Disability and spirituality: a reciprocal relationship with implications for the rehabilitation process. (Disability and Spirituality).

During the past decade, the role of spirituality in the lives of individuals with disabilities has received increasing recognition in the field of rehabilitation (Byrd, 1997; Fitzgerald, 1997; Underwood-Gordon, Peters, Bijur, & Fuhrer, 1997), nursing (Fulton & Moore, 1995), and occupational therapy (Engquist, Short-Defraff, Gliner, & Oltjenbruns, 1997; Kirsh, 1996). Spirituality issues have been included in mental health research (Ellison, 1991) and in research involving older adults (Bearon & Koenig, 1990) and African Americans (Levin, Chatters, & Taylor, 1995). Studies have also examined the role of spirituality for patients with AIDS (Kendall, 1994) and breast cancer (Johnson & Spilka, 1991) as well as for family caregivers of children with chronic diseases (Fulton & Moore, 1995). Increased attention placed on spiritual issues has emerged in response to a growing awareness that "spirituality may be an underused resource in the rehabilitation process" (Underwood-Gordon et al., 1997, p. 255). Also recognized is a need, in the general area of disability literature, for a conception of self not based on the traditional medical view, but upon a broader, more holistic view that encompasses self, spirit, and society (Byrd, 1997; Fitzgerald, 1997).

Although recent commentaries, studies, and conferences focusing on spiritual issues have been generated, much more systematic research is needed to begin to understand the potential of spirituality in the rehabilitation process (Underwood-Gordon et al., 1997). In a brief summary of a 1995 conference entitled, "The Role of Spirituality and Religiousness in Rehabilitation and the Lives of Persons with Disabilities", Underwood-Gordon et al., (1997) offered several research-related recommendations concerning the role of spirituality and religiousness in the rehabilitation process and in the lives of people with disabilities. These recommendations included examination of related topics that ranged from describing the "natural courses of development of spirituality and religiousness "of people with disabilities to evaluating community attitudes for "incorporating persons with disabilities in formal worship" (p. 257). Research methods recommended for initial investigations of these related topics were small-scale qualitative methods incorporating data collection techniques such as focus groups and unstructured interviews. These authors stressed that the results of these beginning studies can be used to guide further research.

Underwood-Gordon et al., (1997) also distinguished between the meanings of spirituality and religiousness. This pervasive discernment was reflected in the writings of other authors in the fields of rehabilitation, occupational therapy and nursing (Egan & DeLaat, 1994; Engquist, Short-DeGraff, Gliner, & Oltjenbruns, 1996; Fitzgerald, 1997) as well as in the field of religion (Thomas, 2000). Although related, these terms are not considered synonymous by most authors. Religiousness is associated with systems of worship, each system having a dogma that is shared with a group (Underwood-Gordon et al., 1997). Spirituality, on the other hand, is considered a broader term (King, Speck, & Thomas, 1994), not associated with a specific religion, but refers to an individual's overall beliefs about the meaning and purpose of life (Fulton & Moore, 1995; Kirsh, 1996). Thomas (2000) stated that the difference between the terms is a contemporary distinction that includes the assumption that "whereas religion deals with the outer life, that is, institutions, traditions, practices, doctrines, and moral codes, spirituality treats the inner life, which thus tends to be individualized" (Thomas, 2000, p. 43). Howard and Howard (1996) stressed that spirituality refers to the "subjective perception and experience of something or someone greater than him/herself" (p. 181). This subjective or individualized perception includes perception about the essential nature of the world. Peck (1979) proposed that although people may perceive themselves as lacking in religion, everyone has explicit or implicit beliefs concerning how the world works. Whether people envision a chaotic world void of a higher being in which events happen randomly, or a nurturing world guided by a higher power in which positive forces triumph, they develop a view of the world that colors their interpretation of life events. In this respect, a person with or without religious beliefs may feel strongly spiritual. Fitzgerald (1997) elaborated further that religions may be considered social institutions created by society to pursue spiritual questions and that religions can serve as paths leading to learning and fulfillment or paths leading to "forms of oppression that limit the spiritual expression of people with disabilities" (p. 407).

