Carol J Gill. Handbook of Disability Studies. Editor: Gary L Albrecht, Katherine Seelman, Michael Bury. Sage Publications. 2001.
I feel calm,
then I stagger and stumble. I want to be graceful.
When I meet someone new, I feel shy,
my muscles start jerking and I stutter.
I need harmony
between inner me
and outer me. People see the outer me,
out of kilter,
and drooling. Ah, but I am learning to confront
my rage and despair
and I have friends
who support me as
I solve the daily
challenges of creating
an independent life.
I imagine a bridge
between outer and inner, between stranger and friend,
between you and me.
The bridge symbolizes a poignant theme in disabled persons’ autobiographical accounts: their desired connection with others. Ironically, the image of the bridge in the introductory poem highlights a troubling disjuncture between the worlds of disability and non disability that many disabled individuals find central to their social experience. This chapter examines the area of disconnect beneath the bridge—specifically, the tense gap between disabled people’s “insider” experience of disability and “outsiders’” convictions about what that experience must be.
The Dilemma: “My Disability is How People Respond to My Disability”
The ideas presented in this chapter evolved from a wide-ranging exploratory review of theoretical and empirical work on “the experience of disability.” Although an examination of “experience” reasonably involves inquiry at the individual level, it also invites analysis at the social level. This review was, in fact, guided by the conviction that rigorous investigation of the personal and interpersonal experiences of members of a minority group yields crucial information about social forces and cultural values affecting the group. In light of current criticism within disability studies of an exclusive sociopolitical rendering of disability (Hughes and Paterson 1997), sources were also reviewed that extend the inquiry to personal experiences of impairment and embodiment.
The resulting analysis draws primarily from three information sources:
- Conceptual papers addressing the experience of disability, many of them authored by individuals with disabilities;
- Formal social science and rehabilitation research addressing the disability experience and related themes;
- Personal accounts of persons with disabilities.
The interrelatedness of these three knowledge sources, particularly the consistency of themes across them, is arresting. One does not venture far into an exploration of the disability experience before noticing that isolation, invisibility, tension, and struggle are recurring topics whenever and however disabled persons are asked about their lives (French 1993; Zola 1982). Despite conventional public perceptions, these negative universals of the disability experience rarely issue directly and exclusively from impairments or related functional limitations (Olkin 1999). In fact, the entity that disabled persons feel most isolated from, invisible to, and in tense struggle with is generally a person with whom they try to interact (employer, neighbor, salesperson, physician, case manager) but who draws unfounded assumptions about their experience and therefore cannot understand who they really are. In a damaging self-fulfilling cycle of judgment, many nondisabled observers naively contribute to a real tragedy of disability—the interpersonal impasse—by clinging steadfastly to the presumption that to live with an impairment is to linger in a tragic state. Stated more directly by Craig Vick, an informant in Gelya Frank’s (1988) anthropological study of disability, “My disability is how people respond to my disability” (p. 111).
Several well-known conceptual frameworks have been advanced to describe and explain the disability experience, including disabled people’s experience of estrangement and tension in the world of social relations, what that experience means to them, and how they respond to it. Some of the most frequently cited theories and related constructs, such as stigma, adaptation to functional loss, and liminality, will be presented and evaluated with respect to both their contributions and their shortcomings in accounting for the data. This discussion culminates in a proposal to reframe the dilemma of disabled people’s experienced social disconnection as a conflict of values, perspective, and identity rather than in the more passive terms of adjustment or stigma management.
In particular, it will be argued that a central feature of the disability “insider” experience is a persistent and disquieting sense of mistaken identity. Across a range of situations and interpersonal relationships, disabled persons find that the identities they forge and present to the world are commonly dismissed by others in favor of stereotypical identity ascriptions. Consequently, a significant part of the disability experience centers on disabled persons’ tireless efforts to set the record straight and to reestablish their real identities. These efforts and the stakes attached to them are examined in the context of theory. The ways in which this dynamic differs from the experience of other marginalized and misperceived groups is also considered. Overall, this chapter is dedicated to disabled people’s indefatigable strivings for integrity in both self and social relations. It acknowledges not their need for functional integrity, or normality, but their critique and expansion of that concept and their impressive industry in bridging the divide between their self-views and public perceptions of them, between their inner and outer worlds.
In writing this chapter, I have worried that it may convey the impression that the disability experience is essentially negative and immutable or that interaction between disabled and nondisabled people is hopeless—neither of which I believe. This topic encompasses some of the hardest realities confronted by disabled persons regarding their place in the world of social relations and their ambiguous status as minority group members scattered throughout the matrix of the dominant nondisabled majority culture. After delving into the pertinent conceptual, empirical, and narrative literatures, however, it became clear that searching for a positive spin on this subject might not only imperil the scholarship but would also render a disservice to people with disabilities who have no choice but to confront these hard realities daily. Furthermore, the disability experience is, more accurately, various group, subgroup, and individual experiences. Many are frankly positive. We need to know more about these and the conditions under which they occur. However, the positive stories will be all the more compelling if set into an honest analysis. That analysis begins with a review of the most frequently cited theories bearing on the experience of disability.
A Chronology of “Classic” Theory on the Disability Experience
Beatrice Wright and Value Transformation
Formal study of the disability experience seemed well launched in the period following World War II. The widely cited work of Beatrice Wright (1960) and her colleagues from Kurt Lewin’s school of field psychology, such as Roger Barker, Tamara Dembo, and Gloria (Ladieu) Leviton, had underscored the importance of social context in understanding the experience of disabled persons (Fine and Asch 1988). Interwoven throughout Wright’s description of the individual’s efforts to integrate disability into a positive sense of self was an explicit acknowledgment of disability as a devalued status imposed on persons collectively. According to Wright, disabled people react to functional impairment not in simple ways, determined directly by individual physiology, but in complex, socially reasonable ways that are powerfully influenced by cultural values and others’ behavior.
Wright’s classic text, Physical Disability: A Psychological Approach (1960), and her revised text, Physical Disability—A Psychosocial Approach (1983)—retitled to strengthen its emphasis on the interaction between individual and society—richly showcased the words and perspectives of individuals experiencing physical and sensory impairment. Her appreciation for the disability voice complemented her criticism of observer negative bias in interpreting the disability experience. In this regard, she wrote, “We must again remind ourselves how seriously mistaken outsiders can be when led astray and deluded by the compelling nature of their own values and perspective” (Wright 1983:159).
One of Wright’s most enduring contributions to our grasp of the disability experience was her attention to values and their transformation during the disability adjustment process. Her theory of value change, extending seminal groundwork by Dembo, Leviton, and Wright (1956), posited a set of mechanisms to address the following paraphrased question: In a society that values unblemished appearance and function, how can an individual come to accept functional limitation or loss without absorbing a sense of shame and inferiority?
