young, Rintala, & Bates., 1995; Spencer, Davidson, & White, 1996; Crewe, 1997; Linton, 1998; Duggan & Dijkers, 1999; Duggan, 2000). More radical formulations of narrative research come from the British disability studies movement, in which narratives include the outsider or the underrepresented: “personal identity emerges as ‘figure’ against the ‘ground’ of culturally-given images of the self, and how identity operates as a complement to and consolation for alienation” (Parker, 2005).
Alongside the rehabilitation literature, there exists a parallel body of noteworthy works containing stories written by persons who themselves are living with a disability including SCI. Most of these accounts have been written by men (Kovic, 1976; Zola, 1982; Murphy, 1987; Hockenberry, 1995; Reeve, 1998, Karp & Klein, 2005]. A few that have been made available to the public through the popular press, however, come from women with SCI (Eareckson, 1996; Saxton & Howe, 1987; Eareckson Tada, 1996; Linton, 2005). Each of these narrative accounts communicates in a most powerful and compelling way the changes individuals experience as they “adjust” to living with SCI. Like Franks’ (1995) examination of narrative and bodily difference, each is powerful and compelling precisely because the integrity of story and with this, the essential meaning of the disability experience, is preserved in its entirety.
Often, patterns and themes are the “end result” of the qualitative practice of coding for incidence. Coding for incidence can result in an overemphasis on frequency of references at the expense of other legitimate approaches to pattern-finding and analysis. This coding practice may compromise the researcher’s ability to interpret the core meaning of the participants’ narratives.
This study contributes to a small, but growing, body of rehabilitative inquiry examining “text-based” data about women with SCI. We are interested in the operation of text-analysis in terms of what African-American women with SCI wish to tell us about their lives that may otherwise go unobserved, thus unmarked.
African-American Women with Spinal Cord Injury
A single story may present a partial view of reality (Wilson & Lewiecki, 2000), but the importance of that story may translate powerfully to the stories of others—multiple minorities like African-American women––who are underrepresented or misunderstood in SCI rehabilitation research. The literature suggests that the individual who narrates his or her experience will do so and interpret it through the filters of religion, race, ethnicity, social class, and regional subculture (Mills, 1959; Farrarotti, 1981; Mancuso & Sarbin, 1983; Wendell, 1996; Kemp, Krause, & Adkins, 2001). Rahman, Albright, and Yaroslavsky (2005) explored the racial difference in perceived stress and life satisfaction among African- and Caucasian-American women with SCI, suggesting that race/ethnicity is an important dimension, perhaps even a mediator of women’s SCI experience. Sociopolitical factors such as racism or misogyny underscore the difficulty in managing rehabilitation efforts for African-American women with SCI (Krause & Anson, 2001); for example, Meade, Lewis, Jackson, and Hess (2004) found racial disparities in employment and vocation for African-Americans both before, and after, SCI.
Researchers of African-American women with SCI run the high risk of over-generalizing from small samples, or over-simplifying the experiences of African-American women with disabilities. There will always be a diversity of perspectives and multiple interpretations of the phenomena of interest to the researcher. The vantage point of this study is that it transmits “clean” interviews that have not been distilled of their details and idiosyncrasies; therefore, the African-American women with SCI may “speak for themselves,” their writings “speaking for them,” each individual participant supplying a new, complex, and overlapping narrative which, in turn, are studied. The task of narrative research is to build up a picture of the larger whole that, on one hand, preserves the integrity and meaning of individual narratives both singly and grouped, and on the other hand, generates theories useful to professionals in the multi-disciplinary treatment of SCI.
