The experience of spinal cord injury: the individual's perspective - implications for rehabilitation practice.

The literature reporting studies of subjective assessments of aspects of spinal cord injury, the rehabilitation process, and the role rehabilitation program components have to play in that process have been focused predominantly by a variety of stage theories of adjustment.[1-6] These theories represent the process of coming to terms with the losses associated with injury as clinical depression involving a number of stages (eg, shock, denial, anger, depression) through which the individual is seen to move sequentially in order to achieve effective adjustment. Consequently, research data collection efforts have been confined to the period immediately following the event and have been focused on attitudes, feelings, and the coping mechanisms individuals use during this period, when they are most powerless and when the level of stress is likely to be high. These research efforts have engaged a predominantly quantitative approach in which changes are measured by specific instruments; data are collected by surveys, questions, or experiments; and data analysis is conducted using statistical procedures.

Oliver[7] suggests that these theories arise from an image, conjured up by the theorists, of what it would be like to become disabled--what he calls "the psychological imagination." This image gives rise to the "personal tragedy" view of spinal cord injury. Oliver et al8 suggest that this viewpoint leads to the categorization of individuals into two groups by health professionals and society in general: (1) those who appear to cope or become "successfully rehabilitated" and (2) those who succumb to the "tragedy" of disability. The former viewpoint lends itself to the "supercripple (B. 5:19)" or "supernormal" phenomenon described by Charmaz,[9] in which an individual with a disability functions at a level that most closely approximates the functioning of their nondisabled counterparts and tends to be ascribed heroic characteristics by those without disability. The opposite categorization includes those individuals who appear, by health professional standards, to fail to achieve their potential physical independence, to care for themselves physically, or to reestablish the roles, such as employee or parent, deemed essential to participation in society. In my view, these categorizations have failed to recognize the strategies of those individuals who perceive themselves as ordinary people coping with extraordinary circumstances. Charmaz[9] emphasizes the importance of shared definitions of valued activities and the process of identification and comparison with peer groups and individuals. These traditional and stereotyped definitions of success have placed the onus on the person with disability to adapt to the dominant majority, and consequently a whole range of uniquely individual personal, social, and economic factors have been neglected.

The psychological dimension or emotional adjustment, particularly self-perception and self-acceptance, however, is considered by some authors[1,8-13] to be the most crucial indicator of achievement of rehabilitation goals. Some authors[11,14,15] address the issue of stereotyping in relation to rehabilitation service. They suggest that staff perceive more psychological suffering than people with spinal cord injury describe. This bias may reflect assumptions, based on the stages of adjustment model, that direct health professionals to expect certain responses to spinal cord injury. Rehabilitation practice has been dogged by an "aura of paternalism"[16(p45)] that has resulted in innovative plans, solutions, and alternatives formulated by patients being frequently labeled unrealistic by rehabilitation experts, regardless of the functional implications identified by the person. This labeling is particularly evident when the responses to disability do not conform to the stereotyped role of the disabled person or to the system of values pervasive among health professionals.[1(p106)] In my experience, inherent in the professional-client relationship is the client's commonly assumed lack of knowledge and ineffectiveness in coping with the consequences of injury, and those who do not function within the system are frequently viewed as noncomplaint, difficult, unrealistic, or poorly motivated. Paradoxically, those individuals who learn to function within the rehabilitation agency, who are "inculcated"[17(pi)] into the rehabilitation process, are encouraged to be dependent and to sublimate self-definitions of successful rehabilitation.

Safilios-Rothschild[18] Suggests that without gathering sufficient direct information from their target population, health professionals assume the authority to decide the fates of underprivileged people. New awareness among persons with disability has produced some eloquent accounts of the experience of disability, for example, the accounts of Corbet[19] and Callahan.[20] That there is a need to understand individual interpretations of reality and that persons with disabilities must self-determine their social and personal goals and, therefore, their own definitions of "success" is a view that has been expressed by a number of authors[1,3,16] and that is slowly gaining more recognition through documented oral narratives[16,19,20] and qualitative research methodology.[1,21]

Rehabilitation programs have traditionally focused on the acute management of the new disability while becoming increasingly estranged from the long-term and broader health needs, including those related to aging, of individuals with disability.[1,22] These programs, in my experience, are structurally administered and designed to teach the person with spinal cord injury to perform the activities required for survival as an independent adult, and focus on teaching techniques of mobility and activities of daily living. Too often, newly injured individuals are offered a standard battery of rehabilitation services that prove later to have missed the mark because the services were not adapted to each person's particular lifestyle and needs.22 Increasingly, the limitations of this type of program delivery are being recognized, and an expanded educational model of rehabilitation is being adopted.[1] According to this model, rehabilitation is viewed as a learning experience that is a dynamic process in which professionals on the rehabilitation team are seen as facilitators or resource persons and individuals with disability as active participants in establishing goals and planning and implementing their own care.

In conjunction with this model is a growing acknowledgment that the process of "adjustment" occurs over a period of many years and that this lifelong process needs to be better understood.[1,8] Corbet[19] provides 54 biographies of individuals with spinal cord injury who describe the evolution of their lives since the onset of the injury. There is a striking diversity in these accounts regarding perceived quality of life and length of time required for adjustment. My review of the literature revealed that the research primarily addressed the needs of specific disciplines (eg, psychology, sociology, medicine, nursing, occupational therapy, physical therapy) and that the emphasis was placed on the observable, quantifiable outcomes of short-term adjustment strategies and behaviors taught to clients as part of the rehabilitation process. What appears to be missing at this point are data linking short-term adjustment strategies with data describing the reality of living with a disability over the long term. This missing link was recognized by Oliver and colleagues,[8] who designed a study, utilizing both qualitative and quantitative techniques, based on a conceptual framework of "disability career," which denotes a complex relationship between the individual and the social context and the meanings made of the experience by the individual.

As a physical therapist involved over many years with the rehabilitation system in Vancouver, British Columbia, Canada, I had the opportunity to talk with, and learn from, long-term rehabilitated individuals, or "old hands," as they call themselves. These conversations suggested that their individual responses to the injury could be more effectively understood in the light of a "significant life event," defined by Dohrenwend and Dohrenwend as a life event that "is indicative of, or requires a significant change in, the ongoing life pattern of the individual."[23(p2)] Their definition emphasizes the change from an existing steady state but does not categorize the event as positive or negative. That interpretation can only be made by an individual in relation to the meaning attributed to the event. The event of spinal cord injury involved for each subject a whole range of uniquely personal, social, and economic factors and was not simply a function of the extent of the physical disability. It was a growing awareness of the major discrepancy between the perception of spinal cord injury and the resulting disability held by myself and my colleagues, and reflected in the literature, and that held by those people who experience the injury over years that formed the background from which the research question for this study evolved.

The main research question was: How do persons conceptualize the experience of spinal cord injury over years? The word "conception," as used in this study, was defined as "an abstract, cognitive representation of some phenomenon" (Dan D Pratt, Phd; personal communication; January 1991). The word "experience" is used to indicate the act of living through, and involvement with, the event of spinal cord injury and its consequences.

Method

A qualitative research approach was chosen as the most appropriate to explore individual conceptions of the phenomenon of spinal cord injury. The methodology for this study draws from phenomenology and ethnography. Central to "the phenomenological approach, or 'interpretivist' position, is that human beings are self-interpretative and that meaning, from the individual's perspective, has an essential place in the characterization of human behavior."[24(p493)]

The qualitative design described for this study is structured by the study process itself rather than preconceived ideas or a precise research design. The strength of this approach lies in the assumption that reality is constructed and interpreted by individuals and thus many realities exist, none of which can be identified as the objective truth, and in the assumption that the way people behave will depend on how they perceive or make meaning" of that reality. Phenomenology aims to describe experience rather than interpret, categorize, explain, or define it. Inherent in the pure phenomenological approach is the ideal of the "neutral" researcher. This ideal presented some methodological difficulties for this study, given my prior interest in and knowledge of the topic of spinal cord injury. The basis of ethnography provided the resolution to these difficulties. Ethnography draws upon a number of philosophies, including phenomenology. It was first used as a systematic research approach by anthropologists study cultures. Bogdan and Biklen suggest that "the ethnographer's goals are to share in the meanings that the cultural participants, the |insiders,' take for granted and then to depict the new understanding for the reader and for outsiders."[25(p37)] Inherent in this approach is the acceptance that biases in social interaction exist and that the effects of the researcher's personal characteristics and knowledge become an integral and beneficial part of the research.25

In conducting this study, I was guided and influenced by a number of characteristics derived from these qualitative approaches, which can be summarized in the following manner. The researcher is concerned with collecting data in the natural setting. The focus is on understanding, defined by Bogdan and Biklen[25] as a phenomenon of shared meaning, that is, the individual's or "insider's" perspective or the way the individual makes sense of his or her life. In this way, qualitative research illuminates the inner dynamics of situations that are not often apparent to the "outsider." The researcher is the key instrument, and understanding, theoretical knowledge, and insights are brought to bear on data collection and analysis. As a result, identifying and stating the sources of bias and subjectivity, and documenting the "reflective" process engaged upon by the researcher, is critical to the quality of the work.

