A "hidden disability," one unapparent to outside observers, defies the outward social construction of disability. A narrative research approach is used to understand the process of personal identification (or lack thereof) with being "disabled." Self-narratives were elicited from three men and three women, ranging in age from 21 to 53 years who have had a hidden physical disability since before age thirteen. The conditions represented are: Juvenile Diabetes, Asthma, Juvenile Rheumatoid Arthritis, Epilepsy, Muscular Dystrophy, and Celiac Disease.
While persons with hidden disabilities are afforded a sense of anonymity, they must contend with different challenges, including learning strategic self-disclosure and impression management; when to disclose and make disability visible and when to "pass" and give society the impression of "able-bodiedness." The choice, to be or not to be disabled, has important implications for the way we conceptualize disability, and the concept of identity as a whole.
The impact of the identifier "disability" is entrenched in the storied experiences of either embracing or repelling it as a self-characteristic. Persons with a "hidden disability," one that is unapparent to the unknowing observer, make daily decisions about which identity to embody. They are constantly negotiating when, where, why, and how to disclose and adopt the disability identity or to "pass" and give society the impression of "able-bodiedness." These decisions have reverberating implications for one's whole self-concept and social relationships.
This study used a narrative research methodology to understand the identity processes of six adults who grew up with an unapparent physical medical condition. Through their personal, emotional, and insightful self-narratives, these individuals relay the complexity of disability identity. Their stories revolt against the pressure our society upholds to dichotomize, segregate, and place people into clear-cut categories, and reveal the multiplicity and malleability of identity.
Identity formation is a lifelong process (Dekovic & Buist, 2005; Todorovic, 2002). However, according to Erik Erikson's (1959, 1968) theory of psychosocial development, adolescence is the time period most focused on developing an identity. This process of figuring out 'who am I?' is affected by gender, culture, family, peers, socio-economic status, educational success, and other peoples' perceptions of physical characteristics. The existence of a hidden disability must play a role in this process, in light of the culturally normative standards (beauty, strength, energy, endurance) (Meissner, Thoreson, & Butler, 1967; Todorovic, 2002).
The idea that disability is central to children's and adolescents' developing self-concept is widespread and thoroughly researched (Bracken, 1996; Cacciapaglia, Beauchamp & Howells, 2004; Goffman, 1963; Goldberg, 1974; Grogan, 1999; Lansdown, Rumsey, Bradbury, Carr, & Partridge, 1997; O'Malley, Foster, Koocher & Slavin, 1980; Rumsey, 2002). Research on the difference between visibility and invisibility of disability in terms of its impact on self-concept, however, has yielded mixed results.
Johnston and Sinclair (1999) compared scores on perceived competence, social acceptance and self-worth of 173 nondisabled children and 74 children with disabilities (physical, developmental, and learning), ages 6 through 12 in Australia. Grouping the three very different subgroups of disabilities together was problematic due to their specific and distinctive impact on daily life. Separating out each disability, however, resulted in comparing the nondisabled group of children, who constituted 70% of the total sample, to subgroups that made up approximately 10% each. No differences were found between children with and without disabilities, or between children with visible and hidden disabilities.
Wolman, Resnick, Harris, and Blum (1994) found results that contradicted those from Johnston & Sinclair's (1999) study. Using the Adolescent Health Survey, they focused on 3333 seventh through twelfth grade students from Minnesota, slightly over half of whom had a chronic health condition, such as cerebral palsy, muscular dystrophy, arthritis, scoliosis, diabetes, or epilepsy. Comparing results on emotional well-being, general worries, and body image concerns, students with chronic conditions scored consistently lower across all three variables than their nondisabled counterparts. No differences were found between those with visible and invisible conditions, implying that self-concept is affected negatively by disability, regardless of the obviousness of the condition.
Similarly, analysis of surveys from 256 young adults between the ages of 20 and 24 with various congenital, musculoskeletal, and sensory chronic illnesses and disabilities revealed that the emotional distress of disability was related to the impact of the condition on daily life, the unpredictability of symptoms, and the predicted prognosis of the condition, rather than the visibility of the condition (Ireys, Gross, Werthamer-Larsson, & Kolodner, 1994). The sample was selected using an age-stratified random sampling method from a 1200-person sampling frame consisting of adolescents who had accessed state programs for Children with Special Health Care Needs in two Midwestern states. Thus, results cannot be generalized because the sampling frame is only representative of children and adolescents with chronic illness and disability who accessed state services.
Looking specifically at the impact of visibility on adolescents' self-concept, Meissner et al. (1967) surveyed students at three high schools in Wisconsin and found that the more visible the disability, the more interpersonal challenges were faced. Similarly, Goldberg (1974) found, among a sample of 48 children between the ages of 11 and 15, that congenital heart disease, a hidden but limiting condition, had a less deleterious impact on social adjustment than the effect of facial burns, a visible impairment without physical limitations. It is necessary to note, however, that these studies were conducted more than thirty years ago.