Hypotheses
A new instrument, the Narrative Form Index and Matrix (Epstein, Albright, Duggan, Jeji, & Tate, 2006), provides an insider perspective on women’s lives with SCI, allowing a more integrated and enriched picture of their health concerns—why they became traumatized, what helps them to recover or adjust, and where their struggles and goals lie. Using the NFIM, we hypothesized that the narratives of the six women we studied would describe more than just a single pattern of trauma and recovery. Instead, we thought their stories would depict how socioeconomic factors affected their sense of well being, stress, and satisfaction with life. We further hypothesized that these African-American women with SCI would share common experiences in rehabilitative treatment, relying on networks of family and friends both to help them access post-trauma care and to actualize their identities as African-American women with SCI, including their roles as mothers, daughters, friends, romantic partners, and earners. The ways these women expressed their shared values and goals, however, may differ greatly, suggesting a wider range of post-traumatic experiences in the community than previously imagined.
Method
Study Design and Participants
This study uses the NFIM to examine the complications of managing post-trauma care and community living as seen in oral narratives by African-American women with SCI. The narrative material we examine in this article comes from a much larger qualitative/quantitative study of stress and coping over the life course (Tate, Albright, Duggan, Epstein, Harrison, Jeji, Lequerica, Roller, Rahman, & Schoen, , 2006) in which semi-structured interviews were conducted with a sample of 50 community-dwelling women with SCI. Of this number, 26 were Caucasian and 24 were African-American. The women also completed a set of quantitative instruments that included the Perceived Stress Scale (PSS), the Ways of Coping (WOC) questionnaire, and the Satisfaction with Life Scale (SWLS).
The qualitative analysis that we present here involves selecting a subset of six participants from the larger study and analyzing text using a matrix arrangement of narratives related to the form of expression the women used telling about their traumatic experience. The selection of participants was based on volume of narrative provided from in-depth interview, geographical location within metropolitan Detroit, and race/ethnic category of African-American. It should be noted that all of the interviews were conducted by author Tara Jeji, MBA, MD.
Instrument
The narrative form analysis is used to explore cleaned transcripts of the sub-sample of African-American women with SCI. The NFIM is an arrangement of data based on the content of written or oral documents. The NFIM facilitates the analysis of structural, contextual, and whole elements of what has been told from one person to another within the process of research. Using terms related to narrative analysis that have been inventoried in the Narrative Form Index (Expanded Version; 101 items), the NFIM identifies and combines components of narrative to allow various readings to emerge. Results and data inference may vary according to experimental design; the NFIM helps interrogate the narrative values of researchers and participants, extend the authority of research participants further into the analytical process, deepen and enrich the understanding of narrative material through the comparison and contrast of results, and reveal researcher priorities and possible bias.
Results
Narrative variables drawn from the NFIM “constructed” trauma in terms of the complicating experiences these women had after SCI. Traumatic SCI is viewed here as a crucial, decisive event that repositioned them in relation to old or new goals. This NFIM trauma construct played out clearly in the narrative data. Results are presented according to the three narrative variables employed from the NFIM to construct three dimensions of trauma used during the analysis: Crisis, the structuring experience of the SCI; Raveling/Unraveling, the ways the sub-sample put their experience into context in their attempts to reintegrate their lives; and Goal, a common concept of life integration and purpose that trauma often interrupts or reconfigures. Together, these dimensions give a picture of how trauma operates in the lives of these African-American women with SCI, with narrative forms of interpretation on one hand and narrative data on the other.
The first variable, Crisis, is drawn from a “narratological” sub index in order to represent how the women structure their narratives around a focal point, in this case, their spinal cord injuries, notably how their lives took a turn as a result of acquiring their disabilities. As the women put it:
My [last name omitted] means “war road too difficult to travel.” It’s Kenyan. . .A lot of times I look at it like I’m in a war zone and I have to be very careful about where I am, where I go, who I’m with, what I do. [Participant 5]
He was angry and I was just kind of happy-go-lucky, enjoying my life. . .Black man, just anger built up. He, you know, released it with these, um, drugs and everything. But drugs I didn’t even know about…but he released his tension and I got the bulk of it in my neck and in my head before he shot himself. [Participant 1]
The narrative reports on this variable were easiest to identify and transmit, since the women largely elected to discuss their lives before, during, and after injury. Mentions of African-American identity, disability identity, or womanly identity could also be found in this dimension of response: telling the interviewers who they were helped establish the women in relation to how and where they incurred their trauma.
