Instructions: Read the questions first. Then look at the attachments because the questions are based on the attached reading. For #2 click at the link at the end of the questions. You don't need to pu

211 Doing Disability with Others Re\becca Sanchez As this volume attests, in recent years, the rhetoric of disclosure has become the dominant way of framing conversations about disability in the academy.

Job seekers debate the best time to disclose a disability to potential employ- ers. Faculty develop strategies for disclosing their own disabilities to stu- dents on the first day of class, as well as for creating environments in which students feel comfortable disclosing their own (see Knight, this volume).

Researchers question whether including disclosures of personal experiences with disability will strengthen their scholarship. For many people, thinking of such communicative exchanges specifically as disclosures has evoked a pro- ductive sense of openness, a sense that disability is an identity that can be proudly claimed rather than something that must be hidden. This language has mapped particularly well onto one of the most frequent formats for rais- ing disability as a topic in universities: the accommodation request.Despite these benefits, however, I will argue that framing disclosure as a singular communicative exchange carries with it a great deal of problematic ideological baggage that is counterproductive to the very goals of many dis- closures. Put briefly, it reinforces preconceptions about disability as static, and it mischaracterizes the complex ways that most exchanges of information about disability unfold. After unpacking some of this baggage, I will explore alternatives to this paradigm through a consideration of three artifacts— wheelc hair lights, a “DeafBlind and Badass” button, and a “Piss on Pity” t- shir t— that mo ve away from the emphasis on a singular, formal moment of revelation inherent in the idea of disclosure and toward an articulation of more flexible ways of doing disability in public space. Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages 212   •  Negotiating Disability Disclosure and Its Pitfalls Today’s disability disclosures take place within a broader cultural moment that valorizes both identification and information sharing. The proliferation of social media and personal technology has exponentially increased the fre- quency with which individuals are either required or strongly encouraged to provide details regarding their age, gender, ethnicity, relationships, and ability status. One way to understand the pressure to make globally public infor- mation that previous generations would have understood as private (or as public only to a select group of people) is in relation to what Samuels (2014) describes as the “crisis of identification” that emerged in the mid- nineteenth centur y over increasing social mobility. This mobility challenged established societal hierarchies and made individuals more difficult to classify and gov- ern. In response to such boundary blurring, Samuels argues that “a range of fantastical solutions began to circulate  .  .  . eventually becoming solidified into our twenty- first- centur y discourses about bodies and identities. These fantasies of identification seek to definitively identify bodies, to place them in categories delineated by race, gender, or ability status” (2). Although Samuels is primarily concerned with the biological means through which these identities are validated, her account historicizes identi- fication and serves as a reminder of the complex and, at times, contradictory ways that identity functions. While the investment in identity politics in our own historical moment has emphasized the powerful and self- affir ming ef- fects of the kinds of identifications associated with disclosures (“I am X”), identity categorization can also operate as a means of control, dividing popu- lations so as to render them legible and effacing the complexities of individu- als’ understandings of themselves and their relationships to other subjects and to society. The tension between these effects of identification is present in many ac- counts of the experiences surrounding acts of disclosure. In “On Rhetorical Agency,” for example, Kerschbaum interrogates both the “deeply agentive” role disclosures can play and her own ambivalence over the microaggres- sions through which disabled faculty are pushed to explicitly discuss their physical, sensory, intellectual, and psychiatric differences in their scholarship (2014, 69). The pressure to disclose, to render one’s body legible to the gaze of administrators, colleagues, and readers in particular ways, serves as a power- ful reminder of the structurally conservative ways in which identification can function. Without losing sight of its productive functions, it is necessary to Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages Doing Disability with Others   •  213 remain attentive to the extent to which these pressures are symptomatic of the framing of identity embedded in the idea of disclosure itself.To disclose is to “reveal new or secret information” (OED Online 2015).

