Perils and Prospects of Disclosing Disability Identity in Higher Education

Margaret Price, Associate Professor of English, Spelman College

Margaret Price
Associate Professor of English
Spelman College

Stephanie Kerschbaum, Assistant Professor of English, University of Delaware

Stephanie Kerschbaum
Assistant Professor of English
University of Delaware

Our guest bloggers are the organizers of the Disability Disclosure In/And Higher Education Conference sponsored by the Center for the Study of Diversity and held October 25-27, 2013.  Their post provides their account of the issues they confronted in organizing and implementing the conference, ways in which it broke new ground and ways in which it fell short of some of their goals.  The complexities of disclosing one’s disability in a higher education environment are addressed and ways to ameliorate some of the problems disclosure entails are discussed.

What does it mean to “disclose” a disability? This is a question relevant at all levels of university life. Students with disabilities must discuss their accommodations with their professors, with fellow students, and with disability services offices; disabled faculty and staff members must figure out how to arrange accommodations, although they may not be sure whom to approach or if it’s even safe to do so, due to concerns about how they may be perceived as a consequence of disclosing a disability. Our ongoing research on disability and disclosure has revealed that the process of disclosing a disability in a higher-education setting is multi-layered, often risky and generally not well-understood. In October, 2013 we joined nearly 100 other scholars and activists to explore these issues and more at the Disability Disclosure in/and Higher Education Conference sponsored by the Center for the Study of Diversity and held at UD’s Clayton Hall.

Exploring disability disclosure helps clarify some of the misunderstandings that persist where disability is concerned. For example, in January 2012, the American Association of University Professors issued a report titled “Accommodating Faculty Members Who Have Disabilities.” The report states at one point, “Unless a disability and the limitations it creates are obvious, the institution may need information about the nature and extent of the disability” (4). The implication here is that disclosure is not necessary when a disability is “obvious.” However, our research as well as our personal experiences as disabled faculty members have indicated to us exactly the opposite: even if a disability is readily noticeable by others (as is the case with Stephanie’s deafness) there almost always remain significant gaps in understanding that affect access, accommodation, and social interaction. People may not be used to making sure Stephanie can see them while they are speaking, or they may unwittingly take actions that prevent access, such as turning off lights or not using microphones during a presentation.

Put another way, even when “deafness” is readily identified as Stephanie’s disability, and “not-hearing” as a limitation caused by her disability, that information offers little concrete understanding of what her disability entails. Nor does it communicate what actions, moves, or accommodations might be necessary in any given situation. And when a disability is not immediately “obvious,” (as is the case with Margaret’s mental disability), even if diagnostic labels are shared and information about a particular disability is provided, few people will know what to do or how to respond to build greater access, accommodation, and support. We refer to this kind of knowledge as “disability literacy”. Building broader disability literacy—not just for individual disabled people but for everyone involved in higher education—is vital, and it is hard work whether or not a disability is “obvious.”

Carrying out that hard work requires looking carefully at the complex choreography of social interaction within academe. Our research shows that disability repeatedly disrupts people’s expectations about how interactions unfold and ways to respond to them. Such responses might include making sure that deaf people who lip read are looking at you when speaking; recognizing symptoms of a panic attack and being able to calmly negotiate that event; or developing a repertoire of means for enabling students to participate in classroom discussion (see Yergeau).

These examples illustrate that disabled students, faculty, and staff regularly have to name, point to, and work around their experiences of disability in all kinds of settings—from classrooms to professional interactions to office cubicles—that expect or require specific ways of behaving within them. What we advocate for here is not more diagnostic labeling of particular disabilities or medical conditions, but rather, a way of building collaborative and interdependent efforts that bring together faculty, staff, and students with disabilities and those who identify as nondisabled to broaden all kinds of access to higher education.

In our work organizing the “Disability Disclosure in/and Higher Education” conference, we identified the work of broadening access as not just our job as organizers in collaboration with those who made accommodation requests, but as an interdependent effort involving all of the conference attendees and participants. This work involved creating an environment in which attention would be paid not only to material, social, and physical accommodations for particular individuals, but also to the ways that all participants’ behaviors and practices would need to change and adapt as well. For example, we not only focused on ensuring that wheelchair users could enter the space, move within it, and use the bathrooms, but also on providing other kinds of access not always imagined or included in many large academic gatherings.

For people with chemical sensitivities, we worked to reduce and eliminate fragrances (providing fragrance-free soap and shampoo for participant use at the conference); we offered a quiet room that was tucked at the end of a corridor with comfortable furniture, natural light and snacks; we assembled a schedule that provided ample down-time opportunity; we provided photographs of conference spaces accompanied by crowd-sourced descriptions; and we integrated interaction badges into the conference to provide a means for participants to nonverbally signal their preferred level of interaction.

The conference became a site of participatory access, with attendees sharing responsibility for a collective commitment to access by (re)shaping the conference environment in various ways, such as by bringing soft pillows to the presentation rooms, pointing out hazardous areas (such as stairs) that needed to be marked for greater visibility, and inviting audience members at sessions to lie down or arrange their bodies in any way they would find comfortable.

While we believe such work ought to be part of everyday event planning for accessibility, we were also repeatedly reminded that there will always be forms of access that require that attendees disclose a disability, an experience, a need, or make complicated prior arrangements. And, despite our best efforts at incorporating broad accessibility, a number of inaccessible elements remained throughout the event. For example, we were reminded that the people present at the conference represented some of the most privileged disabled people: those who are healthy and well enough to travel, who can afford to spend three days in a rarefied space engaging in intellectual and social conversation, and who can procure institutional funding or other financial support (especially for those who came long distances or from other countries to attend).

