The Social Model of Disability & the Theory of Complex Embodiment

Disability Studies scholars have thoroughly documented the ways in which physical and cognitive impairments have been conflated with "disability" – the latter being a socially constructed status that is dependent on cultural, economic, political and historical context (Shapiro 1993; Linton 1998; Longmore & Umensky 2001; Heyer 2002; Heyer 2007; Schweik 2009). During the latter half of the twentieth century, disability rights activists worked to replace the Medical or Individual Model of Disability with a Social Model that emphasizes barriers to participation in society for people with impairments, and squarely situates disability in the interactions between an individual and the social or built environment (Linton 1998; Longmore & Umensky 2001; Switzer 2003; Barnes and Mercer 2003; Shakespeare 2013.)

Disability theorists are currently wrestling with the binary approach of the Medical versus Social Model of Disability. The Medical Model of disability essentializes disabled people and stubbornly denies the tautological trappings of defect-based classification schemes. By contrast, the Social Model holds the promise of all social constructionist theories: through the power of spreading awareness and cultural reframing, ascriptive differences can be effaced. Tobin Siebers (2008) offers a sustained critique of theorizing disability solely in one or the other of these realms. Siebers builds on feminist scholars' discussions of complex embodiment (Butler 1993; Erevelles and Minear 2010) to argue that particular social locations produce specific epistemological perspectives that simultaneously spring from, and are inscribed upon, the body. In so doing, Siebers (2008) seeks to disrupt overly social constructionist interpretations of disability while reinforcing the need for identity politics. Siebers traces the rise of identity politics in the 1960s and '70s that helped minorities recognize each other and coalesce into groups with shared interests that led to group-based political demands. Siebers argues that as identity politics in academe gave way to social constructionism, the focus was less on shared experiences within each minority group and more on hegemonic norms and attitudes that shape those experiences.

Just as feminist scholars have pushed back on strong social constructionist theories by claiming that such notions erase the materiality of the body (see Wendell 1989; Butler 1993), disability theorists work to re-insert the importance of the bodily experience of living with impairment, including the pleasure as well as the pain and exhaustion that often accompanies such bodies (Siebers 2008). Siebers notes:

Many social constructionists assume that it is extremely difficult to see through the repressive apparatus of modern society to any given body, but when they do manage to spot one, it is rarely disabled. It is usually a body that feels good and looks good – a body on the brink of discovering new kinds of pleasure, new uses for itself, and more and more power. (2008: 59)

The theory of complex embodiment urges us to conceptualize the experience of disability as a form of complex embodiment, one that sutures together experiences shaped by the social and physical environment but also firmly rooted in the concrete day-to-day experiences of the materiality of the body. Understanding the experience of disability as complex embodiment centers the individual as well as intersectional experience while exposing alignments between one's experience and those of other disabled people.

Linking one's individual experiences to institutionalized practices of discrimination is part of the iterative process of identity-building and group affiliation. Social cognition theory and symbolic interactionism provide important insights for understanding identity. Social cognition theorists locate identity in both group membership (social identity) and personal characteristics (personal identity). Language, Howard (2000) argues, connects the two traditions, as collective and individual voices generate identities along differing dimensions in differing contexts. Studies of individuals with physical impairments confirm that identities are interactively constructed through language and are contextually dependent (Charmaz 1995; Low 1996; Engel and Munger 2003).

This paper builds upon the studies described above, acknowledging the importance of socialization in disability groups but also highlighting the importance of visibility of impairment in developing a personal disability identity. My results bolster the findings of a small body of scholarship that has explored the differing experiences of individuals with static impairments compared to people with chronic illnesses, people who Susan Wendell (2001) calls the "unhealthy disabled." These scholars document the ways in which people who experience inconsistent levels of impairment due to disease or flare ups are often not fully embraced by disability communities and are sometimes viewed as not legitimate representatives or activists of the disability movement (Wendell 1996, 2001; Humphrey 2000.) Evelyn Nakano Glenn's work on formal versus substantive citizenship illuminates the role of visibility in shaping how groups draw boundaries for their members. She states: "it is matter of belonging, which requires recognition by other members of the community" (Nakano Glenn 2011: 3).

For people with non-apparent impairment, membership in the disability community requires constant, active assertion of one's status, as they can never rest on their status being 'seen' by others. As a result, complex embodiment takes on a more nuanced dimension for those living with non-apparent impairment, as their membership (and associated stigma) must be established and re-established in an ongoing process of identity assertion.