Sample

Initial access to a network of potential subjects was gained through the sponsorship offered by a personal acquaintance who had quadriplegia and was involved in facilitating a peer-support group. His explanation of the study to the group resulted in three persons volunteering to be involved, Further subjects were reached by a purposeful snowball sampling technique,"[25(p66)] whereby the first subjects interviewed are asked to recommend others. The 10 subjects (9 men and 1 woman) who volunteered in this manner had all received treatment at the same rehabilitation center. There was considerable variation in socioeconomic and educational backgrounds. All the subjects had sustained a traumatic spinal cord injury with resulting quadriplegia or paraplegia between 3 and 5 years prior to the interviews, and were self-defined as "successfully rehabilitated" or "back on track." A description of the subjects is presented in Table 1. All subjects signed informed consent statements prior to participating in the study.

[TABULAR 1 DATA OMITTED]

Data Collection

The data collection method chosen was semistructured interviews. This type of interview has been described as "a purposeful conversation,"[25] usually between two people, that is directed by one person in order to get information. Having chosen the particular focus of the study, which was on the meanings attributed, consciously or unconsciously, to the experience of spinal cord injury and the resulting disability, I asked open-ended and broad questions designed to encourage the subjects to express those meanings in their own words. Examples of the interview questions used are provided in Table 2. During the course of the interview, the researcher can probe more deeply on specific topics and issues that the subject may initiate. Hammersley and Atkinson describe this as "reflexive interviewing,"[26(p113)] which is based on the researcher's own experience. Using this type of interview, the previous notions or "foreshadowed problems"[26(p28)] that had arisen directly from my professional practice could be seen as valuable tools, allowing me to respond quickly and effectively to issues arising in the interview and making me both an active listener and a participant in the interview process. This idea of previous notions is clearly distinguished from preconceived ideas, which can serve to impose an inflexibility on the research process and undermine the interpretive nature of qualitative data collection and analysis.[26] The interview guide was reviewed for content validity by the graduate program committee members before and after the pilot studies.

[TABULAR DATA 2 OMITTED]

Pilot studies involving two individuals were conducted, which gave me the opportunity to assess the effectiveness of the interview questions and process and to identify response biases. It became apparent to me while reviewing the transcripts of these interviews that the subjects had redefined the direction of the interview assuming that my primary interest as a physical therapist, which was known by all the subjects, was the subjects' physical recovery from spinal cord injury in an institutionalized rehabilitation setting. It was not my intention to explore the experiences of the subjects during hospitalization in either the acute care or rehabilitation settings in this study. As a result of information gained from the pilot studies, I revised the interview guide, being careful to omit the terms "rehabilitation," "rehabilitation process," and "treatment," and emphasized my connections with adult education rather than physical therapy for the purpose of this study. The broad area of interest was refocused on the meanings associated with a significant life event, and any information gained about rehabilitation provision was volunteered spontaneously by the subjects. The interview results were audiotaped, transcribed, and reviewed by these two subjects to further refine the interview process. Initial contact was made with each subject by a letter explaining the search study. This letter was followed up by a phone call 2 weeks later when interview arrangements were made. Interviews were conducted at a location and time of the subjects' choosing and audiotaped. All the interviews were transcribed. These transcripts formed the main "data" for this study. In addition, two forms of field notes were used to supplement the data: (1) notes made on relistening to the taped interview and recording my impressions, nonverbal cues noted, and personal insights gained during the interviews and (2) "analytic memos."[26] The first form of field notes, recorded directly on the transcripts, enabled me to capture the meaning and context of the interviews and to clarify insights, and they allowed me to reflect on my participation in each interview. Throughout the process of interviewing and reading the transcribed interviews and related literature, I experienced in an ongoing fashion new theoretical ideas and insights, which I recorded in the form of "analytic memos." It is important to distinguish these notes from the interview material, and so they were dated and recorded separately. The compilation of such notes represents the sort of "internal dialogue or thinking aloud"[26(p165)] that is the essence of this type of research. These memos enabled me to trace the way my intellectual process was shaping the research design and emergence of themes.

Data Analysis

Data analysis began with several thorough readings of the interview transcripts in an effort to get a sense of the data as a whole, rather than focusing on individual interviews, and to see whether any interesting categories of description or conceptions emerged. None of these conceptions had been predefined. Some conceptions had been noted in the analytic memos, but these conceptions continued to change and evolve as the data collection progressed. In this way, as researcher, I found myself engaged on a dynamic analytic process guided by the subjects' own views and experiences. As the data analysis progressed, more refined and theoretically relevant categories of description or conceptions (ie, rediscovering self, redefining disability, and establishment of a new identity) were developed and differentiated by detailed descriptions. The notion of "self " was central to all the conceptions and, for the purpose of this study, was defined as the conscious image of the core of one's being that is held by an individual and which is seen as distinct from all others. Self is the sense of one's own continuity and character, acquired through experience. These conceptions were the primary method of organizing the data.

The data were then examined closely for quotes of the subjects' actual words, sentences, phrases, or paragraphs that represent these conceptions. These quotes were described as units of meaning. The data were organized by an ethnographic method described by Hammersley and Atkinson[26] as "physical sorting." The units of meaning were coded by subject's initial, page, and response number and gathered into separate lists so that the original transcripts remained intact. These units of meaning represented psychological and physical strategies engaged in by each individual by which meaning was made of the injury. These lists could then be cut up and the units of meaning assigned physically to a related conception, initially in file folders and later on flip chart paper mounted on the walls. In this way, the conceptions are grounded in the data, both constructed by the researcher and abstracted from the language used by the subjects in describing their experience. It was my opinion, shared by the committee members who were monitoring the process, that this ongoing analysis was enhanced by my familiarity with spinal cord injury. The disadvantage of preconceived ideas that might bias the analysis was anticipated. To counteract this possibility, a colleague who possessed knowledge of qualitative research and physical disability was asked to review three interview transcripts and identify and assign units of meaning according to the description of each conception. Some discrepancies in assigning units of meaning did occur between this colleague consultant and me and caused me to reflect in depth on her interpretative decisions, to further define the conceptions, and to examine them for connections and differences.

Findings

The identified categories of descriptions or conceptions--rediscovering self, radefining disability, and establishment of a new identity--by which ?meaning was made of the injury, represented commonalties but also revealed the complex and multidimensional nature of each individual's experience. They were interwoven in the subjects' ongoing experience of the injury, and the strategies associated with each conception were utilized simultaneously in meeting the day-to-day challenges of living with a disability. These conceptions are presented in a chronological manner, but this is not intended to resemble the stage models of adjustment to disability or to suggest an expectation of logical movement between them. I found in the subjects' accounts no definitive ending of one conception or beginning of another but rather an interweaving of different elements of these conceptions unique to each individual's experience,

Rediscovering Self

The category of description or conception rediscovering self focused on what I described, for the purpose of this study, as an experiential split between the individual's concept of external and internal selves, The external experience of disability or the physical changes resulting from the injury symbolized for the subjects the injury and overall sense of loss experienced, particularly in the early stages postinjury. These changes related to radical alteration in body image and physical functioning and were seen as separate from the internal concept of self, which was perceived by the individuals as being the same as the preinjury self-conception and which represented their accumulated life history and experience. From this framework of the internal self, an individual interprets the external world and interacts with it. This private experience of self involves the perception of intimacy in significant relationships, the setting and achievement of personal goals, and an overall sense of control over one's life. The accounts of the subjects revealed the importance they placed on regaining a coherent sense of self and the confusion resulting from the perceived lack of connection between their internal self--the person they knew themselves to be--and their external self Data describing components of the postinjury experience that inhibit or facilitate a resolution of the experiential split were included in this category of description.

