Abstract
This article reports on a qualitative study identifying the drivers for and boundaries to disability-disclosure in interability interactions as experienced by 13 students with physical impairments at five Belgian higher education institutions. Through surveys and in-depth interviews, the study explored whether the students experience, prefer, and expect differences in communication about their impairments with temporarily able-bodied peers, instructors, and staff. Interviews provided insight into the nuances of disclosure and topic avoidance decisions that differ by disclosure target: disability-disclosure is mainly a balancing act between fulfilling physical needs and maintaining a normal, positive identity. The visibility of impairments seems to play a minor role in the students’ initial orientation toward disclosing. The functions of disability-disclosure as posited by the Communication Predicament of Disability Model and the CARE-keys to effective interability communication (i.e., Contact, Ask, Respect, Empathy) are discussed as well as the implications of the findings for Communication Accommodation Theory.
Keywords
Good afternoon, Inge. “How is student life going?” the grey-haired, friendly professor asked. The fact that he addressed me with my first name and did not immediately shoot his first exam question at me calmed me down in my first oral university exam. Quite directly, he continued an informal chat about how I coped with my physical condition: “I have always wondered how you manage studying and living here. Have you been in this wheelchair for a long time?” I replied I had lost my ability to walk in a car crash 20 years before. “Is it definitive?” he added carefully yet without hesitation. After a 5-minute question-and-answer session in which I had to publicly acknowledge and disclose details about my impairments, the instructor started my exam.
Ardent spotters of ableism (i.e., prejudice or discrimination against people with apparent or assumed physical, intellectual, or behavioral differences) might consider the professor’s questions as typical instances of interability communication where the “temporarily able-bodied” person who has a fully able body but can acquire a disability at any point in their lives (TAB; Smith, 2009) disempowers the differently abled person by focusing on their impairments, and by overaccommodating (e.g., by more determinedly trying to build rapport than usual). Yet, I did not find the professor intrusive, intimidating, or abusing the “instructor asks, student replies” exam format: I had always enjoyed his classes, his questions seemed well-intended (see Gasiorek & Giles, 2012, on how nonaccommodation tends to be tolerated if ascribed to benign motives), and I am proud of my achievements. He seemed to aim at more than satisfying his curiosity; he put me at ease by showing his interest for my functioning at university. Prominent and uncommon, my wheelchair served as a means to break the ice.
Managing disclosures about disabilities is an issue every person with impairments must contend with. This study explored how students with mobility or sensory impairments manage disability-disclosure and topic restraint in higher education, with people who are familiar with disabilities (the Special Facilities Service [SFS] staff who provide assistance to “students with special needs”) and people for whom the disability topic is less common (lecturers and fellow students). Disability-disclosure (DD) refers to a person’s expression of descriptive or evaluative information about their impairments. This is a facet of self-disclosure, defined by Wheeless and Grotz (1976) as “any message about the self that a person [verbally] communicates to another” (p. 338). Conversely, topic avoidance/restraint (TA) refers to someone’s avoidance of a topic or suppression of information that all interactants are more or less aware of (Graham, 2009).
Communication Accommodation and Predicaments of Disability
People’s impairments (especially when visible) can be as pervasive an “elephant in the living room” in a predominantly able-bodied culture (Iezzoni, 2006): possibly unexpected, difficult to ignore, and tough to control. Others are often anxious to find out more about this “differentness” but feel held back by norms governing privacy (e.g., the “shush” rule, reinforced by parents prohibiting their children from asking questions; Smith, 2009). This “elephant-in-the-living room” tension can manifest itself and be dealt with in many ways. The worst-case scenario could follow Ryan, Bajorek, Beaman, and Anas’s (2005) Communication Predicament of Disability Model (CPDM), driven by social psychological theories on stereotyping and Communication Accommodation Theory (CAT; e.g., Giles, 2008). CAT holds that individuals adjust their communicative behavior to create and maintain either closeness or distance. To do so, they draw on their knowledge of the context in which the interaction takes place, social and cultural norms, their own communicative needs and preferences (e.g., aims, attitudes toward the topic), and what they perceive as their partner’s communicative characteristics. The CPDM attributes nonaccommodation in interability communication (i.e., maladjusted communication between people with different abilities) to able-bodied speakers’ reliance on stereotypical rather than individual features of differently abled people. Often people with impairments are viewed as helpless, unproductive, passive, burdensome, hypersensitive, childlike, that is, clashing with “the sociocultural ideas of independence, beauty and marketability” which are highly valued in Western society (Ryan et al., 2005, p. 121; see also Davis, 2002). Ryan, Giles, Bartolucci, and Henwood (1986) found that “professionals and non-professionals alike fall into [the] trap of drawing easy inferences and indulging in damaging generalizations” (p. 6).
Ryan et al. (2005) reason that disability stereotypes permeate social interaction, manifesting themselves and being reinforced through the behavior of people with and without physical impairments alike (see Figure 1). TAB people often engage in communication that might be perceived as overnurturing or patronizing due to simple vocabulary, exaggerated praise for trivial achievements, overly familiar address, baby talk, third-party talk (often when the person with an impairment is accompanied by a TAB person), or depersonalizing language (referring to disabled people as a whole rather than focusing on the individual; Fox & Giles, 1996).
CARE for interability communication model.