Because these injuries rarely occur without context (none of our participants experienced an insidious onset of SCI or neural-tube problems resulting in congenital SCI), we constructed trauma further in terms of peri-traumatic affect. Drawing from the “contextual” sub index of the NFIM, we selected the variable Raveling/Unraveling in order to construct the complexity of decisions and actions demanded of the women after their SCI. This second dimension allowed us to focus more closely on the dynamics of problem creation and problem solving that most often characterizes the SCI survivor. A great majority of responses in our study focuses on the management of their health and rehabilitation. As predicted, the participant group described a wide range of successes and losses in the aftermath of their injuries, a maze of decisions and indecisions subtly mapping the impact of traumatic injury on their independence and dignity:
But [at the Bicentennial Tower], I was taught things I already knew. I already knew banking and cooking, these things. I was looking forward to how to do my care, how to maybe do my cathing and how to maybe do my own bowel program…didn’t really apply to me, this group of people who were cognitively impaired. [Participant 1]
Me and my son went out there, I helped him get the bath bench. “You’re going to do that from now on.” So every time I had to take a bath, I have to get my son to help me. [Participant 4]
The second comment above communicates the traditional double bind many women with SCI experience: the strength and reassurance that working with family brings to the trauma survivor, yet the onus of needing that close one to perform intimate tasks. Several women expressed that they needed their family members for security and practical purposes, but that this opportunity for closeness came with a cost, for example, the reversal of mother-daughter roles, loss of parental control over younger children, or the dissolution of a relationship.
A third dimension of analysis resulting from the construct of trauma in these narratives depended on the force of traumatic injury in both shaping and attaining the participants’ personal goals. We drew our final variable from the holistic sub index of the NFIM—Goals—to add to the matrix of narrative structure and context the recognition of an overall sense of personal displacement we observed among the survivors of traumatic injury. This dimension of trauma was seen in a range of responses, in the inability to formulate the next step, the struggle to realign personal goals with their changed bodies or mentalities, or, in some cases, the renewed purpose found after realizing themselves as African-American women with disabilities:
You got to cry and go through the pity party and all of that and feeling sad and then after that you got to sit and say, “Okay, what am I going to do?” Put everything in perspective. Figure out what you want to do, how you want to do it and go, and don’t ever think that there’s limitations. [Participant 2]
Goals, in the holistic sense of the term, presented the most difficult of variables to graph into the matrix, not because the women lacked statements of personal goals but because, by definition of the narrative variable, goals were manifest throughout the entirety of their narratives. Their whole stories, unparsed, expressed their final, desired state of being. Less often did the participants state that their goals were to walk again or other expressions of physical goals suggesting the “whole body” unaffected by SCI. The women desired improved physical states, but usually to bring their bodies into a state of equilibrium in the after-effects of traumatic pain or stress: “I want a baclofen pump because taking the baclofen is great. . . I want to be up and at it. . .it shoots directly into my spine.” [Participant 4]
Similarly, the narrative analysis revealed that our respondents utilized the opportunity of telling about their lives as a catalyst for improving them. In one case, a woman [Participant 2] who had not gotten out of bed for two years and who at time of interview suffered several secondary conditions as a result of inactivity, told stories of how she and another woman with SCI would visit each other and help others. During this telling of how she wanted to make a difference in other women’s lives, her tone turned more contemplative, brighter. She announced that getting out of bed is her new goal. Throughout her narrative beforehand, it was evident that she has become overwhelmed and isolated after a particular wave of physical and emotional post-traumatic stress. She operates at a loss of her goal. From the range of goals shown in each case, the variable hints that, for this particular sub-sample, goals captured the details of what each woman felt she had to do to gain solvency, independence, or self-efficacy, rather than a particular material or social state.