When we talk about disclosing an identity, then, that identity is positioned as a secret, something hidden and associated with concealment and shame. Like the logic of the closet, disclosure operates to create a binary division between those who have already revealed the “secret” of their disability and those who have not. In so doing, it produces a closet, a space of nondisclosure into which those who cannot or do not wish to discuss their disabilities, or who do so in ways that are not legible under this paradigm, are forced. While disclosure places the emphasis on a different point in the process of revelation (“the closet” focuses on spaces occupied by individuals who, it is presumed, feel pressure to conceal their identities, whereas “disclosure” emphasizes the com- municative acts through which individuals exit these spaces), both function to produce unhelpful divisions within minority populations that reinforce erroneous preconceptions about the meanings of those identities. In “My Body, My Closet,” Samuels (2013) draws attention to a number of complications that arise from engaging the rhetoric of the closet to describe the act of sharing information about a nonvisible disability, critiques that might also be applied to the structurally similar framework of disclosure.

One of the problems Samuels identifies has to do with temporality. As she explains, “coming out [is not] a static or singular event  .  .  . an over- the- r ainbow shift that divides one’s life before and after the event” (319). Unlike the disclosure of one’s salary, exchanges of information about disability do not take place in instants of revelation but unfold over crip time, described by disability activist and artist Petra Kuppers as “lemonade time: tea, coffee, drip / time . . . time for us breathing” (2008) that exists outside of “productive, forward- leaning , exciting time” (Kuppers 2014, 29).

The fetishization of a single moment of disclosure perpetuates fantasies of identification that hold that identities constitute the kind of information that can be revealed in a single word or sentence, on a single form, through a blood test. Such fantasies are dangerous. They emphasize reductive labels that leave no space for bodies (and our understanding of bodies) to change over time. And they efface the role of context and conversational partners in determinations about the presentation of disability, the particularities of the power differentials across which we are always communicating in aca- demic settings, and the complex calculations of probabilities of increased or decreased personal safety (physical, emotional, financial) that shape people’s Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages 214   •  Negotiating Disability decisions about when, where, and how to discuss disability. By attempting to produce disability as a stable truth, something that can be revealed in a single exchange, disclosure simultaneously causes us to overly invest in utterances we recognize as such and to fail to register forms of communication that we don’t. These implications haunt the language of disclosure itself, regardless of the intentions of the individual disclosing.By means of illustration, let us consider the information conveyed in a statement readily legible as a disclosure: “I am blind.” “I am blind” clearly constitutes a revelation of information. What is less apparent is precisely what information it conveys (and, by extension, what information it doesn’t).