In direct contrast to the results of both of these studies, Zahn (1973) found, through surveying 2454 randomly selected disability benefit applicants, that social interpersonal relationships of persons with a hidden disability are more strained than those of persons with visible disabilities, due to the doubt and suspicion surrounding one's disability status. Livneh, Martz & Wilson (2001) surveyed 97 sophomores at one community college and found that people with a hidden disability tend to experience more emotional distress than those with visible manifestations of disability, because of the omnipresent anxiety about possible discovery.
An important and troubling aspect of Ireys et al.'s (1994), Meissner et al.'s (1967), and Livneh et al.'s (2001) research is how the variable, visibility, was constituted as dichotomous. Students were, in effect, forced to choose between a 'yes' or 'no' answer, when it is possible that their perception of visibility of their condition varies depending on a variety of factors, like symptomotology, medication, time of day, clothing, or activity requirements. To account for the experience of variation across conditions in quantitative research, visibility would be more appropriately framed as an ordinal variable.
Using a four-point variable for visibility, O'Malley et al. (1980) surveyed 116 randomly selected Caucasian adults who had survived cancer before age 18. This study is relevant to understanding hidden disability in that it examines variations in obviousness of impairment in relation to psychosocial adjustment. It is, however, important to keep in mind that cancer survivors often may not experience lasting physical limitations. It was found that the obviousness of physical impairment occurring as a result of cancer treatment was not significantly related to current psychological adjustment.
Beck, Nethercut, Crittenden, and Hewins (1986) surveyed 31 young adult survivors of end-stage renal disease found results that corroborated with Meissner et al.'s (1967), revealing that increased visibility of the condition yielded less social maturity and less identity stability. Although a three-point variable for visibility (immediately visible, visible only when not clothed, no visibility) was used, the way in which visibility was measured was problematic for the study of self-concept. Rosenberg (1979), who's Self-Image Scale the authors used, asserts that the self-concept is made up of three aspects — how we perceive ourselves, how we would like to perceive ourselves, and how we present ourselves to others. In this study, two outsiders rated visibility; the researcher and a clinician familiar with the participant through his or her medical involvement. While inter-rater reliability was high (0.85), to fully understand self-concept, it is imperative that self-report be taken into account. Additionally, because of the nature of end-stage renal disease, the visibility variable is confounded with the duration, severity, and prognosis of the illness.
While empirical research sheds light on the comparisons between effects of apparent and unapparent disability, much of what we know about the impact of hidden disability on identity stems from qualitative research. Charmaz (1983, 1987, 1990, 1991, 1994a, 1994b, 1995, 2002), one of the leading voices on the impact of chronic illness on adult identity, has used a grounded theory approach to analyze multiple in-depth interviews conducted over the course of five to ten years with 55 people with serious chronic illness. The majority of her participants were middle-aged, employed, and married, and the knowledge gleaned from their experiences was based on predominantly adult-onset chronic illness, such as heart and circulatory disease, cancer, emphysema, adult-onset diabetes, chronic fatigue syndrome, rheumatoid arthritis, lupus, mixed connective tissue disease and Multiple Sclerosis. Despite the fact that her research is based solely on the adult experience, rather than that of young people, she provides a framework for understanding gender differences in the way identity is impacted by disability, and disclosure and concealment decisions regarding unapparent conditions.
Park (2000) explored the role of gender within the experience of hidden disability, through a mixed-methods study. By surveying 193 people with hemophilia in New Zealand, and by interviewing and observing 80 of those participants, she discovered that hidden disability and gender role expectations of males interact in socially devastating ways. Adult and adolescent male participants recounted similar memories of ignoring medical sanctions to avoid exclusion from the fundamental socialization inherent in participation in rugby, a culturally recognized symbol of masculinity in New Zealand.
Identity is so much more than simply who we are — it is with whom, when, where, and how we are (Minh-ha, 1992 cited in Woodward, 2002). Identities, multiple and changing, are expressed through how we, as human beings, understand our experiences and integrate them into our story. Understanding how, when, under what circumstances, and to what consequences one chooses to conceal or disclose an unapparent medical condition is inextricably linked to understanding identity.
Research Methodology and Analysis
Participants included three men and three women between the ages of 21 and 53, each of whom had been experiencing symptoms, since age thirteen or before, of an 'unapparent physical medical condition'. Because of the particularity and specificity of this population, it was necessary to implement a creative snowball sampling design. Many medical conditions and disabilities are represented by overarching organizations that fundraise for future research, advocate for comprehensive health care and advances in medicine, and create awareness about the condition itself. I marketed this project through organizations focused specifically on hidden disabilities that occur before adolescence by having my study advertised in publications, chat rooms, and emails that reach many connected members. This method yielded three participants. I also advertised through the Society for Disability Studies (SDS) email listserv, which connected me with one participant. I was, however, equally as interested in people who may not identify as 'disabled' and who may not be connected to support services. For this reason, I used the power of word-of mouth, through the help of my extensive network of colleagues, mentors, and acquaintances. This process joined me with two participants. It is, of course, important to bear in mind that the very aspect of self-selection may reveal the willingness, and even the desire, to share the personal and emotional narrative.