This experiential split was expressed in the paradoxical quality of the subjects' descriptions of certain phases of their lives. Douglas commented, "I've definitely changed since my injury. I'm pretty much the same person I was before,"(8:23), and lan remembered saying to his wife

Ron Kovak, the guy who wrote Fourth

of July, described it as losing his body,

not his mind as he knew it. My wife

asked me at the time if that was how I

felt, and I said, "Yes, it feels as if your

body is someone else's." Your mind's

the same, and you think of yourself in

the same way. (1:2)

A number of factors were identified by the subjects as inhibiting the resolution of the experiential split. Many of the subjects expressed their struggles to assimilate the loss of control over physical functioning and capabilities, recognizing that they would be unable to move on until they "tuned into it," or "established a language with it again." Randy remembers separating from his external self, particularly when receiving care from health professionals:

I'd go somewhere else in my mind, go

to a happy place. If they had a problem,

it would snap me back to reality.

Eventually, I began to realize that it

was still my body and I had better

attend to it a bit more. (8:48)

For Randy, the image changes, at the time of interview, continued to be a source of stress. In contrast, several individuals expressed a degree of pride in the control they felt with regard to their body, for example:

The body is an amazing thing; it will

tell you essential things that make life

so much easier than at first when there

seems to be no communication between

it and the mind. (I. 9:52)

The rehabilitation setting was described as a restrictive environment: You've got to get your 2 years in; it's like doing hard time, like being in jail."(B. 11:42) This recurrent analogy of "jail" is closer, I think, to the real experience of the "patients" than rehabilitation personnel would like to believe. The subjects vividly recalled the sudden, severe reduction, on admission to the hospital setting, of all that characterizes individuals as adults. Like prisoners, they are stripped of the framework and trappings of their lives and reduced to issues of survival. As Ian put it,

The first couple of years are the worst

... terrible ... things don't go well.

Everything becomes an incredible

effort and physical challenge. Everything

about your body has to be relearned,

just like a child, only a thousand

times more difficult, but at the

same time you have to keep the rest of

your life going somehow. I mean life

doesn't stop conveniently while you

get reorganized, does it? (13:30)

Malcolm felt that he had consciously blocked rehabilitation out of his memory:

I can remember the projects I started

for myself, like the computerized music,

but I don't remember the pain, the

toilet, this and that done to me every

night or every second day. I was always

wondering what was going to happen

next and having no sense of it ending.

(6:23)

There is a sense of being arrested in time:

I always had a purpose before my

accident. I completely lost it after for

about 2 years; it took a long time to

get it back. It's hard to see the purpose

at first. (R. 13:81)

Rehabilitation programs were seen by the subjects to varying degrees to be dominated by an institutional bureaucracy that takes precedence over the particular needs of the individual. As Douglas said, "The rehabilitation setting is beset by policies and procedures which don't allow for individual needs and differences." (7:18) These programs were seen as focusing primarily on skill and behavior mastery. William recalls rehabilitation as:

Mostly physical stuff like stretching by

the physical therapist, strengthening,

and in occupational therapy learning

how to help others transfer and dress

me. (3:17)

Cogswell[27(p162)] Suggests that accomplishments such as achieving sitting balance and wheelchair-to-toilet transfers, which under preinjury circumstances would be considered inconsequential, become indicators of progress to both individuals with spinal cord injury and rehabilitation staff. These factors appear to have contributed to a sense of separation from "the real world" experienced by the subjects, which alienated them from their personal life and social context. As Dirk said, "On discharge, it was difficult to cope and get back into a family lifestyle, You have to relearn how to live with people again." (1:13) Trieschmann[1] suggests that the rehabilitation environment is essentially a deprivational one, because the "patient" does not have the opportunity to perform the majority of socially determined acts for which the performance was at the heart of normal daily transactions before the injury. In general, the subjects felt that there were critical gaps between what was taught and what was required on discharge into the community. This opinion is reflected in Randy's and Douglas' comments:

The things you learn in rehab are sort

of preparation, but the trouble is they

don't apply when you get into the

home situation. In rehab, everything's

done for you. [There is a] major difference

between the things you learn

yourself from experience and the

things you learn in rehab. (R. 30:176)

If your physical rehab is no good, then

your mental rehab is going to be a

helluva lot longer because you're dealing

with the physical stuff. I think it's

really important to have well-trained

people in that phase of your rehab. I

was lucky in that respect. But then you

leave the rehab and there suddenly

seems to be a real gap, a total lack of

information. I wasn't prepared for that

at first. (D. 9:25)

The subjects, although appreciating the support and assistance provided by individual health professionals, also recognized, in hindsight, how influenced they were by the emphasis on the limiting consequences of the injury, and they expressed frustration at the invocation of expected accomplishments related to level of injury:

They tell you that you can only do so

much at your level, and in your heart

you think no way I can do more than

that, and so you try and keep a positive

attitude in the face of all that negative

feedback. (R. 5:24)

People told me things at first that kinda 

blew me away, like the physical therapist

who just baldly told me, "You

can't do that at your level." (B. 5:17)

This narrow view of individual potential subtly undermined the subjects' own sense of competence and ability to make decisions in the new context of their lives. Ian and his wife were told that having their own baby was impossible and, as lan said,

It was like the final straw for me. "No"

was really hard to take; if they'd said

"maybe," I might have been able to

accept it a little better, but they just

kept saying "No." I'd heard "No" too

many times at that point. I ended up

taking no notice of them; it was the

only way to get back to familiar life. If

I'd listened to them, I'd still be staring 

at the TV, doped up with medications.

(6:14)

They have since explored the medical options, and their daughter was born 6 months before the interview. Albrecht suggests this limited viewpoint offers "a single |appropriate' model of thinking and behaving for the person with a disability and precludes a whole range of |inappropriate' options, regardless of the individuals' talents, abilities, and inclinations."[28(p41)] "They told me I couldn't" was a frequent refrain. As lan and Peter said:

All the things they told me I couldn't

do are proved wrong now. Every time

there's one more thing I can do that

they told me was impossible in my life,

I realize that being handicapped is a

lesser problem than they led me to

believe. (I. 6:15)

Rehab certainly helped get me back on

track. But I never understood why they

couldn't tell you that the way they

were teaching you was one of several

ways that was possible for someone

like me. There was so much to learn

after I left rehab. (P. 11:57)

The process of resolving the experiential split was found to be facilitated by acknowledging self-responsibility "it's my life" , the development of a new framework of disability experience, and the passage of time. The rehabilitation program was seen by the subjects as providing important information about altered physiological functioning and the skills essential for survival following the injury. Returning to the "real world," however, represented a new series of disturbing insights related to accepting self-responsibility:

I had to accept that I'm more vulnerable.

(W. 15:46)

Ultimately, it's you who has to come

out of it. I mean everyone can tell you

what to do and what's good for you,

but in the end it's you who has to

become the expert. (R. 14:84)

I meant that I had to be generally

more self-conscious, plan ahead, think

things through, which I never did before,

that's for sure. (M. 8:31)

It became blindingly clear soon after

the accident that I was the only one

who could see me through this, that

where I go in the future and what I do

with my life was entirely up to me,

scary and difficult to take at that age.

(T. 2:10)

The subjects emphasized the importance of the passage of time in facilitating the development of a new framework of disability experience:

It took at least 4 years before things

began to click into place, and life goes

on fairly normally. I realized that I had

built up a framework of experience, so

that if I run into problems or new

situations, now I know basically that I

can cope--get out of situations on my

own. (W. 24:77)

There is a sense of "things falling into place," of "life going on fairly normally" and "getting back on track" as the experiential split is narrowed and a sense of "the old self " is rediscovered. Learning, which to this point has been primarily related to skill acquisition, begins to assume a more reflective quality. As Larry said, "Far away from the hospital experience, I can evaluate what I've assimilated and what I've learned, and I'll tell you I'm impressed with the changes. (2:3)

Redefining Disability

The category of description or conception of redefining disability was described for the purpose of this study as being concerned with the efforts and strategies used by individuals to challenge the stereotypes and attitudes associated with disability and the relationship of disability to society's "norm" and to change their own subjective experience of disability. The gradual rediscovery of self appeared to provide the subjects with an avenue by which a personal interpretation of disability could be made, not in terms of inadequacy or limitations, but in terms of personal potential and self-confidence. Redefining disability involved challenging the expectations of health professionals and regaining a sense of personal coherence ("I'm back on track") and enabled the individuals to carve out their own definitions of "normal" and "disability."