We also confronted the ways that disability literacy deeply engages intersections between disability and other identity categories. Whiteness provides both of us enormous privilege, and affords us, in many cases, the energy and inclination to call out our disabilities and to engage in work that will expand access—for ourselves and for others—across myriad institutional spaces. Both of us make choices every day regarding the degree to which we will call attention to—or keep under wraps—our experiences of disability, and we also make choices about how much to invite others to think about their own experience of disability through interactions with us.

At the conference, disclosures of all kinds emerged, and more than one participant remarked, “I didn’t know I was going to talk about this.” It is not surprising that disability identities became an essential subject at a conference focused on the theme of disability disclosure. However, another kind of disclosure—involving the intersection between disability identity and racial, gender, and sexual identity—was more fraught. Attendees at the conference were overwhelmingly white, an observation remarked upon by both attendees and presenters. In her plenary remarks at the conference Mel Chen raised vital questions about the range of bodies and minds “allowed” in academia, noting that through disclosure, through shared exploration of different—disabled—positionalities, productive work can happen that might expand access to higher education for all bodies and minds.

As Chen pointed out, racialized identities intersect with disabled identities to create different avenues and possibilities for claiming space, disclosing a disability, requesting accommodation, or doing the work of asking others to think about and through disability. Ironically, Chen was speaking from a space that was limited both temporally (he was asked to share a plenary spot with another presenter) and in terms of representation (he was one of only two featured speakers of color). For some participants, then, the conference space was not a space where they could bring “their whole selves,” as Kathleen Martinez, another conference keynote presenter, asserted. We have reflected deeply on what this means, and believe it’s critical for university administrators, faculty, staff, and students alike to continue these conversations.

In composing these reflections, we have turned repeatedly to P. Gabrielle Foreman’s powerful words in her essay “A Riff, a Call, and a Response,” in which she calls upon us to remember the (numerous) privileges we held, and still hold, as organizers and as scholars. As Foreman underscores throughout her essay, working towards social justice and equity in academic spaces requires continued—and constant—vigilance. She writes, “Quite predictably, without structures of accountability that help produce the constancy and consistency needed to rebuff the creeping and often invisible replication of power, it continues, even when those of us who care deeply about those very issues are at the helm” (315).

Disability justice, a movement that centers the experiences, knowledge, and needs of people of color, is growing, yet its gains seem to emerge in gatherings such as this conference and the annual Society for Disability Studies conference only peripherally. What will create institutional change to help redress these inequities? How can we consistently work to check our privilege and join Foreman in asking hard, important questions: “What does it mean to be a good citizen in the field? . . . How do we challenge hushed entitlements and rethink our institutional processes? . . . What are the rights and privileges, the responsibilities, of belonging to fields that study the culture and the concerns, the lives and literary production, the circulation and consumption of disempowered groups—as someone who belongs to relatively empowered groups, as all of us, in part, today do?” (316).

As organizers, we cannot offer answers to these questions in this space, but we do want to offer two things. First, we offer a sincere account of our planning process, of our efforts to enact a just space, and our accountable awareness that our efforts were only partially successful. Second, we offer ourselves as listeners and contributors to an ongoing conversation about the issues raised by the conference. These questions include the resonant queries from Foreman, as well as questions regarding what it means to “gather” as a community and what it means to be safe, safer, or unsafe in all kinds of spaces across higher education. We look forward to your comments, and we give our deepest gratitude to all those who are exploring these questions with us.

Works Cited

Foreman, P. Gabrielle. “A Riff, A Call, and A Response: Reframing the Problem that Led to Our Being Tokens in Ethnic and Gender Studies; or, Where Are We Going Anyway and with Whom Will We Travel?” Legacy: A Journal of American Women Writers 30.2 (2013): 306-322.

Kerschbaum, Stephanie L., Rosemarie Garland-Thomson, Sushil K. Oswal, Amy Vidali, Susan Ghiaciuc, Margaret Price, Jay Dolmage, Craig A. Meyer, Brenda Brueggemann, and Ellen Samuels. “Faculty Members, Accommodation, and Access in Higher Education.” Profession (December 2013). Web.

Yergeau, Melanie. “Reason.” In “Multimodality in Motion: Disability and Kairotic Spaces.” With Elizabeth Brewer, Stephanie Kerschbaum, Sushil Oswal, Margaret Price, Michael Salvo, Cynthia Selfe, Franny Howes. Kairos: A Journal of Rhetoric, Technology, and Pedagogy 18.1 (2013): n. pag.

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1 thought on “Perils and Prospects of Disclosing Disability Identity in Higher Education

  1. Disabled people face daunting challenges in accessing professional conferences. As an attendee of this conference, I found more access, and levels of access than I have ever encountered. The thoughtful planning really showed and many people who are typically marginalized at conferences were provided with well-designed and communicated accessibility.

    Economic access remained, as always, a huge barrier. Without a commitment from the very beginning to providing free registrations and hotel rooms as well as subsidized travel, conferences continue to be venues for people with substantial economic privilege. This usually correlates with white privilege as well.

    Thank you for acknowledging the ways that the conference assisted some participants and restricted others.

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