While spirituality has been increasingly recognized as potentially significant in the lives of people with disabilities, it is also recognized as an underexplored area in scientific research (Chang, Noonan, & Tennstedt, 1998). Virtually absent from the literature are the voices of women with disabilities concerning the role of spirituality in their lives. The following study was designed to explore the nature of spirituality as perceived by women with disabilities and to describe the "natural course" of development of spirituality in their lives. For the purposes of this study, spirituality was broadly defined as a person's perception about the essential nature of the world. Individual interviews were conducted with women with severe physical disabilities to explore their view of the nature of spirituality and to describe how disability and spirituality interfaced and developed in the course of their lives.

Method

Design and Procedure

The study was conducted using qualitative methods implemented by an interdisciplinary team of four researchers representing areas of expertise that included exercise and sport science, health education and promotion, recreation and leisure, and english. As a part of a larger study involving adults living with disability, six women were recruited for participation in the study through purposive sampling. Face-to-face, individual, in-depth interviews were conducted by one the researchers who has a physical disability. The interviewer also served as an interviewee at the onset of the study prior to data collection. All interviews were audiotaped with the consent of the participants and transcribed verbatim. Each participant received a copy of her transcribed interview and verified the accuracy of her transcript before data analysis.

Participants

Participants ranged in age from 35 to 55 years. The women, five of whom were Caucasian and one of whom was African American, lived with severe disability that included spastic cerebral palsy, quadriplegia, paraplegia, post polio syndrome and congenital glaucoma. Each participant experienced an evolution of religious affiliation that derived from an upbringing involving Jewish, Catholic, Episcopalian, and Baptist religions and no religious affiliation.

Data Analysis

The analysis of data involved the application of the Consensual Qualitative Research Model (Hill et al., 1997). The process of consensual qualitative research is based on the assumption that multiple perspectives are more likely to be free of bias (Marshall & Rossman, 1989). The process values collaboration among researchers "to construct a shared understanding of the phenomenon" (Hill et al., 1997, p. 522). The consensual process of analysis initially involved three of the researchers, referred to as the primary team, independently reviewing the data. These three researchers proceeded to participate in discussions that included reaching consensus concerning domain development, coding, and the construction of core ideas. The fourth researcher served as auditor, a role that entailed checking and challenging the work of the primary team. In response to the auditor's review and challenge of the domains and core ideas, the primary team undertook revision and subsequent development of categories to describe consistencies and inconsistencies across cases.

All four members of the research team held the basic philosophical premise that disability research should be a collaborative endeavor in which persons with disability play an integral part. One of the researchers who has a physical disability conducted face-to-face, individual, in depth interviews with the six participants. Serving as interviewer, this individual facilitated rapport building and enhanced the possibility of creating a climate in which participants living with disability could comfortably and openly explore the issues associated with the focus of the study (Moustakas, 1994). All interviews were audio taped with the consent of the participants and transcribed verbatim. Each participant received a copy of her transcribed interview and verified the accuracy of her transcript before data analysis was undertaken.

The team member serving as the interviewer, also served as the data analysis auditor. Serving in both these capacities, this researcher allowed the team as a whole to address two aspects of the methodology that have been previously identified as potential problems. One concern voiced by researchers and practitioners in the area of disability is that non-disabled persons hold socio-historical perceptions of people with disability that set them apart and marginalize them (Asch, 1998; Fitzgerald, 1997). This view has been characterized as a perception of the disabled as "other than the rest of humanity" (Fitzgerald, 1997, p. 408). In addition, disability scholars have noted that non-disabled researchers of disability are potentially vulnerable to issues that arise from personal anxiety about becoming disabled (Fine, 1994; Fitzgerald, 1997). The full participation of a researcher with a disability as both interviewer and auditor thus served as an important means of addressing not only the rapport established with study participants during the interview process, but also the possible unrecognized biases held by the other members of the research team during the analysis process.