Through a face-to-face two-hour tape-recorded guided conversation, I solicited the unfolding of the participant's "story" prompted by the question, "Tell me about what your life has been like living with (specific condition), from the beginning." Asking this general open-ended question prompted storied responses, allowing them control over the direction of the narrative they shared (Polkinghorne, 1995). These stories reveal how participants' selves are crafted, offering a window into the constructed 'disabled' or 'nondisabled' identity (Barone, 2000).
Soon after the first interview, each participant received a copy of the complete transcript and had the opportunity to add or delete any aspects of their narrative. I communicated via email, telephone, or face-to-face with participants after they read the transcript to inquire about their reactions to reading the transcript and their response to my preliminary understanding of specific motifs that were emerging through the data collection and analysis process. In this way, participants joined with me in the construction of the results. Together we tried to answer the question, "How does an unapparent medical condition affect identity?" and "How are self-disclosure decisions negotiated?" Several participants fervently inquired about what the other participants said, and whether their own story differed or aligned with others' stories. In this process, the participants and I together embraced the multiplying questions that transpired through discovering similarities and uniqueness within the experience of hidden disability.
Narrative Research Methodology
Using narrative research methodology to explore the hidden disability experience has theoretical, political, and social significance. Buried under the generalizations and stereotypes of the dominant culture are stories that frequently go unheard (Saleebey, 2006). A narrative research approach provides a suitable way to explore, discover, and understand these silent/ silenced stories (Clandinin & Connelly, 2000). A narrative approach is particularly fitting for research with persons with a hidden disability as they are constantly telling and retelling their story when they are expected to explain in a comprehensible way 'what's the matter?' or to justify requests for accommodations when they appear 'normal' (Mollow, 2004). Narrative is appropriate for understanding identity, since the very act of creating, telling, revising, and retelling our story enables us to discover, know and reveal ourselves. Our narratives are our identities (Polkinghorne, 1991).
Analysis of narratives was the form of narrative research utilized because the participants expressed the need for knowing what they had in common with other persons with a hidden disability. Universal features of participants' stories are illuminated by breaking the participants' overall narrative into paradigmatic categories, allowing for common themes (key linkages) to emerge across the collected stories (Polkinghorne, 1995). These key linkages were classified as belonging to an overarching concept, constructing categories of central significance (Erikson, 1986). The developing relations between concepts and categories gradually moved the research toward an overall understanding of living with a hidden disability.
Three participants identified as Mexican-American and three identified as Caucasian. Four identified as Roman Catholic, one as Jewish-Atheist, and one did not specify a religion. Three were living in the southwest region of the United States, two in the northeast region, and one on the west coast. The "hidden disabilities" are represented as follows: William has Muscular Dystrophy, Brian has Type I Diabetes, Keith has Asthma, Victoria has Juvenile Rheumatoid Arthritis, Rosalina has Celiac Disease, and Angela has Epilepsy.
The Disability Identity
"Disability is a strong word"
Persons with a hidden disability often work hard to curtail knowledge of the existence of impairment and to minimize its impact, and frequently do not think of themselves as disabled (Cavet, 1998; Olney, Kennedy, Brockelman, & Newsom, 2004). When publicly identifying as a person with a disability, they are often confronted with disbelief, minimization, or hostility. Because limitations are not immediately obvious, their struggles are assumed to be less real or less difficult than the struggles of people with more apparent disabilities (Gill, 1998). The hidden disability experience, thus, falls in the misunderstood gap between the dominant disability paradigms, the medical model and the social model.
The medical model views medical conditions and disabilities as individual deficits that should be "fixed" through a diagnostic classification of symptoms, medical interventions, and drug regimes (Gilson, 2002). This perspective is centered on the idea that there is a certain standard that human beings should meet in terms of how they look, act, and what they should be able to do. Because disability is seen as a problem within the individual, the responsibility of overcoming societal, architectural, and legal barriers is placed on the person with the disability.
In recent decades, people with disabilities have joined together to rebel against the assumption that people who deviate from norm-based standards are lacking, incomplete, and flawed (Stone, 1995). The disability rights movement pushed forth a redefinition of disability: society itself is the creator of disability and the obstacles that persons with disabilities face are constructed through societal attitudes, policies, and practices. It is these societally constructed barriers that determine adverse social, political, and economic consequences for persons with disabilities (Rothman, 2003).
The coming-of-age of the social model has resulted in perceiving disability as an element of human diversity around which people have formed a proud sense of community (Brown, 2002). Joining with the disability community provides the opportunity to change self-oppressive views, to embrace the disability identity, to value personal experiences, to learn from others facing similar struggles, and to fight together against institutional oppression (Atkins & Marston, 1999; Hahn, 1997). Identifying as disabled with others, thus, becomes a means to empowerment and liberation.