One mechanism employed by self-accepting disabled persons, according to Wright (1983), is the enlargement of their scope of values, accomplished by developing interest in still attainable goals and by reaching beyond what has been lost. Another mechanism is the subordination of the values of body appearance and performance, which she referred to as “physique,” to qualities of human worth that are still within grasp, such as personality attributes and the willingness to expend effort. Another is the “containment” of disability effects to prevent the perceived “spread” of limitation to the entire self. Here Wright advocated what these days might be called the deconstruction of disability stereotypes through efforts to separate the functional consequences of impairment from over generalized or incorrectly ascribed limitations. In explaining this process, she presented some ideas about the complexity and context dependence of the disability experience that seem surprisingly consistent with contemporary disability rights and disability culture ideology, including the notion that “not all effects [of impairment] are negative,” and two statements significantly italicized by the author that conclude her discussion of containment: “A disability involves certain limitations in certain situations. The source of limitation is due to barriers imposed by society and not only to personal incapacity” (Wright 1983:178). The remaining mechanism of value change addressed by Wright is the transformation of comparative-status values, the assessment of one’s qualities in comparison to the qualities of others or in comparison to cultural norms, into asset values, the assessment of qualities in terms of their contribution to one’s life. An example would be skill in using adaptive equipment. Although outside observers immersed in comparative-status values may judge the use of such devices as inferior compared to “normal” functioning, persons with disabilities regard them as assets because they have learned to appreciate the benefit derived from their use.
In this conceptualization of the experience of disability, the contribution of impairment, or “physique,” and the contribution of the social environment were equally weighted. Disability encompassed both a personal and a social struggle. The personal challenge was to confront functional losses, possibly even to mourn them, and then to develop goals and values compatible with remaining abilities. The social challenge was to navigate, forebear, or oppose the negative attitudes and obstacles constructed by those who overvalue physique, fear impairment, and focus inordinately on functional and aesthetic loss.
The idea that the disability experience involves a significant transformation of values and an affirmative surrender of dominant cultural standards is noteworthy in at least two respects. First, it is supported by empirical evidence and by the subjective reports of persons with disabilities. In fact, as suggested by research and narrative discussed later in this chapter, value transformation is one of the outstanding common denominators of the disability experience. Second, it marks a critical locus of divergence between insiders and outsiders of the disability experience. The overhaul of priorities and worldview prompted by the functional and social exigencies of disability is the point at which many disabled individuals veer sharply from nondisabled associates in their understanding of disability and its consequences for daily life.
Wright and her colleagues established an impressive body of disability research and conceptual analysis that, given its historical context, was far-reaching and progressive. Before their work, after all, psychoanalytic formulations of the experience of disability had focused primarily on somatic dysfunction and its presumed direct threat to healthy self-development. Although predating the emergence of disability studies as an academic field, the work of Wright and her associates presaged a social model research paradigm in two key respects: It was grounded in the perspectives of persons with disabilities, and its context was disabled people’s social devaluation.
The stage had thus been set, it seemed, for investigating the individual’s experience of disability as knowable only in the context of the sociopolitical status of disabled people as a group. This potential for a fuller exploration of the disability experience in social context was, however, only partially realized in the immediately succeeding years. Investigations of the disability experience were primarily taken up by either sociologists or rehabilitation clinicians whose studies correspondingly clustered around two constructs: stigma and adjustment.
Stigma, Deviance, and Social Role Learning
Erving Goffman’s (1963) sociological analysis of stigma and its consequences in socially marginalized groups is frequently cited as foundational in disability literature reviews. His interpretation of the social experience of disability has been influential for so long, in fact, that disability studies scholars from several disciplines collaborated in the late 1980s to produce a special issue of the Journal of Social Issues (Fine and Asch 1988) dedicated to the theme of moving disability research “beyond stigma.’”
Goffman (1963) drew a stark picture of strained relations between disabled and nondisabled people. According to his observations, a major aspect of the experience of disability is the ongoing struggle to ward off potential interpersonal devaluation caused by one’s social classification as less than normal, at best, and less than human, at worst. If stigma, an attribute that triggers social discreditation, can be minimized or submerged during social interaction through strategies such as using humor, proving competence, or hiding difference, the individual may “pass” as socially acceptable. If stigma cannot be successfully managed, the individual is consigned to the margins of humanity and often internalizes the stigmatized, spoiled identity as somehow deserved. Goffman described in detail the social implications of publicly noted deviance. For example, persons with detectable impairments may be subject to rude questions or comments and denied the privacy that “normal” adults are generally accorded in public. In some cases, they may be granted superficial acceptance as long as they remain mindful of their tenuous status and take care not to exceed the tacit limits of social tolerance. More extremely, disabled persons may be treated as nonpersons, dismissed as incapable of the same feelings, goals, and role responsibilities as nondisabled people. Goffman wrote extensively of the particular dilemma of the “discreditable,” persons with a nonvisible stigma that could be potentially discovered, contrasting them with the “discredited,” persons with obvious stigma. Whereas the central social demand of visible stigma is managing the tension of encounters, Goffman theorized, the central social demand of hidden stigma is managing information about oneself to avoid discreditation.
One of Goffman’s contemporaries, Fred Davis (1961), gathered data that substantiate both the strained nature of encounters between disabled and nondisabled persons and the effort expended by disabled persons to minimize that strain. His study described strategic behaviors adopted by disabled persons to “disavow deviance” and to establish their common humanity in interactions with others. Davis theorized that social interaction is threatened by the public’s routine perceptions of disabled persons as “different,’ odd,’ estranged from the common run of humanity,’ etc.; in short, other than normal” (p. 122). Such perceptions, he believed, are expressed in a “pronounced stickiness of interactional flow and in the embarrassment of the normal by which he conveys the all too obvious message that he is having difficulty relating to the handicapped person as he would to just an ordinary man or woman’” (p. 122).
Davis (1961) interviewed adults whose impairments included orthopedic conditions, blindness, and cosmetic facial conditions, asking how they handled social relationships affected by societal attitudes toward disability. On the basis of the informants’ responses, the investigator concluded that new relationships between disabled and nondisabled persons move through sequential stages of deviance disavowal involving both parties. In the first stage, called fictional acceptance, nondisabled persons superficially treat disabled persons as equals. This surface acceptance may become an end in itself, thus fossilizing the relationship at a barren and limited level. Davis observes, “As with the poor relation at the wedding party, so the reception given the handicapped person in many social situations: sufficient that he is here, he should not expect to dance with the bride” (p. 127).
If the first stage proceeds smoothly, however, the disabled person may begin to disclose sufficient personal information to challenge stereotypes and to encourage the nondisabled person to identify in terms of shared interests and perspectives. Davis (1961) referred to this stage as breaking through. Particularly interesting in light of this chapter’s opening poem, he describes several strategies employed by his informants for “bridging fictional acceptance.” They include deliberate reference to their involvement in “normal” activities, the interjection of in-group disability terminology in conversation as an ice-breaking tactic, displays of wit and charm, particular attention to or agreement with topics introduced by the nondisabled person, and the leveraging of the “normalization potential” of being seen with an attractive nondisabled companion.
