Psychospiritual Aspects of Sense of Self in Women with Physical Disabilities.

When asked for the main lesson learned from our first study of women with physical disabilities (Nosek et al., 1997), we came up with the following statement, "If you truly believe you are a woman of value, you gain tremendous strength to forge your way through the most stubborn of barriers." This theme was reconfirmed in subsequent qualitative studies conducted by the Center for Research on Women with Disabilities. In statistical analyses of survey data "sense of self" has also proven to be significant, even more than severity of disability, in predicting outcomes in women's lives. For example, whether the woman had slight difficulty in walking or used a power wheelchair with a ventilator, her concept of her value was much more important than the level of her disability in predicting satisfaction with relationships and her practice of healthy behaviors. In a philosophical framework, sense of self can be interpreted as a construct with strongly spiritual dimensions and the strength that comes from it can be interpreted as having divine origins. This paper reviews findings on self-esteem, self in connection to others, and self-efficacy among women with disabilities. Expressions of spirituality have emerged in several of the studies we have conducted, and this paper also explores spirituality as a dimension of sense of self for women with physical disabilities.

Background

The concept of self is discussed extensively in the most ancient and essential philosophy of India, Vedanta. It holds that there is an unmanifest Universal force called Brahman. Catholics refer to this same force as the Holy Spirit; Quakers call it the Light. When this force becomes manifest in living beings, Vedantists call it the Atman, or Self. Once embodied, however, ego develops and awareness becomes entangled in the web of maya, the illusions of worldly existence, the play of forces on the conscious plane. At this stage it becomes the self with a small "s" and becomes unaware of the Light within. According to the Vedantic scriptures (the Vedas, Upanishads, and Bhagavad Gita) the goal of living is to become aware of the Self, the Light within, and become one with it.

Developing a sense of Self, therefore, can be seen as an essentially spiritual journey. The world's scriptures, prophets, spiritual traditions, and religious institutions offer many paths that can be followed by individuals who seek to make this journey. Developing a sense of self with a small "s", on the other hand, is a more worldly endeavor, involving sorting out the complex web of physical and psychological genetic predispositions, personality types, ego characteristics, personal histories, interpersonal relationships, and societal and cultural expectations. The intermixture of the two, understanding the self in the Self, is the underlying premise that will guide the interpretation of research findings presented later in this paper.

Sense of self in the psychology literature has been examined as a multifaceted construct, including three elements of particular interest in our studies--self-esteem, self in connection to others, and self-efficacy. Self-esteem is defined as personal self-regard (Bednar & Peterson, 1995), attitude toward one's self (Rosenberg, 1965), and the evaluation of one's self-concept as positive or negative, neutral, or ambiguous (Frey & Carlock, 1989). It is how we assess our worth and competence, in terms of how we think, feel, and act (Leary & Downs, 1995). For persons with disabilities, the discrimination and prejudice we experience conveys the message that we are devalued and unworthy, messages that may become internalized, becoming incorporated into our definitions and evaluations of ourselves (Coleman, 1986; Goffman, 1963; Jones et al., 1984). For women, who are socialized to award relationships a central role in their self-definition, this message of disrespect may be especially invalidating and damaging to their sense of self. It is not surprising, then, that lower levels of self-esteem have been reported among persons with physical disabilities compared to those without disabilities (Anderson et al., 1985; Blum, 1983; Craig et al., 1994; Earle et al., 1979; Felton et al., 1984; Magill-Evans & Restall, 1991; Skevington et al., 1987; Teplin et al., 1981; Walsh & Walsh, 1989). However, other research suggests that disability plays a minor role in self-esteem (Crigger, 1996; King et al., 1993; Magill & Hurlbut, 1986; Murch & Cohen, 1989; Ostring & Nieminen, 1982; Specht et al., 1998). A close look at the literature resolves that it is not disability per se but rather the impact of disability on the physical, emotional, social, and environmental aspects of our lives that influences our self-esteem and self-concept (Barnwell & Kavanagh, 1997; Brooks & Matson, 1982; Cornwell & Schmitt, 1990; Craig et al., 1994; Gordon et al., 1997; Walsh & Walsh, 1989).

