Deconstructing the gender neutrality of chronic ...

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Deconstructing the gender neutrality of chronic illness and disability a

Sally Thorne RN, PhD , Janice McCormick RN, b

MSN & Elaine Carty RN, MSN

b

a

School of Nursing, University of British Columbia, 2211 Wesbrook Mall, Vancouver, British Columbia, V6T 2B5, Canada E-mail: b

School of Nursing, University of British Columbia, Vancouver, British Columbia, Canada Version of record first published: 14 Aug 2009.

To cite this article: Sally Thorne RN, PhD, Janice McCormick RN, MSN & Elaine Carty RN, MSN (1997): Deconstructing the gender neutrality of chronic illness and disability, Health Care for Women International, 18:1, 1-16 To link to this article: http://dx.doi.org/10.1080/07399339709516255

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DECONSTRUCTING THE GENDER NEUTRALITY OF CHRONIC ILLNESS AND DISABILITY Sally Thorne, RN, PhD, Janice McCormick, RN, MSN, and Elaine Carty, RN, MSN


School of Nursing, University of British Columbia, Vancouver, British Columbia, Canada

Although a great deal has been written in the fields of women's health and disability/chronic illness, there is surprisingly little crossfertilization. The dominant narrative within society orients us toward a view of chronic illness and disability that is gender neutral and devoid of social context. Examination of the ways in which chronic illness and disability are differently experienced by men and women creates a foundation upon which the implications of the dominant narrative can be explored. In this analysis, the authors find clinical, sociopolitical, and theoretical implications that derive from the traditional reluctance to consider the intersection of these fields of study. They conclude with recommendations for broadening our vision, correcting the omissions within our knowledge, and rethinking our part in contributing to inequities within society.

Recent trends in social analysis have uncovered the significant degree to which factors such as gender, ethnicity, and socioeconomic circumstance influence social experiences. Critical and feminist analyses have led to the deconstruction of patriarchal and capitalist ideologies in such diverse domains as the family, education, health care, and the legal system. It is no longer radical to propose that gender, race, and class are predictive of population health trends, patterns of health service utilization, and responses to health challenges. However, analyses of chronic illness and disability have not enjoyed the rigorous critical and scholarly

Received 1 December 1995; accepted 2 May 1996. Address correspondence to Sally Thorne, RN, PhD, School of Nursing, University of British Columbia, 2211 Wesbrook Mall, Vancouver, British Columbia V6T 2B5, Canada. Email: [email protected] Health Care for Women International, 18:1-16,1997 Copyright © 1997 Taylor & Francis 0739-9332/97 $12.00 + .00

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attention that their prevalence in society demands. Indeed, chronic illness and disability studies have for the most part taken on a posture of gender, race, and social class neutrality to the extent that they are not easily identified as arenas in which social justice or gender inequity are at issue. In this article we contend that a dominant narrative of gender, race, and class neutrality exists within the health care and scholarly communities, and that this ideology systematically ignores the social context in which women with chronic illness and disability live. While acknowledging the interlocking nature of these systems of oppression, our focus is gender neutrality. We claim that feminist theory has, with few exceptions, avoided women's disability issues and ignored the important theoretical perspectives that disabled women's experiences provide for an expanded feminist understanding of the social construction of the body and identity. We demonstrate ways in which this is problematic for our understanding of the gendered nature of disability experiences. Additionally, we explore the implications of this dominant narrative, focusing on ways in which it exacts a social as well as an individual cost. Finally, we propose ways in which nurses concerned with chronic illness and disability can understand and reverse their complicity in the process of rendering invisible the social context of these phenomena. THE SOCIAL CONSTRUCTION OF DISABILITY AND CHRONIC ILLNESS The social experience of living with chronic illness and disability is neither gender nor context neutral. We use the term dominant narrative to indicate the prevailing attitudes of the health care system and health care professionals, which suggest that the experiences of chronic illness and disability are neutral with respect to gender, race, and class. Dominant narratives or discourses are the social practices, values, and cultural beliefs that prevail in a given culture or subculture at a specific historical moment and shape a collective sense of what is right, proper, worthwhile, or valuable. These dominant discourses are implicated in the formation of subjectivity and become internalized as one's sense of self. Although such discourses rarely go unchallenged, competing discourses must struggle for recognition and legitimacy, or remain marginalized. The very term disability assumes a self-evident departure from the abilities of normal individuals. However, no natural or normal body exists outside of, or prior to, cultural constructions (Mascia-Lees & Sharpe, 1992). Disability is one such cultural construction, dependent for its meaning on the sociohistorical and political contexts in which it appears. Disability, according to Thompson (1994) is a "corporeal difference invested with meaning that is ultimately manifest in sociopolitical rela-