An Intersectional Approach to Stigma, Passing & Covering

Studying people with invisible impairments provides a unique and important window into to stigma management. Stigma management centers on individuals' ability to control their "discredited identities," meaning, as Goffman puts it: "visibility is crucial" (1963: 48). Individuals with impairments that are both invisible and intermittent have the widest possible range of options open to them for managing stigma, as they may choose to fully disclose, partially disclose, or hide their impairment.

Scholars in virtually every sub-area of sociology have studied stigma and the consequences of living with a stigmatized status. Erving Goffman, in his book Stigma, defines this term as "an attribute that is deeply discrediting" (1963: 3). Goffman points out that to understand stigma we need "a language of relationships, not attributes," underscoring the interactionist nature of stigma specifically and identity more broadly (1963: 3). Stigma has also been widely studied by health researchers and social scientists exploring illness (Zola 1982; Frank 1991, 1995; Chaudoir & Quinn 2010). Psychologists Stephanie Chaudoir and Diane Quinn (2010) studied how the first time a person discloses a stigmatized identity correlates to psychological health, finding that positive first-time disclosures are associated with a variety of long term psychological benefits (while negative experiences result in long term detriments.)

This paper also builds upon the work of scholars seeking to add much needed layers of theoretical complexity to the analysis of stigma and passing. Renfrow's examination (2004) of "everyday passing" provides a framework for examining the reciprocal dynamic between presenter and audience in the dance of identity management, delineating reactive passing (being misconstrued as something one is not) from active passing (asserting one is something one is not). Shiri Eisner's analysis (2013) of coercive and intentional passing complements Renfrow's framework while highlighting the power dynamics that are sustained, resisted, or negotiated through passing. Siebers' work (2004) on the disability masquerade also reveals important power dynamics in decisions to pass or disclose. Siebers' borrows the "masquerade" from queer theory to distinguish less discussed forms of disability passing that include exaggerating impairment, feigning one disability to mask another, refusing to overcompensate for impairment, and engaging in disability drag to reinsert agency and political resistance into passing dynamics.

Perhaps the most critical work on disability passing comes from an anthology edited by Jeffrey Brune and Daniel Wilson (2012), which examines the causes, consequences, and framing of passing for varying groups including polio survivors (Wilson 2013), athletes (Rembis 2013), those with mental illness (Cox 2013), and slaves in the antebellum South (Boster 2013), to name just a few. One of the primary strengths of Brune and Wilson's collection is the intersectional approach taken by its authors who critically examine the many dimensions not only of disability identity, but also class, gender, race, and sexuality, insisting on historicized accounts of marginality.

Applying an intersectional approach to identity that embeds social constructs in their time and place is of paramount importance in analyzing disability, particularly studies of individuals who must actively work to establish disability identity. Feminist scholar Nira Yuval-Davis (2006) urges identity scholars to avoid additive approaches to conceptualizing multiple minority statuses, arguing:

The point of intersectional analysis is not to find "several identities under one" …. This would reinscribe the fragmented, additive model of oppression and essentialize specific social identities. Instead the point is to analyse the differential ways by which social divisions are concretely enmeshed and constructed by each other and how they relate to political and subjective constructions of identities. (2006: 205)

Disability Studies scholars have taken up this challenge and produced insightful analyses of the intersectionality of disability and race (Erevelles and Minear 2010), disability and gender (Wendell 1989, 1996), and disability and sexual orientation (Eisner 2013). Incorporating intersectionality into the analysis of identity highlights the tensions that occur when individuals feel they must hide or minimize one identity in order to preserve or bolster another in a given context. These ongoing decisions stitch together the fabric of each person's life, consisting of the primary mechanisms for identity negotiation and management.

While managing one's identity, it may cost people with an "invisible" impairment more at some times than others to pass as nondisabled or "normal." As a result, many may choose to partially disclose, or engage in what Goffman (briefly) refers to as "covering" (1963: 102). Covering is an "adaptive technique" used by stigmatized individuals in social situations to reduce the visibility of their stigmatized condition (Goffman 1963: 102). Goffman argues that virtually all stigmatized individuals will engage in this behavior to some degree: "many of those who rarely try to pass, routinely try to cover" (1963: 102). In this way, people with invisible impairments may find their experiences more closely aligned to those of the LGBTQ community who cover their sexual identities. Kenji Yoshino, a Japanese-American lawyer who is openly gay, writes of his experiences in which he and others like him are discriminated against and pressured to downplay their racial or sexual identities. In the introduction to his book Covering, Yoshino muses about "an uncovered self" (2006:3) but focuses his analysis on the myriad pressures to cover. Yoshino defines covering as occurring when "the underlying identity is neither altered nor hidden, but is downplayed" (2002: 772). Both Goffman and Yoshino note that covering is used by members of minority groups to assimilate into the mainstream.