Consequences of Nonaccommodation for People With Physical Impairments
Regardless of intentions, frequent exposure to inappropriate, stereotype-based behavior might have a detrimental impact on the disabled target’s identity and well-being (Duggan, Bradshaw, & Altman, 2010). For example, expressions of exaggerated sympathy have been shown to result in frustration and irritation on the part of the targets and lower their self-esteem because they threaten their autonomy (Duggan et al., 2010). CPDM posits that people with disabilities tend to respond to nonaccommodation (1) by letting it pass and behaving passively (e.g., silence, nodding, smiling) to maintain a positive identity, let the interaction run along smoothly, and/or out of fear of losing future indispensable helping offers; or (2) by reacting in an accusatory and highly emotional way. The former strategy might be perceived as a sign of approval and reinforces stereotypes of dependence and incompetence. The latter might cut the interaction short and reinforces stereotypes of people with disabilities being bitter and oversensitive.
However, other reasons can decrease the likelihood that people openly condemn nonaccommodation. Some people with impairments might welcome overaccommodation rather than consider it inappropriate and irritating, and thus not object, similar to older people who have been found to appreciate the attention they get in the form of overaccommodation (e.g., Ryan & Cole, 1990, found that patronizing speech was enjoyed by some, yet especially by those dependent and institutionalized). Also, they have been shown to often allow others to offer unnecessary assistance, reasoning that people feel positive about themselves if they can help someone in need (Fox & Giles, 1996). Caution is needed when interpreting and judging the reactions of people with impairments to nonaccommodation: Often they face a confusing, dreadful, or otherwise uncomfortable tension between the need for assistance and/or understanding versus the desire to maintain autonomy and positive self-esteem.
Disclosure to Improve Interactions Between People With Different Abilities
Assertive people tend to find it easier to establish and maintain a positive social identity and are less likely to be victimized (Ryan et al., 2005). Hence, Ryan et al. (2005) recommend selective assertiveness for individuals with disabilities to break the negative feedback cycle and avoid the negativity that one might receive by disclosing about one’s impairments in a way that caters for TAB targets’ needs and preferences (see Figure 1). Hebl and Kleck (2002) have indeed shown that explicitly naming the disability—the acknowledgement strategy—can successfully reduce or avoid stereotyping (in an employment context). By naming a potential source of tension, which TABs might otherwise not dare to discuss (or are not allowed to discuss due to anti-discrimination policies), individuals with disabilities indicate openness and acceptance of their “life situation,” making the stigma surrounding “being disabled” controllable.
However, communication is a two-way process. Temporarily able-bodied people’s power to prevent “the elephant in the living room” from influencing interaction in a way that could be destructive for all involved is embraced by Smith’s (2009) CARE-keys (Contact, Ask, Respect, Empathy) to effective interability communication, which enrich Ryan et al.’s (2005) theoretical framework. Smith (2009) recommends able-bodied individuals not to be put off by Contact with people with disabilities; and to Ask instead of making erroneous Assumptions to reduce their uncertainties; thereby showing Respect for each person’s individual strengths, needs, and preferences; and employ a healthy dose of Empathy (see Figure 1). Within this framework, this article’s introductory anecdote exemplifies the “Ask, don’t Assume” key put into practice.
The Delicate Nature of Disability as a Conversation Topic
Ryan et al.’s (2005) CPDM and Smith’s (2009) CARE model identify raising the topic of disability as an essential tool to improve interability interactions. The extant studies in the area of communication between people with and without physical impairments indicate that communicating about disabilities is delicate business for all. TABs tend to either avoid talking about disability or center the conversation around the impairment and its consequences, thereby giving it “master status.” Three of the six TAB instructors in Hart and Williams’s (1995) sample avoided communication overall and behaved nervously when physically near to students with visibly physical impairments; two others did not acknowledge the students’ abilities. Especially when asked by a person with a disability for help, TABs tend to engage in overly familiar talk and ask intimate questions, even about grooming and sexuality (Braithwaite, 1990; Ryan et al., 2005). Duggan et al.’s (2010) TAB medical students asked about their patients’ impairments, yet subsequently switched topics, did not integrate the implications of the impairment into the treatment plan, or overaccommodated by overly positive affirmation or over-the-top attempts at rapport building. These actions might indicate discomfort, negativity, or a lack of concern (treating the disability-information as irrelevant), possibly posing “greater obstacles for socially acceptable ways to return to the topic than if the disability was never addressed” (Duggan et al., 2010, p. 347).
Exploratory research from the perspective of individuals with physical impairments indicates that mechanical deficits and their consequences remain undesirable facets of their lives that they would rather not talk about (Ostrove, 2006). The few well-researched factors contributing to avoidance of disability-related topics include fear of interaction termination and awkwardness (Hebl & Kleck, 2000). Frymier and Wanzer (2003) found that students with physical or learning impairments were not less willing to communicate with instructors, but felt less understood by their instructors than TAB students.
Drawing on Communication Privacy Management Theory (CPMT; Petronio, 2002), at the heart of this reluctance to disclose could be individuals’ desire to control potential risk to the self and/or their relationships with others. By sharing private information, people make themselves potentially vulnerable as their disclosure targets become co-owners of this information and third party access to the information becomes possible. Decisions to grant or deny people access to personal information depend on (1) the experienced norm of or wish for reciprocity (mutually disclosing might foster bonding), (2) the trust in and (3) attraction toward the other, (4) the target’s status (disclosure to people of a different status tends to be perceived as riskier; Norton, 1982), (5) culture, and—perhaps most relevant in the case of DD—(6) expectations for rewards versus costs (“risk–benefit balance”) and (7) one’s need for being free from observation or remaining anonymous. CPMT studies have shown that people tend to tighten their boundaries when it comes to sharing painful, shameful, taboo experiences (Petronio, Reeder, Hecht, & Mon’t Ros-Mendoza, 1996). Petronio et al. (1996) found that children and adolescents with a sexual abuse history protected their boundaries out of fear of breaches of confidence, the target’s lack of responsiveness and caring, unwillingness or inability to understand their predicament (the need to tell in order to stop the abuse and/or for a cathartic purpose vs. the risk of making the abuse worse), or anticipated negative ramifications of revealing.