To illustrate what the NFIM depicts from each case, we focus next on the narrative presented by Participant #6, a highly articulate woman whose injury occurred while she was incarcerated, a fact she felt led both to her disability and to her path of dealing with the trauma she experienced before and after her SCI. The Trauma NFIM below displays the results of narratological, contextual, and holistic analysis from her interview. Trauma data may be interpreted horizontally, examining the crisis that ravels or unravels for her, connecting or disconnecting to her goal. Read vertically, patterns of crisis (V1; related to traumatic SCI), complication (V2; problem solving), and goal (V3; self-efficacy) emerge, shaping her views on trauma:
From the illustration above, it becomes evident that Participant #6 has experienced some of the most negative outcomes of American health care for women with SCI. Her account includes, but is not limited to, an SCI fraught with several crises at once, many of which could have been averted if she had been trusted when she first had reported her SCI symptomatology. She is adept at asking for assistance or thinking of ways to advocate for herself, whether its organizing the prison population for women’s education, fostering family structure on the inside and on the outside, and persisting in her demands for care and dignity. Her story palpates almost the entire range of post-traumatic responses, as seen through her description of goals, on one hand, her plans for further education or the cultural development of her grandchild, and on the other, the post-traumatic malaise that keeps her from formulating the move to get her out of “the rut.”
Trauma, we learn from Participant #6, far exceeds the one event of the slip-and-fall that lands her with paraplegia, or the health professionals who make her recovery more complicated than less. Trauma becomes the “biopsychosocial template” for her missing sense of well-being. In this sense, Participant #6 embodies, by telling her life story in this manner, the amazing capacity for self-knowledge that these African-American women often possess. Simultaneously, her narrative succinctly identifies the personal and systemic issues that compress her experience into a box she cannot seem to get out of, the complex of social circumstances, not her wheelchair, that confine her. Asked how she copes with it all, Participant #6 laughs, “Oh, God, you know what? I have no idea.”
Discussion
By featuring representative narratives from participants, the NFIM resulted in a dynamic, enriched, and in-depth perspective on trauma. Participants reported in their own language that having dignity, social and personal impact, and relationships were primary values for the group which, because of traumatic injury, becomes complicated physically, emotionally, cognitively, and spiritually. Moreover, the participants account in great detail either the practical support, accessibility, medical, or social resources that they have or that they lack in their recuperation and recovery, the “crisis” which they “ravel” or “unravel” weighed against those resources, and where they see themselves in relation to their “goals.”
The participant group appeared to reflect Nosek & Walter’s comparison of women with and without a disability. Nosek & Walter describe the impact of SCI on a range of social issues: lower rates of employment, environmental barriers to socializing, and unmet needs for personal assistance. NFIM analysis suggests additional social-economic stressors––such as inaccessible housing or transportation, lack of peer or therapeutic support, inadequate goal setting––for urban African-American women with this disability. References to biographical factors recurred in their narratives as a way of making sense of the injury experience and its consequences. Indeed, themes of biographical disruption have been reported in other qualitative studies of traumatic injury, chronic illness, and chronic conditions (Yoshida, 1993; Carpenter, 1994; Bury, 1982; Charmaz, 1983; Scheer & Luborsky, 1991; Duggan, 2000). Since material resources and practical supports appear inadequate to their needs for interacting with friends, family, and communal environment—including their medical care––it might be assumed that the entire group would decry their disabilities. Some do. Others, however, adapted after their traumatic injuries in ways that embraced the disruption in their lives, telling instead of ways they either found more richness in their lives (a form of raveling, since their lives were fuller, more complicated) or found creative ways to surmount environmental or personal barriers (unraveling their problems).