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tions" (p. 593). Thus, the idea of disability is a politicized category and is intimately bound up with relations of power. Examples of dominant discourses in our society that are oppressive for people with chronic illnesses and disabilities, as well as most women, include the worship of the perfect or ideal body, which enshrines an unattainable image of bodily perfection for both men and women (consisting of youth, strength, slenderaess, graceful movement, and physical perfection); an aggressive work ethic, which makes it difficult for those who cannot hold paying jobs to feel that they are contributing; a valorization of winning, cure, and prevailing over adversity, which carries the implication of personal failure for those who are disabled; and the demand for body control, which makes those who lack such control an embarrassment to others and contributes to avoidance and isolation of those with disabilities. EVIDENCE FOR GENDERED EXPERIENCES OF DISABILITY AND CHRONIC ILLNESS The way in which individuals live with ongoing health challenges is powerfully influenced by race, socioeconomic circumstances, and gender roles. For example, it has become apparent in recent years that poverty predicts high rates of chronic illness and disability (Lohr et al., 1987). It is well recognized that the economically disadvantaged are at high risk for most illnesses and accidents and, conversely, that those with chronic illness and disability are at high risk for poverty (Chirokos & Nickel, 1986; Williams, 1991). In addition, certain ethnic and social groups within society are grossly overrepresented among the poor, women are at higher risk for poverty than are men, and older adults are more likely than middle-aged adults to live below the poverty level (Funkhouser & Moser, 1990). Chronic illness and disability tend to be more prevalent and serious with advancing age (Statistics Canada, 1995), and because women live longer than men, a greater proportion of the disabled population is female (Graham, 1984). Clearly, ethnicity and gender are prominent demographic variables for predicting chronic illness and disability. Society's response to chronic illness and disability does not reflect the actual population demographics of specific conditions and is often inconsistent with notions of distributive social justice (Sanders, 1985). In fact, patterns in funding priorities demonstrate that certain kinds of illnesses and disabilities have been privileged within Western social and biomedical decisionmaking (Deegan, 1985). For example, although heart disease causes as much mortality in women as it does in men, its severe impact among relatively young men may have contributed to a high


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social priority on cardiac medicine and its concomitant technological advances (Angell, 1993). In contrast, cardiac research priorities have rendered women with heart disease almost invisible. Cancer is another serious disease that has attracted a significant proportion of the public purse over the last several decades. However, it has also been noted that a disproportionately low percentage of that funding has been directed toward breast cancer research, despite the fact that breast cancer is strongly implicated in the premature mortality of women (Angell, 1993; Batt, 1994). Thus, while we explain our priorities in cardiac disease by virtue of its devastation to younger men, we have not applied similar standards to devastating illnesses where women are concerned. A similar pattern of inequity is evident in social policy and distribution of resources for people with disabilities. Among the many forms of disability within society, spinal cord injury commonly afflicts younger males. Where building codes and social programs directed toward the disabled have been publicly supported, wheelchair access has been among the first priorities. Further, as Herzlich and Pierret (1985) suggest, legislation has socially constructed sickness in direct relation to the notion of work. Among the many forms of social support that might be developed within society, there is a well-documented trend toward vocational rehabilitation programming and workplace accessibility, the primary purpose of which is to restore wage earners to the public domain (Fine & Asch, 1985; Gadacz, 1994; Phillips, 1990). These programs have notoriously focused on male-oriented occupational skills (Graham, 1984; Thurer, 1982; Wagle, 1994). Although the issues are articulated in gender-neutral terms, the applications disproportionately benefit men, who are given more opportunities in the world of work and who qualify for social programs because of their visible disabilities. While it is well recognized that unemployment and underemployment are high among disabled men, the employment levels for women are much less favorable (Carrick & Bibb, 1982; Thurer, 1982). It is clear that existing social policy is designed to advantage men, and that social programming in relation to chronic illness and disability extends that advantage (Fine & Asch, 1985; Wagle, 1994). A less direct way in which women and men are differently represented in our dominant narrative about the social neutrality of chronic illness and disability is in the gender imbalance among the caregiving population. Professional and paraprofessional involvement in the actual physical and supportive care of the chronically ill and disabled is overwhelmingly female (McKeever, 1995). Further, the invisible corps of "family" caregivers who devote considerable resources to the care of the chronically ill and disabled within society is also predominantly female. The social burden on women for both paid and unpaid caregiving has been increasing over recent decades as former funding levels within health