Whereas living with physical impairments is entirely different from having experienced sexual abuse, the facilitators for and barriers to disclosure might be similar as both kinds of “living conditions” are likely to be painful and possibly shameful (which should not be, but often is, the case) for the experiencer (and close others), and taboo. The stigma surrounding disability magnifies the risk accompanying disclosing impairment-related information as disclosure might trigger stigmatizing or otherwise negative responses from people who do not understand. Also, the higher the number of people who know, the more devastating the consequences for one’s self might be.
Disability-disclosure clearly entails challenges. Research identifying these challenges and ways to handle the topic carefully is of use for interability relationships or policies aiming at inclusion of people with different abilities in a frequently ableist society. As “perceptual barriers are usually recognized as the real barrier in interactions between able-bodied persons and persons with disabilities” (Frymier & Wanzer, 2003, p. 176), this study aimed to identify students’ initial orientation toward disability-disclosure and ongoing evaluative processes (i.e., how they experience disclosure during interactions). Two questions guided the data collection on students’ decision whether, why (not), when, and how to discuss the topic of disability.
Do students with self-assessed physical impairments have different experiences and expectations with regard to communication about their impairments and special needs in their professional environment, depending on the roles of the interactants? If so, what is the nature of these differences?
Do these communication experiences vary depending on the visibility of the impairments?
Method
Participants
The Special Facilities Services at five Flemish (Belgian) institutions of higher education recruited a volunteer sample of 22 students with self-assessed “physical impairments” (17 females, 5 males) from 2011 to 2013 for a larger program of research involving mixed methods. Their average age was 23 (range = 19-45). They had about 4 years of higher education experience each (mainly in humanities). Fourteen students had been living with their impairments since birth; the others’ impairments set on in puberty; the average span of “lived experience” was 17 years. Nine participants identified their impairments as visible (V), four evaluated the visibility of their impairments as alternating (A) resulting from changing symptoms and treatments, and nine as invisible or easily concealable (I). All completed the surveys; 13 of them were also interviewed (4 V, 3 A, 6 I)—they will be the primary sources of information for this report. See the appendix for details. In what follows, names have been replaced by pseudonyms.
Procedure
All participants completed a 15-minute online survey wherever they wished. Thirteen agreed on a 60-minute follow-up interview conducted by the researcher (after informed consent and sharing contact details of a counsellor without any obligations) in a small classroom, open lounge, or the interviewee’s home—depending on their preferences. The interviews were audio-recorded, later transcribed by two assistants, double-checked by the main researcher. The study was conducted in Dutch, the first language of all participants. Transcripts are available on request.
Measures and Instruments
Survey
The survey was based on Wheeless and Grotz’ (2004) Revised Self-Disclosure Scale (here, renamed as the Disability-Disclosure Scale; DDS) and Guerrero and Afifi’s (1995) Topic Avoidance Scale (TAS), adapted to focus on disability-disclosures. The DDS measured the participants’ general tendency to disclose about their impairment(s) and special needs (why, with whom, to what extent). The TAS measured to what extent self-protection, relationship protection, partner unresponsiveness, and social inappropriateness were important factors in their decision to limit disclosure. The small sample size, however, precluded reliable statistical analyses to address the research goals. The obtained results can be seen as the outcome of a pilot study and will only be reported in endnotes in the discussion section wherever they contribute to the interpretation of the qualitative findings. More details are available from the author on request.
Interview
Individual semi-structured interviews were conducted to explore the respondents’ attitudes toward DD and TA at university, and their opinions on disability-stereotyping and related communication experiences. Questions covered perceived differences between interability communication and communication between people without impairments; need of disability-acknowledgement and/or –disability-disclosure as opposed to topic avoidance or restraint; interpersonal control and discourse management in interability communication; (non-) accommodation and its consequences; and remedies for nonaccommodation.
The data were coded and thematically analyzed with the individual as unit of analysis two months before or after the quantitative analyses, reducing interpretations driven by those results. Themes were mainly identified inductively rather than driven (but possibly affected) by the research questions, the literature review, and the researcher’s own interests, and on a semantic level, leading to a descriptive and interpretative rather than already theorized analysis (Braun & Clarke, 2006). This article presents the themes that particularly contribute to an understanding of why students would (rather not) talk about their impairments. The visibility of impairments (V, A, I) is mentioned if identified as a differentiating variable.
My wheelchair was mentioned as a facilitator for participation and disclosure by some interviewees. Having “insider status” (i.e., being a wheelchair user myself and having navigated university in this way) might thus have affected the data. Intercoder reliability was not considered necessary as the unique perspective on data collection and interpretation offered by my position as a participant-observer would be difficult to duplicate. However, member checking was done during the interview process, and the findings and interpretations received detailed external feedback and critique from colleagues and supervisors at various stages of the project, and the study was positively assessed by two experienced communication researchers.
Findings
The qualitative data provide insight into the students’ major motivations to foster or limit disability-disclosure (“disability-disclosure drivers” and “topic restraint drivers,” respectively).
Disability-Disclosure Drivers
The reasons why students talk about their impairments ranged from personally driven (i.e., reasons related to safeguarding personal well-being and physical functioning) to socially driven (i.e., reasons related to safeguarding and optimizing smooth interaction with the environment), and were often pragmatic (i.e., dealing with [the foresight of] practical problems).
