Abstract

In academic writing about disability, the impetus is typically used to subvert society's ableist structures and challenge misconceptions and misunderstanding around disability. However, due to the world-wide spread of COVID-19 and the restrictions put in place to reduce the virus's impact, such as asking people to wear masks in public places and the closing of universities and moving to entirely online learning, the author, who is deaf, found herself vulnerable and confronting a lack of access due to these measures. This reflexive paper will investigate how the pandemic and its effects forced the author to reconsider her ownership of her deafness. It will add to a growing body of autoethnographic disability research by contributing another facet to understandings around disability and self as they are actualized in the midst of the pandemic.


Like several scholars before me, (Blankmeyer Burke & Nicodemus, 2013; Brueggemann, 1997, 2009; Leigh, 2010) I have always found myself in the liminal spaces between deafness and hearing. I have moved through various categorizations in my life, using hearing impaired, hard-of-hearing, oral deaf, and, most recently, deaf as the descriptor of not only my medical hearing loss but also the ways I interact within a hearing world. Much like Leigh (2010), these labels, "can establish either commonality or marginality, depending on who is doing the categorizing and what their centers are" (Effects of Deaf Labels section, para. 4). In choosing these identities, I never fully realized the divisive nature of such categorizations because, for me, these labels reflected outward expressions of my communication needs and were chosen in response to my own emerging identity in acceptance of my loss and how it interacts with, and is positioned, within society.

But, within all those identities, there were overarching similarities and yearning to distance myself from the label of disability. Since I operate in the hearing world, I would use each of those identities over my mask of someone who felt she had to act as a hearing person. Leigh (2010) clearly articulates one of the main reasons I sought to distance myself from a label of disability, "Overtly or covertly, disability tends to be equated with powerlessness, incompetence, …or, a specific condition to be overcome by sheer will and motivation" (Disability and Deaf section, para.6). Throughout my life, I have found myself pushing and fighting against this idea of "powerlessness," as a young child operating in hearing spaces both in school and at home, and even now, as a professor in a hearing institution.

Early on, my version of pushing and fighting became situating myself as "passing." Passing in the sense that I passed for hearing because I communicate orally and rely on lip reading and facial cues to interact with the hearing world. On the surface I seem to pass as hearing since my hair covers my hearing aids and it is not until I open my mouth to begin to talk that my supposed hearing identity begins to pixelate. I get frequent comments about the way I talk and how I talk, which signify a difference that I have worked hard at bypassing. So, while I thought I was able to shed and fold up my deaf identity, to put in the closet for later, it inevitably emerges, revealing my conflicting thoughts and actions in believing hearing is the only way to exist, denying my own body's limitations and needs. However, this passing, this privilege, radically shattered with COVID-19. This critical event made me reflect on my taken-for-granted practices, my privileges, and my discomfort. Additionally, the daily interactions I have with people in my work, personal, and public spheres radically changed as a result of the pandemic.

In the United States of America, mask mandates were put in force across the country in all public spaces to help stop the spread of the virus. Communication has shifted away from face-to-face interactions to primarily a virtual sphere. However, my primary means of communication, lip-reading and facial cues, have all but been abolished with the use of these masks. Additionally, as a professor, the self-accommodations I make to teach my in-person courses got upended with virtual and remote learning. Therefore, my carefully situated yet tenuous identity as a deaf but passing individual gets upended, and it was not until I was no longer able to use my long-established strategies that I realized how important this privilege and access was to me. COVID-19 reshaped society and, consequently, reshaped access for people like me who relied on seeing mouths and facial cues to communicate, and rendered me vulnerable in ways I was not prepared for and concerned about. This paper explores this vulnerability, lack of access, and confrontation of my own discomfort and struggles when it came to acknowledging my identity as a woman who is deaf and my acceptance, post-pandemic, that I cannot go back to my previous ways of operating. But, first, I will explore issues of disability identity and accessibility and the use of disability writing as a point of catharsis.