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and social programming are targeted for reductions (Leuning, 1994). Despite widespread recognition that health care spending in Western societies has spiraled out of control, the burden of" reductions has not been proportionately felt through all health care sectors. As is evident from the analysis of social theorists and health care consumers, support for acute illnesses with high technological interventions has remained relatively stable throughout this period. The popular rhetoric portrays this trend in gender-neutral terms, so that society maintains a sense of equal access to these highly prized and specialized services. However, it is undoubtedly the case that technological health care as the core service domain increases the pressure on family caregiving (Bury, 1991; Foster, 1994). As Williams (1991) suggests, the "New Right" in social policy has reinvented the social contract so that needs not met by the state become the responsibility of the family. Although the term family connotes an equality across social groupings; it must be remembered that family caregivers are typically mothers, daughters, and wives rather than fathers, sons, and husbands (McKeever, 1995). Thus, despite the compelling evidence that women and men are differently afflicted by chronic illness and disability, and that these differences are systematic and predictable, the scholarly and theoretical literature betrays very little recognition of these factors. The current discourse in disability literature has successfully disentangled disability (biological condition) from handicap (social ramifications) (Fine & Asch, 1985; Morris, 1991) and has advanced the position that disability is a social construction (Gadacz, 1994). What is missing is a clear analysis of the intersection between disability and gender, with all of the consequent social and cultural ramifications. As Deegan (1985) has noted, the separate literatures on women and the disabled as socially disadvantaged groups are extensive. Analysis of the feminist, women's health, and chronic illness and disability literatures yields some insight into what interests may have been served by avoiding the intersection between these issues. Treatment of Gender Issues in the Disability and Chronic Illness Literature The chronic illness and disability literature in the health sciences sustains our argument that the dominant narrative is one of gender and context neutrality. The prevailing biomedical model continues to encourage a focus on the disease or condition underlying the chronic disease or disability (Gadacz, 1994); the impaired body is disembodied from the person who inhabits it as it undergoes treatment and rehabilitation in an illness trajectory. Research in the health care fields has typically ignored the relevance of gender, race, ethnicity, sexual orientation, or social class for per-


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sons living with disabilities (Fine & Asch, 1985). Only recently has it been acknowledged that the findings from research on exclusively male subjects might not be relevant to women. However, when diseases that are most prevalent in women, such as multiple sclerosis, rheumatoid arthritis, and systemic lupus erythematosus are considered, the realities of daily living as a worker, mother, partner, and housekeeper are rarely addressed. It is also apparent that chronic conditions that occur predominantly in women take much longer to enter the mainstream of discussion in the medical literature (Senecal, 1990). The discourse in the literature about chronic illnesses such as fibromyalgia and chronic fatigue syndrome, which occur almost exclusively in women, is particularly problematic. Not only is the impact of these diseases on daily life ignored, but the very existence of these conditions is often questioned (Bennett, 1993; Kroenke, 1991). Further evidence of gender neutrality occurs in the literature around pregnancy in women with disabilities and chronic illnesses. Articles on women with systemic lupus erythematosus focus on the effect of pregnancy on the woman's renal function and the effect of lupus on the fetal heart (Mintz & Rodriguez-Alvarez, 1989; Sammaritano, 1993), and articles on pregnancy in women with multiple sclerosis focus on relapse rates (Bernardi et al., 1991; Frith & McLeod, 1988). While we do not intend to trivialize the utility of such information for both health care providers and women, the preponderance of information focuses on the impaired body and is bound by physicality, reinforcing the stereotypes of tragedy, pain, and dependence. Thus, even in these bodies of literature, disability comes to define the person and take on predominant status. Where the gender neutrality of disability and chronic illness has been challenged within the literature, an understanding of the social construction has begun to emerge. It seems clear from the explorations of several researchers, for example, that women with disabilities are often made to feel that their choices related to reproduction and mothering are deviant or socially irresponsible (Carty, 1995; Corbin & Strauss, 1991; Smeltzer, 1994; Thorne, 1990). Writings by and about women with disabilities document a collective lack of awareness of the disability and gender intersection (Campling, 1981; Duffy, 1981; Matthews, 1983; Morris, 1991; Thompson, 1994; Wendell, 1992). Although both social and interactionist models are being applied in some of these texts, the complexity of the meaning requires much more reflection and work. Treatment of Disability and Chronic Illness in the Feminist Literature There has been very little intersection between the feminist and disability literatures (Asch & Fine, 1988; Deegan, 1985; Wendell, 1992),



