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Transformational Outcomes for Individuals with Spinal Cord Injuries
Clark Sloan & Lorraine Wilgosh
Abstract
Many parents have reported positive transformational outcomes as a result of parenting a child with a disability. These transformational life changes have been described by parents (Scorgie, Wilgosh, & McDonald, 1996) as personal (changes in who I am), relational (changes in how I relate to others), and "perspectival" (changes in how I view life). Furthermore, caregivers have reported similar transformational outcomes from relationships with individuals with disabilities (Biersdorff, 2002). Therefore, the purpose of this paper was to examine whether individuals who have sustained disabilities report similar positive transformational outcomes subsequent to becoming disabled. This retrospective study examined the personal reports of men who have had spinal cord injuries (Sloan, 2000), to determine whether the experience of disability has a positive transformational impact, as does the experience of parenting or providing care to someone with a disability. Clearly, the experience of disability, personally or in relationship with someone with a disability, has been reported to result in positive transformational outcomes. However, much more research is necessary to increase our understanding of the underlying processes resulting in positive transformational outcomes.
Introduction
Examination of how people manage stress has found many reports of positive outcomes as a result of experiencing traumatically stressful events (e.g., Barnard, 1994; Janoff-Bulman, 1992), indicating that individuals have actually benefited from extremely difficult, even devastating life events. Recently, there has been a change in focus of research away from documenting how those affected have learned to cope with stressful circumstances, toward examining positive outcomes as well. Certainly, parents have reported being devastated initially, on learning that their child has a disability (e.g., Scorgie, Wilgosh, & McDonald, 1996), and individuals who have experienced such traumatic injuries as spinal cord injury (SCI) have reported strong feelings of devastation (Sloan, 2000). However, one cannot assume that such events lead directly and necessarily to solely negative outcomes. Aldwin (1994) proposed that stressful life events require new ways of thinking and acting; "rather than simply a homeostatic function, the more important role of coping may be transformation" (p. 270). Aldwin called for additional research on how transformations occur as a direct result of stressful events.
Many parents have reported (e.g., Green, 2002) positive experiences as a result of parenting a child with a disability. Researchers are also beginning to more formally document such positive changes, a departure from the earlier tendency to focus on stress and stress management. To illustrate, Scorgie et al. (1996) reported parent experiences of profound personal, relational, and perspectival changes, directly attributed by the parents to parenting a child with disabilities. These findings have been consistent in the Scorgie et al. research data over the past eight years and with over 200 families in Canada, the US, and Italy, regardless of the age or disability of the child (e.g., Wilgosh, Nota, Scorgie, & Soresi, 2004)
Similarly, caregivers have reported that working with individuals with disabilities has resulted in profound personal transformations. L'Arche, a worldwide network of communities of people with developmental disabilities living with others, is based on a relationship between people with disabilities and their assistants, nurturing and celebrating each individual's unique characteristics and gifts. "Leaders of the L'Arche communities often talk about transformation as something that happens in equal measure to members with and without disabilities" (Biersdorff, 2002, p. 7).
Paterson, Thorne, Crawford, and Tarko (1999) found, for individuals with Type I diabetes, that positive transformational outcomes, including an enhanced sense of self and personal mastery, were related to individuals' positive outcomes. Such positive transformational outcomes have also been reported of persons with HIV, who identified a heightened sensitivity to life and desire to be of service to others (Courtenay, Merriam, & Reeves, 2000); and women with breast cancer, who demonstrated increased measures of self-esteem and well-being compared to control group women (Carpenter, Brockopp, & Andrykowski, 1999). Taylor (2000) reported life-changing statements from women with breast cancer, to the effect that they had become better persons or gained in wisdom from the breast cancer experience.