This investigation revealed a matrix of continued suffering after their traumas, complex processes of reconciliation with what life had thrown them, significant serenity and positive goal-setting, and a clear adjustment in what they now aimed for in their lives. The NFIM proved highly useful to the development of richer interpretations of what trauma means to African-American women with SCI, but in its present form is not an efficient instrument. Our pilot implementation of the NFIM was rich but lengthy, given the enormity of the quality data the sub-sample provided. Nonetheless, we suggest, more than word searches on the topic in the narrative transcripts, narrative researchers should take the time to read their transcripts thoroughly and inclusively for related passages. We think this approach of direct transmission and comprehensive analysis will promote a more rich, salient, and accurate result in both data management and inference.
Conclusions: “Telling Lives”
Not only does the narratological interpretation of trauma in this population formulate the direct influence by members of Detroit’s African-American community of women with SCI, but also it was found that understanding of these women’s trauma could be contextualized in terms of social-economic, psychological, and social factors. How these women understand themselves as minority females with serious disability in society revealed how their rehabilitative and community surrounds import and export concepts of post-injury identity and social belonging. Since a multidimensional understanding of post-traumatic experience is needed among this population, the construct of their interviews as tales of volition, purpose, and goal further served the holistic aims of a community of strength, struggle, and healing.
The NFIM application assisted in developing awareness in the health sciences of misunderstandings, distortions, oversimplifications, and invalidations associated with the study of particular research groups. Inspired by and for disability and other minority communities in the United States, the NFIM may also address the needs of other objectified, disenfranchised, pathologized, and otherwise misunderstood groups. It may also serve the needs of minority, women, and disabled researchers as we develop an understanding of our own communities with equal measures of scientific and cultural acuity. As future NFIM applications are explored so, too, will our abilities to expand the knowledge of those we would help in the language and meaning systems of their own experiences.
In sum, the NFIM may be used in conjunction with traditional models of reliability but is not intended for direct compatibility with statistical models, since its model of reliability depends on an evidentiary production of authoritative text-data from the research participant. Similarly, there are thousands of variable combinations of narrative variables to apply to the NFIM, requiring researchers to be clear about their constructions of narrative meaning while analyzing form. Variable complexity notwithstanding, the potential for enriching the understanding of SCI narratives by the African-American women interviewed here, these telling lives, is immense, and, like all good scientific methods, must be used with prudence.
Qualitative analysis using the NFIM provides a useful inroad for interpretation of how trauma affects the complex lives of African-American women living with a disability in an urban community. A multidisciplinary approach to the study of minority women’s experiences with SCI, case in point, is not only necessary but broadly illustrative of the cooperative power of narrative analysis once the research is complete. This method may be a key to the development of a fuller and more contextualized understanding of the experiences of those whose lives are under-represented in the mainstream: African-American women’s lives, the lives of women with SCI, and all people with disabilities.
Acknowledgements
The data for this analysis were drawn from a larger study completed this year at the University of Michigan and Rehabilitation Institute of Michigan, “Stress and Coping Over the Life Course: Women with Spinal Cord Injury.” We thank our colleagues in this study for their ideas and support: Denise Tate, Sunny Roller, Barbara Schoen, Reece Rahman, the late Julie Harrison, and Anthony Lequerica. This work was supported in part by the National Institute on Disability Research and Rehabilitation training grant #H133P03004 and study grant #H133G020060. We are grateful to all the women who shared their stories with us. Additionally we acknowledge the University of Michigan Initiative on Disability Studies and the Ann Arbor Center for Independent Living for their keen interests in interdisciplinary efforts in the study of disability.
References
Beaugrande, R. de. (1980). Text, discourse, and process: Toward a multidisciplinary science of texts. Norwood, NJ: Ablex Publishing.
Black, J. B. & Bower, G. H. (1980). Story understanding as problem solving. Poetics,9, 223-250
Brooks, C. & Warren, R. P. (1959). Understanding fiction. (2nd ed.) New York: Appleton-Century-Crofts.
Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4, 1167-1182.
Carpenter, C. (1994). The experience of spinal cord injury: The individual’s perspective––implications for rehabilitation practice. Physical Therapy, 74, 614-629.
Charmaz, K. (1983). Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health and Illness, 5, 168-195
Coles, R. (1989). The call of stories: Teaching and the moral imagination. Boston: Houghton Mifflin.