If breaking through succeeds, Davis (1961) explained, the nondisabled person relates to the disabled person as though he or she were nondisabled—a goal Davis presumed is desirable to most disabled persons. The final stage of deviance disavowal is institutionalization of the normalized relationship. The relationship has been redefined as normal; the work of this stage is to sustain this redefinition as the nondisabled associate is incrementally exposed to some of the less than “normal” realities of life with disability. Specifically, the disabled person must assist the nondisabled associate in acquiring a repertoire of responses to bumps in the road such as inaccessible buildings and unsolicited help from strangers to facilitate a gradual qualification of the normalized relationship without upsetting it.
Although both Goffman and Davis considered, albeit parenthetically, the case of “deviant” people who deliberately opt to forego the struggle for acceptance by “normals,” neither presented this possibility in a positive light. In Stigma, Goffman (1963) initially discussed positive minority group pride as démodé and later argued that individuals who politically reject “normal” culture in favor of alliance formation with similarly stigmatized persons not only risk calling attention to their differences, thereby reinforcing their social disconnection, but also operate according to the very propensity to categorize that they find objectionable. Davis dedicated merely a footnote to the discussion of disabled persons who refuse to court nondisabled persons for acceptance, reporting that his informants spoke of such individuals with mixed feelings: admiration for their moral courage but disapproval of their willingness to risk exacerbating negative attitudes toward disabled people, thus reducing chances of future public acceptance.
In his analysis of disability as a social role, presented in the book The Making of Blind Men, Robert Scott (1969) theorized that blind people’s needs for assistance hold them captive to the transmutational philosophies and practices of the powerful blind services system. In the process of qualifying for and receiving services, he maintained, blind persons are rewarded for adopting the attitudes and behaviors expected of them by service professionals, and they are punished for viewing themselves in ways that contradict the professionals’ own views of blind people. Ultimately, they are conditioned to be dependent and compliant, a social role that is systematically learned but which the public views as the natural outcome of impaired sight. The blind role, then, is a particular instance of the master tragic identity imputed to all disabled people. Scott noted the economic and political underpinnings of this phenomenon. For example, in communities where the number of available clients is low and interagency competition is high, he pointed out, professionals are likely to endorse intervention strategies that tether profitable clients to the facility rather than encouraging independence. Furthermore, agencies that sequester blind clients are likely to be well supported by communities that wish to avoid integrating blind citizens into mainstream life.
In contrast to Goffman and Davis, Scott (1969) devoted considerably more than a footnote to the discussion of blind people who disagree with the social role assigned to them by service professionals and the public. He described several forms of resistance. According to Scott, resisters may selectively adopt a facade of compliance in interactions with others for the sake of expediency or to avoid being labeled as ungrateful or bitter, dropping the role when circumstances permit. Alternatively, they may knowingly exploit the blind role to their advantage, as in the case of beggars. Scott describes yet another possibility:
Another way that blind men cope with discrepancies between putative and personal identity is to resist and negate the imputations of others at every turn. By doing so, personal integrity is preserved, but the cost is very high. It requires an enormous commitment and expenditure of energy to resist these forces, and the blind man who does so inevitably alienates himself from other people. (Pp. 23-24)
The theoretical frameworks advanced by Goffman, Davis, and Scott all focus on handicapping responses of the social environment to human difference. All suggest that the public’s unwillingness to regard disabled persons as equals serves the interests of the nondisabled community in some consequential way (e.g., as reassurance of normality or superiority), as insulation from the anxiety-provoking fact of human vulnerability, or even as a means of maintaining a rewarding professional career. These are blunt, plain-speaking theories. Their description of nondisabled people’s role in disabled people’s marginalization is unflinching, exemplified by this declaration in the concluding chapter of Scott’s (1969) book: “Blind men are not born, they are made” (p. 121). Acknowledgment of the devalued status of disabled people in these theories is equally forthright, exemplified by Davis’s (1961) bluntness in asking his disabled informants how they handled the imputation that they were not “normal, like everyone else” (p. 121).
These three frameworks also concur in assigning a hapless status to disabled individuals who would oppose society’s negative view of them. The implication is that such individuals act as solitary dissidents who provoke social disapproval or even retaliation with little hope of gain. The conformist majority, in the meantime, is sentenced to the quieter but ceaseless tension between two options: abiding stereotypic ascriptions or asserting personal integrity at the risk of personal harm.
Although the 1970s was a period of increasingly visible disability rights activism, most published disciplinary scholarship on disability began to edge away from forthright social analysis. According to prominent disability studies scholars within social psychology (Fine and Asch 1988; Meyerson 1988), disability research shifted in the decade following the initial publication of Beatrice Wright’s (1960) book toward a more impairment-centered, individual coping framework. Increasingly, researchers focused on the impact of impairment on the individual’s emotional status and the well-being of his or her significant associates, her or his efforts to compensate for functional loss, and the performance of roles, such as worker, student, or family member, rather than on the contribution of society to the creation of disability problems (Eisenberg, Griggins, and Duval 1982; Fine and Asch 1988). Increasingly, explicit discussion of the social dynamics of disability in academic journals and books yielded, for the most part, to a growing interest in the process of intrapersonal psychological adjustment to disability.
Disability Adjustment as Adaptation to Loss
The disability adjustment literature is voluminous and has been dominated by various stage models describing the individual’s progressive adaptation to impairment-related loss, the stated or implicit goal of which is a return to a best approximation of “premorbid” levels of personality adjustment. The typical stages and their corresponding emotional states, such as denial, anger, depression, and acceptance, are still commonly referenced in disability curriculum and rehabilitation practice (see Livneh 1986 for an overview of major stage models). According to this framework, the individual’s inner experience of disability can be wretched or tranquil, depending on his or her current level of adaptation and its associated emotional state. The individual’s relationship to others is similarly mediated by his or her progress through the stages toward adjustment to disability. An individual who reaches emotional resolution and accepts the losses of disability is well positioned for interpersonal success. The person who denies or rails against the losses of disability is less likely to relate well to others.
After two decades of research designed to validate stage models of disability adaptation, however, there is little clinical or empirical evidence of an orderly or characteristic sequence of reactions to disability. In fact, a summary of empirical and clinical findings on adaptation to illness and disability recently compiled by two leading rehabilitation researchers (Livneh and An tonak 1997) reveals few conclusive results beyond the consistent discovery that emotional distress is a common (but not universal) initial response to disability and that it tends to diminish over time. The researchers report that rehabilitation clinicians and investigators are increasingly turning their interests toward a complex process of adaptation to illness and functional loss, involving changes in the body, body image, self-concept, and interactions between the person and the environment. It is interesting to note, however, that despite this encouraging indication that rehabilitation researchers are focusing more attention on social determinants of disability, Livneh and Antonak (1997) frame the following question as particularly deserving of more investigation: “How are persons with various chronic illnesses and disabilities affected by their conditions?” (p. xv).
Paradoxically, as the focus of research on the disability experience shifted from the external world to the internal emotional life of the individual, research methodology shifted from the subjective toward the objective—away from available experiential accounts toward the operationalization and standardized measurement of constructs such as adjustment. Studies that collected objective data from large numbers of subjects seemed to hold the promise of cross-sample comparison and generalizable conclusions that could not be drawn from small sets of anecdotal records. Standardized procedures beckoned the elimination of subjective bias, including the personal opinions of disabled subjects about their self-esteem and quality of life. Although there were exceptions, the major role of the disabled individual in research changed from key informant to object of study.