Transformational outcomes of people with SCI have been addressed in the literature, with transformation characterized as a dynamic, cyclical process that changes over time and is never over (Hansen, Buckelew, Hewett, & O'Neal, 1993; Sloan, 2000; Winneman, Durand, & McCulloch, 1994). This life-long process is mediated by the personality, coping skills, and resources the person possessed before the accident (Bracken, Shepard, & Webb, 1981; Briere, 1996; Jubala & Brenes,1988; McCann & Pearlman, 1990; Winneman et al., 1994; Young, Burns, Bowen, & McCutchen, 1982). The pre-morbid personality is involved in a balancing act, negotiating the new reality that the person is facing with the loss of what was. Briere (1996) characterizes this ongoing process as a struggle run by the subconscious to maintain equilibrium and the status quo as it attempts to balance the use of avoidance with changes that are fueled by intrusive events. Elliott, Witty, Herrick, and Hoffman (1991) call this process a negotiated reality between self-protection and self-enhancement. Protection is in the form of avoidance and denial while enhancement is in the form of hope. This process of negotiating a new reality and re-defining and reinventing a new self is dependent upon the person's pre-morbid coping skills, resources, and capacity to handle stress (Briere, 1996; Winneman, 1994). These resources and coping skills are developed from childhood in normal parent-child attachment experience (Alexander, Sipski, & Findley, 1992). The development of these coping skills is a process that allows a child to gradually learn to cope with surmountable challenges from a position of external security (Bowlby, 1982). From this research, it appears that a person's pre-morbid personality is a critical factor in positive transformational outcomes among people who have experienced SCI.
Based on the growing evidence, from research and personal reports, of positive transformational outcomes for parents and others who have provided care for someone with a disability, as well as the growing evidence of positive transformational outcomes reported by individuals with disabilities, it is reasonable to explore the nature of the transformational outcomes reported by men who have experienced the trauma of spinal cord injury (SCI) (Sloan, 2000), and to assess the extent to which such reports fit with the types of transformational life changes reported by parents and caregivers, i.e., personal (changes in who I am), relational (changes in how I relate to others), and perspectival (changes in how I view life) (Scorgie et al., 1996). Therefore, the purpose of this retrospective study was to examine the personal reports of men who had experienced spinal cord injuries, for indications of positive personal, relational, and perspectival transformational outcomes.
Method
Participants: five men with SCI had been previously interviewed by the senior author (Sloan, 2000, who acted as a participant observer), with the purpose of creating a grounded theory to understand the personal outcomes from experiencing the trauma of a spinal cord injury. Participants, ranging in age from 31 to 45 years, had between 11 and 19 years of experience with their SCI.
Procedure: For the original dissertation study, two, and in some cases three, interviews were conducted with each participant. Each interview was audio-taped and transcribed verbatim, then themes and dimensions were identified and used to build a model explaining the dynamics involved in the long-term adjustment to SCI (see Sloan, 2000). The present, retrospective study involved re-examining quotations selected to illustrate components of the model from the dissertation analysis, with a focus on any reporting of personal, relational, and perspectival transformational outcomes by the participants. The second author examined the participants' quotations which had been previously selected, for any reporting of transformational outcomes (i.e., profound personal, relational, and perspectival changes), taking a different focus from that of the initial analysis; thus, any transformational findings must be viewed as preliminary, since examination of transformational outcomes had not been the specific intent or focus of the original study (Sloan, 2000).
Results and Discussion
All quotations included in the final dissertation document (Sloan, 2000) were read by the second author to determine whether participants had reported personal (changes in who I am), relational (changes in how I relate to others), and perspectival (changes in how I view life) transformational outcomes after the experience of SCI. No attempt was made to quantify incidences of such reports, but only to identify and illustrate the existence of such incidental transformational outcome reports by participants in the original study.
Personal Transformational Outcomes:
To provide a context for examining the quotations of the participants with SCI (Sloan, 2000) for reported personal transformational outcomes, parent perspectives were re-examined (Scorgie et al., 1996). Parents had reported taking on new roles (e.g., advocate) that led to beneficial changes in their lives, but that they had to be willing to change and focus on possibilities in the midst of negative aspects of their circumstances. Overcoming difficulties was the impetus for positive personal changes for the parents of children with disabilities.
Many comments of participants with SCI covered having to deal with profound personal changes (i.e., changes in who I am). These were necessitated by the "world collapse" (Sloan, 2000) at the moment of injury. Some participant statements describing "world collapse" are these: "It is pure hell to wake up in the hospital and find out that your life, as you knew it, no longer exists. It is difficult to face what has happened and hard to see what lies ahead" (p. 174). "... I was having a hard time accepting, first of all me. To get out of the hospital and survive I had to accept the chair. Then I had to accept her not being there..." (p. 181).