Without exception, the subjects considered the health professionals' assessment of their capabilities as erroneous and responded to them as a challenge to "prove them wrong." As Larry said,

I think if they say you can't do it and

you manage to do it, there's more

feeling of accomplishment. Even if you

fail, at least you tried, learned from the

trying, and, OK, they were right that

time, but it doesn't often happen.

(7:15)

In asserting their own vision of life with a disability, albeit a shaky vision initially, these individuals spoke of slowly gained confidence in their own capabilities as "the expert" and began to trust their interpretations of new situations. The reality of living with a disability in society was consistently referred to by the subjects as an "adventure," and being the sort of person who would "just get out there and do it" was identified as the characteristic that contributed most to their perceived success postinjury. The disability, instead of being experienced as a personal trait, appeared to have become a set of physical characteristics that influence function. Brian, in trying to explain this idea to me, made this comparison with respect to the activity of dressing:

It would be like you getting up and

throwing on a whole suit rather than a

pair of shorts. Like, before, I just had

to pull on some clothes, but now it

takes me a little longer, a little more of

a technique. It all gets faster, too, with

experience. It's not completely like it

was, but it's the way it is! (7:26)

Peter did not suggest that he had lost his desire to walk but quite pragmatically was able to perceive the wheelchair as having neutral valence or even positive value for its functional asset as a means of mobility.

Not being able to walk isn't so bad;

you get used to that aspect of it. Physically,

I feel pretty good now. I'm simply

sitting down on the job more these

days. (11:55)

This reconceptualization of disability did not appear to have been formulated by assuming a Pollyanna view of the world. On the contrary, the subjects had a clear understanding of the complexities, conflicts, and complications inherent in coping with a disability. As lan said,

We're moving and renovating at the

moment, and my friends are all pulling

together to help. In the old days, I'd be

right in there, but now all I can do is

sit and watch and give them verbal

abuse. (4:9) Brian was very clear that

Different problems continue to be

frustrating, like my spasms . . . they flip

me out of the chair sometimes when I

least expect. I'll never get used to

them. (8:27)

But he went on to make the point, which many of the subjects reiterated, that it would be all too easy to sit around thinking about "what was" rather than "what is," about limitations rather than capabilities.

The subjects appeared to be guided by a more thinking or psychological process than an action-oriented one that results in the restoration of a sense of personal coherence is defined by Antonovsky as "a generalized long-lasting way of seeing the world and one's life in it."[29(p124)] The subjects spoke with relief of "getting back on track" and of their belief that "things would work out as well as one could reasonably expect from now on." (L. 13:63) A number of factors were identified that appeared to contribute to the sense of coherence expressed by the subjects: attributing meaning to the cause of the injury, expanding the range of available options, and developing new value priorities.

Research[30,31] has suggested that for long-disabled individuals, being concerned with the cause of the accident and its avoidability and assuming self-blame are associated with high-esteem and effective coping. This is in contrast to those individuals who are concerned with the question "Why did this have to happen to me?" and who assign blame to others. This was noticeably not the response identified by the individuals in this study. Almost all the subjects made reference to the cause of their injury. For Larry, Malcolm, and Tricia, their accidents had involved the death of another person, and it had been important to prove to themselves and others that they were not at fault. Tricia, whose automobile hit a horse that was loose on a country road, and William, who, while cycling, was hit by a truck that left the scene without stopping, had to deal with the anger toward those who caused their accidents. Tricia said, "The anger at the accident was the thing that at first got me determined when faced with something I couldn't do, like getting back into the chair after falling out." (4:9) Both subjects derived comfort from the fact that their accidents were not their fault. William felt "it helped in some way that the accident was not my fault, but it's academic really; I'm going to have to live with it for the rest of my life, anyway." (8:22) The other subjects' accidents were direct results of their own behavior, and they expressed relief that other people had not been involved. In accepting responsibility, they seemed able to assign the accident to the category of a single life event, which could have been prevented. As Peter said,

If I thought too much about whether

I'd done that or this, [the accident]

wouldn't have happened; I'd have got

nowhere. The fact is it happened because

I wasn't attending too well, and

the fact is, too, that I've learned something

new from the accident. (7:34) Although spinal cord injury was realistically perceived as limiting options, particularly those associated with physical activity and accessibility issues--"all that crap," as Tricia said, speaking about getting around the college campus in time for classes--all subjects emphasized the need to become more flexible in terms of options perceived as being available. They advocated adapting old interests where possible or discovering new activities. William, who preinjury was involved in competitive cycle racing, has become involved in long-distance wheelchair racing. Although he acknowledges that it is, for him, "a poor substitute for cycling," it has caused him to develop new skills in his efforts to design and construct new drive mechanisms for racing chairs. Tricia tried to explain the value changes she felt she continued to experience:

It's like you grew up, developed a new

interest in people, your education,

future. So you never give another

thought to what you thought was so

important when you were younger.

When you grew up, you changed, and

that's what has happened to me. (3:7)

Exploring options; getting involved; and being productive, efficient, or good at something on one's own terms were seen as building confidence and self-esteem and involved a diversity of value changes. The subjects' accounts indicated that they had become convinced of the fundamental importance of nonphysical values such as relationships with others, kindness, cooperation, doing one's best, and patience. As Dirk said,

All the things I thought were really

important before, I now find were not.

Like, at first, what bothered me was

that I wouldn't be able to throw a ball

to my sons anymore. You think at first

that you've lost more than you have.

We're much closer in a different way

now. Where you come from is the

heart, and I think just that insight is a

gain. (7:32)

Some of the subjects expressed these value shifts in terms of self-knowledge or personal growth. For example, Larry said,

I've come to realize that you can only

do your own personal best. I set my

own goals now. I never had goals

before. When I achieve them, it makes

me feel good about myself ... better

than I ever did before my injury. I'm

almost grateful that I had my accident

... the change in me and my life has

been so positive. (3:8)

Life, as described in these accounts, is certainly not based on unresolved frustration or disappointment, second-rate goals or expectations. When Malcolm and his partner ended their relationship, he said,

I thought at the time it was the end of

me, but it's actually been a growing

experience for me. I've stopped being

babied--she was such a perfectionist--she

did everything for me. Since she

left, I've learned to be independent in

dressing, driving, lots of things. (4:14) I think Brian summed up the nature of the value shifts when he said,

My basic lifestyle has changed. Most of

my life revolved around physical things

before, pretty superficial really; now all

that's changed. It's changed in the way

I think about life, my job, the way I

treat people who are close. I completely

enjoy this side of the fence; it's

a lot better. (1:1)

Establishing a New Identity

The category of description or conception of establishing a new identity was described for the purpose of this study as being concerned with the roles that identify and describe the individual as a social being and that are central to a person's self-concept. identity is seen as the integration of both the inner and external experience of self and is considered to be the same under all circumstances. The roles people assume, for example, those cited by the subject, spouse or lover, parent, employee, sports team member, or church participant are closely related to society's "norm."[22] Self-concept was interpreted for the purpose of this study as a bridge between self and the physical and social environment, it is a generalized vision conceived by the individual as an amalgam of abilities, talents, defects, and overall independent functioning by which the self is revealed to others. Identity is closely related to body image. Immediately following spinal cord injury, a whole series of "I am's," mentioned by the subjects in the past tense, such as "I am tall," "I am an athlete," or "I am a fisherman," are no longer relevant, and a loss of identity is experienced. The learning process revealed by the subjects involved letting go of some "I am's" and developing others about which the person could feel good. As Peter said,

I had to drop out of my two major

outdoor activities--backpacking and

playing golf--after my injury, but I

discovered there are many activities

you can get good at. I'm heavily into

playing tennis these days; it's a great

sport. (5.29) Ian, prior to his injury, had not given having children much thought, but

Now, I feel as if my daughter is the

result of all the changes I've gone

through, that I'm a much better father

than I would have been, and, man,

that's positive. (6:15)

This process was found to be associated with making comparisons with others by which self-esteem could be enhanced, by association and dialogue with a peer minority, by creating intimacy with significant others and new ways of interacting with society.