Self in connection to others is a concept developed by feminist theorists, particularly those at the Stone Center of Wellesley College. As women, our need for social connectedness is fundamental to our development of self-esteem (Anderson & Hayes, 1996; Jordan et al., 1991), in contrast to men's need for achievement, independence, and mastery (Spence, 1985). Feminist theorists have proposed that we develop our identity from our connection with others (Belenky et al., 1986; Chodorow, 1974; Gilligan, 1982; Josselson, 1987; Miller, 1976), particularly from relationships that are built on care and concern (Gilligan, 1982; Jordan et al., 1991; Josselson, 1987; Miller, 1976). Social connections provide the foundation for autonomy, competence, and self-esteem in women (Jordan et al., 1991). Although some theorists say self-esteem is fixed in late adolescence or early adulthood, feminist theorists believe that self-esteem is shaped by the changing meaning women may attach to events throughout their lifespan (Anderson & Hayes, 1996). Another dimension of self in connection to others is how we believe others perceive us. This can influence the way we fundamentally define, describe, and experience ourselves (Kunda, 1999). In the Cooley and Mead tradition, the self is a social phenomenon and is constructed by seeing ourselves reflected in the eyes of others (Mruk, 1995). Our beliefs about attributes that we judge to be unimportant may have little impact on sense of self; however, beliefs about attributes that we consider important exert a greater influence on our sense of self (Glaus, 1999).

Although conceptually related to self-esteem and self in connection to others, self-efficacy refers to individuals' beliefs about their ability to perform behaviors which may lead to desired outcomes in specific situations (Bandura, 1989; Maddux et al., 1995; Maddux, 1995). Low self-efficacy for achieving goals affecting one's self-esteem can result in psychological distress (Bandura, 1989) and lower levels of self-esteem (Maddux et al., 1995; Maddux, 1995). Thus, self-efficacy can influence one's sense of self, depending upon the value placed on the behavior at stake (Maddux et al., 1995; Maddux, 1995). For example, if a woman values her interpersonal skills and believes that she is capable of cultivating friendships and influencing others, her self-efficacy in this area will likely contribute to positive self-esteem. Embodying the feminist perspective, Judith Jordan writes eloquently about relational self-efficacy as an important characteristic of women's self-esteem. In this paradigm, self-esteem is enhanced by individuals' beliefs that they can create meaningful connections with others and that they can "emotionally move another person" and effect positive results in the world (Jordan, 1994). A sense of profound isolation and aloneness can ensue when one believes she is unable to affect another person and when mutual connectedness is absent. Instead of the empowerment of self-efficacy and relational agency, the disempowerment of self-doubt, shame, and self-blame becomes the woman's experience, undermining and eroding her sense of self. It is little wonder that self-efficacy for social activity has predicted self-esteem in persons with disabilities (Barnwell & Kavanagh, 1997).

Although the literature has addressed to a considerable extent the psychological aspects and underpinnings of self-esteem, self in connection to others, and self-efficacy, there is scant literature on the spiritual aspects of these constructs. By examining data on expressions of sense of self and spirituality by women with disabilities from previous studies, this paper will discuss the following question: How do women with disabilities perceive their sense of self in a psychospiritual context?

Findings From Recent Research

Three sets of data collected by the Center for Research on Women with Disabilities relate to this examination of spirituality and sense of self. The first data set is from the study that launched our Center, the National Study of Women with Physical Disabilities, which began with personal interviews with 31 women who had a variety of physical disabilities, such as arthritis, neuromuscular disorders, cerebral palsy, postpolio, and spinal cord injury. Analysis of the qualitative data yielded five themes: 1) sense of self, 2) relationships, 3) barriers, including abuse, 4) sexuality information, and 5) health and sexual functioning (Nosek, 1996). The domain of sense of self included data that related to how the participant saw herself--developmental issues of self-concept, self-esteem, locus of control, and sexual identity, as well as body image and definition of sexuality. The women who displayed the greatest overall wellness appreciated their own value. Family acceptance and support were important to the development of a positive self-concept and high self-esteem. The influence of the father or other significant adult was frequently cited. Some women with early onset disability described family situations that led them to see themselves as less valued than their nondisabled siblings or peers. They were told, for example, that they should never hope for much in life, they could never be attractive to a sexual partner because of their disability, and no one would ever marry them. Many were told outright that they were a burden to the family. For some, persistent but unsuccessful efforts by medical professionals and faith healers to cure them imposed the notion that they were failures. A few in the sample had rejected these negative influences and defined their sexuality and attractiveness for themselves. Without exception, those raised by families who encouraged exploration of both personal and professional potential exhibited a more positive self-concept. Positive experiences later in life, with a significant other, friend, or therapist, were often described as counteracting the negative messages received early in life. For women with later onset disabilities, the effects of injury or illness may have challenged their socially-constructed self-concept. Women who seemed to have an internal locus of control, that is, those who believed their actions controlled their lives more than outside forces, appeared to be better able to overcome the negative messages and cope more effectively with life's challenges. Many participants cited the positive effect of spirituality on their self-concepts, whether it was through involvement in religious organizations or individual spiritual quests. According to one participant with postpolio and scoliosis:

   It sort of helps me to identify myself, thinking I am a woman created by
   God and I am so precious and I am so loved and I have so much beauty inside
   of me.