William, who has Muscular Dystrophy, expresses distaste for the word 'disability' itself.
I don't like the word. I don't like what it means. I think it's something very visceral about the word "disabled," that when I'm thinking about it, I don't think of myself as disabled. I don't know how to verbalize it; it's just something very visceral. I don't identify with it.
The ideology of the social model is dependent on individuals embracing their disability as part of their identity. Like William, many individuals with a hidden disability repel rather than embrace 'disabled.' Identifying as such often depends on many economic, social and personal factors, only one of which is a diagnosis of a specific disabling condition. These factors include physical appearance, employment status, accommodations, and services needed and utilized. Also vital to claiming or rejecting disability as an identifier are individualized ideas of what 'disability' and 'disabled' mean (Olney & Kim, 2001).
Brian, who has Type I Diabetes, rejects the identifier "disabled" based on his idea of what limits it encompasses.
If you have a disability, there's things you can't do. I think people with disabilities are not able to climb Mt. Everest, as an example. I can do that. But I've just got to do it with a lot more caution than another person. I'm never like, "I can't do that, I have a disability." I'm like, "I have a disease, but I can still do that." And if it ever came to a point where, I guess if I had to amputate my leg because of it, I might have to change my definition of a disability. I define a disability as something you can't do because you're physically unable to do it 'Disability' is a strong word.
Understanding the word disability as deficit-based, as Brian does, is associated with the idea that something is lacking or abnormal and is entrenched in the medical model. The medical model has provided the dominant framework for thinking about persons with disabilities for the past couple hundred years and it continues to be influential in shaping the thought processes of people with and without disabilities (Rothman, 2003). For persons with a hidden disability who interpret disability in this way, like Brian, it seems counter-intuitive to build an identity around what they can't do, rather than what they can.
Keith, who has Asthma and is currently involved in disability studies, describes how the disability community has attempted to adopt the word disability.
The term "disability" is an okay thing now. Yeah, disabled people still fight about "person with a disability," and "disabled," and all that stuff, but that's our own little club fight. There's still the perception problem, but as a society, we're more aware of disabilities.
Indeed, language is powerful and just one descriptive word can shape the public impression of a group of people as a whole (Olkin, 2002). The power words have to influence the way society understands and acts renders the issue of language one of the first battlefields that revolutionary minority groups tackle in seeking to claim control over their lives (Barnes, 2004; Coopman, 2003; Zola, 1993a). For the disability rights movement in the 1970s, empowerment grew out of asserting control over communication about disability. Rather than repelling the word disability, this community strove to make it politically correct and culturally accepted (Gilson, Tusler, & Gill, 1997).
Clashes persist over appropriate language and there are no universally agreed upon definitions of disability (United Nations Enable, 2003). Siebers (2004) considers this debate in terms of semantics, quoting William James: "If we look at an isolated printed word and repeat it long enough, it ends by assuming an entirely unnatural aspect. Let the reader try this with any word on this page. He [sic] will soon begin to wonder if it can possibly be the word he has been using all his life with that meaning" (1890, p. 1315). Take William James' advice and repeat 'disability' until it sounds foreign to the ears and feels outlandish on the tongue, prompting deconstruction of the word itself. The prefix dis means absence of, opposite of, or deprived of (American Heritage Dictionary, 2000). Putting the word back together leads to the conclusion that a person with a disability has absence of ability, encompasses the opposite of ability, or is deprived of ability. People with disabilities are thus wholly defined by what they are not. Is it any wonder that the label "disabled" carries such negative connotations or that a person feels defined by his or her disability? William expresses these concerns.
It's so complicated, because what happens to you when you identify with being disabled? What are you internalizing? Are you internalizing ? On the one hand it's good to integrate, accept, but on the other hand, what does it mean to consider yourself disabled and call yourself disabled?
Why is internalizing a descriptor like 'disabled' so disconcerting? Victoria, who has Juvenile Rheumatoid Arthritis, describes the difficulty she had accepting a disability identity in adolescence.
For a long time I didn't want to say I'm 'disabled.' I don't want to have anything wrong with me, but yet, look in my cabinet — I take fifteen to twenty prescription pills a day. I obviously have a lot of medical issues. And I struggle daily. It's hard for me to put one foot in front of the other sometimes. It's hard to move. It gets that bad. But I think when I was younger it was harder because I didn't want to be disabled. I didn't want to be. Now I think I'm more accepting of it because I'm more mature, experienced.
Victoria's identification as disabled changed as she accepted the reality of her limitations. This gradual process of acceptance for individuals with a hidden disability, like Victoria, is no doubt affected by our culture's obsession with the physically perfect body. The myth of the perfect body emits insidious pressure to strive to be more 'normal;' indeed concealing bodily imperfection is a multi-million dollar industry as people strive towards elusive flawlessness (Corbett, 1994; Stone, 1995). The rejection of the word 'disability' is a byproduct of growing up entrenched in the attitudes and behaviors that the very word symbolizes (Zola, 1993a). Such ableist ideas, the ingrained belief people with disabilities are inferior to nondisabled people become ingrained by adolescence and can resulting in increased difficulty in accepting oneself as disabled (Joachim & Acorn, 2000).