Many of the subjects made comparative statements about their peers, both disabled and nondisabled, represented by the comment "I've got a lot going for me." In some instances, a "dimension" may be selected on which the comparison is made, so as to reinforce an individual's self-concept.[32] This is a flexible method of making comparisons and can be chosen as the need arises. The following statements made by Larry and William are examples of this type of comparison:

One of my friends never accepted his

injury, and he's still just sitting around.

It's important to me to accept it with

dignity; otherwise, I'd end up like him

... bitter, frustrated, and angry. (L. 1:9)

I would rather be in Canada, like this,

in a wheelchair, than in a third-world

country watching my family starving.

(W. 9:25)

Part of establishing a new identity entailed the subjects realizing that they had advanced beyond people in similar situations, and even beyond their own expectations. For Randy, who has a high cervical injury, discovering the range of his capabilities--his personal best--through trial and error rather than getting caught up with comparisons with others proved a more effective approach. As he said,

You have to see yourself as an individual

who's got so much disability and

you've got to keep on struggling with

that. I mean, there are people out

there who have more than you and yet

are worse off than you; I mean, they

just give up. I think it's best to go your

own way and try not to compare yourself

with others. (19:115)

Another type of comparison made by some of the subjects was described as "upward comparison" by Taylor et al[32] and has the benefit of providing information that is potentially useful for an individual's own outcomes. Douglas, who now counsels persons who are newly injured, acknowledged the influence of one individual in particular:

I think I found myself emulating him

even years later when I was talking to 

fresh-injured people. Yeah, he left a

big impression. He was there as a goal

for us to strive for, and just the way he

carried himself and the stuff he said

made sense. (13:33)

The variety and prevalence of comparisons in the subjects' accounts suggest that they are rarely confined to one type for each individual, but are multidimensional and serve various needs simultaneously.

Closely related to comparisons is how helpful the subjects found their associations with "expert" peers, or "brothers in arms" as Douglas described them, over the years. As Douglas said,

Sometimes, I think it's like Vietnam

vets--the camaraderie. Because you've

shared a common catastrophic experience

and gotten over it to some degree,

right away you have something

major in common. There's a whole

bunch of stuff that can remain unspoken,

and it's almost as if it's a closed

circle. Amazing, also, how many of the

same views on life we hold. (12:32)

Douglas, in his discussion, was clear that not all people using wheelchairs became "insiders," that the process of establishing these links was selective and related to the common experience of traumatic injury and the resulting disability. To the "outsider," and this includes, in my experience, those professionals working in rehabilitation, the visible disability can become, at least initially, the outstanding characteristic of the relationship. The person with a disability has to embark on a gradual process of education to reverse this initial impression. The "camaraderie" eliminates the need, giving each individual's personal qualities a chance to assume ascendency. Most of the subjects expressed a willingness and interest in talking to others injured more recently than them. They felt strongly that they had useful information to share and that, as "old hands," they could act as role models for individuals struggling to assert a sense of identity following the injury. In reality, they were rarely in a position to act as an expert peer, as there was no purpose, or inclination, for them to return to the rehabilitation setting, and they were leading busy lives pursuing their own interests.

The accumulation of positive social experiences and the reassertion of relationships with friends, family, and partners were identified by the subjects as important factors in restoring a sense of continuum and identity. For Randy, the initial disruption and loss of these relationships in the early phase postinjury was understandable but no less distressing:

At first, people noticed a big change in

me. I mean, I was really depressed,

with good reason. Maybe that's why a

lot of my friends got scared and

stopped seeing me; they couldn't deal

with the big change they saw in my

personality. I've pretty well got my old

personality back now, and I have developed

a whole new set of friends. It

all took a long time, but what a difference

it makes to life. (6:28) As Tricia said,

You really get to appreciate people

more. When I make new friends these

days, you know, work through all the

stuff about the injury that they don't

know, I figure they really want to

know me and that's important. I put a

lot more effort into my friendships

these days. (8:20)

Friends and family who were still able to see the "inner" person, who "were able to basically drop back to the way it was before--that's emotional support--saw that I was the same person as before," (W. 23:72) despite the distraction of the physical changes, were valued by all the subjects. Ian spoke at length about the loyalty of his "biker" friends with whom he still shares lasting friendships and the stresses he placed on his relationship with his wife:

We spent a lot of time fighting. I took

everything out on her, tried, I think, to

push her away until I realized that it

was my problem, not hers. It was me

who couldn't mentally accept the physical

changes in me, not her. (8:17)

One of the responsibilities accepted by the subjects, particularly those who had sustained higher levels of injury, was the need to become, as Thomas called it, "a skilled co-manager of interactions."[33(p59)] Examples of this skill, and the conscious nature of its acquisition, can be seen in the following comments:

I can get through to people now, because

I initiate the conversation. Once

I get that wall down, they forget the

obvious, but the disabled have to make

the effort. (Dirk 3:9)

I realized I was being judged on how I

presented myself not on the chair;

that's soon forgotten by most people.

That realization helped me gain confidence

and helped my communication

with people. (L. 11:47)

You know you've made it when you

are able to deal with the public on a

one-to-one basis, and you find yourself

not caring about the way they look at

you because you know it's their problem,

not yours. You have to stop being

concerned about the fact that they are

standing and you're sitting down. Once

you're comfortable, they will be, too.

(Douglas 11:31)

I was surprised that the individuals I spoke with accepted without rancor the demands on them to neutralize this first impression and the issues of stigma inherent in its existence. None of the individuals I interviewed had adopted Charmaz's[9] "supernormal identity level," that is, set out to show the world that they are better than others or could do everything just as well as nondisabled individuals. Their actions, as demonstrated by the preceding statements, were consistently directed toward negating the stereotypical image of disability and establishing a valued self-identity and reflected a willingness to act as agents of change in educating the general public. Mead, cited by Miller, suggested that as a society shapes the self, so the self shapes society,[34] and this would seem an apt description of the subjects' experience.

In some respects, the subjects, in their efforts to establish a new identity following spinal cord injury, appear to have "renegotiated societal definitions of normality and independence"[16(p50)] in terms of purpose (ie, "something that is important to you") and having the freedom of decision making and the power of self-determination. Randy had redefined his concept of independence in these terms and now viewed himself as the expert responsible for his own care and well-being:

This is my home. I share it with another

person, and we're in charge of

what goes on at all levels. We hire and

fire the attendants, budget, decide what

food to buy. We set the rules. They are

being paid to help us, so we're not a

burden to anyone. (25:153)

The new identity demands that these individuals be accepted for their nondisability characteristics and that they be afforded all the rights and responsibilities inherent in adulthood. An emphasis on normalcy pervades the subjects' accounts:

I live a normal life. I don't feel disabled

anymore. I feel that I'm doing

things that most people do. I have a

job like everyone else. I enjoy the

same things I always did, do the same

chores, have the same problems everyone

else does. (I. 2:4)

I mean normal as an able-bodied person

... whether they are screwed up

on drugs or what, they are still normal

I'm relating normal to being just

the way you came out of your mother--living

a life. (L. 8:32)

According to the educational model, the process of rehabilitation, in an institutionalized setting, is seen as one of facilitating the restoration of normalcy by reestablishing a balance among the psychosocial, physiological, and environmental factors in an individual's life.[1] The components of the rehabilitation education focus, according to Trieschmann, need to be "survival, harmonious living, and procluctivity."[1(p42)] This proposal is supported by the findings of this study. These three components share respective commonalities with the themes of rediscovering self, redefining disability, and establishing a new identity identified in this study. Trieschmann, however, regretfully concludes that "this [focus] is consistent with our philosophy but not strategies (operational procedures) of rehabilitation."[1(p42)] In effect, despite the increasing awareness of the educational nature of rehabilitation practice and the integral role of the client in the process, it continues to be driven by the expectations and definitions of success of health professionals and the constraints of the institutional organization. The complexity of individual responses over time to the disability resulting from spinal cord injury is not consistently addressed.