Masks are not and were not the problem. It was not until I went into public and attempted to communicate with others wearing masks that this relational situation highlighted my disability. Kafter (2013) introduces a political-relational theory of disability in her work, Feminist, Queer, Crip. Moving away from the binary natures of the medical and social models of disability, she argues the problem of disability is solved "through social change and political transformation" (p. 6). The relational model is intended to speak to the reality that disability is experienced through relationships and does not exist in a vacuum (Kafer, 2013, p. 8). Disability is therefore, contingent, contextual, and contested. My identity has been shaken because of the pandemic's effects on how people now interact with each other. I had, previously, done my best to move through the world as someone with a so-called invisible disability but this masked, virtual, distanced culture made my disability "publicly visible" (Blankmeyer Burke & Nicodemus, 2013, Teresa-My Coming Out section, para. 6). This encounter of disability between my deaf body and others' masked bodies was not a simple meeting. It was, instead, as Kafer (2013) calls, "an assemblage," an event between bodies (p. 10). This event was where my passing, my categorization of normal and ability, failed to hold. Using this model to "recogniz[e] such moments of excess or failure is key to imagining disability…differently" (Kafer, 2013, p. 10). My encounters with my identity through COVID-19 raises multiple questions. It forced me to acknowledge my own needs as a professor teaching online classes with no captioning or subtitles at the start and as a woman in society attempting to communicate in spite of masks. It is through this framing and my writing of this paper, that I hope to "insist on a more nuanced and complicated understanding of disability as informed, but not determined, by lived experience" (Ferri, 2011, p. 2272).

In some academic writing about disability, the focus is on emancipation—freeing people with disabilities from the misconceptions, ideals, and shelving of their identities, struggles, and everyday lives (Mintz, 2007). Writing is used to highlight, and sometimes, critique how society interacts alongside and against those with disabilities, empower those with disabilities, and show the myriad of ways disability can look and function in society (Ferri, 2011; Garland-Thomson, 2007; Mintz, 2007). In short, in recent years, writing about disability talks back to and interrupts society's ideas of disability, allowing us to "imagine disability otherwise" (Ware, 2002, p. 146). My own academic writing has sought to do the same, as I have analyzed and highlighted literature on a specific disability experience, d/Deafness (Kersten, 2017), shared research on how reading literature on disabilities with abled bodied students disrupts their own understandings around disability (Kersten, 2017), and communicated the ableism I have felt in my own research process (Kersten-Parrish, 2020). In those pieces, personal details have been shared as a means of situating myself with the contexts of the subjects of those papers. Nonetheless, I have not used writing as a means to theorize my disabled body as it attempts to exist in society; I have not attempted to sift or analyze the everyday experience of my deafness. Indeed, in writing on the disabled body, Siebers argues, what is missing is they "fail to confront disability in any transformative way" in neglecting the daily, everyday needs and uses of the disabled body (as cited in Mintz, 2007, p. 3). By focusing on the realistic aspects of disability with and against abled society, writers who focus on the deep-rooted, insidious nature of disability can help "dismantle[] dominant stereotypes that obstruct ideological change." (Mintz, 2007, p. 4).

My story of my awareness of acknowledging permission to be disabled began later in the year with a doctor's appointment. In late November of 2020, I walked into the appointment with my husband in tow. He had to accompany me since, due the state's mask restrictions in response to Covid-19 and my own deafness, he has had to act as my ears in all public spaces since masks prohibit me from reading lips, my primary means of communicating with others. When talking about her own dynamic with her hearing husband Brueggemann (1997) commented, "the spectre of dependence always lurked." (p 652). In the 10 months since March, 2020 that the USA took COVID-19 seriously by enacting quarantine measures and social distancing, I had not been able to communicate at all in any sort of public space. Due to the masks and the resulting heightened stress I had begun to feel when interacting with others, I either relegated tasks requiring human interaction to my husband or had him come with me, when needed. This doctor's appointment could not be avoided, so he came with me. The pandemic had created an event when the "spectre of dependence" did not just lurk, it reached out and grabbed me. Not only was I dependent on my husband for communication, but my autonomy was dangerously diminished (Brueggemann, 1997, p. 652). My ability to communicate was now contingent on others, not just my husband. And, this context in which my disability magnified was my autonomy that's dependent on my ability to communicate the way I wanted.

When we got called back the nurse began by asking the traditional screening questions, beginning with my name. I quickly answered back before I realized I actually understood her question. The nurse was wearing a clear mask and I was able to see her mouth and answered without the help of my husband. When I made the connection between my ability to catch what was being asked and her mask, I burst into tears. The nurse was taken aback by my tears and my husband had to explain to her that this was the first time in 9 months I was able to communicate with someone in public. It was not until that moment that I realized how much my practiced, carefully curated, and managed experience of normal had cost me. Years of allowing what Davis (1995) calls the "enforced" idea of normal to permeate my daily interactions which, during the pandemic, allowed me to realize and question allowances I had made for myself. This change in my level to interact with society dramatically changed how I identified and saw myself. For so long I had positioned myself as passing, as hearing, but the events of the pandemic made this impossible and this moment of extreme vulnerability caused me to question this identity. While I had sought to distance myself from the idea of disability this situation, this encounter resulting from COVID-19 labeled me as such.