"I'm more in the middle"
Rosalina, who has Celiac Disease, describes how she takes a stance between the two extremes, those who reject the label and those who embrace it.
I think most people with this disease are really resistant to being grouped as 'handicapped.' There are the extreme people with it saying, "Woe is me, I have this disability" and "Oh I'm so disabled." When people do that, it kind of makes me push away, like, "It's not a disability, you just need to be more responsible and accept what it is, and deal with it as a diet and not try to look at it as such a handicap." I think I'm more in the middle, where it is a disability. It is something that is an actual disease. But it's still what you make of it, so it's not. You can look at it more positively where it's just your diet. It's just food. It's a way of life, and this is the way I've adjusted.
Persons with a hidden disability, like Rosalina, may feel that they fall on the spectrum between disabled and nondisabled. Conceptualizing ability and disability as a continuum is unsupported by both the disability community and nondisabled people. In the attempt to unify a previously fragmented group and to push for recognition of people with disabilities as a minority group, the disability community encouraged the dichotomization of this identity category: either/or, disabled/nondisabled, in/out (Linton, 1998; Olney & Kim, 2001). The spectrum metaphor poses a threat to the disability community's endeavor to be demarcated as a minority group (Gill, 1994; Linton, 1998). This ideology believes that unless the two groups are clearly separated, the social oppression that people with disabilities face can not adequately be recognized (Gill, 1994; Samuels, 2003). "Visibility becomes paramount in differentiating the 'oppressed' from the oppressors" (Altman, 1994, p. 94). As a result, people who appear to be nondisabled are cast into the role of oppressor (Linton, 1998), rather than welcomed as a community member.
Conversely, does a body without a single impairment exist? Defining disability by polarizing 'disabled' and 'normal' encourages the exaggeration of difference, making disability seem exceptional and uncommon (Abberley, 1987). Visibility of disability is central to characterizing disability as unusual (Goffman, 1963). People with disabilities serve as a constant reminder that illness and discomfort are part of the life experience, especially as our bodies age (Zola, 1988; Stone, 1995). William recognizes this phenomenon.
I see how people view people who (have visible disabilities). I see how people stare at my mother when she's in a chair. She's very young-looking, so people look at her. People stare. It's just in their social consciousness, being handicapped. It's such a taboo, really. It's something that people just stare at it, and the way that people stare at it, there's something so powerful about it. It's invasive. The stares are almost like, "You're reminding me of something that could happen to me so I'm looking at you like you're a freak."
The push for clear demarcation between people with visible markers (disabled) and people without visible markers (assumed nondisabled) is a defensive strategy, employed by the natural tendency to deny human frailty (Davis, 2005). To admit and acknowledge the reality of just how vulnerable we all are to illness and disability is disconcerting and unpleasant. Certain identity characteristics, like racial, ethnic, and gender categories, are considered fixed and unchanging. Disability, however, is an identity category any person can enter at any time. "Normals [sic] know that their bodies are frail and vulnerable, but when they can stigmatize the physically disabled, they feel a lot better about their own human weakness" (Nussbaum, 2004, p. 219). Segregating people with disabilities by defining them as 'Other' allows nondisabled people a false comfort of everlasting health, strength, and well-being.
"We don't have a box"
Symbolic interactionists assert that social information about identity is conveyed through visual signs or symbols, which provide a means for classification and a window into one's identity (Blumer, 1969). How the body looks, what it does, how it acts, and how others experience it is a fundamental point of reference (Gabel, 1998, p. 12). The body is replete with political and cultural meaning interpreted by how closely one follows the norm (Swain & Cameron, 1999). Thus, identity begins with the body. Other people's perception of one's body imposes or denies a disability identity on a daily basis.
Dichotomous categorizations like 'Disabled' or 'Other' and 'Normal' or 'Able-bodied' place people into either/or identity categories that quantify and rank (Atkins & Marston, 1999). Identity categories do not exist outside power relations (Foucault, 1977). The human tendency to dichotomize identity assures one's own place in the hierarchy (Atkins & Marston, 1999). Persons with a hidden disability quickly learn to negotiate the liminal in-between space between 'Disabled' and 'Nondisabled'.
When the stigma attached to identifying as disabled can be an optional part of life, a constant decision-making process is in effect: to disclose or to 'pass.' Passing, a word that historically has referred to race, class, gender or sexual orientation, is the act of presenting oneself as a member of the dominant privileged group, in this case concealing a disability and giving society the impression of able-bodiedness (Ginsberg, 1996). The ability and act of passing calls into question the way identity categories intersect, overlap, construct, and deconstruct one another, challenging the foundation of identity politics, upholding the notion that identities are fluid, multiple, and contingent (Ginsberg, 1996; Leary, 1999; Schlossberg, 2001). Angela, who has Epilepsy, describes her experience of having a fluid and changing identity, as a person with a hidden disability.