Personal transformational statements have been chosen from interview comments of all of the participants, to demonstrate the extent to which these personal transformational outcomes were experienced, as well as the range of personal transformational outcomes described.
"I would walk into a restaurant and everybody would shuffle their chairs and two or three guys would stare at me and I found that startling. I had no understanding why and now I have come to a lot more realization and a lot more acceptance and so now it sort of becomes part of my new self-perception" (p. 183). The participant, JC, continued, "My self perception did not change the moment I broke my neck and it took many years to mould a new self perception and I think that is how denial can be helpful until you are ready to accept this new JC you hold onto the old JC. If you are asking me what my perception is of how I am different part of what complicates that is that it is still changing eleven years after my injury" (p. 188). JC concluded on this perspective, "I am very happy with who I am now and so on, but it took a long time to come to the new self-perception" (p. 195).
LN stated his belief in the importance of "pre-morbid" personality traits, "Those types of personality traits don't change just because you have an accident. Who you are before your accident is basically who you are after your accident, If you felt the world owed you a living before an injury you are going to think the world owes you after an injury... " (p. 191). This was supported by TB's comments, "You see what is coming out now is always inside of me, but it was the conditions and the accident and stuff and the circumstances of what happened that made me bring this side of me out... it was always there but you never used it because you never had to. The need to survive accelerates it quickly. Now you have to use it to survive, before everything fell into place" (p. 192).
Consistent with parents' comments (Scorgie et al., 1996), overcoming difficulties was an impetus for change for participants. For example, BA stated, "Necessity is the mother of invention because I can't always rely on other people. If a problem comes I can figure a way to make it work tomorrow" (p. 202).
One aspect that became clear in reading the participants' discussions about their personal understanding of "who I am" and personal transformations ("changes in who I am"), is that the personal changes were not direct or necessarily continuous. As GG said, talking about the impact of an infection or other serious difficulty, "One works hard, you build up your strength, you build up your confidence, you build up your awareness, only to be struck down by some infection or a breakdown. You end up spending a month ... in a hospital bed and everything goes to pot. You are back to scratch. You have to rebuild again" (p. 180). Sloan (2000) stated this very clearly, referring to his personal insight on "a fateful April afternoon in 1998" (p. 213), "Now I understood that long-term adjustment to SCI was a dynamic, on-going, cyclical journey and not a final destination" (p. 203). Parents have also told us (e.g., Scorgie et al., 1996) that managing life when a child has a disability also is not a continuous growth experience, but has its setbacks and hurdles, yet, out of the experience of managing day-to-day, they have experienced personal transformations.
Furthermore, JC's comments about enduring personality traits bears further consideration, suggesting that who the person was before the injury will directly determine who the person is after the accident. This is an area that needs more research consideration, suggesting that for parents and caregivers, as well as individuals who have sustained a disability, more attention needs to be given to the individual's personality and ways of managing life before disability as a determiner of how that individual will manage after disability. It is clear from the participants' comments that the adjustment to SCI is a lengthy, on-going, dynamic, and cyclical process, and that it calls upon an individual's inner strengths and resources. This has significant implications for the rehabilitation process, as will be discussed later in the paper.
Relational Transformational Outcomes:
Scorgie et al. (1996) had noted that many parents of children with disabilities reported that the ways in which they related to other people had changed. For example, some reported stronger marriages, or a new appreciation of other family members, or expanded friendship networks. So too, the participants with SCI reported changes in how they related to others.
LN described how he has had to make very practical decisions involving his need for assistance from others: "To get me up in the morning is too long a process to dress, shower, all that kind of stuff, I can't do it, it would take me all day... I need the rest of the day to do my job, to do the other things which are reasonable independence. I look at how much I can do realistically without burdening others and how much I can let others do so I can function" (p. 187). He stated, further, "I need to become more responsive to other people. I need to understand other people better... My accident taught me, forced me actually, in showing me I needed other people... So the accident has taught me a lot in the aspect of how to deal with people, how to talk with people, how to appreciate people, to actually sit down and listen and to hear what people have to say and to care about what people have to say was something I never did before" (p. 202).