Results

One of the central findings was that spirituality and disability were intricately related. Despite individual differences such as age of onset of disability, type of disability, or religious affiliation, the women consistently described disability and spirituality as core dimensions of their lives that were emergent, interactive, and interdependent. The women voiced insights concerning the complex nature of the disability-spirituality interaction and articulated perspectives about the effects of the interaction in their lives.

Essential Nature of the Spirituality-Disability Interaction

The women characterized the interaction of disability and spirituality as reciprocal. This reciprocal interaction often resulted in adjustments of their views of themselves, the world, and their disability. They described the interaction as reciprocal in the sense that the experience of disability shaped the development and expression of their spirituality; conversely, their spiritual beliefs shaped their perceptions of their disability. The reciprocal interaction between disability and spirituality involved an on-going process within which a personally unique but recurring pattern of events emerged that led to revisions of their beliefs. This recurring pattern tended to begin with a series of significant events or encounters pertaining to disability, to religious issues, or to both. The events or encounters were typically followed by a period of questioning or openness to alternative understandings and culminated in changes or refinements in their perceptions of the world, themselves, and their disability. The magnitude of the revisions or refinements they made in their perceptions varied throughout their lives. They described many changes as subtle and evolving gradually over an extended period of time, while others were dramatic, sudden, and manifested as major insights or turning points in their lives.

Disability as a Frame of Reference for Spirituality

The women portrayed disability as a powerful and inevitable influence on their spirituality. As with other major life experiences, their experience of disability offered a frame of reference within which they interpreted the world and within which their spiritual beliefs emerged. As expressed by one participant, disability has "a great deal of impact on the way I see the world working ... It really pushes you to another level." Each of the women came to view disability as an integral part of herself that often precipitated or demanded a search for personal growth and spiritual meaning. One participant explained, "Almost everyone would say when something physical happens to your body, it takes something away from you. You have to draw from inner strength and drawing on inner strength is another word for spirituality in many ways." The participants generally perceived that their experiences of disability resulted in a stronger sense of spirituality than what otherwise might have been possible. According to one woman, for example, "I can't imagine what my spirituality would feel like otherwise, but I think 99.9% for sure I am a much more spiritual person, disabled than I would be non-disabled."

The women in this study emphasized that certain aspects of their experiences of disability intensified their need to address spiritual issues. As one participant said, "Accepting a lot of limitations which are very painful and a kind of suffering has definitely caused me to look deep into my soul (and) it feels like every day my disability causes me to dig deeper into my spirit for strength." She further explained that the ramifications of her disability included spiritual gifts in the sense that, "I needed to grow in working with my anger. And this experience of being disabled has made me face and go through, and get angry, learn how to own my own anger ... Definitely spiritual."

From the onset of their disability and continuing to the present time, these women experienced events or encounters that led to periods of questioning themselves, their worldviews, or both. For some of the women, significant childhood events related to disability and religious issues were described as catalysts for periods of questioning and further exploration of their spirituality. The following experience, recounted by a participant with severe visual impairment, exemplifies such an event:

One big thing connected to my disability that I remember clearly when I was growing up was the nuns told me that on the day of my first communion, whatever I prayed for would happen. That there was no doubt. So, of course on the day of my first communion, I prayed that I would be able to see like a normal person could see. Of course, it never happened. So, for a long time I really questioned ... I must not be doing something right. I must not be praying right.

During adulthood, many of the participants continued to experience events and encounters specifically related to religious issues. These experiences evoked questions concerning their perceptions of self as a person with disability.

There are some real interesting views on disability in the different religions. If you look at the Bible, there are references to God healing people with disabilities and so some people think that if you're a person with a disability, then you must not be saved. If you listen to some of the sermons, it's like, `those people with disabilities need help' ... I can't tell you the number of times I've had people want to heal me ... And I've come to the point in my life where I look at them and say, `That means you don't accept me for who I am.' I used to not be able to ... say it to people, but now I do. I don't need healed. I'm okay.