While engaged on the "dynamic analytic process," it became clear to me that the transformative learning theory proposed by the adult educator Mezirow[35] could better inform the learning process being described by the subjects and could potentially provide health professionals with an alternative framework for the education component of rehabilitation practice. This theory is premised on the concept of lifelong learning and the adult's ability to make meaning of the experience. In proposing this theory, Mezirow discusses learning in terms of making new or revised meaning of experience which in turn guides subsequent understanding and action. Transformative learning is defined as "the process of learning through critical self-reflection, which results in the reformulation of a meaning perspective to allow a more inclusive, discriminating, and integrative understanding of one's experience."[35(pxvi)] Meaning perspective transformation may occur through a series of gradual transitions or through sudden insight.[36] "Disorienting dilemmas," of which old ways of knowing cannot make sense, become catalysts or "trigger events" that precipitate critical reflection and transformations.[35] The "trigger event" in the case of the subjects in this study was traumatic spinal cord injury and the resultant disability. It is an experience that calls a halt to life as previously known and that "demands attention" and a change in the individual's perspective of reality.

The individuals involved in this study developed meaning perspectives through growing up as part of a majority group of nondisabled individuals in North America. Their meaning perspectives were derived from a society that, it is generally agreed, places great value on youth, vigor, physical attractiveness, employment, and independence. This same society places ongoing trust in the power of medicine to reverse the effects of disease and disability.[18] In such a society, there are powerful stigmas and little esteem associated with persons who lack these characteristics and the capacity for cure.[18] In this culture, we early learn the concept of difference and the rejection of that which is different. These prevalent meaning perspectives were reflected in Malcolm's comment:

I never had anything to do with someone

in a wheelchair before. If I saw a

person on the street, I'd just try not to

stare, but I used to feel so sorry for

him, as if his life was sort of over.

(7:28)

As a result of the experience of traumatic spinal cord injury, these individuals became, virtually overnight, members of the minority of disabled persons in society. Initially, their experience is controlled by their present meaning perspectives, which are a reflection of how they experienced reality in the past. The results of this study would indicate that these individuals' self-definitions of success are related to an emerging ability, during the early months postinjury, to confront the inadequacy of their meaning perspectives under these radically altered conditions. Learning to become aware, or self-reflective learning, involves a process of bringing prior learning, that is, one's assumptions, premises, criteria, and schemata, into consciousness to determine whether what we have learned is justified under present circumstances.[37(p25)] Douglas came to fully recognize his personal changes through working with newly injured individuals:

When I went back to [the rehabilitation

center] to do some counseling, it was a

marker for me. It was then I really

noticed the difference between them

and myself 4 years down the road. I

kept seeing me, as I was then, in them

and so saw the difference in how far

I'd come, not just physically but more

mentally. (4:12)

An integral part of self-reflective learning is action. Malcolm is clear in his belief that what contributed to his learning process is "... drawing on positive action. Success in any shape or form that makes us happy is part of the process of getting over the injury." (1:1) Action resulting from self-reflective learning is emancipatory.[37] The injury is initially viewed as alien to all experience, but over time, that experience becomes reorganized in order to incorporate it. The validity of these new insights or meaning perspectives can only be judged by the individual. Brian thought that, in the context of his own experience, "the accident was the hardest thing I'd ever had to cope with in my life." He recently, however, experienced the death of his mother from cancer, which "was devastating, far harder than coping with my accident. I realized that what I thought was the lowest point of my life, and the worst thing that could happen to me, had faded into the past." (17:42)

This type of learning process seems to overwhelm the individual at times, engaging the individual's intellect and emotions in a manner that many subjects described as more profound than anything they had experienced before. Mezirow adds the proviso that "taking action on a new transformative insight can be blocked by external or internal constraints (or both), by situational and psychic factors, or simply by inadequate information or lack of skill to proceed."[35(p12]) Ian described a situation at work, 3 years after his accident, which he recognized "set me back, had a real detrimental effect on our lives." A new foreman had been hired at the printing company at which Ian worked who had

A serious prejudice against the disabled,

and he just decided to get rid of

me. He couldn't fire me openly, so he

set out to prove that I was incompetent.

He made life really unpleasant for

about a year. (4:9)

Mezirow has also developed and described the concept of domains of learning in relationship to meaning perspectives.[35] The first domain is instrumental learning, when we engage in task-oriented problem solving, that is, learning how to do something or how to perform. The category of description rediscovering self is concerned with the strategies that individuals use to gain mastery over physical functioning and that enable them to progress beyond the issues of survival. This category involves the ongoing learning of new skills for survival and identifying and achieving new goals. The second domain is communicative learning. Communicative learning is grounded in social interaction and communication with others and is governed by societal norms, judgments, beliefs, and opinions, The uniqueness of communicative learning stems from seeking to validate experience through communication with others. The learning follows a process described as the "hermeneutic circle" in which "we continually move back and forth between the parts and the whole of that we seek to understand and between the event and habits of expectation."[35(p9)]

Redefinition of disability, the second category of description identified through the data, was achieved by engaging the attitudes and stereotypes of disability held by the subjects preinjury and perceived as being reflected by health professionals and society in general. In rethinking the relationship of disability with their daily lives, and with others, these individuals rejected the health professionals' devaluing attitudes toward their capabilities and potential. Not only did they reject them, but they turned those expectations and attitudes into a challenge. The resulting action was directed at "proving them wrong." The subjects described their progress through the early years after their injury in such terms as "one step forward, two steps back" or "you win some, you lose some." Influenced by other peoples' reactions to the disability, the subjects' gradual rediscovery of self, and integration of disability into their lives, proceeded in a pattern of retreat and advance, Positive influences were described as the support of family and old friends, who spanned the present injury experience connecting the past with the future and, in this way, represented the continuity of an individual's life. Friends reinforced the individual's self-concept by "treating me just like before" and recognizing when "my old personality began to reassert itself." Negative influences included the loss of old friends "who couldn't handle seeing me like this" and persons in positions of power who presented obstacles to the achievement of goals. All the subjects spoke of the importance they placed in their association with others who shared the experience of having the same type of injury. It was through a dialogue with their peers or "brothers-in-arms," particularly in the early years, that they were able to share relevant information, test new attitudes, and formulate new ideas.

The third domain of learning is transformative learning, which is concerned with the development of self-knowledge through critical reflection. "Critical reflection" is the term Mezirow reserves to refer to challenging or vigorously critiquing the validity of presuppositions in prior learning.[35] Malcolm relates "our programming," or old, established meaning perspectives, to the ability to change and act on the change and, in so doing, indicates the reflective component of his experience:

I was like a computer with a blank disk

and was programmed with a whole set

of rules and beliefs, positive and negative

stuff, by my parents. Then, when I

grew up, I had to take that and blunder

my way through life. It goes right

back to our roots, and we sort of unthinkingly

accept it and keep perpetuating

the same old stuff. Well, the accident

happened, and I had to do some

major rethinking, because none of that

stuff was any help in this situation.

(3:18)

New meaning perspectives can be acquired, but transformative learning is considered to have occurred only if insights are gained as to the significance and reasons underscoring them. It is characteristic of transformative learning to demand the total engagement of people as integrated whole beings. The subjects appear to have engaged in this type of learning and, in so doing, assimilated disability into the continuum of their lives and established a new identity based on the acknowledged reality of the disability.

Limitations of the Study

The findings of this study are specific to the subjects, all of whom were treated postinjury in Vancouver. The usual form of generalizability, which would focus on whether these findings represent or describe the experience of a larger population of people with spinal cord injury, do not apply to this type of research method. This study did not differentiate between people with high and lower levels of injury. It was my impression that the accounts of those individuals with quadriplegia were particularly rich in detail and referred more to the length of time needed to assimilate disability into their lives compared with the subjects with paraplegia. In future studies, it may be useful to explore those potential differences in more depth. Although the analysis strongly indicated an ongoing transformative process, it involved a retrospective design, A prospective study, in which subjects are interviewed on a number of occasions over a number of years post injury, might reveal useful information about the process of assimilating disability into a life continuum.