Disclosure to Get (Access to) Practical Assistance
Getting help was one of the important reasons why participants disclosed disability-related information. This was divided into seeking direct help (e.g., asking for an extra chair in class) and indirect help (e.g., informing lecturers of health-related reasons behind otherwise discrediting situations such as a lack of accessible transport). The likelihood that students would disclose for these purposes depended on the impact of their impairments on their everyday functioning and the necessity of others taking it into account. “Necessity,” however, has many gradations, which complicates predicting if and when someone would disclose. Jack (V)—an electric wheelchair user with limited use of arms and legs—got used to asking peers to hold the lift door as they often offered assistance, until he realized he needed to manage on his own when help was absent:
I used to ask my peers, but if they happen to be late or if nobody is around because I am late, you need to go to class anyhow. So I tried it once, and it actually worked. But it still looks really clumsy when I do it, and passers-by offer help. Then I am like “no, I can do it on my own,” but I stay polite and I understand they want to be friendly.
Nadia (I)—living with chronic pain due to a back injury—now dares to indicate that particular activities are difficult, but she needed to learn to acknowledge the needs of her body because of the unstable nature of her condition:
I am capable of doing many things, although it hurts. So I can do everything. So I do everything. Which is why people think: “hey, if you can party, you can work behind your desk the day after too!” But pain is so unpredictable; one day I can be well, the next I cannot do anything at all. This inconsistency in my behavior makes it really hard to understand [ . . . ] But I’ve learnt. I simply don’t do things anymore, even if I can.
All participants mentioned it is “only natural” or “normal” to disclose when they needed assistance, yet for most such disclosure is experienced as a necessary evil. Peers, instructors, and SFS alike wish to know why they should accommodate to specific needs of the person with disabilities. As Mary (A)—living with hypogammaglobulinemia (an immune deficiency disease)—concludes: “Talking about my illness never feels common. It is rather a must do and there we go again and knowing I’ll need to give a complex explanation.”
Moreover, the university system requires official and detailed information about the (dis)abilities and needs of their students to grant special services. All interviewees indicated that gaining access to facilities often was a struggle, requiring extensive disclosure and determination. For instance, Simon (I) describes arranging special facilities as “a real hassle” as
[y]ou really need to prove you are deaf, even if you have already had interpreters [ . . . ] It is as absurd as asking someone whose arm was amputated to prove every year that his arm hasn’t grown back!
Four interviewees even “used” gatekeepers to get necessary facilities. Amber (A)—having mobility and motoric impairments (visible while walking and using her hands)—stated her “mother was able to exert considerably more pressure” on the SFS than she herself when she was a first-year. Sophie (I)—hard of hearing—relied on her mother in the same way. Heather (V)—using a manual wheelchair yet with motorically impaired hands—reported her time at university to be “definitely easier thanks to [her] aunt who worked at the department.” Mary (A) appreciated the presence of her psychotherapist during SFS meetings and their cathartic phone calls after because disclosure “remains difficult” (see quote below).
Disclosure to Be Taken Seriously
All interviewees with undiagnosed, rare, not yet officially recognized, and/or alternatingly visible conditions (and none with constantly visible impairments) stated the need to disclose specifically to underscore the seriousness of their condition and legitimacy of their requests, not only to get help but also to be understood:
Knocking with your fist on the table and asking “I need this and that”; it remains difficult. During a special care meeting the emotional side of it also needs to be brought up because caregivers need to know the impact of their decisions on my personal life. [ . . . ] People really need to know who you are, the person behind that impairment. Caregivers need to enable you to achieve your dreams, they need to know it’s about a real human being and not something that can be classified as a file. (Mary)
The driver to disclose in order to counter disempowering assumptions also occurs (yet only according to students with visible impairments), but is less likely to lead to actual disclosure. For example, Mary was less happy about an oral exam where she appeared with an IV: “I felt really miserable because this professor pitied me. He said: ‘take a seat, would you like a cup of tea? Are you okay?’ And then I was like ‘hmm’ [frowns eyebrows].”
Disclosure to Provide Perspective on Potentially Non-normal Behavior
Many also voiced their preference to clarify potential abnormalities related to their condition, either to anticipate or to counter unwanted responses. Some gave reasons meaningful on a personal level (e.g., to create a comfortable, safe environment in which they can be themselves):
In a new team, I like to have it out in the open before they start speculating about what might be going on. It’s a matter of justifying so everything can be contextualized and I can feel at ease. When I’ve made it known, stress disappears and I can be myself and take a breath for a moment. (Nadia, I) They [i.e., everyone in Kate’s environment] know more about me then, they can take it into account, and that gives me a sense of confidence, of security. A sense of safety. (Kate, A, in pain after long-duration standing or sitting)
Perspective-providing disclosure is often also driven by the anticipation of questions or negative judgment, due to behavior that is necessary for the interviewees to function but socially inappropriate or impolite:
I think it is quite handy [for all peers to know] as I need to stand up and lie down, and that will stick out and people will have many questions [ . . . ] It is handy, from a social perspective, to explain it once. (Britt, I, who needs to stand up or lie down to deal with chronic pain)
As Nadia’s account illustrates, the personal and the social incentives and fears to disclose can intersect and reinforce one another. Her tendency to “justify” her slow study progress is driven by her own belief that it is not “okay” for her to study longer than the university system sets as the norm (out of frustration of the inability to speed up the progress in contrast to students who deliberately waste time) and her fear that others will judge her:
I often notice that disclosure is a way for me to justify that I study with delay. [ . . . ] It’s not because I am too lazy to study, it is because I have no other option. I want people to know. It is not an excuse, but a justification for myself: it is okay because. [ . . . ] My friends all go with the flow, I keep paddling. It is not disgraceful, studying slower, but it is for me. It is personally important to me to keep up the pace. [ . . . ] To those who just do not feel like studying, please do something else with your life.