The assertion informs conversational partners of the fact that “blind” is a label the speaker claims for herself. It might be reasonably extrapolated that it is also the term she prefers others use to describe her. While the speaker may intend to embed additional information in the statement, however, it is not self- e vident that she does so. The disclosure does not, for example, specify the level or quality of the speaker’s vision, whether she has always been blind or if her vision has deteriorated (or is continuing to deteriorate), the accommoda- tions she might prefer, whether she considers blindness a part of her identity or a biological fact (or both, or neither). It is also silent on the matter of what she wants her conversational partner to do with this information. When we assume the statement “I am blind” contains deep insight into its speaker, we increase the chances for misunderstanding, even in situations in which the speaker does mean for it to carry this weight. For such statements to be useful, they must be seen to constitute the beginning of a communica- tive exchange rather than the end. But once a secret (or a label, or a diagnosis) is revealed, the disclosure is over. Emphasizing (by naming) the revelatory instant, in many ways the least informative component of a communicative exchange about disability, distracts us from the much more significant subse- quent communication. Through this emphasis, by failing to call attention to the times and spaces in which extended conversations about disability occur, disclosure makes such spaces difficult to conceptualize. In a troublingly self- per petuating cycle, they therefore become less likely to be created.In addition to predisposing us to overly invest in identificatory statements, the ideology of disclosure also establishes a line between revealed knowledge and hidden secrets, between speech acts and silence. This division predisposes us to overlook information about disability that is shared in situations that do not seem like disclosures. One example of the consequences of this can be observed in the preface to Helen Keller’s 1908 essay “The World I Live In,” in which Keller explains her frequent use of the genre of autobiography. While Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages Doing Disability with Others   •  215 the essay itself presents Keller’s understanding of deafblindness in terms that are legible under a paradigm of disclosure (she specifically references her dis- ability and the insights it has given her into sensory perception), the preface rails against a publishing world and reading public that demanded that her writing adhere to this formula:Every book is in a sense autobiographical. But while other self- r ecording creatures are permitted at least to seem to change the sub- ject, apparently nobody cares what I think of the tariff, the conserva- tion of our natural resources, or the conflicts which revolve about the name of Dreyfus. If I offer to reform the educational system of the world, my editorial friends say, “That is interesting. But will you please tell us what idea you had of goodness and beauty when you were six years old?”  .  .  . The Editors are so kind that they are no doubt right in thinking that nothing I have to say about the affairs of the uni- verse would be interesting. But until they give me opportunity to write about matters that are not- me , the world must go on uninstructed and unreformed, and I can only do my best with the one small subject upon which I am allowed to discourse. (Keller 2009, xi) Looking for literal references to her disabilities, Keller’s editors were in- capable of considering what her writing about the Dreyfus affair or the tar- iff could have contributed not only to readers’ thinking about those topics but also to their understanding of disability. In addition to capturing Keller’s frustrated sarcasm at the limitations others’ perceptions of her imposed on her writing practices, the passage significantly highlights the silencing that can ironically (and often invisibly) occur when we approach disability in the binary terms associated with disclosure. Were Keller’s editors to have taken seriously her assertion that “Every book is in a sense autobiographical,” a potentially very different image of deafblindness could have emerged between the lines, in the gaps and silences surrounding words that did not explicitly pertain to disability. Like a disabled academic choosing not to begin an essay by explaining his or her personal relationship to disability, Keller’s writing about “matters that are not- me ” would have performed a different kind of disability politics by forcing read- ers to confront the fact that the interests of disabled people are not always or only linked to their own embodied experiences and that, even more signifi- cantly, the connections between these interests and their states of embodi- ment emerge in unexpected and unpredictable ways. Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages 216   •  Negotiating Disability Developing tools for understanding such insight, working toward a more flexible vocabulary that accounts for the range of ways in which individu- als express meaning, therefore, necessitates learning how to better interpret the kinds of information about disability shared beyond explicit assertions of identity. As Foucault explains in The History of Sexuality in relation to sexually marginalized identities, Silence itself— the things one declines to say, or is forbidden to name, the discretion that is required between different speakers— is less the absolute limit of discourse , the other side from which it is separated by a strict boundary, than an element that functions alongside the things said, with them and in relation to them within over- al l strate- gies.  .  .  . We must try to determine the different ways of not saying such things.  .  .  . There is not one but many silences, and they are an integral part of the strategies that underlie and permeate discourses.