Implications--Questions to Consider

The findings of this study, the qualitative method, and the introduction of an alternative theory of learning have certain implications for the rehabilitation practice of health professionals. Because of the lack of comprehensive follow-up programs and the dearth of studies ascertaining how persons with spinal cord injury perceive the rehabilitation instruction they received, clinicians have been able to deceive themselves that the traditional rehabilitation program constitutes the most effective and optimal method of service delivery for persons with disability. It is shortsighted to view rehabilitation just in terms of this experience, as though to be rehabilitated is a finite quality that can be achieved entirely within the ratified environment of the rehabilitation setting.

The findings of this study provide strong evidence that, for individuals experiencing sudden onset of physical disability, the injury event is assimilated into a lifelong process and that within this continuum disability becomes integrated with the other demands of adult life. Most clinicians are personally and socially isolated from the people we serve and rarely have the opportunity to learn from the "old hands" over many years. Although the "experts" are willing, and see the value of, sharing their expertise with both health professionals and newly injured people, there has been little effort to date to capitalize on their knowledge.

The findings of this study appear to suggest that the target of an education program may not be those individuals with spinal cord injury, but instead health care professionals. In facilitating a clearer appreciation, on the part of health professionals, of the transformational and individual nature of the experience of spinal cord injury, the gap between what is offered and what is deemed relevant in the "real world" of each individual might be narrowed. It is not that the actual content of the rehabilitation programs is inadequate, but rather that those interventions must be tailored to capitalize on the individuals' life experience and personality and to suit the particular needs identified by the individual. Not everyone will be as "successful" as the subjects who participated in this study, but learning from their experiences may assist us to develop more relevant programs in which content and instruction are directed by goals identified by the clients, reinforced by those who have experienced the injury, and provided in the "real-world" setting. The purpose of qualitative research is to provide new material or concepts that may act as the germ of an emerging theory and stimulate further data collection.[26] The centrality of the concept of self and the transformative nature of learning as found in this study may be applicable to other forms of disability of sudden onset. Questions arising from this study (eg, What does "success" in learning to live with disability mean to individuals sustaining traumatic injury? How can rehabilitation programs be delivered to support these definitions of success? What attitudes do clinicians hold about disability and disability-appropriate behaviors that influence practice?) may be answered by future research using rigorous qualitative approaches.

Conclusion

The results of this study showed how 10 individuals who had sustained a traumatic spinal cord injury conceptualized the injury and its consequences. It became apparent that these individuals were engaged in a complex learning process, which was seen to resemble concepts central to Mezirow's theory of transformational learning. This learning was described as a continuous process by which reintegration of the inner preinjury self and external self (radically altered postinjury) was facilitated. The key, it seems, is perceiving disability as a part of the picture of a person's life, not the whole. The continuity of self and the reconciliation of the physical changes resulting from the injury into the concept of self emerged as central to assimilating disability into the context their lives. Giving credence to people's interpretation of the experience of injury and disability by rigorous research would assist health professionals to recognize their preconceptions about disability and redefine the role of rehabilitation programs.

Acknowledgments

I am deeply indebted to the individuals who shared their experience of spinal cord injury with me and from whom I learned so much. I also thank Dan Pratt, PhD, and Isobel Dyck, PhD, for their generous guidance.

References

[1] Trieschmann RD. Spinal Cord Injuries: Psychological and Vocational Adjustment New York, NY: Demos Publications; 1988. [2] Weller D, Miller P. Emotional reactions of patient, family, and staff in the acute care period of spinal cord injury. Soc Work Health Care. 1977;3:7-17. [3] Wright B. Attitudes and the fundamental negative bias, conditions, and corrections. In: Yuker HE, ed. Attitudes Towards Persons With Disabilities. New York, NY: Springer Publishing Co Inc; 1988:3-21. [4] Richards JS. Psychological adjustment to spinal cord injury during the first year after discharge from the rehabilitation hospital. Arch Phys Med Rehabil. 1986;67:362-365. [5] Koehler ML. Relationship between self-concept and successful rehabilitation. Rehabilitation Nursing. 1989; 14:9-12. [6] Schulz R, Decker S. Long-term adjustment to physical disability, the role of social support, perceived control, and self-blame. Am J Occup Ther. 1985;48:1162-1172. [7] Oliver M. Disability, adjustment, and family life. In: Brechin A, Liddiard P, Swain J, eds. Handicap in a Social World. 2nd ed. London, England: Hodder & Stoughton Ltd; 1981:49-57. [8] Oliver M, Zarb G, Silver J, Salisbury V. Walking Into Darkness The Experience of Spinal Cord Injury. London, England: The Macmillan Press Ltd; 1988. [9] Charmaz K. Struggling for a self: identity levels of the chronically ill. In: Roth JA, Conrad P, eds. The Experience and Management Of Chronic Illness Research in the Sociology of Health Care, Greenwich, Conn: JAI Press Inc; 1987:283-321. [10] White RW. Strategies for adaptation: an attempt at systematic description. In: Coelho GV, Hamberg DA, Adams JE, eds, Coping and Adaptation. New York, NY: Basic Books; 1974:47-68. [11] Ben-Sira Z. The structure of readjustment of the disabled: an additional perspective on rehabilitation. Soc Sci Med. 1981;15A:565-580. [12] Cohen F, Lazarus R. Coping and adaptation in health and illness. In: Mechanic LW, ed. Handbook of Health Care and the Health Professionals. New York, NY: The Free Press; 1983: 608-635. [13] Zola IK. Denial of emotional needs of people with handicaps. Arch Phys Med Rehabil. 1982;63:63-67. [14] Albrecht G, Higgins P. Rehabilitation success: adaptation to a rehabilitation service; the interrelationships of multiple criteria. Arch Phys Med Rehabil. 1977;18:36-45. [15] Sim J. Physical disability, stigma, and rehabilitation. Physiotherapy Canada, 1990;42:232-238. [16] Phillips MJ. "Try harder": the experience of disability and the dilemma of normalization. Social Science Journal 1985;22:45-57 [17] Yoshida KK. Life Reconstruction Among Individuals With Spinal Cord Injury: A Sociological Analysis, Toronto, Ontario, Canada: University of Toronto; 1991. Dissertation. [18] Safilios-Rothschild C. Disabled person's self-definitions: their implications for rehabilitation. In: Brechin A, Liddiard P, Swain J, eds. Handicap in a Social World. London, England: Hodder & Stoughton Ltd; 1976:39-56. [19] Corbet B, Options. Spinal Cord Injury and the Future, Newton, Mass: National Spinal Cord Association; 1980. [20] Callahan J. Don't Worry--He Won't Get Far on Foot. The Autobiograpby of a Dangerous Man. New York, NY: Williams Morrow; 1989. [21] Shepard KF, Jensen GM, Schmoll BJ, et al, Alternative approaches to research in physical therapy: positivism and phenomenology. Phys Ther 1993;73:88-97. [22] Vash CL. The Psychology of Disability. New York, NY: Springer Publishing Co Inc; 1981. [23] Dohrenwend BS, Dohrenwend BP, eds. Stressful Life Events., Their Nature and Effects. New York, NY: John Wiley & Sons Inc; 1974. [24] Jensen GM. Qualitative methods in physical therapy research: a form of disciplined inquiry. Phys Ther. 1989;69:492-500. [25] Bogdan RC, Biklen SK. Qualitative Research for Education: An Introduction to Theory and Methods, Boston, Mass: Allyn and Bacon; 1982. [26] Hammersley M, Atkinson P. Ethnograpby: Principles in Practice. London, England: Routledge Kegan Paul Ltd; 1983. [27] Cogswell B. Readjustment of paraplegics in the community. In: Mechanic LW, ed. Handbook of Health Care and the Health Professionals. New York, NY: The Free Press; 1983: 156-163. [28] Albrecht G. The Sociology of Physical Disability and Rehabilitation. Pittsburgh, Pa: University of Pittsburgh Press; 1976. [29] Antonovsky A Health, Stress, and Coping. San Francisco, Calif: Jossey-Bass; 1979. 30 van der Bout J, van Son-Schoones N, Schipper S, et al, Attributional cognitions, coping behavior, and self-esteem in inpatients. J Clin Psychol 1985;44:17-22. [31] Silver R, Wortman C. Coping with undesirable life events. In: Gerber J, Seligman M, eds. Human Helplessness Theory and Applications. London, England: Academic Press Inc (London) Ltd; 1980:279-340. [32] Taylor SE, Wood JV, Lichtman RR. It could be worse: selected evaluation as a response to victimization. Journal of Social Issues. 1983; 39(2):19-40. [33] Thomas D. The Experience of Handicap, London, England: Methuen & Co Ltd; 1982. [34] Miller D, ed. The Individual and Social Self: Unpublished Works of GH Mead Chicago, Ill: University of Chicago; 1982. [35] Mezirow J. Fostering Critical Reflection in Adulthood A Guide to Transformative and Emancipatory Learning. San Francisco, Calif: Jossey-Bass; 1990. [36] Mezirow J. A critical theory of adult learning and education. Adult Education. 1981:32: 3-27 [37] Mezirow J. A critical theory of self-directed learning. In: Brookfield S, ed. Self-directed Learning From Theory to Practice. San Francisco, Calif. Jossey-bass; 1985:17-31.