This paper makes a unique contribution to Disability Studies by examining the reverse process, that is, active efforts to resist assimilation into the mainstream of nondisabled norms. Drawing on the Social Model of Disability, theory of complex embodiment, and sociological understandings of stigma, the case studies presented here demonstrate the seemingly ubiquitous contexts in which people with non-apparent impairments are encouraged to pass and the consequences of ongoing decisions to resist that pressure and un/cover.

Lionel: I'm sort of living in this middle ground…

Lionel is a young, white man in his late twenties. He is a composer and works as a part-time instructor at a community college teaching music theory. Lionel does not see himself as "disabled." Lionel has, in his words, "a visual condition" that impacts his central vision, so he has a fringe of periphery vision with an ever-growing blank spot in the center. This started around or shortly after puberty, he thinks, but he wasn't diagnosed until the middle of college. This condition has increased over time, at varying degrees, and there is no clear prognosis, meaning that doctors are unable to tell him whether he will eventually go completely blind, and if so, at what rate.

As Lionel described living with a visual condition, he repeatedly indicated ambivalence about "what the right thing to do is" in situations where people are indeed aware of his condition, but forget about its impacts. He discusses these decisions in language reflecting internalized ableism, framing his dilemma in terms of overstepping boundaries to force others to deal with his personal problems. To illustrate, Lionel gave examples of situations in which he has to decide whether and how to remind others of his visual condition. For example, Lionel related, with irony, how even his family members often forget the ways his impairment impacts him in social situations. He states:

Well, even with my family, like, they absolutely more than anyone else that I know understand specifically what visual condition I have. I have spent a lot of time talking to them about it and they have been very supportive, but there are still times when they – for example, we don't eat out very much, but when we do, like at a fast food restaurant there will be a display, and I can't see the display – the brightness is the biggest issue there. I'm uncomfortable in that situation because fast food restaurants never have written menus. You just go in and it's like "well, I'll have a number three." Whatever that turns out to be. [Laughs.]

Lionel framed his decision not to press the issue of having access to the menu at a restaurant as not wanting to inconvenience others with his requests. His rhetoric firmly roots his understanding of impairment in the language of the Medical Model, describing his reluctance to make other people "deal with his" problem. Describing the fast food scenario, he continues:

I've done that before. It makes more sense for me to copy whatever someone else got rather than guessing randomly. [Chuckles.] I don't know, I don't know what the right thing to do is there. I could say "could you tell me what is on the menu?" you know, have them read it to me, but then it's like I'm making too much effort for the other people just to deal with my little visual condition. I really don't want to do that. Maybe I should be more willing to do that, but especially if there are other people waiting behind me in line, I'll just say "give me number three". I don't know. That's just an example, my family will sometimes forget in that kind of context and that's something that I struggle with.

We discussed at length his vacillation between being frustrated and not wanting to impose his "special needs" on others. Lionel indicated he was often reticent to ask others for help "just to deal with [his] little visual condition."

When talking about his work environment, Lionel reports that he has not requested any special accommodations at work, choosing instead to work mostly from home. He does, however, arrange his classrooms in particular ways, drawing the blinds and dimming the lights in order to maximize the vision he does have. The first day of each class he teaches, Lionel explains his visual condition to his students as part of the reviewing the syllabus, and outlines the ways his condition may impact the classroom and his interactions with students. He explained that when he first started teaching, he disclosed his visual condition to his students with a one-liner: "…during the presentation of the syllabus and talking about class I'll say: 'I have a visual condition, it's not that big a deal' and then I will immediately start talking about something else. I will minimize… It's like – wham! - I have a visual condition, it's not that big a deal and I immediately start back stepping." As he became more comfortable in the classroom, he expanded this first-day disclosure to include some information as to why he lowers the blinds and dims the light, but still doesn't linger on detailed explanations.