(1990, 27) While it is certainly the case that some silences result from silencing, and that work in disability studies needs to continue attempting to ameliorate the complex factors that prevent individuals from discussing disability when they want to, to assume that all silence, empty space, or communication that does not fit into the box of disclosure results from such silencing is to ignore vital insights about disability and to ensure that only perspectives that are legible under our current paradigms enter the discourse. Academics experience a great deal of pressure to disclose information sur- rounding their disabilities, not only to institutions in order to receive accom- modation and to avoid the insinuation that they are “hiding” impairments but also socially, out of a sense that to “fail” to disclose is to indicate that they are not comfortable with their identities, that they are at a more nascent stage of personal development than those who speak openly with colleagues and students about their bodies. Rather than helping us to move beyond the limited and limiting ideas about disability that contribute to these pressures, the binary logic of disclosure serves to perpetuate them. Designing Encounters: Disability as a Verb In addition to the rhetoric of disclosure, then, we need to think more broadly about the “different ways of not saying” (Foucault 1990, 27) and of saying dif- Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages Doing Disability with Others   •  217 ferently, the diverse forms in which people speak, sign, draw, point, and are silent about disability, and to develop more effective toolkits for interpreting intentional and productive silence. One way to begin doing so is to replace disclosure’s emphasis on labels (on something that one is) with the idea sug- gested in the title of this essay, of disability as something that one does. De- veloped out of models of “racial formations” and of “doing gender,” Brown, Hamner, Foley, and Woodring explain, “doing disability” employsan interactionist perspective showing how constructions of identity are made and remade through interactions with individuals and with institutions. Disability is not viewed as an individual attribute, but as a process variable that emerges in specific sociohistorical contexts. Thus, understandings of disability are not static or necessarily holistic, but dependent on the social interactions and contexts in which disability is understood. (Brown et al. 2009, 4) By recognizing the ways individuals slide between modes of identifica- tion associated with various models (medical, social, political, cultural), “do- ing disability” takes the focus away from the individual body without eliding the importance of embodied difference. The activities that constitute “do- ing” disability combine attention to diverse physical, sensory, intellectual, and neurological states of being with the political, social, and cultural factors that shape the ways disability is discussed and performed in various contexts. The extended temporality of the verb “to do” also enables a space for playfulness and humor in discussions of disability that is missing from the bureaucratic frame of disclosure, with all of its legal connotations. In what follows, I will examine three examples of artifacts used as parts of strategies for doing dis- ability in and through interactions with others in order to excavate compo- nents that could be productively incorporated into academic conversations.

The first are decorative wheelchair lights. In a 2012 TED Talk entitled “We Are All Designers,” journalist John Hockenberry describes the way that adding flashing colored lights to his wheelchair changed his experience of navigating public space and the kinds of communicative exchanges he was able to engage in surrounding his para- plegia. For many years, he explains, his presence ignited a kind of panic in those around him. Strangers would rush to pull children out of his way while awkwardly avoiding eye contact lest they be perceived to be staring at him.

Despite attempting various strategies to alter these interactions (making “no Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages 218   •  Negotiating Disability eye contact  .  .  . dress[ing] up really, really sharply  .  .  . mak[ing] eye contact with everyone”) none were successful (Hockenberry 2012).This narrative provides another example of the unexpected consequences of disclosure’s ideological baggage, specifically of the ways that disclosure’s positioning of disability as a secret (something that has to be revealed) may limit opportunities for those with visible disabilities to engage in conver- sations about their experiences. Disclosure’s bifurcation of time into a “be- fore” and “after” of revelation separates nonvisible disabilities that need to be disclosed and visible disabilities that are supposedly already apparent in ways that ignore the crucial difference between sharing information about one’s body and being interpolated into a particular identity based on the (mis)perceptions of others. Believing that the visual evidence of disability (Hockenberry’s wheelchair) constituted a disclosure, and that what was be- ing disclosed was a narrative that fit within their preconceived notions of disability as tragedy, onlookers reacted to him according to a limited number of scripts. Trapped by their preconceptions about what conversations about disability needed to look like, they were unable to recognize the information Hockenberry was attempting to communicate through his various nonverbal strategies: dressing up to dispel the perception that all disabled people are economically disadvantaged, making eye contact to demonstrate that he was not ashamed or hiding. For Hockenberry, the solution to this impasse ultimately came not through developing new strategies for narrating his body or experiences, but by expressing an attitude toward disability through the flashing wheels that disrupted people’s assumptions, particularly the idea that the “truth” revealed by a wheelchair is a fundamental difference between the wheelchair user and those around him. By creating a situation in which Hockenberry did not need to awkwardly (and counterproductively) declare his similarity with on- lookers (“I am like you. Please acknowledge that.”), but in which others could recognize that for themselves, the wheels opened a space for more produc- tive interactions to take place. “To be recognized,” as Garland- Tho mson has explained, “is to become familiar, no longer strange, to be seen and accorded the status of fellow human. The trajectory of recognition is this: I recognize you by seeing your similarity and your difference to me, and then I make your strangeness familiar” (2009, 158). The flashing wheels encourage such recogni- tion by helping onlookers to identify points of similarity with Hockenberry:

