This is my presentation for #4c16 this year: “Reciprocal Disclosures: Co-Constructing Knowledge about Disability & Writing.” I presented on some of this dissertation research last year, which you can access here, but this year I am focusing on methodological challenges.
In Toward a New Rhetoric of Difference, Stephanie Kerschbaum argues that writing studies research—despite efforts to consider the multiple factors of students’ complex identities—often fixates on categorical identifications of difference. Today, I’m hoping to talk through some strategies for both challenging and engaging with the demands for disability disclosures in our writing studies research and pedagogy. And I want to raise some questions about disclosure:
- What are the ethical implications of asking students to disclose (even anonymously) in the studies that we design?
- What do we gain or risk when we disclose to students and research participants?
- How do disclosures benefit studies of accessibility yet simultaneously reinforce the idea that accessibility only benefits disabled people?
To address these questions, I’m going to reflect on the challenges that I had when designing a qualitative study of accessibility for my dissertation research.
In “Disability Studies Methodology: Explaining Ourselves to Ourselves,” Margaret Price addresses the complexities of DS methodology and what it means to research and account for disability. Adopting a DS methodology encourages us to be critical of long-held methods that may be inaccessible to researchers and/or participants, to adapt our methods, and to be reflexive and transparent about our practice (Price 168).
Price writes, “I argue that DS research must make more space for explicit identification by researchers—not in a rote, ‘here’s my diagnosis’ way, but in ways that are characterized by creativity, contradiction, and revision over time” (169). Following this, I wanted to make transparent my methodological choices when designing a study of students’ and instructors’ assumptions and assessments of accessibility and how I positioned and negotiated my own role as a researcher.
Last spring, after I finished a presentation about disability, someone raised their hand and told me that I read as nondisabled. And for the purposes of the student survey that I distributed—and the instructor workshop that I led—I did not disclose any information that indicated otherwise. I made this choice because my purpose is to talk with students and instructors about their experiences with disability and accessibility, and I didn’t want to impose my own beliefs—either as someone with a mental disability or as a disability researcher and teacher—onto what students and instructors were willing to share. I also didn’t want to fixate too much on myself. As Price notes, “the researcher who spends too much time on self-reflexive pondering may end up in what Brueggemann (1996) describes as ‘a solipsistic, rhetorical position in which the researcher (the self)—ah, once again—usurps the position of the subject (the other)” (19 qtd. in Price 170).
I did, however, at discrete moments within follow-up interviews disclose either to build connections or to explain my approach to a particular question.
I wanted to design a study about accessibility that solicited and welcomed disabled students’ perspectives without targeting disabled students. I believe that accessible practices benefit a variety of students, and I welcomed nondisabled students’ perspectives. When I tallied the surveys and began trying to make sense of the data, though, I was both disappointed that I hadn’t heard from more students who identified as disabled and annoyed by my reaction.
Would it not reinforce the idea that accessible practices only benefit disabled students if I had only solicited responses from disabled students?
At the same time, I didn’t want nondisabled students to overpower the voices of those who identified as disabled, and I chose to discuss the results separately within the chapter. I considered how this distinction might indeed reinforce Linton’s concerns of studying disability as something that differs from the norm (73), but I separated disabled and nondisabled students’ voices not to show how they are vastly different but rather to create a space for disabled students that they do not often have in writing studies scholarship and to draw connections across students’ responses.
Follow-Up Interview & Reciprocal Disclosures.
I want to focus on one student in particular, identified here as Tina, who offered a really valuable perspective on the complexities of relying on disability diagnoses and disclosures. We talked a lot about her struggles with multiple stimuli and also her struggle to process content that is presented in a single mode, e.g., auditory or visual.
As the interview progressed, it became clear that Tina and I held disparate beliefs about disability—specifically mental illness. This raised a methodological question for me about whether or not I should push on these conflicts. As Price argues, we must pay attention to moments of conflict in our qualitative research, and I hope to highlight how addressing these conflicts and being transparent can create space to nuance the researcher/subject relationship and produce more critical dialogue.
An hour into our interview, Tina disclosed that, along with struggling with multiple stimuli, she has dealt on and off with depression and anxiety:
[T]hroughout my life, I’ve dealt on and off with these issues of depression and anxiety. I mentioned this multiple stimuli thing that I have, so I can’t deal with multiple stimuli. So these are ways that make my brain if not disabled unique, you know what I mean?