JC also noted a change in his interpersonal perspective, "And just be more aware of human interactions... Before (injury) I was more self-contained and would do what I did" (p. 205). He commented on how interpersonal relationships have strengthened his relationship with his wife. "My wife and I have very important interpersonal relationships with people other than each other and it sets up kind of a framework for both of us. Our social activities went beyond each other. We are like two people in this big framework... and it is almost like our marriage has been held together with relationships with others..." (JC, p. 208).
As an earlier quotation from a participant had indicated, relationships may not survive an injury that leads to "world collapse." BA made the following statement about sustaining interpersonal relationships. "Relationships are much more complicated when you are disabled. Relationships, because everybody who has a disability is a little different and that has a profound effect on relationships... I would rather live alone and be moderately happy than live with someone and feel inadequate" (p. 209).
Thus, while there were comments indicating greater recognition and valuing of interpersonal relationships, there was also some suggestion that the complexity of establishing and sustaining relationships may be too difficult for some individuals, an area that bears further exploration. Implications for rehabilitation are clear from the participants' comments. A counselling focus must be on relationship building, developing an awareness of the need to recognize how much interpersonal support is necessary to allow the individual to function, building skills in relating to others in positive ways, recognizing that relationships may become more complicated in the face of an acquired disability, such as SCI.
Perspectival Transformational Outcomes:
In the Scorgie et al. research (e.g., 1996), many parents recounted ways in which parenting a child with a disability had changed their perspective on life, for example, learning to value each day, to celebrate life, acquiring a more authentic conceptualizing of success, and restructuring the priorities in their lives. Similar comments were evident from the participants with SCI.
GG commented, "I think an injury can cause a certain trait to become more pronounced if it is something that the individual has control of because what happens with... especially a traumatic injury, is all of a sudden you feel you have no control. So if there is an area of your life that you think you can still control, whether it's your religion, or it's your personality, your attitude, whatever, if you feel you can still control, you sometimes have a tendency to draw into it more. So it becomes more pronounced than it was" (p. 239). This affirms the great importance of having some control over some aspect of one's life under difficult circumstances.
LN recognized the importance of personal choice and responsibility. "I can consciously remember lying in the hospital a couple of weeks after my injury... and thinking the world owes me and I thought about it for another second and thought, 'If I died right now the world wouldn't care. If I want to make something of my life I have to choose to do so at this point and time cause the world doesn't owe me anything'" (p. 193). A belief in God was a sustaining force for LN; "I know that God loves me the way I am. Therefore I can love me the way I am" (p. 203). Furthermore, " Through this all, even though you believe in God you also believe that LN is going to be okay, that I was going to take care of business and that I wasn't going to let this defeat me" (p. 202).
Another way in which GG was able to manage his new challenges, was by re-framing his life as an adventure (Sloan, 2000). "At that time my feelings were whatever was done, or whatever one did, it was an adventure and the only way one could lose at this point was not doing anything. It didn't matter whether you win or lose in an adventure, whether you did something and you would end up being hurt. The fact that you did something meant that you were progressing. That was my attitude at the time and it probably still is" (p. 295). He suggested that there are different ways of being, brought out by the challenge of disability, "You need imagination, will and desire and you can accomplish more than you or ABPs (able bodied persons) around you would suspect... Don't buy into the psychosocial stigma of inferiority and inability to do some things. It's simply a different way of being" (p. 200).
Sloan (2000) commented that BA's view of his "journey" of learning to adjust was in the use of a sports metaphor for adjustment. "I knew when I hurt myself... I was disabled... once I realized it is like a game, once you realize the rules you can organize yourself to do really well at the game... I slowly evolved; it didn't happen until I became disabled" (p. 195).
LN offered this insight, "I think that coming to terms with who you are as an individual is probably the greatest area that one needs to overcome and that if you had it before you'll continue on. If you didn't have it then it's going to be harder because of all the built-in preconceived, unrealistic expectations of the world that everyone else has thrown at you..." (p. 193). Furthermore, "I've always believed that I will do what I need in order to function and live independently and as full a life as I can regardless of what other people think" (LN, p. 200).