Crewe, N. (1997). Life stories of people with long-term spinal cord injury. Rehabilitation Counseling Bulletin, 4, 26-42.
Dossey, L. (1991). Meaning and medicine. New York: Bantam.
Duggan, C. H. & Dijkers, M. (1999). Quality of life––peaks and valleys: A qualitative analysis of the narratives of persons with spinal cord injuries. Canadian Journal of Rehabilitation, 12, 179-189.
Duggan, C. H. (2000). ‘God, if you’re real, and you hear me, send me a sign:” Dewey’s story of living with a spinal cord injury. Journal of Religion, Disability & Health 4, 57-79.
Eareckson Tada, J. (1996). Joni: An Unforgettable Story. 20th Anniversary Edition. Grand Rapids, MI: Zandervan Publishing Co.
Epstein, M. J., Albright, K. J., Duggan, C. H., Jeji, T., and Tate, D. G. (2006). Narrative Form Index and Matrix, Expanded Version.
Farrarotti, F. (1981). On the autonomy of the biographical method. In D. Bertaux, (Ed) Biography and society. Beverly Hills, CA: Sage Publications.
Franks, A. W. (1995). The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Press.
Frank, G. (1984). Life history model of adaptation to disability: The case of a congenital amputee. Social Science and Medicine, 19, 639-645.
Frank, G. ( 1996). Life histories in occupational therapy clinical practice. The American Journal of Occupational Therapy, 50, 251- 264.
Hillyer, B. (1993) Feminism and disability. Norman: University of Oklahoma Press
Hockenberry, J. (1995). Moving violations: War zones, wheelchairs and declarations of independence. New York: Hyperion.
Holman, H. C. (1972). A handbook to literature. Based on the original by W. F. Thrall and A. Hibbard. (3rd Ed.). Indianapolis: Bobbs-Merrill.
Karp, G. & Klein, S.D. eds. (2004). From there to here: Stories of adjustment to spinal cord injury. Horsham, PA: No Limits Communications, Inc.
Kemp, B., Krause, J. S., & Adkins, R. (2001). Depression among African-Americans, Latinos, and Caucasians with spinal cord injury: An exploratory study. Rehabilitation Psychology, 44, 235-247.
Kleinman, A. (1988). The illness narratives: Suffering, healing, and the human condition. New York: Basic.
Kleinman, A. (1992). Local worlds of suffering: An interpersonal focus for ethnographies of illness experience. Qualitative Health Research, 2, 127-134.
Kovic, R. (1976). Born on the Fourth of July. New York: Pocketbooks.
Krause, J. S., & Anson, C. A. (1997). Adjustment after spinal cord injury: Relationship to gender and race. Rehabilitation Psychology, 42, 31-46.
Linton, S. (1998). Claiming disability: Knowledge and identity. New York: New York University Press.
Linton, S. (2005). My body politic. Ann Arbor, MI: University of Michigan Press.
Madden, D. (1979). A primer of the novel: For readers and writers. Lanham, MD: Scarecrow Press.
Mancuso, J. C. & Sarbin, T. R. (1983). The self narrative in the enactment of roles. In T. R. Sarbin & K. E. Scheibe (Eds.) Studies in social identity. New York: Praeger.
Mattingly, C. (1991). The narrative nature of clinical reasoning. American Journal of Occupational Therapy, 45, 979-986.
Mattingly, C. (1994). The concept of therapeutic employment. Social Science and Medicine. 38, 811-822.
Meade, M. A., Lewis, A., Jackson, M. N., and Hess, D. W. (2004). Race, employment, and spinal cord injury. Archives of Physical Medicine & Rehabilitation. 85, 1782-92.
Mills, C. W. (1959). The sociological imagination. New York: Oxford University Press.
Mitchell, D. T. & Snyder. S. L. (2000). Narrative prosthesis: Disability and the dependencies of discourse. Ann Arbor: University of Michigan Press.