She does not feel this need to “justify” her behavior to the SFS, because “[t]hey know why you are there. They know it is a real problem, as it was acknowledged by the university.” Also the personal connection with disclosure targets affects the decision whether or not to disclose to fight incorrect assumptions. Whereas Amber is not likely to explain unusual things in class (“I think it is obvious enough when I’m sitting there without shoes, with my socks, my arm . . .”), she did tell a befriended peer that she had an exam delay due to an infection to fight wrong assumptions: “I thought it was better to mention it as a precaution and immediately explain why I needed it, before the word spread and people started gossiping that I merely wanted more time to study for the exam.” Britt (I) suggests the visibility of the impairments plays a role:
Close friends know more than the peers who had the introduction in class, but I see them more often because we hang out frequently. They also notice when I have a pain attack, or when I don’t feel my legs anymore and I can’t do anything, so . . . The class does not.
Bonding With Friends or Decreasing the Distance
Most interviewees also disclosed for less clearly defined purposes, especially to close peers. Importantly, disability-disclosure is not necessarily driven by a wish to bond: it may also naturally result from the process of getting to know each other better. As Jack (V) puts it: “I rarely talk about my disabilities. If it happens, it is among closer friends and then it is only normal, when they have already known me for a couple of months.” Some experience disability-disclosure with friends as sharing information that is important to them, possibly as part of a smooth conversation, thereby contributing to the bonding process with friends: “With friends it is only natural to talk about it because it is something I have and it is part of me” (Lizzie, V, mobility and motoric impairments). For Sandra (V)—an electric wheelchair user and living with a hormonal disorder—converging accommodation in the shape of disclosure resulted from a conscious decision to bond, after noticing that not explaining her absence created a distance with her “frameworkers” (a group of 15 students living in the same halls who alternatingly assist her but have also become friends):
Here at university I used to keep my medical complaints a secret. But I often need to go to hospital, and that creates a distance with my frameworkers because they only see me during their shifts and then they feel as if they are merely frameworkers and nothing more. So now I talk about my spasticity and stuff so they know why I’ll be gone for a while, and so they can help me or at least know it is not their fault. I also talk about it because I know them quite well, and because I want to minimize that distance. We are all friends. [ . . . ] I also disclose to people I know less well, but only about the positive side.
Sophie (I) was also quite hesitant at first, but eventually disclosed due to practicalities and her hearing impairments being part of who she is: “They started to get to know me, so I needed be honest . . . I’ve become more selective, I have had too many negative experiences in the past.”
Reasons and Feelings Leading to Topic Restraint
The excerpts above already touched on the co-occurrence of drivers to disclose and concerns that might lead students to restrict or avoid the disability-topic. The subthemes below cover additional issues that mainly revolve around accommodation to personal needs and preferences (1-3), accommodation to the individual disclosure target’s features (4-6), and to characteristics tied to categories of disclosure targets or contexts (7 and 8).
Self-Protection (1)
Extensive and/or repeated disclosure is found emotionally taxing by most interviewees, and might lead to limited disclosure. 1 As Ann (I)—living with chronic pain and epilepsy—summarizes, disability-disclosure is not just a word: “It is always a tall order. Informing every single instructor would be too much. [ . . . ] If I know there will be questions, I can mentally prepare myself and delay those emotions.”
Nothing New Under the Sun (2)
Limited spontaneous disclosure can sometimes be explained by the normality status of “disability” for the discloser. Jack (V) rarely communicates about his impairments, unless he needs help, in case of which he “just asks” (“I can’t wait for hours. If I drop my backpack, I won’t be embarrassed [ . . . ] I just ask”). Whereas he acknowledges that his impairments affect his functioning and are part of him, Jack feels neutral. He does not see it as a particularly important feature and does not expect others to treat it as special either:
I just feel like anyone else. I have a functional impairment, but everyone has impairments in a sense. The perfect person does not exist. If someone asks me a question, I will reply. But if nobody asks, I won’t start talking about my own life because I do not feel depressed at all, I was born this way. I feel normal. Of course, if people occasionally stare…, but that does not happen over here, it’s a street-situation.
Similarly, Sandra (V) is not quick to spontaneously share details about her condition: “I am not aware of its significance. Also, it’s so silly to immediately announce: ‘I’m in a wheelchair because of this and that’, to talk about myself out of the blue.” Britt (I) explains she does not discuss her condition often with peers, mainly due to its stability and low news factor: “It rarely really is something to talk about. It is always the same anyhow, and I won’t constantly say ‘I’m in pain, I’m in pain.’ But they all know and help me a lot.”
Sense of Connection With Target (3)
All participants agreed that “[d]uring a first encounter, you don’t say ‘I am X and I have a problem’” (Kate, A). The intimacy and strength of connection with the disclosure target was positively related (in an anecdotal sense) to disclosure for all, mainly because they do not wish to draw disproportionate attention to their “problems.”
Anticipation of Negative Implications for Discloser (4)
Half of the interviewees indicated not to disclose about special resources they receive to prevent complaints about positive discrimination, mainly from peers. Amber prefers not to have her lecturers informed about her medical condition to prevent underestimation of her skills—anticipating the prescribing, untouchable power of a list of abilities and disabilities. Others do not wish to attract undue attention: “If they do not ask questions, they do not need more. Taking the initiative myself is attention-begging. ‘Hey, I’m deaf!’ That is so negative about disclosure” (Simon, I).