JC provided clear insight into positive re-framing of one's beliefs in oneself. "Just start saying it out loud. 'I am a good guy, I am capable of doing a lot of things and I am doing a lot of things and I am going to succeed... ' And you know what? Pretty soon it becomes part of your deep inner thoughts" (p. 203). He continued, "My life has changed a great deal because of my injury. In many ways I feel it is to the positive. You learn to compromise your standards to a certain extent. It was frustrating to begin with... " (p. 204).
A belief in one's self as being loved by God and as worthy, a positive re-framing of life after a "world collapse," are identified as important aspects of positive perspectival transformations for these participants with SCI.
Implications for rehabilitation include recognition of the importance of allowing the individual to have as much personal control over his/her life circumstances as possible, allowing for personal choice and responsibility. Positive re-framing and development of a positive attitude and self-awareness, i.e., "coming to terms with who you are as an individual," are essential to positive transformational outcomes.
Implications and Conclusions
It can be said that there are some similarities between the personal, perspectival, and relational transformations reported by the participants with SCI and the parents of children with disabilities, in managing life effectively under stressful life circumstances. However, it is important not to draw hasty or definitive conclusions because of the apparent similarities in the parent and participant reports. It must also be pointed out that people with disabilities and the parents of people with disabilities are not a homogeneous group and that each transformational experience occurs within a different contextual environment thus making it difficult to generalize results. Further research is warranted, to explore a number of issues which emerged from this retrospective analysis of the Sloan (2000) findings. For example, the role of pre-injury personality traits (e.g., Alexander et al., (1993); Bowlby, (1982); Bracken et al., 1981; Briere, (1996); Jubala & Brenes,1988; McCann & Pearlman, 1990; Winneman et al., 1994, Young et al., 1982) warrants further consideration in terms of reported personal transformations, the issue of relationships and finding a balance between independence/dependence and caring for others, and the importance of having control as an important component of perspectival, relational and personal transformations warrant further exploration, both for individuals with SCI or other life-changing disabilities, as well as for parents of children with disabilities.
This very preliminary study of transformational outcomes for individuals with SCI has raised a number of important considerations for the rehabilitation process and development of positive personal (who I am), relational (how I relate to others), and perspectival (how I view life) transformational outcomes. Adjustment to SCI is a lengthy, on-going, dynamic and cyclical process that requires a person to use all of their inner resources and strengths to overcome the disequilibrium created in their life by a SCI. Counselling is important in this process by helping individuals with SCI identify and develop their coping skills and by assisting them in reestablishing and maintaining homeostasis.
Positive transformational outcomes occur through the struggle to rebalance and regain one's equilibrium in a process that Green, Pratt, & Grigsby (1984) described as growth through adversity. In order to make successful adaptations and accommodations to new barriers and situations individuals with spinal cord injuries must expand their existing coping capabilities and personal resources or learn and adopt new attributes or coping skills. This process is initiated, in the case of a SCI, by a severe trauma that creates a tremendous disequilibrium (Sloan 2000), which forces individuals to cognitively redefine themselves and expand their consciousness (Neuman, 1985; Wilber, 1986).
Rehabilitation counsellors must realize that adjustment and adaptation to a SCI is never over. There are no quick fixes and no clear path to positive long-term adjustment or transformational outcomes. Initially basic necessities such as housing, homecare, medications, equipment, transportation, and funding need to be addressed. However, in rehabilitation counseling, often there is so much focus on these basic instrumental needs that other important issues are overlooked.
The research participants quoted in this paper have clearly articulated the importance of other key dimensions of rehabilitation counselling for a person with SCI. These include a focus on sustaining and developing relationships, and a recognition of the importance of accepting the interpersonal support that is necessary to allow the individual to function in the community. Second, a focus to assist them to maintain personal control over their environment and life's circumstances, as far as possible, by assuming personal responsibility and making proper decisions. Finally, a focus on personal choice and responsibility, positive re-framing and development of a positive self-awareness and attitude, are also necessary components that contribute towards a positive transformational outcome for a person with a SCI.
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Contact for correspondence
Clark Sloan, University of Calgary, Calgary, Alberta
Email: Clark Sloan
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