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and feminist scholars have rarely looked to disability theory to inform feminist theory. Unfortunately, feminist insights about the body have not informed disability theory; neither have feminists paid attention to how cultural striving for the perfect body has oppressed and alienated people with chronic illnesses and disabilities. The lack of cross-fertilization between feminist theory and disability theory results in the impoverishment of both. Several reasons have been proposed for this lack of overlap between feminist and disability theorizing. Thompson (1994) noted that disability rights activists have focused on a medical model oriented toward treatment, rehabilitation, and policy and not on the sociopolitical issues of discrimination. A key step in the transformation of the political agenda for disability activists was the recognition of disability as a social construction in much the same way that race and gender are. Despite this insight, there is very little contemplation of disability issues within the feminist literature, with the exception of those feminists who happen to be disabled. In their discussion of the factors that may contribute to this inattention among feminists, Asch and Fine (1988) suggested that individuals with disabilities can create "existential anxieties" in people who do not have disabilities by making them face their own repressed attitudes toward helplessness, dependency, pain, and suffering. Having identified how dominant patriarchal discourses have shaped women to be compliant, nurturing, noncompetitive, and dependent, feminists may be uncomfortable when confronted with the image of the woman with a disability, and thus avoid dealing with the theoretical quandaries that enforced dependency creates for them. The perceived dependence of women with disabilities threatens the hard-won advances women have gained in our society. In addition, women with disabilities may challenge feminists' ambivalent feelings about sexual attractiveness and the attention women enjoy because of this. Women with disabilities, who are often assumed to be nonsexual, may disagree with feminists that being seen as a sex object is a problem with which they should necessarily be concerned. Another potential area of dispute between feminists and disabled women is in the area of control over reproduction. Many disabled women object to the message that is being conveyed by a society so willing to encourage aborting so-called defective fetuses. Such freedom of choice arguments may imply that the life of a disabled person is not worth living, which may be deeply offensive to those with disabilities. IMPLICATIONS OF THE DOMINANT NARRATIVE The dominant narrative holds that disability and chronic illness are relatively neutral with regard to gender, race, and economic conditions.

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Despite overwhelming evidence of disproportionate prevalence and burden, the shared assumption of neutrality remains prominent in the health care practice and science literature. The significance of this insight becomes apparent when one examines the implications that the dominant narrative has for the way scholarly research is prioritized and conducted, social policies are supported, and clinical practices are sustained. Clinical Implications Some of the most disturbing implications of this dominant narrative are apparent when we examine the consequences that it has in the practice arena. For example, as has been discovered in the HIV epidemic, the causation, course of illness, and treatment can be quite different for men and women with similar diagnoses. These differences can emerge in such diverse contexts as who gets targeted for public awareness campaigns, which symptoms are considered clinically significant, and when in the course of illness diagnosis and treatment are initiated. As has been well documented in the chronic illness population (Thorne, 1993), the structure and organization of health care services does not take into account the practical issues of concern to women, such as transportation, child care, hours of service, or place of service. Even in the gendered sphere of gynecological care, services are rarely physically or psychologically accessible. Thus, managing an illness or disability is expected to eclipse all other responsibilities that women may have in their lives. Further, health care providers often lack specialized training in the sociopolitical aspects of disability and chronic illness, even when this is their general area of expertise. Such lack of awareness of the context in which chronic illness and disability are lived results in inappropriate use of language, incomplete assessment, and often irrelevant intervention approaches. Although stigmatizing and discrediting experiences are anticipated within the general social milieu, health care professionals are expected to hold to a higher standard of tolerance and understanding where health issues are concerned. Finally, the implications of the dominant narrative for understanding chronic illness and disability are strongly apparent in decisions regarding clinical practice and scholarship priorities. By fostering the notion of gender neutrality, we continue to perpetuate the dominant norms, to create programs that ignore the social and family context in which illness is lived, and to extend the degree to which care issues are differently problematic for women and men. For example, we treat all hospitalized children as if they have a mother who can attend 24 hours per day, we assume the institutionalized elderly person will have a daughter or daugh-