The second data set came from the second part of this major study, which was a survey questionnaire covering the themes that were identified from the interviews, including sexuality, relationships, sense of self, health, and developmental experiences. We received responses from 881 community-residing women, 475 with a variety of mild to severe physical disabilities, and 406 without disabilities. A major finding of the study was that high and resilient self-esteem was associated with successful community living outcomes for women with physical disabilities. Mean levels of self-esteem were about the same for all women as long as they were working, had satisfying personal relationships, and had not experienced abuse. However, the effect of not working, having unsatisfactory relationships, and experiencing emotional, physical, or sexual abuse, was more strongly associated with lowered self-esteem for women with disabilities than for women without disabilities (Nosek et al., 1997). We conducted another statistical analysis of data on sense of self from this study, hypothesizing that self-esteem, perceptions of how others see you, and social isolation mediate the relation of contextual variables to outcomes (Nosek et al., 2000). As contextual variables, we looked at age, education, severity of disability, and childhood experiences, including overprotection, familial affection, and school environment. One of the outcomes we were interested in was satisfaction with intimate relationships. The context within which the women with disabilities lived was significantly different from the context within which the women without disabilities lived. Women with disabilities had significantly less education, more overprotection during childhood, poorer quality of intimate relationships, and lower rates of salaried employment. When we examined the sense of self variables, we found that the women with disabilities had significantly lower perceptions of how others see them, lower self-esteem, and greater social isolation than the women without disabilities. Respondents who were older, less disabled, less educated, less over-protected, and had more affection shown in the home in childhood tended to feel that others saw them more positively. Women with positive school environments, less over-protection, and more affection in the home experienced less social isolation. Age, education, and disability severity were not significantly related to social isolation. Older respondents with less disability, a more positive school environment, less over-protection, and more affection in the home tended to have better self-esteem; education was not significantly related to self-esteem. Further analysis showed that each of these sense of self variables was significantly related to satisfaction with intimate relationships, with more positive perceptions of how others see you, higher self-esteem, and lower social isolation being associated with greater satisfaction with intimate relationships.

The third set of data came from our study of health promotion among women with physical disabilities. This study also began with a qualitative approach in an attempt to answer the question, "What are the psychological, physical, social, and environmental factors that contribute to health promoting behaviors of women with physical disabilities?" Data were collected from a focus group of nine women with a variety of physical disabilities and individual interviews with nine additional women for whom the severity of their disability and/or transportation barriers limited their ability to attend the focus group. Within the domain of psychological factors, spirituality emerged in several different ways, often in connection with social factors. First, some participants acknowledged ascribing to religious practices but were preoccupied with daily needs. One woman with advanced limb girdle muscular dystrophy had a strong Catholic upbringing and kept religious symbols around her apartment, but claimed, "My main concern is not what is gonna happen after I die. My main concern is how I am gonna get on the pot [toilet], right now, not tomorrow." A second theme was the healing power of prayer. When asked about what practices kept her healthy, one participant with advanced spinal muscular atrophy mentioned having a strong belief system and praying daily, along with keeping a positive mental state, spending time with friends, maintaining a good diet, and exercising to the extent she could. Another participant with a Pentecostal background used prayer in hopes of a cure for her lupus. Her family and friends held a prayer vigil for her once when she was in a mental crisis. She believed that God would heal her if she had enough faith. A third theme was using faith to cope with stress. A participant who used a wheelchair and was also blind said in reference to faith, "To have gone through what I have been through, you have to have some." A fourth theme was looking to God for protection. A participant who had tetraplegia and was also undergoing chemotherapy for breast cancer brought many themes together by saying:

   I haven't gone into low self-esteem mode yet. I'm not going there, because
   of several reasons. The first, and most importantly, is that God's carrying
   me in those great big strong arms of His, and He's keeping me up there
   where I belong. So I'm not going into "oh gee, why me God?" I know why. It
   happens. Second part is I have a very strong family when it comes to
   support. And we are survivors of all kinds of things. So I don't have
   depression for things like that.

A Personal Account

I (the first author) published previously an account of my definition of myself in light of my spiritual beliefs (Nosek, 1995). As a woman with a severe physical disability who was raised in a strict Roman Catholic tradition but alienated by the bureaucracy of that tradition during adolescence, my search for a spiritual home was relatively painless compared to other aspiring hippies in the 1960's. I had the good fortune to be introduced to Vedanta during my college years, and met a spiritual master from India who has guided my life ever since.