I was interested in why she had shared this information—what had changed that she suddenly felt comfortable disclosing? What did she gain from that disclosure?
Positioning oneself in relationship to disability always exists in a complex web of discourses (Price 170), and I was curious if this disclosure was connected to what I had assumed were Tina’s own conflicting identifications with disability. Simi Linton argues, “Stating that one identifies as disabled or nondisabled calls attention to the absent voice of disabled people in scholarship and illustrates that the reader may tend to make the assumption, although probably not consciously, that the writer is nondisabled” (153).
Although I didn’t ask why she had chosen to disclose (or conversely, why she didn’t disclose in the anonymous survey), I wonder now if it was part of how Tina read me as I sat in front of her, trying not to nod my head or interject when she spoke, not indicating either way what my relationship to disability was or whether or not I agreed with what she was saying.
In her article “On Rhetorical Agency and Disclosing in Academic Writing,” Kerschbaum argues, that disability disclosures exist within complex systems of “circulating narratives of disability and able-bodiedness, relationships among interlocutors, and institutional and environmental contexts” (63). People make sense of the different disability discourses that circulate around them in relation to their own experiences and goals for how they want to identify themselves and be identified by others. Tina had not identified as disabled, yet she disclosed what are arguably emotional and learning disabilities.
She also relied heavily on rhetorics of overcoming throughout our conversation—discussing compensation, meeting norms and social standards, identifying and working through deficits. Because overcoming is such a prevalent disability discourse, the complexities of Tina’s disclosure make more sense. In the kairotic space of our interview, I hadn’t thought of creating a space where we could truly exchange knowledge; rather, I had established a space where Tina would share knowledge with me and where I held the power as someone conducting disability research without disclosing my own position to disability.
In the moment after Tina’s disclosure, I decided to disclose my own history with and scholarly interest in mental disabilities. I wasn’t sure what to expect—whether or not Tina would address it or build from it—but she immediately responded by explaining her experiences with depression and anxiety and more clearly articulated how her depression was connected with her writing:
When I was a teenager about the same age, I had issues with depression, anxiety, and I was seeing counselors, and those are problems that have never gone away for me. Especially when I was in college for a while it just got really bad. I was still doing [pause] you know my work in the classroom, I was getting really good grades, and I was involved in a lot of things. And for all intents and purposes, I was a functional human being except for the fact that I was completely overridden by these feelings, which I think more people have than admit to them. I learned slowly throughout college, the more I wrote then the better I felt about my writing, and not even like, Do I feel like this page of writing has been good and well executed? But also it’s more connected to a feeling of, Do I feel like I put everything into it? Do I feel like I threw myself into it and wrote it with everything I have? And when I feel that way about my work, the feelings of depression go away. And that is something that has never happened to me before.
Tina’s positioning of disability was articulated in a more nuanced way by the end of the conversation, but her understanding of my positioning had also changed. I don’t know why she chose to disclose to me or what she hoped to accomplish by doing so. I do know, however, that Tina waited until the end of our conversation to disclose and that only after my own disclosure did she discuss the nuances of her understandings of how depression and writing can work with (rather than against) each other.
For me, this exchange illustrates some of the complexities of doing qualitative research about disability and accessibility and the conflicting understandings of disability that are impacted by context and the relationship between researcher and participant.
There are similar complexities in the relationship between instructor and student, and disability disclosures are happening more frequently in my classrooms. I often have to explain to students that I can’t speak right now because I had panic attacks all night that have left my brain unable to make words form on dry lips.
And the more I teach my disability-themed FYW course, the more comfortable yet exhausting it is for me to disclose. Many college students struggle with their own mental disabilities, and when we read about depression and suicide, I share my experiences. Many of them do, too. I find that they ask more critical questions and write sharper analyses. But it’s also taxing and slightly terrifying as a first-year professor in a new department/school to be outing myself as the crazy one.
There are real issues with demanding disability disclosures in the qualitative research that we do (and in our classrooms through the form of accommodations), but there are real benefits when those disclosures occur in the kairotic spaces of interviews, office hours, class conversations. Kerschbaum argues that “emphasizing what we know or should know leaves scant room for students and teachers to co-construct knowledge about what it means to work together in a classroom” (66). When we step back from the traditional researcher or instructor as authority and disclosures are met with reciprocity, they present opportunities for researcher/participant and instructor/student to co-construct accessible practices.
 Kairotic spaces: “the less formal, often unnoticed, areas of academe where knowledge is produced and power is exchanged” (Price 60).