Invited Commentary

I appreciate the opportunity to comment on Ms Carpenter's article. This article presents an emerging theory of reviewing the rehabilitation process for persons with spinal cord injury (SCI) from the perspective of the adult learning model. The article is provocative in its concepts and the research method chosen to study the topic.

The topic is approached using a qualitative research method based on a retrospective view from the patients' perspective 3 to 5 years postinjury. The emerging theory presents the concepts of rediscovery of self, redefining disability, and establishing a new identity. The data collection process and subsequent interpretation were well defined, and the analysis was intriguing, The process allows the discovery of concepts and insights through relistening to the interviews, review of transcripts, and sorting of the data.

The opportunity to view how 10 individuals with traumatic SCI conceptualized the injury and its consequences enforces the concept that rehabilitation is a continuum and not a finite process. In view of the premises put forth in this article, however, it may be more correct to say that the rehabilitation process is finite once the injury event is integrated with the other demands of adult life. This does not negate the fact that possible future intervention will be necessary as the person with the disability ages.

The author expresses the hope that learning from these subjects may assist rehabilitation professionals to "develop more relevant programs in which content and instruction are directed by goals identified by the clients, reinforced by those who have experienced the injury, and provided in the |real-world' setting." Most of these goals are being addressed in the United States by the current health care environment.

Accrediting agencies, such as the Commission on Accreditation of Rehabilitation Facilities, require that rehabilitation settings include patients in the goal-setting process. (I am sorry that I cannot say health care professionals were enlightened and initiated this on their own. "This is an admirable request but presents some challenges on its own. The current length of stay for individuals with SCI for inpatient rehabilitation in the United States is 30 to 90 days, 1 to 2 months postinjury. According to the author, individuals with SCI during the early months postinjury are developing the emerging ability ... to confront the inadequacy of their meaning perspectives under these radically altered conditions." Reimbursement for care is also based on meeting functional goals and showing a steady progression toward the goals. Encouraging the patient to participate in the goal-setting process for rehabilitation in a meaningful way, before the patient has had the opportunity to redefine disability based on new conditions and experiences, presents a challenge to the rehabilitation team.

Many SCI centers include individuals with SCI who have been "successfully rehabilitated" in the rehabilitation process as peer supporters. These individuals visit patients with new injuries, provide support for bridging the gap between rehabilitation and the "real world," and provide a role model as newly injured persons redefine disability. They also form support groups and networks for disseminating "real-world" information.

The last area of bridging the gap between the rehabilitation world and the "real world" is also happening through community reintegration programs as well as opportunities created by external forces. More and more limited financial resources require rehabilitation goals be directed toward basic skills and safety issues. As rehabilitation inpatient stays decrease, more therapy is being delivered in outpatient and day hospital settings. These settings have the patients living in the community while still participating in the rehabilitation environment.

Based on the title of the article and the statement of the research question, I wonder why the study was limited to patients who were self-defined as "successfully rehabilitated" and 3 to 5 years postinjury. Was the time frame significant? For implications for the rehabilitation team, the time frame is very significant. The author also raises several questions that require further study. A really important question is: From the perspective of the person with SCI, what is "successful rehabilitation"

The author has put forth an interesting theory of the conceptualization and integration of the disability of SCI seen in the "successfully rehabilitated" person with SCI. The concepts of rediscovery of self, redefining disability, and establishing a new identity provide a new framework for viewing the continuum of rehabilitation. This new framework could also help identify better timing, sequencing, and techniques of introducing skills to the newly injured person with SCI as well as determine when successful rehabilitation has occurred. Meeting patients' needs in the rapidly changing health care environment presents a challenge to the rehabilitation team,

Sherry L Clark, PT Education Coordinator Shepherd Spinal Center Atlanta, GA 30307

Author Response

I would like to thank Ms Clark for taking the time to comment on my article. Her expressed interest in the research method and merging theoretical framework is appreciated, Ms Clark provided a description of the "current health care environment" in the United States as related to the inclusion of patients in the goal-setting process and raised two questions about subject selection criteria, Which I would like to briefly address in this response.

The research question for this study arose from my evolving interest in clients who were attending an outpatient clinic and who described themselves in various ways as "old hands successfully getting on with life." I wanted to understand more about what their experiences meant to them. The first subjects were asked to recommend others who they considered "successful." In this manner, I was able to focus on self-definition rather than on my own opinion. The criterion of 3 to 5 years postinjury was chosen primarily to ensure that enough time had elapsed after the injury and rehabilitation care. In hindsight, and after analyzing the data, I felt that the 5-year limit was unnecessary and that data gained from descriptions of the experience of spinal cord injury at any time postinjury would provide useful information.

The provision of rehabilitation service in the United States, as described by Ms Clark, shares many similarities with the Canadian experience, although reimbursement for care has not, to date at least, played as central a role in the rehabilitation process. In the province of British Columbia, rehabilitation centers have adopted a "closer to home" mandate with services based on each client's individual goals and emphasis placed on preparing them to manage their own lives outside the institutional setting. The reality of client-centered practice is, as Ms Clark states, a challenge both for clients assimilating newly acquired disability into their lives and for health professionals who have functioned in a health care system that has traditionally promoted them as the "experts" responsible for planning treatment programs and defining the nature of outcomes. It is at this individual practice level rather than at the level of administration policy that the results can have the greatest effect.

The purpose of the study was to explore the subjects' conceptualization of the experience of spinal cord injury. Rehabilitation and the impact of health care professionals' interventions and attitudes were described as a part of that experience, being associated primarily with the physical strategies necessary to assimilate the consequences of injury. The experience involved many other changes and strategies that enabled these individuals to feel they had got their lives "back on track." Issues related to disability continued to arise in the individuals' lives but were frequently subsumed by other life events, Information needed to assist problem solving of ongoing disability issues was usually acquired by the subjects from their peer group. It was not their opinion, nor did I intend to suggest, that rehabilitation is finite but rather that the rehabilitation centers had a finite amount of relevant information to provide to them and that the information they sought was disproportional to the rigors of regaining access to the system.

The experience of conducting this study made a significant impact on my view of disability as part of the continuum of an adult's life and provided some largely unexpected insights into the individual's perspective of rehabilitation practice. The subjects each spoke highly of individual health care professionals, but each of them interacted with a large number of professionals on a daily basis and it is from this cumulative experience that the categories of description related to rehabilitation provision were formulated. These categories of description have been shared in the article in the hope that they will stimulate readers to reflect, as I have done, on their own interpretation of disability and attitudes toward the value systems of our clients that give rise to their personal goals and aspirations. This study was exploratory in nature and will hopefully raise more questions than it has answered. Once again I would like to thank Ms Clark for her interest and comments.

Christine Carpenter, MA BA, Dip (PT)

C Carpenter, MA, BA, Dip (PI), is Senior Instructor, Physical Therapy Division, School of Rehabili Sciences, Faculty of Medicine, University of British Columbia, T325-2211 Wesbrook Mall, Vancouver, British Columbia, Canada V6T 2B5.

This study was completed in partial fulfillment of the requirements for Ms Carpenter's Master of Arts degree in Adult Education, University of British Columbia.

This study was approved by the University of British Columbia Behavioural Sciences Screening Committee.

This article was submitted March 4, 1993, and was accepted January 24, 1994.