Robert Murphy and the Theory of Liminality
In counterpoint to the attenuation of subjectivity in disability research, however, persons with disabilities, empowered by the disability rights and independent living movements, began to accelerate their production and publication of experiential accounts in autobiographies, anthologies, and participatory research reports (Browne, Connors, and Stern 1985; Campling 1981; Carillo, Corbett, and Lewis 1982; Duffy 1981; Zola 1982). In this context, disabled anthropologist Robert Murphy (1990) published The Body Silent, his eloquent self-study of the disability experience. Among his many contributions and insights, some of which will be discussed in the next section, he linked the social experience of disability to the anthropological concept, liminality. For Murphy, liminality referred to the marginal status of individuals who have not yet passed a test of full membership in cultures that adhere to a strict progression through rites of passage. Such individuals, Murphy observes, are shut out of the formal social system until they prove worthy of membership. Caught in a transitional state between isolation and social emergence, they do not count as proven citizens of the culture. In a sense, they are sociologically dead and, therefore, considered socially dangerous (Murphy et al. 1988). The apparent solution is for society to sequester them and interact with them in ritualized ways, thus confining such individuals, no matter how successfully autonomous and productive they may become, to the “twilight zones of social indefinition” (Murphy et al. 1988:237).
Murphy argued that “liminality” was a construct superior to “deviance” or “stigma” in describing the disability experience. Whereas the phenomenon of stigmatization is predicated on a static behavioral or physical marker and differentiates little between the experiences of a multiplicity of stigmatized groups, liminality is grounded in cultural symbolism and allows for the processual, shifting nature of socially constructed meanings affecting particular social groups (Murphy et al. 1988). Furthermore, liminality implies not simply the failure to comply with a cultural standard, such as normality, but a pervasive, indeterminate limbo-like state of being in the world that is “the antiphony of everyday life” (Murphy 1990:135). This pervasive exclusion from ordinary life and denial of full humanity, Murphy believed, aptly characterizes the social experience of disabled people.
Evidence on the Social Experience of Disability
The preceding overview of “classic” theory has surveyed much of what has been thought by social scientists in the past half century about the experience of disability. This section examines what has been discovered about that experience, particularly with respect to social relations. Evidence from various disciplinary literatures and first-person accounts will be presented and discussed in relation to key components of theory.
Evidence of the Divide
Goffman’s (1963) and Davis’s (1961) thesis that relations between disabled persons and nondisabled persons are marked by strain, misunderstanding, and disconnection is supported by a wide range of data sources. Authors with disabilities, in particular, commonly treat this idea as a “given” that has been so firmly established by group consensus that it needs no further documentation or support. Robert Murphy (1990) described disability as a “disease of social relations” (p. 4), adding, “Social relations between the disabled and the able bodied are tense, awkward, and problematic. This is something that every handicapped person knows” (p. 86). Throughout his book, he elaborated on this theme. For example, he wrote of feeling a “profound sense of removal” from society, family, and friends; of a mental and physical “quarantine” imposed by society on disabled persons; and of disability leading to “social death.”
Summarizing the results of their interviews with disabled persons, Murphy and colleagues reported that “handicapped people of every condition complain that they act as if we were contagious” (Murphy et al. 1988:238), and wheelchair users know that in public places, they are commonly “noticed by everyone and acknowledged by nobody” (p. 239). Studies investigating communications between nondisabled and disabled interactants confirm patterns of avoidance, strain, and depersonalization (Asch 1984). Compared to communication patterns between nondisabled interactants, communication behaviors of nondisabled persons vis-à-vis disabled persons include abbreviated interactions, less eye contact but more staring, less smiling, more indicators of anxiety, more distancing speech patterns, and less information seeking about the other person (Fox and Giles 1996). Listing a variety of avoidant reactions that disabled persons commonly encounter from others, including turning away and ignoring, Adrienne Asch (1988) concluded that “studies of the behavior of the nondisabled toward the disabled demonstrate a variety of responses that, at the very least, hinder ordinary social interaction” (p. 159).
The empirical literature on perceptions of disability also generally supports Wright’s (1960) concept of “negative bias” in public and professional attitudes toward disabled people. Nondisabled persons’ responses to research measures indicate that they expect disabled people to be socially introverted, unstable, depressed, and hypersensitive (Emry and Wiseman 1987). Australian disability advocate Elizabeth Hastings (1981) lists prejudice as a major feature of the disability experience, evidenced by public expectations that disabled people are dependent and frightened. Such assumptions are resistant to disconfirmation because the public tends to discount as nonrepresentative of their group those disabled persons who behave counter to stereotype (Fox and Giles 1996; Hastings 1981). Studies indicate that nondisabled persons express less willingness to interact with disabled people and impute a lower quality of life to disabled people than do others with disabilities (Albrecht and Devlieger 1999).
Social distancing between disabled and nondisabled persons may be intensified when the disability involves communication (Albrecht, Walker, and Levy 1982) or emotional status (Esses and Beaufoy 1994) or if disabled individuals are perceived as contributing to their own misfortune. In this vein, a study of the multiple components of disability attitudes indicated that attitudes toward persons with depression and persons with AIDS are more negative than attitudes toward amputees (Esses and Beaufoy 1994). The investigators suggest that some of the difference might be caused by attributions of control over the emergence of the disability.
Interpersonal intimacy may be a critical variable in the quality of relationships between disabled and nondisabled persons. Murphy (1990) observed that colleagues who did not know him well before his disability seemed more uncomfortable in his postdisability presence than did his closer friends. However, he acknowledged that many disabled persons experience disturbed interactions with their most intimate associates, even family, and that this can be particularly damaging because family symbolizes refuge and support. Murphy et al. (1988) discussed the gulf between disabled persons and family members who lack knowledge of the social problems of disability, mentioning one informant in their study who preferred being returned to the hospital rather than staying at home because he found his parents’ lack of understanding of his disability experience extremely distressful. Other researchers confirm disabled people’s frequent experience of estrangement within their families. In writing about the embodied experience of disability, Toombs (1994) observed that strangers may be repelled by persons who use equipment or move awkwardly, but intimate associates who share the disabled person’s past “find it hard to adjust to the new self. The relationship has to be redefined, reconstituted” (p. 347). A sense of alienation within the family may be a particularly detrimental aspect of the disability experience for some individuals. According to DeLoach and Greer (1981), the reaction of friends and family to one’s disability is significantly related to self-acceptance. Li and Moore (1998) hypothesize that friends’ and family members’ difficulty in accepting a loved one’s disability may help explain why late-onset disability was associated with lower disability acceptance in their study than was congenital disability.