Although covering is thus a familiar strategy to Lionel, he also described key moments in which he elected to un/cover. During our conversations, Lionel reflected on what if felt like when he chose not to "fake it" and instead made his condition more visible to his students. Importantly, incidents such as these were already in the process of being reframed in Lionel's narrative. In the following, he describes drawing attention to his visual condition in order to address a student's question about a quiz:

So I will have to take the quiz, hold it up close and then, it doesn't matter really, I guess, but it just makes it a thing. It just makes it real. I was… Before I took that active role of moving the quiz close I was faking it – maybe I'm not – but in my mind I was faking it and they couldn't tell that I am visually impaired at all. Taking those active steps to make myself different is, uh, is on my mind.

Lionel clearly saw his move to un/cover his impairment as differentiating his way of functioning from the ways most of his students do: "Taking those active steps to make myself different is, uh, is on my mind." He talked of other times when he faced decisions to downplay his visual condition or explicitly acknowledge his low vision. He consistently ended stories about bringing attention to his impairment with explanations of how it did not turn out to be "that big a deal" and confirmed that he didn't notice any difference in the ways, for example, that his students interacted with him after un/covering in the classroom.

Lionel's story reflects not only his experience as a person who has acquired low vision, but also reflects the webs of social class, gender, and political systems in which his experiences are embedded. Lionel describes his childhood in a middle class home with a large yard in which he and his siblings played. His family's financial security enabled him to attend college and graduate school without taking out loans or having to work. Indeed, he points to the fact that during his master's program he was the only one in his cohort not working as a teaching assistant as one more experiential difference that deepened the divide between him and his classmates. Although Lionel has struggled to find steady employment at times, this financial security has also sheltered him from pursuing social security or private disability insurance, side stepping one of the primary mechanisms for exploring ones' status as "disabled." Indeed, when pressed about his thoughts on the label of disability, he asserted that he was pretty sure one needed to "register with the government" in order to be considered disabled, despite initially describing himself as "legally blind." He explained he hadn't done that as he was reluctant to "deal with all the paperwork" and preferred "not to ask for help."

Understandings of gender are also deeply entwined in Lionel's framing of having to "ask for help." Notably, his discussions of moments when he encounters barriers, for example, when he cannot read a menu off a lighted board, are not framed in his need for access to a menu, but through the lens of revealing weakness and burdening others with his needs. Lionel explicitly linked many strategies he uses to cover his impairment to gender conceptions – noting that sometimes being perceived as a man helps and other times hinders his ability to pass. For example, when discussing his attempts to maintain eye contact during conversations he explains "I think men in general – women tend to lock eyes more whereas men tend to, when they are talking, they tend to do what I do, which is look away. And in some ways, my behavior doesn't seem that weird, it just seems like guy behavior." By contrast, Lionel expressed that asking for assistance in reading things such as food labels in grocery stores advertises his "shortcomings" to women, making him not a "potential good mate." Lionel shared stories of women in his life that were more comfortable demanding others do things for them than the men he grew up with. At one point, he described his failure to be able to assist a student in the classroom due to his low vision as "emasculating." He explained:

I would speculate that females who are disabled have a different mindset about their disability than males that are disabled, in general. I would guess that males that are disabled don't slip into the victim mentality as much. I guess that's part of what I'm talking about. Being unable to do something feels like it might for a male a little bit more… It sounds sexist but I'm not trying to be.

We discussed this phrasing several times and he later sent me this note clarifying what he meant:

The change is really from adult (independent) to child (dependent). It is complicated because our society sometimes puts men in one group and women & children in another group. (I am thinking of the sinking of the Titanic with women and children getting into the life-boats first, or the news reports about "even women & children" being killed.) But the point I am trying to make is this: My status as a capable, responsible, self-reliant adult is what is called into question (at least in my mind) because of my visual condition.

Lionel's association of masculinity with independence, and femininity with dependence, has been shaped by the social and political culture of his time. Although his reference to the Titanic may seem dated, the conceptual split between "men" and "women and children" remains steadfast in today's parlance.

However, in more recent events, and during our discussions of these incidents, Lionel indicated growing ambivalence about downplaying his situation. He mused that the need to disclose each quarter with each new group of students was making disclosure in general easier to do. He also noted that he was becoming increasingly comfortable with mentioning or referring to his visual condition in the classroom after disclosure:

I think I'm getting better at [reminding people of the visual condition] – or at least I'm being forced to deal with it. .. being forced to deal with it is probably good. If I didn't have students, I wouldn't be forced to deal with it. Which is good.