Acknowledging the pandemic was the stimulus in bringing me to a place of disempowerment, I had to think on the underlying triggers that set this in motion. The first instance in which my identity shifted away from one of empowerment, was when the pandemic caused the university where I was working at the time to switch to online, virtual learning for the remainder of the Spring 2020 semester. The school had procured a Zoom license; however, Zoom still did not have automatic captions for their videos. When designing my classroom curriculum, I immediately thought of putting the course in an asynchronous style to give the students the flexibility of finishing the course within their own schedule. I asked for my students to meet each week in assigned small groups via an assigned Zoom link I provided for them. I used Zoom because the school's online course platform, Canvas, would automatically transcribe the videos and I would be able to have a way to read what was discussed in the meetings. I created a step-by-step template to walk them through the method of using the Zoom room and sent multiple emails explaining the process. I wanted to make the class easy for them so they would not have any difficulties in an already difficult situation. However, all but one of my groups decided not to use Zoom. One group explained this decision by saying "it was easier to use" the platform they chose. The students then had to figure out how to send me their large video files, I had to find a way to transcribe each video, which subsequently led to delays in grading. All of these decisions had consequences. The delay in grading resulted in receiving emails from students expressing frustration about my grading timeline. The students' decisions to disregard the plans I had for the class may have been motivated by a variety of reasons, but those decisions reduced my access to the small group learning environment I created.

It led to me feeling more disengaged from my students and lacking agency in my course. My ability to provide and interact with my students via feedback became compromised, even impossible with errors in transcription. My dependence on their compliance became glaring. Even my own decision to switch the course to asynchronous learning pushed my disability to the margins and "disallow[ed] the possibility of action for change" (Dolmage, 2017, p77). In each of these consequences, the overarching outcome became accessibility is not worth it. My life-long expectations to conform to hearing had carried over to my professional career and had skewed my ability to acknowledge the barriers in my classroom and voice my own access needs. As a pre-tenure faculty member, I was incredibly worried about teaching evaluations, but in this conflict between my precarious position within the university and the removal of my agency in this course, I deprived my students of the opportunity to see my needs, to recognize that while they may easily forget my deafness, I had not and my course and their learning would be a space for such awareness.

I needed to claim my disability. The false dichotomy between my passing as hearing and my severely profound hearing loss created a situation where I had to manage others' emotions around my deafness. When meeting people or interacting within any social circle, I do not volunteer my deafness since I communicate orally and use the skills I have, namely lip reading and facial cues, to communicate. But, in some situations, I do eventually mention my deafness, typically only as a means of clarifying why I am asking for people to repeat themselves or why I have missed stated information. Even if it is a point of clarification, it becomes a point of exposure. People immediately apologize and become quiet. I find myself having to do a proverbial pat on the back and assure them that it is okay that I am deaf. Them not knowing when I initiated the conversation is now somehow an exercise in fault versus me being comfortable enough in communicating wherein my identity is not wrapped up in my disability.

At times, this leads them to being irrationally apologetic and myself having to manage their feelings in the revelation that I am different from them. Differences matter. My difference is not within the framework of how they may decide my difference—deafness—should fit. In other situations, people have tried to quantify my hearing loss, telling me I cannot be deaf precisely because I speak. Behind this policing of my body is someone, typically a hearing person, deciding how my deafness should register to fit their comfortability. In Kattari, Olzman, and Hanna's (2018) study on ableism with people with invisible disabilities, they found experiences of body policing brought "shame, frustration, and the feeling of being stigmatized, solely for failing to adapt to a culture that is not designed to support disabled individuals" (p. 486). They go on to explain their research participants typically have to make decisions on whether or not to confront ableist experiences or let it go. I have spent most of my life letting go. However, again, just like the participants in Kattari, Olzman, and Hanna's (2018) study, the continued expectation that ableism is pervasive and continual, led me to realizing my own frustration with myself and my inability to communicate with others while wearing masks led to this identity struggle, what one participant called, "internalized ableism." This internalized ableism is a "product of ability expectations by society" (Kattari, Olzman, and Hanna, 2018, p. 487). While I appreciate and recognize how internalized ableism can be quietly insidious, it does not quite encapsulate my own personal experience. Because I had placed such high currency on passing and on acting hearing, my identity waffled between how I thought people were perceiving me—was I acting hearing enough? Did I minimize my needs? —and my own self-perceptions as someone who knew I could pass but also was confronted with the actualities of my body on a daily basis. Rather than being internally ableist, I realized, I was instead placing those around me in positions of ableism by not speaking up and speaking to my own situational needs.