In my article, "The Defining Light of Vedanta" (Nosek, 1995), I discussed the undeniable yet sadly ignored unity between spirituality and rehabilitation. Both are journeys of discovery. Both are paths toward defining who you are, how you relate to your universe, and where you are headed. This process of definition is punctuated by points of change, a convergence of readiness for a new awareness and an event that provides the momentum. For many people, disability is one such point of change. For me, it is a lifelong context. Through the universal teachings of Vedanta I came to understand my place in the world as a woman with a disability. I explained the role my spirituality has played in defining myself as 1) a seeker of God, 2) a person with a disability, 3) an independent person, 4) a person who is employed, and 5) a woman. This is also a chronological listing of my discovery of sense of self, with spiritual awareness coming long before any experience of being a fully functioning member of society, and with awareness of the richness of womanhood coming last. In my personal experiences with rehabilitation systems and in my training as a rehabilitation counselor and researcher, the role of spirituality in living with disability was never mentioned. Research on spirituality and disability is hindered by the difficulty of quantification and the lack of a common vocabulary. In clinical settings, there is a need for appropriate, positive interventions by spiritual counselors. It is likely that spirituality serves as a strong motivator in all the domains of rehabilitation, including physical, vocational, psychological, and social. I declared the need for a new definition of rehabilitation in terms of self-definition in a spiritual context.

Since publication of that article, a new chapter in my life has unfolded that carries many lessons about self in connection to others. The burdens of an overactive career and deteriorating health prompted me to slow the pace of life a bit and explore new avenues for social connections. It occurred to me that there must be a reason why I was born into a Christian tradition, and that perhaps my path now was to search for the common ground between Vedanta and the teachings of Christ. I wanted to find a spiritual community that would accept me for my intrinsic value and not for the value of my achievements. The time finally arrived for me to accept the long standing invitation of a friend to attend a Quaker meeting. The Houston meeting is from the liberal branch of Quakerism and is non-programmed, meaning there is no minister (all members are considered ministers), no singing, no religious symbols, and worship is in silence unless someone is moved by the spirit to speak. My first cautious steps into this style of worship were met with an overwhelming sense of community. The silence was liberating, and the education in the Quaker testimonies of honesty, simplicity, peace, and service, made me feel as if I had found a new Vedantic home. It was astonishing to see 40 adult Americans sitting quietly for a full hour in silent communion! For the first few meetings, I gave only my name and spoke very little during the social hour. It didn't take long to become absorbed into the fabric of service projects and congregational activities, all designed to make each participant feel valued and a sacred part of the whole. After nearly a year and a half of attending, I was finally moved by the spirit to speak during worship; it was Palm Sunday and I finally understood that the value of suffering is your ability to transcend it as Christ and Shri Ramakrishna both did. My disability is almost irrelevant in this context. The meeting had already taken extraordinary efforts to make their facilities accessible, and offers of help when needed flow freely. I enjoy being silent, but as one person told me after worship one day, my mere presence is my testimony. My involvement with the Quakers has opened a new channel in my identity that has burst through the feelings of disconnection and isolation that I have struggled with all my life as a single, career oriented, disabled woman. I can now add a sixth defining characteristic--I am part of a community of worshipers.

Discussion and Reflections

From the apparent miscellany of data just presented and the complex intermixture of psychological, physical, social, and environmental factors that are evident in our analyses and personal stories, we can extract some insights into the psychospiritual aspects of sense of self perceived by women with physical disabilities. Our data show that women with physical disabilities in general report significantly lower levels of self-esteem and perceptions of how others see them compared to women without disabilities. Many face serious social isolation, lack of employment opportunities, and dissatisfaction with their relationships that also puts them at a distinct disadvantage for quality of life experiences compared to women in general. We hypothesize that the sense of self in connection to others is a fundamental determinant of self-esteem, and that self-efficacy, when perceived as a power drawn from a divine source, is an important mechanism used to transcend the challenges to both that often accompany disability.

Self-esteem for women with disabilities is whittled down by an unending barrage of assaults from the environment. Findings from our studies show the damaging effect of negative messages from parents and siblings, school friends and teachers, and medical professionals, that manifest as overprotection and exclusion from mainstream activities, resulting in a devalued sense of self. This can produce feelings of being a burden, being ugly, being damaged goods, being unworthy of attention to meet special needs. Along with these feelings can come the belief that one is out of God's grace or not created in the image of God. Most damaging is when families and religious figures instill the belief that disability is a punishment from God for sins in this life or previous lives. Our findings also show that the opposite circumstances, being given positive messages by family, friends, teachers, and others, leading to the development of strong, mutual, loving and supportive relationships, and being held to the same expectations for achievement and participation in society as others, can create a feeling of value and a belief that one is held in the arms of God and is a receiver of grace.