Murphy, R. (1987). The body silent. New York: Henry Holt & Company.
Nosek, M. A. & Walters, L. T. (1998). Community integration of women with spinal cord injuries: An examination of psychological, social, vocational, and environmental factors. Topics in SCI Rehabilitation, 4(2), II, 41-55.
Parker, I. (in press) Qualitative psychology: Introducing radical research. Berkshire, UK: Open University Press.
Peloquin, D. (1993). The depersonalization of patients: A profile gleaned from narratives. The American Journal of Occupational Therapy, 47, 830-837.
Rahman, R., Albright, K. J., and Yaroslavsky, I. (2005). Perceived stress and life satisfaction in women with a spinal cord injury: An exploratory look at racial differences. SCI Psychosocial Process, 18(1), 1, 6-8.
Reeve, C. (1998). Still me. New York: Ballantine Books.
Rumelhart, D. E. (1975). Notes on a schema for stories. In D. G. Bobrow & A. Collins, (Eds.). Representation and understanding: Studies in cognitive science, (pp. 211-236). New York: Academic Press.
Saxton, M. & Howe, F., (Eds.) (1987). With wings: An anthology of literature by and about women with disabilities. New York: Feminist Press.
Scheer, J. & Luborsky, M. L. (1991). Post-polio sequelae: The cultural context of polio biographies. Orthopedics, 14, 1173-1181.
Schmerzler, A. J., Goldstein, J., & Parkin, K. (2001). Women, spinal cord injury, and domestic violence: A review. In D. F. Apple (Series Ed.) & M. Sipski (Vol. Ed.), Topics in Spinal Cord Injury Rehabilitation: Vol. 7. Women and SCI (1st ed., pp. 37-41). St. Louis, MO: Thomas Land Publishers.
Spencer, J. C., Young, M. E., Rintala, D., & Bates, S. (1995). Socialization to the culture of a rehabilitation hospital: An ethnographic study. The American Journal of Occupational Therapy. 49, 53-62.
Spencer, J. C., Davidson, H. A., White, V. (1996). Continuity and change: Past experience as adaptive repertoire in occupational adaptation. The American Journal of Occupational Therapy. 50. 526-534.
Tate, D. G., Albright, K.J., Duggan, C.H., Epstein, M.J., Harrison, J., Jeji, T. et al. Final Report: Stress and Coping Over the Life Course: A Perspective on Women with Spinal Cord Injury. Three-year, field-initiated research grant funded (beginning 9/01/02) by the National Institute on Disability and Rehabilitation Research (#H133G020060). Unpublished.
Thorndyke, P. W. (1977). Cognitive structures in comprehension and memory of narrative discourse. Cognitive Psychology, 9, 77-110.
Wendell, S. (1996). The rejected body: Feminist philosophical reflections on disability. New York: Routledge.
Wilson, J. C. & Lewiecki, C. eds. (2000). Embodied rhetorics: Disability in language and culture. Carbondale, IL: Southern Illinois University Press.
Yoshida, K. (1993). Reshaping the self: A pendular reconstruction of identity among individuals with traumatic spinal cord injuries. Sociology of Health and Illness, 15, 217-245.
Zola, I. K. (1982). Ordinary lives: Voices of disability & disease. Cambridge, MA: Applewood Books.
Marcy Epstein, PhD, is a NIDRR Research Fellow of Physical Medicine and Rehabilitation at the University of Michigan.
Kathie Albright, PhD, is a Psychology Fellow of Physical Medicine and Rehabilitation at the University of Michigan.
Colette Duggan, PhD, is Senior Research Associate at the Rehabilitation Institute of Michigan and Assistant Professor, Department of P M & R, School of Medicine, Wayne State University.
Tara Jeji, MBA, MD, is a Research Associate, Project Coordinator, and Peer Counselor at the Rehabilitation Institute of Michigan and Assistant Professor, Department of P M & R, School of Medicine, Wayne State University.