an interest in design or technology, a sense of whimsy, a taste for colorful ac- cessories. These shared qualities did not erase Hockenberry’s difference. They made the chair more, not less, visible. But they altered the ways in which Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages Doing Disability with Others   •  219 that difference was understood. “Instead of blank stares and awkwardness,” Hockenberry describes, “now it is pointing and smiling! People going, ‘Awe- some wheels, dude! Those are awesome! I mean, I want some of those wheels!’ Little kids say, ‘Can I have a ride?’” (Hockenberry 2012).When we think in terms of disclosure, we are waiting for the revelation of a medical diagnosis, or a story of injury; we are predisposed to expect a situation in which the scripted response is either pity or the fulfillment of a need. What the wheels communicate instead, what makes the chair with the flashing wheels different from the chair without them is, as Hockenberry ex- plains, “intent . . . I’m no longer a victim. I chose to change the situation . . .

It conveys authorship” (Hockenberry, 2012). This authorship is specifically not expressed through a disclosure. The lights themselves are silent. Indeed, they operate to reduce the frequency with which Hockenberry is called upon to describe his accident and injuries. But that silence operates in Foucault’s sense, as an “integral part of strategies that . . . permeate discourse” (1990, 27) by expressing agency. In so doing, the lights, as well as the other artifacts I will discuss, reveal something critical about disability design. As Pullin has noted, design for disability has traditionally aimed to “be discreet and uncontroversial, unseen or at least not remarked on” (2009, 113).

The lights do just the opposite, drawing attention to both Hockenberry and his chair. They also run counter to the principle of utility, the “imperative to produce something immediately useful,” that similarly dominates disability design and has led to the vast majority of items for disabled people being produced with a strict sense of functionality rather than an interest in critical design more broadly understood as that which helps us to actively interro- gate our surroundings (Pullin 2009, 113). In one sense, Hockenberry’s wheels serve no purpose; he specifically notes that they are not there for safety. Like hearing aid jewelry, colorful canes, or tattoos for prosthetics, the lights are purely aesthetic. But despite, or perhaps because of, the fact that they are not designed to be useful, the lights end up performing vital work by en- abling people to perceive disability and its accouterments in aesthetic terms, as something that can be desired (“I want some of those wheels!”) rather than only needed or feared. Unlike the very goal- or iented ways in which disability disclosure is framed in academic settings (recognizable disabilities are revealed in the hopes of receiving specific accommodations), the sense of disability as aesthetic, desirable, and critically engaged rubs against the grain of commonly held assumptions, necessitating the creation of new vocabular- ies and forms of interaction that are not bound to limited understandings of bodily difference. Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages 220   •  Negotiating Disability The second artifact I consider here, a 2.25- inc h purple button with the words “DeafBlind and Badass” written across it in a bold black font, simi- larly undermines popular perceptions about what and how disability signi- fies. Riffing on the “Deaf and Low Vision” or “deaf and blind” slogans worn by some DeafBlind individuals as a form of disclosure that (it is hoped) will increase the personal safety of the wearer; the button makes visible an otherwise potentially nonvisible disability. It therefore serves as a reminder of the disability that always surrounds us even when we are unaware of it.

Its revelation of a specific disability also makes it useful in the sense Pullin describes; it “solv[es] problems” by highlighting disability’s presence (Pul- lin 2009, xv). “Badass” might also be understood as pragmatic in as much as it counteracts the sense of vulnerability that deafblindness may connote.