Self in connection to others can be a tremendous source of strength for women with disabilities. Being able to find and maintain satisfying intimate relationships, achieving career goals that show one's worth in relation to others, and being able to contribute to family and society all serve to enhance self-esteem. The risk of social isolation for women with disabilities, however, is very high, resulting from parental overprotection, inaccessible environments, lack of assistive devices for mobility, barriers to employment, and lack of opportunity to develop social interaction skills. Expectations communicated by family early in life and efforts to integrate school and recreational activities play an important role in setting the stage for a life of participation versus a life of isolation.

When self in connection to others is perceived as a woman's understanding of her place in the universe, it can be viewed as one expression of a concept in Vedanta called "dharma." Dharma is often translated as duty, but carries a deeper meaning of mission in life, those predispositions, such as genes and, some would say, past life experiences, that equip you for the path you follow in this life. Some believe it to be the path that is assigned to you in the divine order of things, and that persons whose lives are dominated by discontent have not been able to find their proper path. Dharma also offers an explanation for the people who are drawn into your life, either by what is perceived as chance, or by attraction and deliberate effort. When seen as a divine assignment, dharma links the sense of self with the sense of Self.

Self-efficacy is empowerment and should be understood as having a source and a direction. When the power to control the environment and others in it comes from the self, it is ego driven and one can easily stray from the path. When this power is perceived as coming from the Self, it is more likely to be used to regulate our own behaviors and attitudes, and can lead us further along the path to self-realization as described in the religious scriptures. People who follow a universalist path or no traditional path, may say that this power comes from within themselves, without assigning it to a divine origin. This can be interpreted as Self, whether or not it is labeled as divine.

Self-efficacy is the power to manage the "burden" of disability, to accept limitations while engaging in behaviors to promote wellness, to counter the barriers and discrimination that are still rampant in our society while not succumbing to the anger and frustration that they provoke, to move disability from the foreground to the background of life in service of higher goals of dharma. When observing women who show high self-efficacy in managing disability and its impact on their lives, it is difficult to determine whether they have discovered and use the power of the Self or whether they have surrendered to it. Many of the women who participated in the studies reported on earlier displayed a combination of both. They seem to draw on a hidden reserve, a power within that offers them a strength of ego and confidence in their ability to overcome obstacles and rise to challenges, but many also display an awareness of the limits of their control over their lives and surrender to the will of God to guide and protect them.

Conclusion

By examining the literature on the components of sense of self, particularly self-esteem, self in connection to others, and self-efficacy, and by analyzing qualitative and quantitative data collected from women with disabilities about their journeys of discovery in their personal and spiritual lives, several conclusions can be draw that can be used to prompt further research. First, spirituality is an important tool used by women with disabilities in counteracting overwhelming negative odds imposed by societal stereotypes and barriers against achieving lives of fulfillment. Many women who participated in our studies reported loneliness, frustration, anger, and depression, and found solace in prayer and involvement in religious activities. Many of those whose perspective on life was more optimistic and hopeful and who reported satisfaction with their relationships and opportunities for personal development cited their spirituality as a key ingredient in their happiness. Research examining coping styles and techniques and adjustment to disability among women would benefit by including measures of spirituality and involvement in religious groups in analyzing the predictors and mediators of outcomes. Second, self in connection to others is an integral part of sense of self for all women, yet women with disabilities face extraordinary barriers to establishing positive, long-lasting relationships. How the societal and environmental factors that discourage connection to others impact the disabled woman's concept of self and her place in the world has been the subject of very little research. How women with disabilities see connection to others as a source of spiritual fulfillment has also not been the subject of investigation and merits attention. Third, and ultimately, women with disabilities draw power from both the self on the mundane plane and the Self on the spiritual plane to create lives of active participation and fulfillment. By understanding their intrinsic value based on courageous self-discovery and the love and respect of significant persons in their lives, and by advancing along their personal paths of spiritual discovery, they are able to tap into a power that gives them the strength both to transcend isolation by knowing that they are connected to their loving inner Self and to choose peace and oneness in their lives and the world around them.

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Margaret A. Nosek, Ph.D., Center for Research on Women with Disabilities, Baylor College of Medicine, Department of Physical Medicine and Rehabilitation, 3440 Richmond, Suite B, Houston, TX 77046. Email: [e-mail]