It seems like the American norm is strong, normal people. And it's like, what's normal? People think that people with disabilities aren't normal. But what people don't get is that having disabilities is just as normal as not. You just don't realize it. There's a large group of people and you see them and you know they're disabled. But I'm talking about, like, us, who you don't know. It's just as normal. If you think about it like that, well, if you want to say what's normal, then we're not normal because we don't fit into a box. Because there's people without disabilities and people with disabilities, and there's us in the middle and you can't tell. We don't have a box.
The binary identity structure - either/or, disabled/nondisabled - is not fitting for Angela, or people like her, just as it is not appropriate for others who float in the space between, like those who identify as bisexual or bicultural (Kalsi, 2003; Rust, 1995). Angela's observation that persons with a hidden disability "don't have a box," incites the idea that might be more appropriate to look at persons with a hidden disability as bi-abled. Bi-abled people are a population that transforms their identity and needs depending on the situational context. With a foot in both the nondisabled and the disability worlds, they belong to both and fit completely into neither. Persons with a hidden disability serve to uphold the notion that the body is constantly evolving and changing and thus, the disability category is a fluid and porous one.
"I didn't want to be different"
It is during adolescence that we develop a conscious idea of ourselves (Erikson, 1959). Brian expresses how he felt in adolescence.
Every new situation that I was put in, I wasn't that open about saying it. Like, high school — no way, never said it. I'd tell my coach but I wouldn't tell other players, I wouldn't tell kids in school. I didn't want anyone to know. For some reason I thought they would think different of me. I was so embarrassed about it. I have no idea why... Actually, it had to do with, "You don't want to date me?" They probably don't know what it is. They'd probably be like, "You have what? What is that? Is that a disease?" And I'm like, "Yeah, kind of." Maybe it was just me. It could have all just been in my mind that that's what they were thinking. Maybe they really were okay with it, but I always assumed that they thought I was weird. And that's why I never told anyone in the first place. I never wanted to be different. Especially at that age, you don't want to be different, you want to blend in with everyone else, you don't want to stand out and be like, "Look at me, I'm real special." At least for me, when I was young I wanted to be like everyone else.
Hypervigilance of bodily performance and bodily appearance is common for all adolescents, but particularly those with an unapparent medical condition, like Brian. Even the slightest variation from the uniform norm may induce the feeling of shame, an emotion that can negatively impact the developing self-concept. The pressure to conform is most intense during the teenage years and anything that singles out an adolescent as different from peers is likely to be resisted (French, 2004). Day to day interaction with a nondisabled world exposes adolescents to ableist social norms and values, which become internalized and can arrest the process of accepting oneself as disabled (Goodwin & Staples, 2005). Victoria describes her sentiments, feeling torn between her desire to fit in and her need for accommodations.
I didn't want to be different. I didn't want anybody to think there wasn't anything I couldn't do. I didn't want anybody to treat me differently or special. But that was kind of hard too because sometimes I had to be; I had to have accommodations. But I didn't want my friends to treat me any differently. I didn't want them to be like, "Oh, Victoria." I wanted everybody to think I could do anything they could do, that I was strong and tough and I wasn't weak just because I was sick.
Victoria is clearly alert to the impressions and reactions of others. Those with unapparent medical conditions, like Victoria, often go out of their way to avoid showing any sign or symptom of the disability. During this phase of dramatic physical bodily change, adolescents use their peers' body shape and size as a basis for comparison against which to measure themselves (Goodwin & Staples, 2005). Adolescents with a hidden disability, thus, strive to reach standards set by nondisabled role models and peers. Such an ideal self, for a physically limited body, is unattainable. Engaging in behaviors or situations that might reveal a symptom may be avoided. While adolescence is a time filled with anxiety about feeling accepted, teens with a hidden disability will often go to extreme lengths to conform and appear 'normal' (Butterworth, 1995).
"Not even consciously, but it's so hardwired"
The option to choose when to pass and when to disclose can be both a blessing and a curse, resulting in a constant private struggle to sustain both a private and a public self (Cavet, 1998). Victoria visibly winced as she recalled how she drove herself to join in physical activities with other nondisabled children.
So there I was, in P.E. I was still trying. You know when they have you run the mile? I was out there running the mile with all the rest of the kids even though it hurt. I was like the second to last kid, but I was happy because I did it. And I would do dance on the hardwood floors and every time, I knew it hurt. Every time you hit the floor with your feet, you went, "Ow! Ow! Ow!" But I wanted to do it because I wanted to be like my sisters. I didn't care. It hurt a lot. Oh my God, it hurt so bad. Because you'd have to wear little ballet slippers with no padding underneath and you're hitting your bones against wood and it hurt. And, of course, I was having a lot of deformities in my feet and in my knees and everything. You're moving everything when you dance. But I didn't care.