“Nobody Likes Negative Topics” (Sandra, V) (5)
Most interviewees anticipate their disclosure target’s dislike of the disability-topic as it relates to dysfunctions. This makes them wary of disclosing: “That’s normal, in society. Nobody likes to talk about pain all the time” (Amber, A); “It’s not worth approaching them [staring peers]. I don’t like pointing out I’m in pain. It’s not pleasant for them to hear either” (Britt, I); “I’m afraid to appear as a nagging bore; it’s quite a lot of information. [ . . . ] Some people keep repeating tiny little things, I can’t stand it if they do it without reason” (Ann, I).
Perceived Unfamiliarity of Target With Disabilities (6)
Half of the interviewees noted that disclosure targets’ unfamiliarity with disabilities and targets’ perceived disability to comprehend the information and use it appropriately (i.e., act accordingly) makes them hesitant to disclose: “SFS people understand me, they have experience with the situation, then it’s easy to say what I want. Students, in contrast . . . I always wonder how they will reply, so I wait and see” (Sophie, I).
2
Five others say they do not tend to discuss their condition and special needs with friends, or rather, give up talking about it, if they do not seem to fully understand the impact on their lives:
It goes in one ear, and goes out the other ear, and that is even more painful. [ . . . ] She was a close friend, so you never know how someone will react, regardless of the intimacy of your relationship. Even my family, they always say that I should be happy that I am not in a wheelchair, it could have been so much worse. Can I ever express my pain? (Kate, A)
Ann summarizes: “If they are not open or understanding, it is so useless to continue explaining.”
Professional Expectations (7)
All interviewees indicated that the SFS encounters revolve around using SFS expertise to arrange the appropriate adjustments in order to enable or facilitate participation in academic life. Hence, for most interviewees, disclosure to the SFS occurs on a purely professional level: focused, yet as elaborate as necessary and relevant; and usually tackling practical rather than emotional issues:
If I have a problem, I tell it and she solves it. She’s a good [SFS] staff-member, and I do not expect her to act special or warmer, that’s beside the point. [ . . . ] Perhaps that’s the way it should be, in a university context. It would be weird if everyone was overly personal. (Jack)
With instructors, most interviewees reported they tend to be even more formal and expect instructors to act likewise, due to the usually study-related topics of instructor–student interactions and the socially expected distance (reflecting the power or status difference):
I usually talk to lecturers about practical stuff. [ . . . ] I will also adjust my language use, talk more objectively and to-the-point [ . . . ] Every student does it, the distance between student and lecturer exists. It’s less obvious than before, but it is there. And it must be respected, also by me, regardless of my wheelchair, that’s the way it is. (Heather, V) I don’t tell them very extensively that I suffer, because it is not their business. They prefer the examination to end as soon as possible; they also want to go home. (Amber, A)
Normalcy (8)
A final factor affecting all respondents, especially but not exclusively with peers, was reluctance to be deprived of their individuality and to be reduced or reduce themselves to their disabilities. Although all agreed with Smith’s “Ask, don’t Assume” key and were willing to provide disability information on request, they said they introduced the topic rarely because they identify themselves in the first place as “normal students” and prefer their peers to get to know them as a person. Heather emphasized that if the topic comes up with peers, it always fits into the context and never overshadows the conversation. Lizzie would not appreciate people giving her impairment master status by focusing on that one aspect of herself:
I’d find it strange if others approached me and immediately addressed that fact, especially if they hadn’t talked to me before. It would be frustrating. [ . . . ] I’d find it hard to accept, them focusing on my functional impairment, rather than on, you know. . . . I don’t bother about people who know me, they know my whole person, they know who I am.
Luke (A)—having severe visual impairments—summarizes:
I usually avoid that topic [i.e., sight problems] because I try to live my way as normal as possible. [ . . . ] It’s probably the feeling of belonging, not wishing to be the white rhino in the crowd.
For most normalcy goes hand in hand with “not being weak,” which leads to the restriction of the topic which highlights their weakness: “We profile ourselves as the open West, with freedom of opinion etc., but taboos still exist, pose barriers. People need to protect themselves, put on a mask, because you are left out if you appear too weak” (Mary, A).
Discussion
This qualitative analysis suggests that neither the students’ acceptance and continuation of the disability-topic nor its restriction are likely to result from a consciously applied “stigma management strategy”–contrasting with Hebl and Kleck’s (2002) conclusions on disability acknowledgement and disclosure as a means to make stigma controllable in job interviews. Neither seems topic avoidance to be an attempt to “[assert] a positive social identity by ‘not making waves’ and by supporting a member of the group to which they would like to assimilate” (Fox & Giles, 1996, pp. 269-270). The students did not consider themselves intrinsically different from their able-bodied disclosure targets at all; thus, concepts such as stigma and assimilation seem to be inappropriate for understanding their disclosure decisions. Topic restraint seems to be driven by interpersonal, rather than intergroup, motives such as relationship protection, professional context-related inappropriateness, lack of closeness with the target, and privacy maintenance (Graham, 2009). Fear of awkwardness or sudden interaction termination only rarely occurred (contrary to Braithwaite & Labrecque, 1994; Frymier & Wanzer, 2003). While disclosing, interviewees indicated to (intend to) accommodate to their targets’ needs to know and ability to integrate disability-related information, but these anticipated responses did not outweigh their own needs and preferences (e.g., need for assistance, sharing of everyday experiences, being themselves).
Yet, all participants were very conscious of normalcy and how (physically) functioning differently can trigger an aura of abnormality and negativity. They derived and wished to maintain a positive social identity through membership of the group of “students”. They try to stay away from the danger of being assigned a membership role in the group of “the disabled,” and by extension, “abnormal people”. Some do this by accommodating to the people they interact with, either by answering their questions (which they tend to attribute to good intentions) or by anticipating their curiosity—rather to provide information which makes themselves seem less abnormal than out of fear to lose the other person’s approval (see the “perspective-providing” DD). Others strove for a positive social identity by remaining silent about (in CPM terms: construct “privacy boundaries” around) their impairments, reluctant to make disabilities salient and emphasize what they do not have in common, and threaten their identity and autonomy—two aspects closely interwoven in a society where “you are left out if you appear too weak” or where being a white rhino makes you stand out or more precious than you wish.