To further expand upon this, positional ableism between my deafness and the pandemic arose only through relationships, through communicating with others in public and via a virtual online platform. Only then, was I confronted with the ramifications of my hearing loss on my social interactions. I recognized that before the pandemic I may have allowed and even pushed my disability to the margins but now I saw the consequences of doing that very thing. For example, I taught at the university level for several years prior to Covid-19 and never questioned the experience I had created for myself and my students, even in those moments when my needs were not being acknowledged or met. It was easier to do this than jump through the hoops and send the multiple emails I needed in order to obtain permission from my college's HR department to even begin looking into accommodations I needed. It was too much of a hassle and I did not want to be difficult. However, I was now removed and isolated from participation in a very real way that I had never confronted before. Whereas before, I could "work around it," so to speak, the consequences of the pandemic did not allow this type of flexibility.

My experience is unpredictable, ever changing, and when a pandemic is added into the mix, the narrative around how others assume how deafness should function and look—whether that is only communicating via sign language, not functioning within hearing society, or being helpless in hearing situations further gets challenged and depersonalized. The headlines have screamed the virus does not discriminate in regards to who can contract Covid-19; however, it leads to situations of discrimination. The pandemic does discriminate. People of color have been disproportionally affected. And, people with disabilities have been further rejected. For me personally, and I would garner other people who rely on lip reading and visual cues to communicate, the requirement of masks has rendered me nameless. Without a means of communicating, I am relegated to the back. I have no way of knowing what is being asked or said and even fear, any sort of chit-chat from grocery clerks or attendants as I grab my carry-out in case they do ask me something and I cannot respond.

In a #metoo society, I saw groups that have long been marginalized collectively operate and protest their past and current treatment. There were protests, conversations, and online schooling to educate ourselves on the experiences of others, and even books suggested for people to read. They had to push awareness and education on and to the public. However, I never saw anything around the experiences of those with hearing loss or deafness. What I did see was misunderstood. On Facebook and Instagram pictures of people wearing clear masks garnered lots of likes and shares without the follow-through of the abled understanding they needed to buy and wear these masks to help the very people they thought they were supporting. It was easier to share a post or double tap, than it was to do the hard work. Yet, I thought of my own culpability in double-tapping my existence within the abled world. How had I allowed the miseducation to continue in my own circles of work, with my students and coworkers, and in my daily interactions with the public by, not speaking up for myself and refusing to be seen as hearing? This is sobering, thinking on my complicity in furthering false narratives around deafness.

For instance, with the pandemic requiring all meetings to be held via Zoom, I lost another means of participating within my job. I had led myself and a few of my colleagues to believe I would be able to lipread everyone at every Zoom meeting. This was not the case. I had relied on the feature where whenever someone talks, they appear on the screen so I could read the student's lips. However, that feature was sometimes glitchy and other factors, like lighting and audio, impacted the clarity of the video and my ability to lip read. I missed most, if not all, of the content at some meetings. I quickly had to recalibrate and, in the fall, my department meetings switched to Google Meet which had captioning; however, those captions were frequently delayed and sometimes filled with incorrect words and misspellings. Other meetings were still held via Zoom but with the addition of Otter.ai transcription 2 attached. However, even with emails sent to hosts about my needs, transcripts or captioning were not consistent. At the start of meetings, I would discover that the host had forgotten about me and no transcription would be provided. Apologies would come and I would tell them it was okay, but I would still sit in those meetings, missing some content. I would do this in spite of seeing other groups marginalized by society rise up and respond to their disenfranchisement from a place of power.

This removal and lack of power paved the way for a loneliness I was unprepared for. Now, in our masked world, when people asked me questions, I find myself playing a horrible, demeaning game of Who's On First?, trying to answer them instead of stating I had no idea of what was being said. Experience curation and feeling management had become so second nature, this allowance was only further reinforced when, in the few moments where I did claim my deafness, I received an array of responses. Some looked over their shoulder maybe in hopes of finding someone or something to help them, others continued talking as if I would magically catch something that was being said, and others tried to speak louder in hopes I would be able to understand them. My deafness already removes me from the easy intermingled humanity my hearing friends and family experience—the overhearing of discussions at restaurants, the easy banter with people as they move in out of view of mouths, the quick phone call touching base—all of this is not something I can easily experience, if at all. However, with the masks, I am effectively cut off. Since I do not know ASL, my language, oral communication, was gone. My previous ability to pass as hearing was gone. I once jokingly referred to lip reading as my superpower when I caught a student sitting clear across the room talking about my outfit. Masks were then my kryptonite. I felt the world around me still going on, still creating stories even in the midst of the pandemic. I was alone, not from my own making, but of my own acceptance.