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ter-in-law who can assist with daytime care, and we create home care dietary and treatment regimes that depend on the premise that each patient will have a wife to prepare special diets and carry out medical treatments and procedures. When our patients are mothers of young children, we assume that they will find ways to manage or temporarily delegate their responsibilities; when our patients are fathers, we focus on the impact that time off work might have on their careers. In these ways, health care professionals create discrepant illness and disability experiences between the genders by virtue of ignoring the inconvenient contextual realities that individual lives represent. Social and Political Implications As has been argued by several health care critics, our fiscal priorities tend to be driven by the dominant biomedical and technological ideology within health care (Acker, 1989; Batt, 1994; Milio, 1988; Thorne, 1993). Because the rhetoric of "sparing no cost" when precious life hangs in the balance is excruciatingly difficult to challenge in the public arena (Besharov & Silver, 1989), the highly technological, scientifically grounded critical intervention focus within biomedicine remains intact while the preventative and supportive components of the health care system experience steady erosion (Black et al., 1986; Rachlis & Kushner, 1994). One might say that the masculine life-saving component of the system is writ large in the public consciousness, while the more feminine aspects—the endurance, the suffering, and the burden—of care are overlooked. As the excessive costs of health care have forced health spending reform in all industrialized nations, the financial and social responsibility has shifted toward afflicted individuals and their families. For example, although hospital closures provoke intense critical debate (Rachlis & Kushner, 1994), reductions in home care services are hidden from the public gaze (Anderson, 1990). In the guise of respecting family and community as basic social units, and bringing health care closer to home, health care professionals and policy makers alike have systematically colluded to deinstitutionalize health services for chronic illness and disability. Further, instead of engaging in thoughtful analysis of their own contribution to the cost of health care, the professional stakeholders have appropriated health promotion ideology to reinforce an increasingly alarming form of individual responsibility for ill health (Sanders, 1985). Many of the excesses in health care spending are blamed on abuse of services, especially by the chronically ill and by women (Walkover, 1988). Conveniently ignoring their own contribution to a society dependent on supposed experts for its health and illness decisionmaking (Cohen, 1987; Shorter, 1985), the major players, such as medical associ-


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ations, are now suggesting that public irresponsibility for independent health maintenance is the culprit. While it is undoubtedly important to acknowledge families and communities as the context in which health and illness are lived, a critical analysis of movements toward decentralizing supportive health services reveals the extent to which they will inevitably augment the already significant gender inequities in shouldering the burden of chronic illness and disability in our society. Family-based care, regardless of its advantages, places an inordinate responsibility on the family. Further, it is well recognized that women bear the overwhelming brunt of that increased responsibility. Thus, it is our conviction that the dominant narrative of gender and social neutrality within chronic illness and disability serves to assuage the public conscience and keep those in power from acknowledging the terrible inequities inevitable in the current health reform movement. Theoretical Implications Dominant discourses contain ideological messages and social practices that tend to reinforce cultural expectations that are consistent with the dominant group. In Western society, dominant discourses assume a youthful, able-bodied, white, middle-class, male referent. To the degree that individuals differ from the referent implied in the dominant discourses, they are cast as the "other" and assigned stereotypical "essential" qualities as a group. These culturally constructed representations masquerade as truths. The act of naming or labeling is an act of power of one group over another. Once labeled, groups can be studied, dissected, and theorized about by experts from the dominant group. As Said (1979) brilliantly conceptualized it, the process of "othering" is a discourse for dominating, restructuring, and having authority over the other. Disabled people have been subjected to this phenomenon by a society that takes as its norm the energetic individual with no physical or mental handicaps, rendering those who are unable to meet these criteria as lacking or handicapped. This view conveniently ignores the reality that the disabled are not different from us but that they are us. "Unless we die suddenly, we are all disabled eventually" (Wendell, 1992, p. 66). Foucault's work demonstrates how disciplines, institutions, practices, and discourses operate as dominant narratives incorporated into one's sense of self and also serve to legitimate modes of domination and control (Best & Kellner, 1991; Foucault, 1979). The first step in this process is dividing practices, in which individuals are labeled and categorized according to some standard. Those who do not meet the criteria can be considered deviant or abnormal, creating the category of "other" which