Although some studies suggest that negative disability attitudes may be amenable to the corrective influence of increased contact and familiarity with disabled persons, proximity and length of association may not necessarily engender congruence between insiders’ and outsiders’ perceptions of disability. Disparate viewpoints often persist despite opportunities for significant contact, not only in families but also among those who choose to affiliate with disabled persons. For example, some rehabilitation experts who have dedicated their lives to working closely with disabled people express the view, frequently disputed by informants with long-term disabilities, that functional limitations necessarily limit enjoyment of life.
Responding to the Divide
In addition to evidence confirming a common social disconnect between disabled and nondisabled persons, there is compelling evidence of disabled people’s motivation to bridge the divide. Cahill and Eggleston (1994) studied the experience of wheelchair users in public interactions using participant observation, interviews, and analysis of published autobiographical accounts. The investigators found that such encounters demand a good deal of emotional control from wheelchair users who must not only suppress their own frustration in response to public treatment but also help nondisabled persons manage their discomfort. Belying stereotypical images of disabled persons as weak and dependent, the investigators concluded that wheelchair users shoulder the primary responsibility for positive relations with others. They use humor to put others at ease, tactfully ignore others’ lack of tact, respond graciously to others’ intrusive curiosity, and routinely sacrifice their interpersonal equality to accept unsolicited help from others who need to feel superior through helping. In short, they expend considerable energy to help nondisabled persons feel positive about interacting with disabled people.
These findings suggest that disabled people work hard to smooth public interactions. The results are less clear in explaining why disabled interactants work so hard. Are they attempting to pass as acceptable to the nondisabled culture they covet, as Goffman (1963) theorizes? Do they wish to convince potential friends that they are, indeed, normal, as Davis (1961) proposes? Cahill and Eggleston (1994) uncovered information that may, at least, help explain why many disabled individuals are reluctant to forego their socially prescribed role and to assert their authentic selves: They have good reason to fear mistreatment. Wheelchair users who refuse help or express indignation over prejudicial treatment risk being identified as “ungrateful, testy, and uncivil” (p. 309). Some encounter threatening public retaliation. Although disabled people who work to keep their relations with the public peaceful often report that they feel torn between their inauthentic public persona and their genuine private feelings, most choose to bear internal stress rather than external confrontation.
To read others’ attitudes toward them, disabled persons often develop proficiency in observing and analyzing nonverbal reactions (Hahn 1997). Braithwaite (1990) interviewed 24 visibly disabled adults about their communication encounters with nondisabled people. The participants reported that many nondisabled persons were uncomfortable around them and expressed their distress through such behaviors as fidgeting, lack of eye contact, physical distancing, staring, expressions of sympathy, avoidance, or acting as though the disability does not exist. In response, participants deliberately employed strategies to promote their acceptance, such as talking about “normal things,” managing curious questions, and taking control of helping behaviors in ways that signaled their full personhood.
Nonvisible or partially apparent impairments are often associated with additional layers of social tension. British author and activist Sally French’s (1993) thoughtful narrative on growing up with “partial sight” discusses disability denial as a systematically learned mechanism of social survival: “By denying the reality of my disability I protected myself from the anxiety, disapproval, frustration and disappointment of the adults in my life” (p. 70). She describes the amount of hard work, discomfort, and self-denial that disabled persons tolerate to assure others that they are just fine. It is particularly difficult for others to grasp ambiguous disabilities, such as partial sight, where help may be needed in unexpected ways despite “normal” appearances. In such cases, disabled individuals may alter their behavior significantly to avoid disappointing or confusing observers, such as French’s reluctance to openly read a book in front of strangers who had just watched her use a white cane to cross the road.
Other nonvisible conditions, such as multiple chemical sensitivity/environmental illness (MCS/EI), are associated with a complex of public misunderstandings and attributions that contribute to social estrangement while adding to the inherent difficulties of the impairment. In addition to the stress of managing fluctuating, unpredictable, but debilitating episodes of lost function as well as the vigilance and hard work required to avoid situations that may aggravate functional difficulties, persons with such conditions must address public doubts about the legitimacy of their impairment (Gibson 1993). This may engender feelings of hopelessness, isolation, and self-doubt that widen the gulf between the individual and the social environment. Despite their commitment to narrowing that gulf, disabled people’s efforts to ease interactions with others do not always lead to hoped-for connections. Hastings (1981) describes the difficulty of reaching beyond surface relations:
Luckily, disabled people have usually learnt how to set other people at ease and steer them through the rough spots. However, we know that what else is going on in the stranger’s mind is harder to deal with, for what is going on is the underlying assumption that we are not as human as they are. (P. 110)
Nonperson Status and Other Ascribed Identities
Hasting’s (1981) frank and unsettling remarks prompt a critical question relating to the theories of Goffman, Davis, and Scott: Are disabled persons fated to receive and internalize denigrating identity ascriptions? On the basis of his own disability experience and his observations of others, Murphy (1990) concluded that acquiring a disability typically precipitates the loss of familiar social roles and the assignment of a negative identity, such as social burden, object of charity, perpetual dependent, or quasi-human. Marilyn Phillips’s (1990) analysis of personal experience narratives from 33 individuals with physical and sensory impairments led her to conclude that much of her informants’ experiences of disability were predicated on the cultural view of disabled persons as “damaged goods,” a socially assigned identity that they believed was perpetuated by the media and medical and rehabilitation systems. Some disabled writers suggest that no matter how capable and giving disabled individuals may be, they are likely to be viewed as weak, childlike, suffering, and needy (Karp 1999). Those traits, in turn, are directly linked to the individual’s impairment (Olkin 1999). Typecasting based on impairment places disabled persons in a defeating bind. As long as their impairment remains incurable, they become the incurably tragic—the dominant spoiled identity of disability.
The dilemma of identity for disabled people is arguably central to their well-being. Theories of personality development suggest that the harmonious integration of major aspects of an individual’s being into a signature identity allows that person to feel whole and valid (Gill 1997; Landau 1998). However, when individuals receive persistent messages that part of them is unacceptable, when others treat them in a manner that dismisses or contradicts who they are, or when they feel compelled to submerge their authentic selves to project a more acceptable image, they experience a sense of disintegration that can thwart self-determination and self-esteem (Gill 1994, 1997). French (1993) describes the impact on her self-image of being expected to appear and function as something she was not—namely, nondisabled:
The adults would also get very perturbed if ever I looked “abnormal.” Being told to open my eyes and straighten my face, when all I was doing was trying to see, made me feel ugly and separate. (P. 69)
Contradictions between personal and public identities are particularly burdensome and damaging to the self-concept. Studies of intellectually gifted young people, for example, indicate that they often feel pressured to conceal their intelligence to avoid being typecast as freaks by other young people. The price of belonging is high. Leading a dual life—smart on the inside, average on the outside—serves to alienate such individuals from everyone, including themselves (Gross 1998).
In certain ways, many disabled persons are forced to lead dual lives. First, they are repeatedly mistaken for something they are not: tragic, heroic, pathetic, not full humans. Persons with a wide range of impairments report extensive experience with such identity misattributions. Second, disabled people must submerge their spontaneous reactions and authentic feelings to smooth over relations with others, from strangers to family members to the personal assistants they rely on to maneuver through each day.