In the excerpt above, he reflects on the experience of un/covering as something he's "getting better at," adding "being forced to deal with it is probably good." This self-reflection reveals that he thinks un/covering is a positive, if still uncomfortable, move or one that is "probably good."

Lionel also described moments when reminding others of his visual condition made things easier and alleviated stress. He described making a study guide for his students using a grid with different shades of color that seemed clear on his computer screen, but all looked the same color to him when printed out on the copier. He tried adjusting things that didn't seem to make a difference and started to "freak out" about how useless this tool was going to be. In that instance, he decided rather than continuing to stress about how to fix it to just directly ask students if they could see what he could not. He prepared exactly how he would explain the situation to his class and began by telling them the copies "looked weird" to him and asked if they could differentiate the grid. He prepared for questions and probing about his condition or the severity of his low vision, "but they were like 'oh, we can see it fine.' And that was it." He laughed after sharing this story, commenting that it turned out really to "not be that big of a deal." Although Lionel's decision to un/cover may not have been a 'big deal' to his students, the reduction in stress and worry over explaining or justifying his impairment has clearly had a lasting effect on him.

As Lionel catalogued occasions when he downplayed his visual condition and moments when he openly acknowledged the impacts of it, he began discussing how those interactions might have turned out if had done the opposite. This led him to discussing what the "ideal" accommodations would be for him. For example, in an ideal world, he would simply wear sunglasses in most of his classrooms and the office to reduce painful headaches and further obscured vision due to fluorescent lighting. He states such behavior would act like a beacon calling attention to his visual condition. However, as he discussed the potential consequences of such action, he concluded that managing reactions from colleagues and students would not be that dire. He mused:

Maybe it would be a better thing for me to do in terms of my own – I mean, everything would be out there. It would be weird at first, but then maybe the weirdness would go away after I just came to terms with that. Right now, I'm sort of living in this middle ground. I don't know, it might be better for me to just say: "I have a visual condition and it is what it is."

Lionel expressed frustration as he described instances when people "in the know" about his visual condition forgot how it impacts him; however, he also admitted to feeling a bit embarrassed when recounting instances when he downplayed his visual condition. Narrating these events in juxtaposition to each other, Lionel repeatedly ended vignettes of un/covering with comments like "I'm working on that" and "I'm getting better at that," indicating his conviction that, despite still being uncomfortable, un/covering is increasingly important to him.

Molly: I am not disabled enough…

Molly grew up in a large, white, Catholic family in which generosity, compassion and social justice were dominant themes of family life. She attended Catholic schools through college. After college, Molly joined the Peace Corps and became a teacher. After a few years of teaching, she decided to enroll in graduate school to pursue a Ph.D. in Education. Near the end of her first year, Molly fell backwards down a flight of concrete stairs, resulting in traumatic brain injury (TBI). After four weeks in the hospital, Molly began an intensive and long process of rehabilitation and therapy. Being interviewed a few years after the injury, Molly described her primary impairments as deafness in her left ear, loss of sense of smell, and changed cognitive processing. Molly opted to have a bone anchored hearing aid (BAHA) surgically implanted to provide improved hearing in her left ear, but even with the BAHA Molly cannot locate sound sources and cannot follow multiple speakers at once. As a result, Molly and her family explored options for accommodations in school.

Still processing how TBI would impact her life, Molly described initially not wanting to call attention to her new way of being. Molly worried about the stigma that a cognitive impairment might carry in an academic program. Upon returning to her graduate program, she decided to inform professors and colleagues of the situation, but after disclosing information regarding her impairments she intentionally avoided talking about her changed needs in the classroom. She explains:

I wasn't really ready to talk about it, and I was really worried when I came back to school that people—I wasn't comfortable with what had happened to me, and I guess I didn't want the look of pity, but I did want people to be understanding.

Torn between wanting to be able to fully engage with her graduate program but not wanting to draw attention to her situation, Molly downplayed her TBI and tried to use minimal accommodations. She quickly determined that audio recordings of reading material was not enough, and realized that she required other means to participate in class discussions. Accessing additional accommodations, however, highlighted her impairments in ways she had not anticipated.

It was hard… When I was invisible those first two months in the classroom with just audio recording, I—it wasn't noticed by anyone. …. But when the accommodations changed to include a CART provider, my injury became visible, and in the beginning I didn't—it didn't affect me, but as my awareness grew, and my self-advocacy formed, I realized how, uh, compromising that—that accommodation was to my identity in the classroom.