It is not my job to manage people's emotions around my deafness but it is my job to articulate my needs. While most contemporary writing in the field of disability studies has conceived disability as "both a lived experience and an effect of discourse, a historically situated function of social and political relationships and an idiosyncratic physical situation" (Mintz, 2007, p. 3) I cannot wait for society to catch up to being aware of the micro and macro aggressions I, as someone with a disability, experience. The pandemic has put a stop to that. It took breaking down in a doctor's office to recognize how I have suppressed my needs and my own complacency in it. Since that November day, there has been lots to think about and reflect on; this paper forms part of the ruminating and digesting process.

When talking with my department chair about course assignments for Spring 2021, there was a course that was initially assigned to me which included a practicum component. It would have required me to have multiple Zoom rooms up, as I watched my students tutor elementary aged children. Even with transcription, it would have been hard to manage all the rooms, hard to focus on one tutoring group at a time, like I would have in person, and I would have not been able to provide the level of feedback for my preservice teachers I pride myself on. I said no to teaching the class. I said no. Interestingly, it did not feel defeatist or that I was buying into the helpless narrative. Instead, I was claiming who I was and what I could and could not do. I was not denying the existence of my body but was instead establishing a new sense of self as a process of identification and acceptance. I have not overcome anything as there is nothing to overcome. Instead, it is a transition outside of the so-called normative standard of bodies, rejecting the idea of diminishment in the face of Covid-19, but instead claiming self-acceptance.

Additionally, with another course that was going to be online in the spring, I knew I needed to make some changes to better serve my students while acknowledging my limitations with the online format. In December, I immediately reached out to my chair and, later, HR about my needs and what worked and what did not in the Fall semester. They started the process of using otter.ai for transcription of all my Zoom synchronous courses. I have also reached out to the others on campus to discuss other technology I could use to help me better manage and hear in breakout rooms and in large group discussions.

This is a process. I recognize this is not a switch on. Just as society has been inundated with tales of disabled woes and overcoming, I too, have read and bought into some of those stories. I saw myself as the overcomer since society required that of me. Society said I talked about my disability too much as a young child, so I shut up and closed off. Society said I needed to fit the norm, so I shaped myself irregularly into that warped framework of self. But when I reflect on Covid-19, I realize the pandemic, for many, was about unlearning and being retaught. I had to unlearn the way I was operating within the abled bodied world and how I was allowed the social and cultural structures of our society to dictate my ways of being. Even with things like masks being needed to help curtail the spread of the virus, it still shored up abled understandings of being. People with disabilities are already on the fringes of societies' awareness and the pandemic allowed those of us who need to see lips and faces to communicate to be further pushed aside. I had to retrain myself, and my right to exist within humanity. I have a right to walk into an appointment and expect to communicate with others. I betray myself, and others with hearing loss, by my refusal to demand accommodation and awareness. This process of unlearning and reteaching is an ongoing process. Writing this paper was, in fact, one part of this process of allowing me "to define [my]self, name [my]self, speak for [myself] instead of being defined and spoken for my others" (Lorde, 1980/2006, p. 43). Even within this academic environment that prioritizes equity and social justice, there is room to dig deeper, and further conversations around disability.

Even in this unlearning and reteaching, there is room for trepidation and anxiety. I am nervous about the potentially indefinite nature of wearing masks well past 2021 and how that might impede upon my communication and a sense of self. The story I tell myself has now changed. No longer does my experience as a deaf woman need to be curated for others, it can ruffle feathers, cause tension, make people unsure. The process fights against the depersonalization of disability discourse demanding instead, that I am part of this conversation that involves me. People can, and should be, uncomfortable, and hopefully, through their un-ease, seek to be retaught themselves.

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Endnotes

  1. ORCID ID: https://orcid.org/0000-0001-5277-1710

    I have no conflicts of interest to disclose. No funding was used in this research.
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  2. Otter.ai is a speech to text transcription service that generates live transcriptions for speakers and speeches
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