Although the public’s presumption of tragic victimhood tends to trump the authentic identities of most disabled people, this dynamic may be even more overwhelming for persons with impairments that affect communication or expression. Lacking a bridge “between inner and outer” (Ruybalid 1999), such individuals may have fewer options to bring their inner experience to the surface, signal their identity to observers, and forestall the tide of stereotype. Persons with nonvisible impairments, on the other hand, are faced with the omnipresent dilemma of deciding when and how much to reveal about their socially “discreditable” status.
There are strong indications, however, that many disabled people are no longer, if they ever were, captive receptors of stigmatized identity. Gelya Frank’s (1988) intensive anthropological study of individuals with “congenital limb deficiencies” documented their capacity to critique and oppose the negative attributions that bombarded them on a steady basis during the course of development. Instead of pining for normality or covering their stigma to gain acceptance from others repelled by their differences, her informants openly presented themselves in public activities and forged empowered identities that integrated disability into their sense of autonomy and wholeness. Frank interpreted her findings as a critical challenge to stigma theory.
Studies on the relationship between social categorization and self-concept of persons with developmental disabilities suggest that they, like Frank’s informants, can be aware of stigma without inevitably internalizing or even reacting to it (Finlay and Lyons 1998). Interviews with developmentally disabled persons indicate that although they demonstrate awareness of their labels when asked about them, they generally are not likely to describe themselves spontaneously in terms of disability. Although this tendency has been explained by some researchers as an example of psychological defensiveness against stigma or, alternatively, as the result of care-givers’ tendencies to shelter disabled individuals from knowledge of their impairment, others suggest that externally imposed labels may simply lack salience and utility for those living inside the experience. Furthermore, social identities based on disability can be viewed as fluid; whether they are accepted or rejected may depend on the social demands of any particular interaction (Rapley, Kiernan, and An taki 1998). Intellectually disabled persons, like everyone else, encounter a variety of positive experiences that may serve both to nudge disability from a central position in the self-concept and to fortify them against the impact of stereotyping and social devaluation (Mest 1988). Consequently, they may be more likely than outside observers to take for granted that they can have impairments and view themselves as whole or ordinary.
Transformation of Values
A pervasive theme in disability research and narrative is the transformative power of the disability experience. Disability generally disrupts the expected life course (Bury 1982) and, as Wright (1960) postulated, prompts a reassessment of norms and values. Reflecting on her own embodied experience of multiple sclerosis, Kay Toombs (1994) theorizes that disability represents “not simply an episode in the life narrative, but rather a major transformation of the narrative” (p. 345) and “a profound transformation of the self” (p. 338).
Preferences and values are not fixed but may differ dramatically between persons in different circumstances or cultures and may shift dramatically for a particular individual depending on alterations in life circumstances. Significant relationships, satisfying roles, and existential or spiritual meaningfulness of experience all serve to help individuals reorganize priorities, relinquish past reference points for normality, and find value in life with disability (Leplege and Hunt 1997; Olkin 1999). Research on life satisfaction of people who encounter functional loss indicates that they find positive meaning in the disability experience and adjust their perceptions and values over time in a manner that accords with their capacities and preserves satisfaction with life as it is (Bach and McDaniel 1993; Bury 1991; McMillen 1999).
This process was supported by a study that compared 325 chronically ill or disabled persons with 504 nondisabled individuals on the task of rating 82 “life values” on the dimensions of “importance” and “attainment” (Montgomery, Persson, and Ryden 1996). Although both groups agreed on the importance of most life values, the disabled participants assigned lower importance to relatively less attainable values involving health and mobility, such as the ability to walk. Stensman (1985) found that persons with mobility disabilities ranked functions such as “to walk” and “get dressed onone’s own” as less important than functions relatedto communicating, thinking, and relating socially. Moreover, their rankings of physical functions were lower than nondisabled persons’ rankings of the same functions. Kennis to and Sintonen (1997) found a similar pattern when they compared persons with spinal cord injuries and the general population in the assignment of values to life dimensions. A qualitative investigation of health beliefs of people with physical disabilities suggested that they had come to understand constructs such as health differently from nondisabled persons, de-emphasizing the biological and emphasizing subjective feelings (Watson et al. 1996).
These studies generally support Wright’s (1960) conceptualization of value change. In response to permanent disability, individuals stretch the boundaries of what is important to them. They place greater value on areas of life that are open to exploration and that they may have underappreciated before acquiring an impairment. They relinquish or redefine unattainable comparative-status standards, such as normality, that no longer have meaning, and they adopt new goals that fit their lives.
In addition to a transformation of values, there is growing evidence that many disabled people undergo a crucial cognitive or conceptual transformation. They change the way they understand and think about disability. According to Hahn (1997), a relatively uniform phenomenon across different people is their tendency to view the world differently after disability, leading to insights and understandings about major life experiences that differ from the views of nondisabled peers. Arthur Frank (1991, 1995) has written eloquently about the growing number of individuals who experience chronic conditions in a way that has transformed their worldview, in that they develop a keener perception of life’s details and a fuller understanding of the common human experience. This transformation becomes an essential part of their identity and connects them to others with similar experiences.
Increasingly, persons with disabilities from various backgrounds are learning to think about disability as a social justice issue rather than as a category of individual deficiency. Surveys indicate that disabled Americans who are young enough to have been influenced by the disability rights movement are more likely than their older counterparts to identify as members of a minority group—namely, the disability community (Longmore 1995a, 1995b). Many disabled individuals discover and adopt a social model framework both to conceptualize their own problems and to relate them to the problems of all disabled people as a socially oppressed group. This conceptual shift leads, in turn, to a critical shift in how they view themselves (Gill 1994, 1997). The informants in Phillips’s (1990) study, for example, reported experiencing an emancipatory impact on self-image of adopting social philosophies of disability. Their belief in social minority status was associated with their rejection of stigmatized status. The investigator observed that they had begun to disavow the desirability of normalization while affirmatively embracing “difference” in place of “deviance” (Phillips 1985).
De individualizing the problems of disability and learning to understand the social determinants of their devalued status reinforce disabled people’s tendency to feel valid and whole as they are. Applying Wright’s (1960) terminology to disability identity, these developments support disabled people’s efforts to “contain” impairment-related social devaluation and to prevent its “spread” to the entirety of their identities. These paradigmatic shifts in understanding disability also pave the way to identifying with other disabled people and entering into collective action against unjust attitudes and practices. In addition to mobilizing for political change, people with disabilities are organizing to set the record straight about who they are collectively. They are broadcasting their identities by developing and implementing far-reaching disability awareness education, excavating and celebrating disability history, engaging in media activism, and writing articles, books, plays, and television scripts about the disability experience. Most affirmatively, they are declaring positive identity through disability pride and disability cultural activities, including projects focusing on the peer mentoring of young disabled people.