Molly explained the myriad of ways that having a CART (Computer Access Realtime Translation, a system for realtime transcription of speech) provider in the classroom improved her ability to get the most out of her classes. She also described how making her impairments visible through this accommodation exposed her to students' reactions to having their ableist privileges challenged. Molly gave an example:

I had an experience in one of the newer classrooms that is fully teched out and has microphones on the tables, but [also] a CART provider. [The CART provider] couldn't identify who was talking because they didn't raise their hands very well in this room, and they'd didn't like using the microphones, and they verbally said out loud, "This makes me feel weird." And that's when I felt full-on bias, uh, discriminated against because everybody knew it was for my benefit. And that's how I started feeling: that everybody knows to talk one at a time, to raise their hand, to speak loudly for my benefit. And that is gross.

Molly confirmed that none of her fellow graduate students directly complained to her about having to accommodate her impairments. However, Molly felt the sting of this reaction to her difference in every eye roll or sigh made when students were reminded to raise their hand or talk one at a time.

Since those initial, sometimes painful, experiences upon returning to school, un/covering has played an important role in Molly's ability to socialize her colleagues and intimates into adjusting their behaviors to allow her to fully engage with them. Early on, Molly recognized the delicate balance between maintaining her privacy and reminding those around her of a different way of functioning. As a result of those initial interactions, she became more conscious of times when she felt pressured to downplay her impairment, but in doing so, also became aware of the tension and frustration of minimizing her needs:

So I try to blend in as much as I can. That said—[sigh]—there's a little bit of relief when I have someone with me, [or when] my disability is visible because I live with invisible disabilities, and the majority of my every day, nobody knows. And it stinks when people will not give you any—will not give you a break because you can't prove you have a brain injury.

The "bit of relief" Molly describes, when with someone who, for example, knows to move to her right so that she can hear them most clearly or those who refrain from talking over others in social situations, was earned by repeated reminders of her impairments. No one, Molly emphasized, "just gets it," but after a few reminders such behavior adjustments become habitual.

In the two years following her injury, Molly concretely experienced the socially constructed nature of disability through international travel. Disclosing and un/covering her impairments in a different cultural context brought American attitudes toward impairment into sharp relief. As part of her Ph.D. program, Molly spent time in Cambodia laying the groundwork for her dissertation work. In the lengthy excerpt below, she describes the contrast from disclosing her impairment in the U.S. to sharing this information with colleagues in Cambodia:

When I-when I got my device [bone anchored hearing aid], I then started to have to explain it, or at least, I felt I had to explain it because it was there. So the device helped me share that I was deaf in one ear, and the response [to] the deaf in one ear was complete pity accommodation. That was the [American] response. It was, like, "Oh. I'm so sorry," face droop, "Aww," concerned eyes. And then, "Oh, can you hear me now?" Like, so—an accommodation of people being louder.
…
Where in Cambodia—so I don't know the language. Those who do know English, it's limited. … I didn't know if they understood what deaf meant. So I would say, "My ear is broken." There was no change of facial affect. There was no change on, "Oh, what can I do for you?" It was a simple, neutral, "Okay." So there was—so all that-all that uncertainty-or, um, discomfort with personal presence in America simply never happened in Cambodia. And as I was there over time, I came to learn that—and I say this in my own work, is that disability is part of their social fabric, that there is so much disability that there is no… They simply say, "Oh. Okay." It's just another thing. And it's a common, a common understanding. There's no prejudice about it.

This experience of "a common understanding" that reduced social stigma surrounding impairment and the "simple, neutral" reactions when reminded to move to her right when speaking to her, contrasted sharply with the awkwardness, discomfort, or reactions of guilt or pity when reminding most Americans of her hearing impairment. As her own research began to center the dynamics of disability in education in international contexts, Molly reported an increasing awareness of her impairment as a source of identity as a disabled person in America.