Although they take different approaches to doing so, both terms, then, at- tempt to increase personal safety. These pragmatic elements are crucial to the work that the button does, but it also operates in excess of both the slogans from which it derives and the ideology of disclosure. This combina- tion of pragmatics with elements of critical design offers insight into how such factors might similarly be balanced in academic environments, where the desire to design social encounters in new and creative ways around disability must always be negotiated in relation to the current pragmatic necessity of making sure that one’s self- pr esentation fits into the boxes that will enable one to receive accommodation. Like Hockenberry’s lights, the “DeafBlind and Badass” button reveals authorship, not only of the artifact itself but of the individual’s experience of disability. Both the color and the profanity convey information about the wearer’s personal preferences that may provide others with a way of recogniz- ing similarity that undercuts the fear or pity potentially evoked by the idea of deafblindness. Insisting that the identity of the individual not be subsumed by disability, the button capitalizes both “DeafBlind” and “Badass” and gives the terms equal space, indicating that the latter is just as important as the former in understanding the wearer. In addition to emphasizing the impor- tance of playfulness in both design and disability, these strategies function to produce recognition in the terms that Garland- Tho mson (2009) advocates.

The fact that the button presents this information in language that must be read, an activity that necessitates looking at, rather than away from, the wearer also increases the chances that the wearer will be acknowledged as an individual rather than interpolated as a symbol of perceived tragedy. The choice of “DeafBlind” rather than “deaf and blind” or “deaf and low vision” is also, to borrow Depoy and Gilson’s definition of design, “purposive and Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages Doing Disability with Others   •  221 intentional” (2013, 487). Whereas “deaf and blind” calls attention to the exis- tence of specific disabilities, “DeafBlind” asserts an identity, capitalizing both and running them together to create something new: a DeafBlind way of being that is more than a medical descriptor or than either of the two labels separately.For the button’s owner, the mixture of messages it conveys serves to pro- ductively frame encounters with strangers. As she explains, Having the button on my backpack enables me to fast- f orward past the first few awkward conversational moves. It makes people aware of my disability without me having to figure out the best time to inter- rupt them to tell them I can’t hear. It sometimes deflects questions about why I’m not moving or responding in predictable ways. And it sets a certain tone. “DeafBlind and Badass” doesn’t leave much space for sympathy. It provides information, but it also confuses people.

How is this girl moving around independently if she can’t see or hear?

I find that confusion useful. It means that people are less likely to approach me with the assumption that they already know all about deafblindness because they read a book on Helen Keller in first grade.

(Anonymous 2015) The disconnect between people’s assumptions about the meaning of deaf- blindness and the ways it is presented in both the button and its wearer’s behavior destabilizes the script for how disability is engaged. Rather than offering a bite- siz ed “truth” about the disability of the wearer, the button cre- ates confusion that can open up spaces for questions to be asked and deeper understandings of disability to emerge over more extended time, understand- ings that involve both attention to pragmatic physical needs (for those around the wearer to move out of her way or to adjust how they communicate with her) and a sense of play. By functioning as a kind of prosthetic disclosure, that is, the button enables conversations about disability to “fast- f orward” past the revelatory instant and focus instead on the next steps in the process of information sharing. The social model has trained us to think about the relationship between disability and the environment primarily in a singular direction: inaccessible built and social environments are disabling and need to be adapted so as to maximize the number of people who can move through them safely and comfortably. The responsibility for this adaptation is usually assumed to be that of primarily nondisabled government officials, architects, and contrac- Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages 222   •  Negotiating Disability tors. One of the other things the button highlights is the role disabled people play in restructuring these spaces by designing social encounters using vari- ous conversational techniques and material artifacts to move beyond unpro- ductive exchanges and to maximize the chances for more meaningful com- munication to take place.The third, and final, example I will consider is a “Piss on Pity” t- shir t.

Coined by disability activist and musician Alan Holdsworth in 1992 as a means of protesting the infantilization of telethons, the slogan encapsulates a rejection of paternalism that has been central to the disability rights move- ment. As Hahn explains with reference to his own shirt, “the movement is to treat disability as a source of dignity and pride. And as something positive.