Despite intense pain, Victoria pushed herself to fulfill the same expectations as her peers. For persons with a hidden disability, upholding a nondisabled public presentation often means hiding discomfort in the pursuit of appearing able-bodied. Limitations of the body are often ignored or minimized, frequently leading to exacerbation of the condition (Matthews & Harrington, 2000; Fitzgerald & Paterson, 1995). Like Victoria, persons with a hidden disability often go out of their way to avoid showing any sign of the disability. They may attribute symptoms to something other than disability, withdraw from certain people or places, and avoid engaging in behaviors that might reveal a symptom (Fitzgerald, 2000; Joachim & Acorn, 2000). They may be reluctant to access any accommodations because this draws attention to the existence of a disability or because their past requests have evoked skepticism (Cavet, 2000).
Persons with a hidden disability learn the interpersonal skill of 'impression management' (Goffman, 1963), controlling the perception of others as self-disclosure decisions are negotiated. Keith aptly refers to his impression management strategies as "little survival tricks," which can become so deep-rooted that passing behavior becomes second nature. Having a sense of control over the projected image of self, private information, and public identity can increase self-esteem and sense of autonomy (Lynch & Gussel, 1996).
Whether passing is deliberate or not, maintaining the able-bodied public persona requires copious amounts of energy. Even in adulthood, Victoria's uneasiness about accessing accommodations lingers as she cycles between disinclination and willingness to utilize accessible parking access.
I think I am more comfortable now with my disability, versus what it's been in the past. In the past I could be hurting so bad, I could be pretty much not able to put one foot in front of the other without extreme pain, but I would not — it was my stubbornness — I would not park in the handicapped space even though I had (a placard). I would walk because I was full of pride. And because I wouldn't want to deal with somebody questioning me. I'd always have the mentality that there was somebody who needs it more. Those are there for someone like me, but I always thought there was someone else who might need it.
It is common for persons with a hidden disability to feel a sense of guilt, of being a 'fraud' for identifying as disabled (McMullin, 2003), viewing the disability as less legitimate than one that is visible and assuming that she or he is not as entitled to accessibility accommodations, the way Victoria describes. In this way, persons with a hidden disability may find themselves caught in a twist of irony, limiting their own independence because of reluctance to access the resources and accommodations they need to maintain a nondisabled appearance.
To Tell or Not to Tell
"It's always that elephant in the room"
The reality of a disability is more likely to be believed with a symbol that communicates a disabled identity (Fitzgerald & Paterson, 1995), and persons with a hidden disability lack such cues. William elucidates this sentiment, as he contemplates the possibility that his condition will become apparent as he ages.
In some ways I feel like, the more obvious it is, maybe the more of a relief it will be. Just to not feel that I can hide it anymore. Or that I want to.
Such a sense of ambivalence is comprehensible. Like William, persons with a hidden disability may simultaneously wish they had no choice but to use a visible aid that would indicate disability, and feel grateful they do not have to publicly claim disability identity through the use of such aids (Brown, 1999). Park (2000) interviewed a young boy who was struggling to negotiate the demands of hegemonic masculinity with the restrictions of hemophilia. "I'd rather have my legs cut off so people could see it," (p. 41) he said, expressing the desire for a blatancy that would convey that he would participate in sports if he could. This complex longing can result in internal dissonance (Samuels, 2003).
Without the visible signifier of disability, each new encounter requires one to make a decision (Clair, Beatty & MacLean, 2005; Vickers, 2001): "to display or not to display; to tell or not to tell; to let on or not to let on; to lie or not to lie; and in each case, to whom, how, when and where" (Goffman, 1963, p. 57). William describes how emotional each disclosure was.
Telling people about it was a huge thing for me. And it was really intense. It was really hard each time. Telling them was like letting them into my world. Because I started feeling like I had two identities. I had the identity that I rejected and then I had this other identity that — my internal world — and so it was very isolating. So telling people, it really felt like it was opening this door and letting them in and making myself vulnerable It depends on who the person is, it depends on the situation. But it's always there. It's always that elephant in the room. And it's always something that's on my mind.
Sharing information renders an unapparent condition visible, identifying a person as being different from others. This can be a liberating process, synthesizing personal and public selves (Myers, 2004). As William described, persons with a hidden disability may indeed feel as though they have two identities. When the disability is a chief part of a person's identity, albeit a secret one, another person cannot ever really know him or her without being aware of the major significant sides of selfhood. Once the knowledge of the condition is out there, the constant anxiety of feeling split between these two identities eases. Self-disclosure, thus, offers a link between the private self and the public self, a bridge to an integrated self.