Thus, talking about impairments and needs seems to be a balancing act between fulfilling physical needs (requiring disclosure) and achieving and maintaining a positive identity and a status of normalcy (threatened by both disclosure and nondisclosure). The “needs-based" disclosure readdresses the power balance between the factors that drive people’s communicative behavior in previous theorizing, including CAT-based models, which has focused almost exclusively on identity issues rather than practical issues as motivating disclosure or topic avoidance. Returning to CPMT, impairment-related disclosure requires the discloser to make a “risk–benefit balance” mainly revolving around gauging the threat of physical, emotional and/or social vulnerability rather than the risks of sharing ownership rights of information.
Research Question 1: The Interplay Between Disability-Disclosure Drivers and Disclosure Targets
The students saw disclosure to obtain necessary assistance as “only natural” or “normal” regardless of the disclosure target and seldom attempted to avoid the topic. Yet, the extent of and reasons for disclosure varied depending on the target and more broadly, context:
Of course I tell people I hang out with frequently. I believe it is good that they know, so they can take it into account. Also with the SFS you need to discuss it, that is why they help. Of course I also talk about it with instructors when I have examinations, if it is really necessary. But it’s not always necessary. With students who really become friends I think it’s natural to talk about it as it is something I have and it is part of me; they should know. (Lizzie)
The data suggest that the disability-topic is mainly raised due to practical issues with instructors and SFS, rendering personal preferences and social appropriateness irrelevant, especially with SFS. 3 Disclosure to (especially close) peers occurs for less utilitarian purposes. Participants indicated they shared impairment-related information as part of the bonding process and to decrease social distance with peers (stimulated by the potentially rewarding impact of disclosure on their relationship). This might be due to a norm of reciprocity, but not as strict as the reciprocity mentioned in CPMT as a reason to open access: interviewees did not disclose following conversation partners’ disclosures about their own disabilities or failures, but disclosed following and/or expecting the others’ sharing of intimate information in general. The findings are also in line with research showing that disclosure fosters connectedness (Laurenceau, Barret, & Rovine, 2005). Moreover, a sense of connectedness seems to facilitate disclosure: tendency to disclose was the weakest with acquainted peers and some respondents explained they hesitated to disclose to SFS staff if they did not feel a “click” or “understood.”
Research Question 2: Visibility Versus Invisibility, or the Struggle for Self-Governance
Visibility did not seem to affect the participants’ initial orientation toward disclosure. All wished to appear as “normal” as possible (to others and to themselves) in order not to trigger pity or another special treatment, while simultaneously being taken seriously when requiring assistance or understanding of socially inappropriate behavior. Visibility did affect the success of hiding abnormalities and the control individuals have over their disabilities and disclosure. The more visible, the more likely the “spread phenomenon” is to occur, where a person’s distinctive characteristics are overshadowed by that person’s disabilities and the identity of “disabled” gets master status (Murphy, 1990).
Some findings can be explained by Murphy’s assertion that this “spread phenomenon” colors most interability interactions. This is also consistent with Harwood, Giles, and Palomares’s (2005) claim that communication is often experienced as more problematic and less satisfying the more intergroup in nature it becomes. Participants seemed to try and keep their interactions as most interpersonal and least intergroup (disabled vs. TAB) as possible. Evidence of this includes the disability-topic restriction of most interviewees out of fear or resistance to be treated as “different” or “special.” 4 Some also suggested that invisibility of impairments simply leads to fewer disclosure moments, as there is no common point of reference. Yet, especially for those with less visible or unknown impairments, disclosure might be required to put non-normal behavior into perspective and make it less abnormal. Visibility affects the environment’s attitudes as far as the student’s differentness, credibility, and “need to be empathized with” is concerned. Mary (A) explains: “If it is invisible, you are more likely to encounter unwilling responses. When they see the IV, they believe ‘wow, it’s serious.’ It doesn’t change my illness, but for them it’s a recognizable signal: ‘something is wrong’.”
CPDM, CARE, and Practical Implications
Disability-disclosure was not a paralyzing issue for any of the respondents, which might not be surprising; they volunteered to participate in this “study on communication about disabilities”. I was likely to recruit people who had made sense of their impairments in a way that made them confident enough and willing to talk about their experiences. Still, a wide range of factors influencing the likelihood and extent of disclosure were identified, including the severity and perceived abnormality status of the impairment, its prominence in one’s identity, emotional implications of one’s physical condition, consideration of the disclosure target’s needs, and shared views on what is necessary and socially appropriate to disclose at university.
This study shows that the disability-topic can be a socially appropriate and legitimate aspect of interactions at university, as it is part of who these students are and their impairments often affect their functioning in education. It might be wise for staff to limit questions/remarks about students’ impairments to what is relevant for their education and not deeply go into the emotional side as participants’ privacy boundaries seemed to be less permeable when concerning emotional (vs. practical) disclosure. Staff should also pose/share them at a time and place that does not single the student out from their peers to safeguard the student’s feeling of not being “the white rhino in the crowd.” Peers seem to have more freedom in addressing the topic as part of the process of getting to know each other and becoming friends, yet preferably not out of the blue. Special Facilities Service staff need students who apply for special resources to disclose and even prove their disabilities (which might be frustrating/difficult), as unqualified students might abuse the system. To lower the threshold to their services, some Belgian universities distribute flyers among all students about “studying with a functional impairment, sports-, or arts-practice” on open days and on enrolment (not distinguishing between students on the basis of assumptions of disability/special needs), and leave the door of their SFS offices open. They could further facilitate contact by distributing a list of the required information beforehand.