And to reject the sympathy, the paternalism, and the pity with which the non- disabled w orld has traditionally approached this issue” (1995).

As Hahn’s comments indicate, in addition to restricting the possibilities within individual encounters, sympathy is also structurally problematic for the advancement of disability rights. When disability is perceived primarily through the lens of personal tragedy and the disabled understood as subjects to whom the most ethical response is pity, public policies and laws designed to enable the disabled are positioned as acts of charity rather than the re- sponsibility of governments, universities, and communities in recognition of disabled peoples’ civil rights. Like the symbolic baggage placed on wheel- chairs or presumptions about the meaning of deafblindness, pity functions as a means of separating people, dividing those who feel pity from those they pity in ways that run counter to strategies of recognition. By rejecting both this distancing and its implications, and drawing a direct connection between individual interactions and larger structures of power, “Piss on Pity” poses a challenge to ideologies that are at once global and intimate. An important component of this challenge is the preservation of the pos- sibility of silence surrounding the body of the wearer. The shirt neither names disability in general, nor provides specific information about its owner. In- stead, it discloses an attitude toward social relationality designed to destabi- lize viewers’ understandings of their own investment in questions of diverse embodiment. Rather than focusing on individual authorship, as does the but- ton, the shirt moves the conversation away from identity, which relies struc- turally on a division between individuals (“I am X,” “I am not X”). While not precluding a discussion of personal identification with disability, the work of the slogan does not require it. This reframing helps produce a space for conversations about disability that emphasize the political components of Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages Doing Disability with Others   •  223 disablement and the shared stakes of everyone, regardless of how they iden- tify, in undermining problematic forms of relationality like pity.To achieve this reframing, the shirt highlights both social and embodied elements of disability. As Serlin notes, it combines “the image of pissing as a natural biological function with the image of pissing as an aggressive act of individual and group disobedience” (2010, 185). Silence about the body of the wearer, that is, does not translate into silence about bodies generally; the ref- erence to pissing evokes both physicality and physical need. Significantly, this is a need that is shared by all people. Just like the reference to pity, an emotion with which everyone has personal experience, this framing invites interlocu- tors to take ownership of their personal responsibility in either perpetuating or ameliorating disabling discourse. As opposed to a disclosure, which can potentially create a line between speaker and viewer (most people to whom one discloses will not share one’s particular identity), “Piss on Pity” works to develop coalition. Though its approach is more politically focused than that of the other two artifacts, then, the balance of the slogan’s aggressiveness— not dem urely asking for recognition but demanding it— and silence w orks similarly to challenge assumptions about the kinds of communicative ex- changes that can occur around disability and to foster new kinds of interac- tions in those spaces. Conclusion There is a different kind of pragmatics to this approach to communication about disability; unlike disclosure, which emphasizes presenting disability in ways that are legible under current paradigms (thereby reinforcing those paradigms), these artifacts present modes of engaging disability that could ultimately lead to the development of more effective and meaningful insti- tutional thinking about accommodation. What kinds of conversations about human diversity might be possible, for example, if universities were archi- tecturally and socially designed in ways that encouraged all members of the community to recognize their investment in questions of diverse embodi- ment, if conversations about disability were not assumed to be the respon- sibility of those with disabilities to initiate, often through personal disclo- sures? What relationships could emerge if we stopped viewing the bodies of disabled faculty as texts through which their students and colleagues might be educated about disability? What kinds of critical thinking would develop in environments where disability was perceived not merely as something to Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages 224   •  Negotiating Disability be accommodated but as something to be genuinely desired, an occasion for humor and playfulness rather than a topic that evoked fear and trepidation?If part of the goal of communication about disability must of necessity take place within the confines of current attitudes and policy structures, we must also work to design these exchanges so that they can serve as compo- nents of strategies for calling into being the kinds of crip futures we want.