Embodying the State of Limbo
"It is a piece of my identity, but it is not my identity"
Victoria: Juvenile Rheumatoid Arthritis
Of course you can curse it, but it doesn't come without being able to love who you are because of it. It has shaped the person that I am, which is a good thing. I actually feel kind of glad to have had the experiences I've had because I'm able to appreciate life in a whole different way. I love life! I embrace life! Every day I take in so much more. When I was little I couldn't go out and play, so one day if I did go out and play it was appreciated so much more. Because I couldn't go to school, when I did go to school I was like, "Yay!" I think that's how my life is lived. Everything I can do, I love so much more. I embrace it. I give it so much more. I enjoy so much more, I laugh so much more, I cry so much more. Honestly, I think it has everything to do with suffering. I think suffering has built so much within me. I've had a lot of suffering in my life. I think suffering brings so much. I'm very grateful for JRA and I wouldn't take it back, because I wouldn't be this person I am today. My illness was a part of me way before I was able to identify who I was as a person.
Brian: Type I Diabetes
I would definitely say diabetes - it doesn't define me, but it's a characteristic of mine. When you do hang out with me, it's there. I definitely would say that it's part of who I am now because I think my life has had to revolve around it.
William: Muscular Dystrophy
It's so much a part of why I'm so sensitive to other people. I mean, it's so much a part of what I value about myself. I've gotten to the point where, if there's any treatment or cure I would jump on it, obviously, but I've gotten to the point also where I value so much about who I am, that I love about myself, that it has so much to do with this, the Muscular Dystrophy. So I do value that (But) it's not positive in terms of my day-to-day life, like I don't just go out — "Oh, wow, this is great!" It's hard for me to walk up stairs. I mean, that's not positive. That's a struggle. And always being hypervigilant of my body, everything I do — if I trip, you know, it's not just I trip. It's "Oh my God, am I getting worse?" That's not good. When I say "positive" I mean it's about more in terms of who I am. My personality, my intensity, my complexities, my sensitivities and to myself and to other people, the way I view the world, the way I live life, I feel like in a way, it's the biggest lesson - I don't want to waste my time with bullshit. I care about how I want to spend my time and with whom. I just don't want to waste my time doing things that I think are meaningless. It's contributed to a sense of perspective about life that I feel is probably pretty unique. And I feel that I've harnessed it in a way that I think is beautiful and meaningful, and that makes me feel really good about myself.
Am I a disabled person or a person with a disability I go with a person with a disability as opposed to a disabled person. The disability may disable me as a person but I'm still Keith, and Keith is what life is. He has asthma and it is part of his identity, but it is not his identity. It's a piece of the identity. Depending on the time and situation, it may go up and be more of my identity than something else. Identities are multi-faceted, multi-pieced, and so, depending upon where I am, this part is my identity.
Rosalina: Celiac Disease
It's not something I'm like, "Oh, I wish I have" or "I wish I could just get rid of" because for me, celiac disease really did define what I'm going to do with my career There is a lot of work being done trying to make an enzyme that will digest the gluten so you can eat it. I'm sure that's far, far away, and if it ever were to come, I think that I'm so brainwashed, that I really see anything that's wheat as eating poison. It's not even an option for me. I would never intentionally just eat it. In my daily routine, it doesn't bother me. But in social situations, I think it would be so nice to be able to eat it. In a situation where I didn't have any choice, I could eat it and not have to worry about it.
My epilepsy has made me who I am. I have my culture and I'm a woman, but my epilepsy — it's, how do I? I don't know how to articulate it. It's in my head all the time. It's always in my mind and it makes me choose what I do, what I don't do, when I do it, and how I view things.
Angela, Keith, Brian, Rosalina, Victoria, and William tell stories of the multiplicity and malleability of identity based on their experience with bodily fallibility. Their flexible identities cannot be squished into a box; their classification does not fit into the sacred either/or categories that permeate our society. They exist in the space between, traveling in and out of two juxtaposed identity categories. The participants' stories communicate how subtle, ambiguous, fluid, and constantly evolving the lived experience of hidden disability is. Their many complex and multiple aspects of identities — family, gender, religion, culture, education, socioeconomic status — interconnect, overlap and confound each other.
These six individuals tell stories of bi-ability. By traversing the borderlands between binary categories of identity, these individuals tell narratives of identities that contradict, interact, inform, and implicate each other. Because of their ability to travel between two worlds, these participants tell stories of living on the edge of social, cultural, and political lines and adapting to the situation in which they find themselves at any given moment learning to emphasize or deemphasize various aspects of identity, depending on the pressures of the social context. In this way, they are like chameleons, maintaining multiple identities based on which seems most appropriate at a given time (Darling, 2003). They discover how to live in the gray areas, developing unique strengths, adaptation, and resiliency, without negating the struggles that accompany disability. In this way, the notion of bi-ability can be recognized and valued as a radical way to conceptualize the hidden disability experience.
By understanding the experience of hidden disability, might we think not only about persons with a hidden disability differently, but also about other people; bisexual, intersexed, and bicultural individuals who trespass the borderlands of identity categories? To put aside completely binary identity constructs allows us to think about the body, its physical state, and personal identity in an entirely different way. This very awareness might expose the idea that there is no right or wrong way to identify, allowing us to embrace defiance of dichotomous categories and to explore the spaces where such binary categories unravel.
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