However, as a person with an acquired, non-apparent impairment, Molly also struggled to find a place among local disability communities. Seeking support, Molly sought out others with impaired hearing. When describing her first experience with a local Deaf community, she says flatly: "I quickly learned I'm not big D. I'm little d." When asked to clarify the difference, she explains:

Sure. Big D is, um, the Deaf community, and in order to belong in that circle, you have to have,—[pause]—a hearing loss in both ears and have lost the ability to hear very early on, if not born with it. And big D community is a very strong community, that wants to maintain its, uh, American Sign Language and has very strong opinions about cochlear implants and assistive technology. …big D is a—is not just a community. It's a culture with its own living language. And small d is a diagnosis…

Molly said the people she met in that group "were all very respectful" but she felt "the odd one out" and eventually stopped attending. Molly describes eventually finding her "community," comprised of other people with TBI, but it is a small, dispersed group. She finds a sense of solidarity with them because they face many of the same barriers in society and can un/cover their ways of functioning without having to provide long, detailed narratives of the injury itself to explain how the impairments came about.

Despite her immersion into academic research on disability and a growing sense of empowerment of her own identity as a disabled person, Molly does not report feeling entirely accepted by or included in local disability communities. When asked about her experiences with broader disability groups (compared to TBI groups or Deaf groups) in her area, Molly expressed ambivalence and emphasized the ways having acquired an impairment – particularly a non-apparent one – distinguished her from many other disabled people. In the following exchange, Molly voices her feeling of 'otherness' even among those with impairments:

[Heather]: What about the broader community of people with other types of disabilities?
Molly: I don't feel that I'm accepted.
[Heather]: Tell me more.
Molly: [Sigh] In the disability community, the others with disability—[sigh]—I'm a newbie. I don't 'understand the history' [she makes air quotes with her fingers]. … I don't fit. Nobody looks at me and knows, and I don't—I guess I just—I'm not in the quick yet. [long pause] And I really do see it like that. I see the disability community as pretty closed.

In a later conversation, Molly returned to the topic of not fitting in with disability activists, despite her own efforts at increasing awareness of disability among her colleagues and in her field:

And I feel at times some people who are really very much active in disability rights do not put it very gently to me. And it's abrasive, and it's hard, and it makes me feel like I don't belong, that "because I don't have all of your shared experiences, I am not one of you." And—[pause]—I walk away with feeling that mine is not severe enough. …Like I am not disabled enough…
…
But they don't see that the crack is always there, and it always will be. It's always gonna be there, and it's always gonna be invisible, but it's felt. … I recently heard that, um—in talking about race—that some people wake up every day, and they—have this thing that they have on their shoulders— before they go into their day, and I just wanted to scream, "I get it." But it doesn't feel socially acceptable for me to say that. When we talk about inequity, I'm not included. This disability is not at the same level, and especially because it's invisible.

Molly thus describes making fellow students "feel weird" when having to accommodate her impairments in class, juxtaposed with feeling "not disabled enough" to fit in with disabled people. Thus, while Molly may experience the stigma of disability among the nondisabled, she also faces stigma among disabled people who have lived their entire lives with impairment and who have become steeped in disability history and activism.

Despite experiences of marginalization in a variety of contexts, Molly remains a strong advocate for herself and others with impairments. She ends each of these stories explaining why it is so important for people with non-apparent impairments to talk about and acknowledge the ways in they function differently and how improved our lives can be through oftentimes very simple accommodations. Now, several years after her injury, she reports that the sting of discrimination hasn't necessarily lessened, but that disclosing and having ongoing conversations about her impairments has been integrated into her social and work lives. When asked why, she states:

As a teacher, I see every child in a holistic way as much as I possibly can, and I do that with all of my friends and my colleagues as well. I want to know them as much as I possibly can so that our work together is mutually beneficial and mutually challenging. … And I guess—let's flip it. Why do I need to tell the group? Because I want them to see me holistically. I want them to see my passion and hear a little bit of my story, and I don't ever wanna cut something out of my life or my identity. …I feel like by not disclosing or talking about it, we are continually perpetuating this, "It's a big deal. It's a big deal. Tip-toe around me." …So I just—I feel like we need—we need to be a little more honest with each other, and honesty hurts at times, but the more honest we are, the less painful it is. Right? But maybe that's me being optimistic…

Molly's optimism is no doubt tied to the strong family support structure she has and an upbringing that emphasized the importance of social justice. Her narrative reveals the important ways that the practice of un/covering – beyond the impact of simple disclosure – helps socialize her colleagues and intimates into understanding her as a more complete person and enables her to work with others in ways that are "mutually beneficial and mutually challenging." Beyond her own relationships, Molly uses the practice of un/covering to broadcast the message that, when acknowledged and accommodated, impairment isn't, in her words, "a big deal."