Together with the rare occurrence of accounts of tension related to curiosity or fear for the unknown in the interviews, the participants’ conclusion that the topic of disability is not taboo suggests we—researchers of interability communication and others who actively participate in interability interactions—cannot assume that disability unavoidably manifests itself as a threatening or discomforting “elephant in the living room.” Validating Smith’s (2009) CARE keys, the recipe to avoid turning disability-related curiosity and uncertainties into overwhelming elephants revolves around mutual respect for each other’s privacy, identity, and professional norms if applicable. This study’s findings also suggest that the role of people with impairments in the Communication Predicament of Disability Model should perhaps be reconsidered: they should not be expected to disclose to prevent wrong assumptions as if they were an open book. Rather, they should be granted credibility as autonomous, self-governing individuals who are just as human as everyone else, and for whom physical abilities do not necessarily have master status. Amber summarizes how people at university should act:
I’d say they should stay true to themselves, and try to figure out what uni is about and what is appropriate. That is how social interaction works. [ . . . ] One of my lecturers has a gigantic mole on his nose; him staring at my legs, or me staring at his face, isn’t that the same thing?
This study shows that difference need not be an “elephant in the living room.” Rather, the elephant is what you make of it.
Footnotes
Appendix
Demographic Information
| Pseudonym | Gender | Visibility | Years at university | Special facilities needed in higher education environment | Functional impairment(s) | Years of disability | Age |
|---|---|---|---|---|---|---|---|
| Lynn | Female | V | 3 | Notes; inform instructors about special needs | Mobility impairment | 21 | 21 |
| Heather | Female | V | 6 | Notes; wheelchair access; extra exam time; trackball | Mobility impairment (paraplegia; manual wheelchair) | 31 | 31 |
| Jack | Male | V | 4 | Extra time for exams; wheelchair access | Mobility and motoric impairments (limited use of arms and legs; electric wheelchair) | 22 | 22 |
| Lizzie | Female | V | 1 | Lecture notes; extra time for exams | Mobility and motoric impairments | 20 | 20 |
| Amber | Female | A | 2 | Notes; inform instructors, electrical socket and table during exams; right to explain exams orally; personal locker at student office, access to university car park | Mobility and motoric impairments | 19 | 19 |
| Kate | Female | A | 4 | Pillow during exams; breaks during exams without loss of time; spread of exams; walks during lectures | Motoric impairment; pain after long-duration standing or sitting | 9.5 | 22 |
| Chris | Male | I | 4 | Spread of exams | Fibromyalgia and CFS | 5 | 22 |
| Nadia | Female | I | 2 | Spread of exams; separate table and chair | Chronic pain due to back injury | 20 | 20 |
| Sarah | Female | V | 3 | Extra time for exams | Left hemiplegia | 21 | 21 |
| Mary | Female | A | 7 | Notes; spread of exams; inform instructors; extra tuition after class; self-study; exams in separate room and in the morning; use of the toilet at any time; follow parallel classes if overlapping medical treatment | Hypogammaglobulinemia | 15 | 25 |
| Britt | Female | I | 1 | Notes; standing up/lying down in class; spread of exams; exam nearby home | Chronic pain | 45 | 45 |
| Ann | Female | I | 5 | Notes; extra exam time; leave the room without permission | Chronic pain and epilepsy | 6 | 23 |
| Simon | Male | I | 1 | Instructors need to speak clear and not too softly/loudly (Simon approaches instructors himself if they do not speak clear enough) | Deafness | 20 | 20 |
| Rose | Female | I | 7 | Spread of exams; extra time for exams | Fibromyalgia and CFS | 3 | 25 |
| Quince | M | I | 12 | Spread of exams | Amnesia due to neurological disorder resulting in fatigue and overuse of body | 5 | 30 |
| Sophie | Female | I | 5 | Inform instructors about impairments | Hard of hearing | 23 | 23 |
| Sandra | Female | V | 2 | Peers’ notes; transport to classes; wheelchair accessible venues | Mobility impairments (tetraplegia; electric wheelchair) and hypopituitarism (hormonal disorder) | 5 | 20 |
| Luke | Male | A | 4 | Extra time for exams; enlarged font of exams; oral exams; spread of exams | Visual impairment (heavy) | 22 | 22 |
| Jess | Female | I | 1 | Venues close to home; alternative assignments in case of absence during compulsory classes; postponement of exams | Increased risk of dislocation of joints (hyperlaxity and hyperflexibility) | 19 (but “real problems” since the age of 12) | 19 |
| Mel | Female | V | 1 | Extra time for exams | Scoliosis; osteoarthritis; spasticity; discalculy | 8 | 19 |
| Joanne | Female | V | 3 | Extra time for exams; storage of luggage at university | Right hemiplegia | 21 | 21 |
| Chloe | Female | V | 2 | Easily accessible venues due to mobility impairments; GON-assistant for practical arrangements (GON = Integrated Education) | Motoric impairments (muscle disease LGMD) | 13 | 20 |
Acknowledgements
I am grateful to the editor, Howard Giles, and the two anonymous reviewers for their careful feedback on previous versions of this article. I would also like to thank all research assistants, study participants and gatekeepers as well as my MA in Linguistics supervisor Kris Van de Poel and my assessor Jessica Gasiorek for their insight, support, and suggestions on content and writing during my exploratory research on interability communication.
Declaration of Conflicting Interests
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author received no financial support for the research, authorship, and/or publication of this article.