Experiences of disability also impacted and ultimately shaped the women's overall views of spirituality. As explained by one participant, "I think that it is partly due to the fact that I'm disabled that I'm interested in other perspectives. Because I am `an other.' And so I think my disability has drawn me to what may not appear mainstream." When discussing the incorporation of ideas from eastern philosophies into her Episcopalian beliefs, this participant noted an openness in her understanding of traditional religious writings not necessarily shared by others in her congregation or denomination. "My style is to not lay heavy emphasis on the idea that if we do these certain things, the outcome will be this way. My style is to be open-handed and open-hearted with our understandings (of the Gospels)." Another participant described how her experience of disability shaped her beliefs about a higher being and ultimately influenced her strategies for coping with disability:

My disability has brought me from the mentality of God makes things happen to the mentality that God allows things to happen. Because if I think of it as He made it (disability) happen, it does nothing but make me angry. But, if I think of it as if He allowed it to happen as a natural course of the world, then I can think, `Okay, what kind of positive things can I do with this?'

Spirituality as a Frame of Reference for Disability

In addition to articulating the powerful impact of their experiences of disability, these participants described the significant and on-going influence of spirituality. Spirituality was characterized as a fundamental frame of reference for their perceptions of disability. These participants' spiritual beliefs influenced their ability to perceive a purpose or meaning in their experience of disability. One participant explained,

   My reactions (to disability) come as a result of believing that this is
   probably just not a freak accident that I became quadriplegic. But, has
   some purpose for the worm I live in, and that I am not just here.., but
   because there's some reason, or purpose that God intended to fulfill
   through a disability.

The process of both deriving meaning from and accepting disability was described as central to the lives of these women and related to their spiritual beliefs. As one woman reflected, "I think that it (spirituality) has an awful lot to do with my acceptance, with my ability to deal with this (disability), because I can understand why I am going through it (disability), I can understand what disability is meant for." Another participant not only attributed acceptance of disability to spirituality in her own life, but also felt strongly that others with disabilities had achieved acceptance through their own spirituality: "Why are there some people with disabilities who accept the disability and some who fight the whole time and are angry and negative ? What's the difference?" She concluded that spirituality was the "spark that sets us apart."

The women in this study portrayed spirituality as a vehicle for changing their lives in significant ways. One participant described her spiritual views as providing direction to her life, a direction that moved her closer to God. After acceptance of Christ, she "began to see things differently" and this new view included acceptance of her disability. Her view is echoed in the following participant's description of a turning point in her life. "Things turned around for me. I began to really look at things from a perspective of, you know, God is there for me, God allowed this to happen, he didn't make it (the disability) happen, it's not a test. God doesn't test people that way." The women who participated in this study clearly viewed spirituality as a springboard for meaning and acceptance of disability and reflected on the positive influences of spirituality on their perceptions of themselves as persons with disabilities. One woman commented that, "I see my role as trying to do the best I can with what I am offered, to fulfill that role not always knowing what that role is, but accepting it and having some pride in the assignment and that I carry it out properly."

Discussion

The present investigation focused on exploring the relationship between disability and spirituality and on examining how it affected the lives of six women. While the results of this qualitative study cannot be generalized to the majority of women with disabilities, the findings do shed light on the relationship between disability and spirituality as perceived by the participants. These women may have placed a higher level of importance on spiritual issues than do the larger population of women with disabilities, thus highlighting spirituality in ways not common to the larger population of women with disabilities. However, studies that have examined the role of spirituality in the lives of persons with disabilities (Anderson, Anderson, & Felsenthal, 1993) indicated that it emerged as an important aspect in their lives. These women indicated that disability and spirituality were inextricably related and that spirituality played a significant role in their lives.