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can then be studied by members of the dominant group. Next, this exercise of power generates knowledge (about the abnormal condition and the means of correcting it) and creates the new discipline and its professionals. The third step is normalization of the deviant. Dominant social constructions of the appropriate roles for women and for the chronically ill or disabled affect how professionals interact with their patients, the therapeutic goals set, and indeed what aspects of the disability are deemed problematic. It is important to emphasize that this process is not predicated on some neutral and objective notion of truth. Rather, the criteria used to label individuals as deviant are social constructions embedded in specific cultural and historic contexts. Feminist disability theorists have demonstrated that these criteria, arising out of cultural ideals of the perfect body, serve to alienate us from our real bodies and are thus oppressive to everyone, not just women and the disabled (Wendell, 1992). Such discourses play a crucial role in sustaining hegemonic power both in the messages they contain and in their gaps, silences, and omissions. Although evidence of resistance can be detected within marginalized discourses such as feminist theory and disability theory, neither of these bodies of theory offers us clear direction in understanding what ought to be studied and how it ought to be approached. Thus, the theoretical efforts toward understanding disability and illness and the influence of gender within social and cultural contexts are enacted in isolation from each other. DISCUSSION Both feminists and disability scholars have demonstrated a reluctance to incorporate the insights, knowledge, and political struggles of the other group into their theories and political agendas. However, there is some evidence that this situation is slowly changing. Within the past decade, a handful of books and articles have examined chronic illness and disability from a feminist perspective (e.g., Fine & Asch, 1988; Browne et al., 1985; Deegan & Brooks, 1985; Hillyer, 1993; Lakoff, 1989; Mascia-Lees & Sharpe, 1992; Saxton & Howe, 1987; Thompson, 1994). The potential overlaps between the issues of interest to feminists and people with disabilities include a concern with issues of embodiment, the phenomenon of otherness, and the loss of voice. Both feminists and disability activists have addressed similar problematic debates between sameness and difference, independence and dependency, and integration and separatism (Wendell, 1992), and both have struggled to change laws, institutions, and social practices that reduce individuals to a single biological trait, such as female or disabled. Feminists have exposed the oppressive cultural myths surrounding


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women's bodies, demonstrating how dominant discourses consisting of advertising, movies, magazines, and the health and beauty industries have privileged a very narrow view of what is desirable for women in our culture. The same pursuit of the idealized body that is oppressive to women operates against people with disabilities, who have unique experiences of embodiment and of living in bodies that interact with the world in fundamentally different ways than people without disabilities. As long as we hold on to this idealized body as our cultural standard, we remain alienated from and rejecting of our real bodies. Asch and Fine (1988) advocate that disabled rights groups could benefit from emulating the socialist-feminist demands for transformation of social practices and institutions rather than simply struggling for equality of opportunity for people with disabilities within the existing arrangements. Further, feminists could expand their understanding and theorizing about the body by incorporating the knowledge and experiences of people with disabilities. Recognition of the way in which the health care professions have adopted a dominant narrative of gender neutrality in chronic illness and disability theory permits us to examine our own collusion in the process with a critical lens. By virtue of its intimacy with chronic illness and disability, nursing is ideally placed to challenge that which renders gender, race, and social status invisible in health care interactions. Reflecting on practice and challenging hegemonic structures should be essential competencies for a new generation of nurses who will confront the taken-forgrantedness that has often immobilized nursing within the health care system. Increasingly vocal critiques from lay consumers, social theorists, and political activists will force the health professions into deconstructing their embedded assumptions and restating their social mandate where chronic illness and disability are concerned. Awareness of the complexities involved in social constructions of how illness and disability are lived in our society will charge those of us in the health care field with the immense task of balancing competing perspectives. For example, paired with the moral obligation to deconstruct "othering" is the social professional contract to respond to the genuine needs of those with chronic illness and disability. So, for example, while coping theory may permit society to extend the burden on individuals and families, it also offers practical support for quality of life. Similarly, while researchers recognize the moral problem of appropriating voice, they also recognize that correcting imbalances within the theoretical knowledge base will require mechanisms to bring voice to those who have been silenced. Emancipatory research designed to apply expert research talents to socially grounded life problems in a cooperative manner may serve both ends without immobilizing either. Clearly, strong



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research in the intersection between biomedical and social variables is required, and that research will demand a critical approach to such questions as who should be studying which problems and how care recipients should be involved in directing development of the knowledge that will shape their care. Finally, major revisions to traditional theoretical perspectives in the health care field will be required if we are to make visible the intersecting variables that shape lives and determine experiences with chronic illness and disability. If we accept that a dominant narrative about gender and social neutrality has become a powerful social construction in chronic illness and disability discourse, and if we employ that insight toward reflecting on our own collusion in the process, then we have the potential to dramatically enlighten our theorizing, our practice, and our science.

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