Language operates not only as a means of describing our existing reality but as a way of making possible something other, what Muñoz describes as the “not- y et- co nscious” (2009, 3). Despite the many benefits associated with dis- closure, thoughtfully detailed throughout this collection, the word itself cre- ates divisions between a before and after of disability’s revelation, between those who have and those who have not disclosed, that are not only inac- curate descriptions of the way most communication about disability takes place but that reinforce problematic assumptions about disability (and dis- abled people). While the fact that many people now feel comfortable disclos- ing disability within employment and educational environments represents a major step forward and should not be taken for granted, we also need to remain conscious of the problematic conceptual baggage that the language of disclosure carries with it and continue, through both our language and our silences, pushing on the ways conversations about disability are framed. The emphasis on design and agency, on productive confusion, and on the shared responsibility for initiating conversation about physical, sensory, and intel- lectual difference invoked by the artifacts discussed above represent just a few of the ways this work might proceed. References Anonymous. 2015. In discussion with the author, March 10, 2015.

Brown, Keith, Doris Hamner, Susan Foley, and Jonathan Woodring. 2009. “Doing Disability: Disability Formations in the Search for Work.” Sociological Inquiry 79.1: 3– 24.

Depoy, Elizabeth, and Stephen Gilson. 2013. “Disability, Design, and Branding: Rethinking Disability within the 21st Century.” In The Disability Studies Reader, 4th ed., edited by Lennard J. Davis, 485– 9 3. New York: Routledge.

“disclosure, n.” 2015. OED Online. Oxford University Press. http://www.oed.com/ view/Entry/53779?redirectedFrom=disclosure (accessed March 20, 2015).

Foucault, Michel. 1990. The History of Sexuality, vol. I. Translated by Robert Hurley. New York: Random House.

Garland- Tho mson, Rosemarie. 2009. Staring: How We Look. Oxford: Oxford Uni- versity Press. Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages Doing Disability with Others   •  225 Hahn, Harlan. 1995. Interview in Vital Signs: Crip Culture Talks Back. DVD. Di- rected by David Mitchell and Sharon Snyder. New York: Fanlight Productions.

Hockenberry, John. 2012. “We Are All Designers.” Presentation at TED. Long Beach, CA, March 2012.

Keller, Helen. 2009. The World I Live In & Optimism: A Collection of Essays (1908). Mineola, NY: Dover Publications Inc.

Kerschbaum, Stephanie. 2014. “On Rhetorical Agency and Disclosing Disability in Academic Writing.” Rhetoric Review 33.1: 55– 7 1.

Knight, Amber. This volume.

Kuppers, Petra. 2008. “Crip Time.” Disability Studies Quarterly 28.2. www.dsq-sds. org Kuppers, Petra. 2014. “Crip Time.” Tikkun 29.4: 29– 31.

Muño z, José Esteban. 2009. Cruising Utopia: The Then and There of Queer Futurity.

New York: New York University Press.

Pullin, Graham. 2009. Design Meets Disability. Cambridge, MA: MIT Press.

Samuels, Ellen. 2014. Fantasies of Identification: Disability, Gender, Race. New York: New York University Press.

Samuels, Ellen. 2013. “My Body, My Closet: Invisible Disability and the Limits of Coming Out.” In The Disability Studies Reader, 4th ed., edited by Lennard J.

Davis, 316– 3 2. New York: Routledge.

Serlin, David. 2010. “Pissing without Pity: Disability, Gender, and the Public Toi- let.” In Toilet: Public Restrooms and the Politics of Sharing, edited by Harvey Mo- lotch and Laura Noren, 167– 8 5. New York: New York University Press.Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.

Revised Pages Kerschbaum, Stephanie L., et al. Negotiating Disability : Disclosure and Higher Education, University of Michigan Press, 2017.

ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/ohiostate-ebooks/detail.action?docID=5153908.

Created from ohiostate-ebooks on 2020-06-20 13:30:40.

Copyright © 2017. University of Michigan Press. All rights reserved.