In describing the interaction of disability and spirituality, these women characterized the relationship as a reciprocal, ongoing process that manifested in a recurring pattern. This pattern often began with a series of events or encounters related to disability and religious issues. These events were followed by a period of questioning or openness to alternative understandings and resulted in refinements in their views of self, disability and spirituality. While the process of refining spiritual beliefs is common to most people, these women recounted stories that suggested that the experience of disability often challenged them to reach beyond the ordinary to develop and express their spiritual beliefs. Many of the challenges associated with disability that these women described intensified their need to develop beliefs about the world that both verified their experiences of disability and emphasized the value of self as a person with disability. Hence, the recurrent on-going process of refinement of spirituality was motivated not only from a recurrent need to understand the world, but also by a need to promote acceptance, personal growth, and comfort.

The recurrent pattern described by these women, was in concert with the pattern described by Kendall and Buys (1998) concerning overall adjustment after acquiring disability. Kendall and Buys's discussion concerning an integrated model of psychosocial adjustment following acquired disability provides a framework for understanding the recurrent nature of the on-going process of refining spirituality. These authors argue that psychosocial adjustment, in general, is best described as a recurrent process in which beliefs about self, others, and how the environment works are modified in a repetitive pattern as sorrow or despair re-emerge throughout life. The recurrent nature results from the fact that new beliefs, schemas, are modified incrementally as new challenges are experienced. Encountering new challenges can overwhelm a person's ability to interpret their experiences based on previous beliefs and ultimately require a period of openness to new understanding. Modifications in beliefs are guided and shaped by each person's perspective of major life themes. As presented by Kendall and Buys (1998), these themes include the search for meaning in disability and in life after disability as well as the need to protect and promote self.

Spirituality was characterized as beliefs about the world that influenced the meaning and acceptance of disability. These findings suggested that beliefs about the world can be crucial links to coping behaviors. According to the women in this study, perceptions of self, disability, and the world can positively impacted by evolving spiritual beliefs. Central aspects of spirituality for these participants included beliefs that shed light on the meaning of life and that increased acceptance of people with disabilities as whole persons.

Implications for Rehabilitation

The results of this study indicated that spirituality warrants consideration as an important facet of health and rehabilitation. Professionals in the area of rehabilitation are encouraged to recognize that women may characterize their disabilities as dynamic and inextricably interrelated with their spirituality. Spirituality may be considered an integral part of the lived experience of many women with disabilities and a basis for developing meaning and acceptance of disability in their lives.

As the rehabilitation process broadens to encompass considerations of spiritual needs, professionals may wish to review the avenues provided for clients to express these needs. Determining clients' desires and interests concerning spiritual issues is an essential step as patients enter rehabilitation and opportunities to express these needs throughout their rehabilitation process should be insured. Professionals must also demonstrate respect for a wide range of diverse beliefs as well as respect for clients' desires to not explore spiritual issues.

Recognition of clients' spirituality by rehabilitation professionals can be promoted by accessing spiritual and religious resources. Identifying pastoral care and spiritual resources can assist women with disabilities to address and express their spiritual needs. For patients who consider spirituality as an evolving set of beliefs about the world, the rehabilitation process can provide opportunities to share their stories concerning spirituality and disabilities. The process of sharing in an environment that is accepting and supportive of a wide range of views provides an avenue for self-affirmation and thus, serves as a catalyst for personal growth. Rehabilitation facilities should routinely provide opportunities to address spiritual needs along with easy access to a diverse range of literature that might be relevant to clients' needs and interests.

Future Research Recommendations

Future investigators may also wish to focus on clarification of factors related to disability that limit or hinder the development of spiritual beliefs. These topics might include examining how clients conceptualize the role of a higher being in the of disability, and/or how clients experience the process of acceptance of disabilities.

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Boni B. Boswell
Sharon Knight
Michael Hamer
East Carolina University

Jon McChesney
Eastern Kentucky University

Boni B. Boswell, Department of Exercise and Sport Science, East Carolina University, Greenville, NC 27858