Discussion of the Evidence
Multiple sources of evidence about the disability experience confirm the prevalence of a disturbing division of understanding between disabled people and nondisabled people in the world of social relations. In effect, many disabled persons spend much of their lives grappling with a sense of mistaken identity that dominates and diminishes their experience. Disabled people are aware of this; they write about it, talk about it, and regret it deeply. Simply stated, they want acknowledgment of who they are, and they seek this from family, acquaintances, and strangers on the street. When, instead, they repeatedly intercept entrenched misconstruals of who they are and what it means to be disabled, they swing into action to correct the wrong impressions and to reestablish their identities. They wage an exhausting struggle to be known. The stakes are high, for how can they be accepted for who they are unless they are knowable as they are?
Caught in the “Twilight Zone”
Although they know themselves to be full participants in the human community, with strengths, desires, foibles, and triumphs common to all people, disabled persons are typically viewed as existing outside the boundaries of common human experience. Like the protagonist in a science fiction story who is erroneously pronounced missing or dead because others cannot detect vital signs of his or her existence, many disabled persons contest vigorously the dismissal of their personhood. Sources reviewed in this chapter indicate that disabled people use much of their finite supply of energy and skills to signal their presence, their viability, and their humanity to those around them, yet in the social limbo that Murphy calls the “twilight zone” (Murphy et al. 1988:237), they may remain eerily unrecognized. In sum, a core element of the experience of disability is being seen as something you are not, joined with the realization that what you are remains invisible.
Arguably, in addition to psychological and social stress, the public’s misreading of the disability experience contributes to disabled people’s well-documented struggles with employment discrimination, educational segregation, and environmental barriers. A tragic victim, after all, is not likely to be considered a strong job candidate, a capable learner, a wise consumer, or an equal citizen of the community. Furthermore, the attribution of victimhood to disabled persons separates them from the greater social fabric that they want and expect to remain part of, notwithstanding their differences from social norms. Sufferers, however noble, are not likely to be welcomed as helpful neighbors, reliable friends, desired lovers, or competent parents or spouses.
Differences from Other Minority Groups
The dilemma of disabled people’s mistaken identity may seem at first no different from the social stereotyping of other marginalized groups. Although all forms of intergroup misperception may share common elements, four distinguishing features of the disability experience are noteworthy.
Public misperceptions of disabled people are embedded in a confusing mix of conflicting positive and negative emotions. Because open devaluation of disabled people would collide with prevailing values of protection and charity toward the afflicted (Murphy et al. 1988; Roth 1983), the public’s negative disability attitudes may be projected through a confusing blend of emotions, including admiration and nurturance. Consequently, disability prejudice is seldom expressed overtly in the way racial bigotry or antigay views are communicated (Hahn 1997). Nonetheless, paternalism taints relations between nondisabled and disabled people and reinforces the inferior position of the latter (Roth 1983).
In contrast to race and gender, negative ascriptions based on disability can be superficially linked to “real” human differences. Impairment-related problems, such as pain and troubling limitation, are part of the disability experience for many individuals and cannot be reduced to social construction. When such difficulties are overgeneralized or interpreted in isolation from other aspects of the individual’s life, however, they evoke a distorted wholesale disparagement of the disability experience (Asch 1998).
Disabled people’s problem of mistaken identity pervades sancta where most marginalized groups can expect to be understood. In contrast to racial/ethnic minority group members who generally share their marginalized status and experience with relatives, many disabled people feel isolated and typecast within their own families. Similarly, minority communities and progressive political groups are not necessarily shelters from oppression for disabled people. Disabled persons of color and disabled gay people, in fact, have reported marginalization within all of their minority communities: ethnic/racial, gay/lesbian/bisexual/transgender, and disability (Tsao 1998; Vernon 1998). Women with disabilities have reported that many progressive women’s groups who organize aggressively against racism, sexism, homophobia, and seemingly all dimensions of oppression nonetheless openly convey defamatory views of life with disability (Klein 1997; Morris 1991).
Unless they have developed a political or cultural consciousness that centralizes difference, most disabled people identify as typical. Disabled people generally lack preparation to be continually conscious of minority status and its life consequences in the way that growing up in a marginalized racial/ethnic community informs community members about racism. Moreover, most disabled people think of themselves as ordinary because impairments recede in importance as they are integrated into daily routines. Disabled psychologist Rhoda Olkin (1999) expresses this orientation when she says, “In our world abnormal is normal” (p. vii). It can be repeatedly jolting for individuals who identify as ordinary to be persistently categorized as extraordinary or pathetic by those whom they regard as peers, even intimates.
These four points underscore the ambiguity and isolation that pervade the social experience of disabled people. Like other marginalized people, they are targets of negative and inaccurate ascriptions. In contrast to other minority groups, however, they have few guideposts to define their social treatment and few supports to oppose it. They rarely encounter the clarity of contempt associated with racism and homophobia because others consciously suppress that sentiment, harbor mixed feelings, or both. Furthermore, disability ascriptions are not as clearly lacking foundation as they are for other marginalized groups because although it is true that disabled persons are not defined by their impairments, their impairments can be quite salient. It is more difficult to refute a distortion of fact than an outright fiction. Finally, in contrast to members of other minority communities, it is hard for disabled persons to grasp their dilemma because it is often perpetrated even by the persons with whom they identify and from whom they expect affirmation, not dismissal: family members, contemporaries, and fellow seekers of justice.
To be irrationally disdained by others, to feel it every day of your life, and to share that experience with both intimates and a substantial community are clearly horrible. That is the reported social experience of many minority people in encounters with the dominant culture. On the other hand, to be silently, smilingly dismissed as someone pathetic and strange and encounter dismissal even in cultural milieux you call your own is confusing and dispiriting. That is the standard social experience of disabled people in the nondisabled world they inhabit.
Suggested Directions for Inquiry
From all accounts, the problem of relations between the disabled and nondisabled worlds is not a small rift of communications but a deep divide. It encompasses both intellectual and affective components, in that it is based on misconceptions about the experience of disability and conflicting values between disabled and nondisabled peoples about what constitutes a worthy life. If the experience of disability transforms people, its social and functional presses make them different from most people who do not experience disability differently in their fundamental understandings about human difference and associated values. It will take more than an adjustment of expectations, sensitivity pointers, or a more tolerant attitude from either side to bridge this gap. It will take an honest appraisal of the problem, including its gravity, scope, and complexity, and it must start with a more coherent grasp of what is known and what needs investigation.
For future research to be useful, investigators will need to invite, not dismiss, the perspective of those who experience disability. Although it may seem absurd that anyone would need to argue on behalf of subjectivity in research on the disability experience, there are indicators that this recommendation needs articulation. In discussing the lack of progress in empirical work on disability adaptation, for example, rehabilitation researchers Livneh and Antonak (1997) call for more psychometrically sound operationalized measures that correspond to the researcher’s conceptualization of key constructs while minimizing “respondent reactivity.” They list strategies for bypassing the “biasing” effects of subject response style and sensitization, including the use of concealed observation, the use of deception about the purpose of the measures, and the adoption of physiologic measures in which the subject is an “inactive participant” (p. 451).
British disability studies scholar and activist Michael Oliver has criticized past sociological work on stigma for remaining too far removed from the lived experience of people with disabilities (cited in Rapley et al. 1998). Braithwaite (1990) reports that most previous research on communication between disabled and nondisabled persons has been limited because it was conducted exclusively from the perspective of nondisabled persons. Murphy et al. (1988) call for the analysis of disability as a symbolic system that, they assert, has been neglected partly because the perspectives of disabled people have been omitted. A number of researchers, many of them disabled persons, link the exclusion of the disability perspective to the dominance of the medical model in guiding research design (Asch 1998; Murphy et al. 1988; Reindal 1995, 2000; Toombs 1994). Murphy et al. conclude that the meanings of disability must be seen as culturally and historically changing rather than fixed in biology:
Such a new freedom of attitude is a precondition for the manumission of the disabled from the misunderstandings of their situation held by the public, by health professionals, and even by themselves. (P. 242)
The value of subjective measures lies in tapping new information about the experience of disability and in respecting the power of the disability voice, but such measures are often criticized when they conflict with conventional judgment (Brown and Vander go ot 1998). Asch (1998), for example, discussed a research report in which the investigators virtually discredited positive assessments of health-related quality of life reported by disabled persons (Tyson and Broyles 1996, cited in Asch 1998). Their responses were interpreted as “inflated” or influenced by denial, a skepticism that was not extended to the positive assessments of nondisabled subjects. Brown and Vandergoot (1998) found that subjective quality-of-life judgments might diverge considerably from external measures. For examples, persons with “severe” brain injuries tend to rate quality of life more favorably than do those with less extensive impairments. This relationship contradicts conventional wisdom predicting a positive association between functional status and life quality. An explanation offered to explain the findings is that persons with greater cognitive impairment may be less aware of changes in pre- versus postdisability functioning. This naïveté argument, however, fails to account for similar findings for other disability groups (Gill forthcoming).
It should be noted that the tide seems to be turning and that calls for participatory research are emerging in many fields. Rapley et al. (1998) report that anthropology and sociology have turned to qualitative methods and have accepted the primacy of lay knowledge, beliefs, and experience for informing researchers about embodiment. In an article recently appearing in the Journal of the American Medical Association, Leplege and Hunt (1997) point out that standard research and survey questionnaires, such as quality-of-life measures, may not capture critical elements of disabled persons’ experience and the meanings they attach to their experience. Regardless of their impeccable psychometric properties, the authors warn, measures that force the respondent to choose between alternatives that reflect not her or his actual experience but rather the professional’s framework for organizing that experience may inhibit the full discovery of critical information.
In privileging the disability voice, however, researchers must realize that the disability experience warrants multiple and complex representation. The experiences of disabled persons with intersecting minority identities predicated on race, gender, sexuality, and age must be included in efforts to expand theory and empirical knowledge in this area.
Investigating the Resisters
An aspect of the disability experience that has received little attention is the decision of many disabled persons to renounce the struggle for acknowledgment and acceptance from others who consistently fail to understand them. The recognition of others’ mistaken perceptions of them and their resistance to the negative views surrounding them is a common theme in disabled people’s accounts. For example, in a recent report of qualitative research on disabled persons’ perceived quality of life (Albrecht and Devlieger 1999), the following compelling statements from three informants appeared in just the brief transcript selections presented in the Results section:
I don’t care what others think when they see me. I live my own life and can do about anything. If I can do it, then what’s the difference? (P. 982)
People look at me with my chronic obstructive pulmonary disease and think what a poor bastard. I’m glad I’m not in his shoes. They don’t understand. Visually, you see an oxygen bottle, impairments and limits, but the spirit is boundless. (P. 983)
Other people can’t understand why I am so happy. They don’t have the same appreciation of life. (P. 983)
These sentiments ring with a timber reminiscent of statements found throughout disability narratives, such as the spontaneous statement of a participant in Phillips’s (1985) study, “There is nothing wrong with me!” (pp. 48-49), and radio/television journalist John Hockenberry’s (1995) declaration, “You must accept me as I see myself.” Concepts such as disability pride and culture, once controversial, are becoming mundane elements of the disability lexicon.
Although Goffman and Davis barely noted them in the 1960s, stigma resisters are a rapidly expanding breed that commands interest. How do they think about concepts such as disability and normality as they construct identity? What facilitates their disengagement from reigning cultural values and their adoption of alternative values, particularly regarding productivity, independence, and beauty? How do they avoid succumbing to isolation? What factors encourage or impede their affiliation with other disabled persons? What are the benefits of such affiliation? Are there core disability values or worldviews? Is there a disability culture? Hahn (1997) points out that disabled people have demonstrated remarkable strength and achievement in the face of environmental obstacles and social exclusion. He suggests that rather than conceptualizing disability as a case of loss, those who seek to understand disability should view it as an identity and as an experience that can engender creativity and an enhanced appreciation of commonly neglected aspects of everyday life. There is undoubtedly a wealth of information about values change, identity construction, resilience, and empowerment to be learned from those who decide they are valid and whole citizens of the human community despite failing society’s yardstick for functional and aesthetic acceptability.
Little is known about disabled people’s positive relationship experiences (Asch 1984). Despite the negative trends in the literature, many disabled persons have enjoyed salutary connections with nondisabled family members, friends, intimate partners, health professionals, and employers. In their narratives, disabled individuals describe key allies in their lives who seem devoid of disability prejudice but who know and despise it when they see it. They make the effort to learn who their disabled associates are in their full glory and their full ordinariness. In disability cultural parlance, these nondisabled friends and relatives are the ones who “get it.”
These relationships raise intriguing questions about disability and intergroup relations. What qualities of the individuals, social networks, and the interaction itself are important for sustaining such connections, bridging differences, and moving relationships beyond superficial acceptance? What are the defining features of genuine allies to the disability community? How are they found or developed?
The Place of Impairment in the Social Experience of Disability
By honoring subjectivity and remaining closer to the experience of disabled persons in their research, disability studies scholars cannot escape the realization that bodies matter. Whether grappling with pain and the unwanted limitations of impairment or reveling in the carnal expression of cultural aesthetic subversion, the disability experience is undeniably embodied (Hughes and Paterson 1997). A series of provocative articles and Internet discussions among disability studies scholars continue to criticize not only the traditional medical and rehabilitation models of disability but also the newer hegemony of the impairment (biological) versus disability (social oppression) binary.
Future research on the social experience of disability should examine impairment-related factors such as visibility, type of impairment (including those affecting communication, expression, control of movement), preventability, and age of acquisition in influencing public perceptions, attributions, and social interaction. The manner in which individuals process and incorporate their experience of impairment into public and personal identities and expressions of pride is also a promising area for exploration.
As disabled people warm to concepts such as disability identity, pride, and culture, they are reconstructing values about deviance and actively exploring rather than subordinating their interest in “physique.” They are exiting liminal twilight zones by conjuring new rituals of validation, and they are taking their bodies with them. They are building connections to each other purposefully—not merely clustering with costigmatized peers by default—exchanging fresh ideas and patinated stories as well as continuing political goals. Graciously, they are sending word of this out to the larger world as they go. Still working hard to be known, they continue to forge bridges in all directions: to the nondisabled world, to each other, and to the self.