Storytelling as Anti-Ableist Activism: Using Disabled Graduate Student Narratives to Reexamine Accessibility in Higher Education

By Millie Hizer,
Meredith Persin,
and Megan Bronson

Content Notes: ableism, sexual assault, psychiatric illness, trauma

The academy was not built for us. As disabled graduate students in rhetoric and composition, we must combat systemic ableism present within the academy on a daily basis. Our days are oftentimes spent advocating for ourselves in order to accommodate our access needs. As Margaret Price (2011) writes in Mad At School: Rhetoric’s of Mental Disability and Academic Life, within the academy, “a sharp rhetorical divide exists between those who are allowed in and those who are not” (p. 6). While we have continually found ourselves on the other side of this divide, we argue that this doesn’t have to be the case. The academy, which was originally built for white, cisgender, and able-bodied heterosexual men, is changing. It is changing because of activists who refuse to be silenced, marginalized, and expelled from spaces of academia. Even so, there is still work that needs to be done. If higher education is to push back against the ableist foundations in which it was built, it needs to listen more closely to stories of disability discrimination from those in the academy.

By positioning the use of disabled graduate student stories as anti-ableist activism, we hope to contribute to a larger conversation about making higher education more accessible for all. In recent years, scholars within the field of rhetoric and composition have worked to expose the ableist underpinnings inherent in higher education that privilege certain bodies over others. Drawing from the work of Jay Dolmage (2017), Margaret Price (2011), Stephanie Kerschbaum (2013), Christina Cedillo (2018), and other scholars who work at the nexus of disability studies and rhetoric and composition, we argue that the most influential way to create change and raise awareness of the ableism present within higher education is to actually listen to disabled students and their lived experiences. Our request is simple: we want to be believed when we say that things need to change.

Our stories represent our different orientations towards academic accommodations, as this is one of the main examples of ableism within the academy. University provided accommodations can be extremely difficult to obtain. For example, receiving academic accommodations typically involves a lengthy process of acquiring documentation, which can be incredibly expensive and require visits to multiple medical professionals. Even after receiving accommodations, students are forced to accommodate themselves “to the dominant logic of classroom pedagogy” (Dolmage, 2017, p. 80). In other words, disabled students must typically accept a set of predetermined accommodations offered by their universities, even if those accommodations don’t completely fit their needs. Because of this, many disabled students do not acquire proper accommodations and continue to struggle within spaces of higher education. Instead of relying on a system that disabled students have continued to struggle with and criticize over the years, we argue that there needs to be a radical reframing of the way we view disabled students’ success within the classroom. Instead of solely relying on formal academic accommodations, we believe that universities need to take disabled students’ needs seriously and create accessible classrooms proactively. This means that instead of “retrofitting” our classrooms to accommodate their access needs, we need to prioritize access from the beginning (Kerschbaum, 2013).

By listening to disabled students’ concerns and needs firsthand, we can begin to create classrooms that are proactively accessible and inclusive, lessening the pressure and responsibility put on disabled students to try and fit into an environment that was never meant to include them. For decades, we as disabled students have been ignored. We have had to fight for our access needs and disclose our disabilities using a process that is “fraught with risk” (Wood, 2017, p. 85). In order to create an inclusive and accessible environment for disabled students with a variety of needs, universities must start truly listening to their disabled students and their experiences. Hence, giving disabled students a platform to share their experiences can be seen as a vital form of anti-ableist activism.

Our framework uses storytelling as a methodology to reimagine how we see disability within the academy. As Christina Cedillo (2018) explains, life writing can be a way to “contest systems of oppression and build identification via a common struggle.” In sharing our stories as disabled graduate students, we aim to continue normalizing conversations about disability in academic spaces. Of course, this type of disability disclosure leaves us vulnerable. As Jess Rice-Evans and Andréa Stella (2021) write, “Vulnerability is the currency of our emotional labor” (p. 29). In telling our stories, we are disclosing some of the most traumatic parts of our lives in order to push back against the ivory tower that has aimed to expel our disabled bodyminds from the start. For Rice-Evans and Stella, telling the stories of disabled graduate student workers means making the “invisible labor” of being disabled in graduate school visible. Each day, we must fight for our access needs, which can take an incredible amount of emotional energy and labor. Having said this, we want to emphasize that our personal anecdotes cannot fully represent what it means to be disabled in academia. While we are disabled, we recognize that we also come from privileged positions. Our stories can therefore only paint a partial picture of academic ableism. While our stories represent just three pieces of the ableist puzzle that is academia, we hope that in sharing them, we can begin to illustrate the power of storytelling as anti-ableist activism.

Our Story

On October 15th, 2021, our group’s friendship began following the circulation of a Twitter post from one of the co-authors of this piece. Millie’s tweet, pictured below, mentioned that she was “looking to collaborate with 1–2 other disabled graduate student instructors” for a journal article. Within a few hours, the tweet had received over 20 Retweets and had garnered the attention of multiple scholars frequenting the rhetoric and clomposition Twitter community. After our group connected through this post, we exchanged emails and phone numbers and set up a Zoom call to plan our project. However, what seemed like merely a professional collaboration soon proved to be much more.

During our first meeting on Zoom, we spent most of the time sharing our stories as disabled graduate students. Even though our stories represent different experiences with academic ableism, they share a common thread—disabled graduate students are always in a position of precarity. So, we used the space of our Zoom call to resist this precarity and create our own community. We also created our own private group chat where we could talk about our piece and stay connected with one another in friendship, solidarity, and a commitment to Disability Justice.

For Leah Lakshmi Piepzna-Samarasinha (2018) in Care Work: Dreaming Disability Justice, “A Disability Justice framework understands that all bodies are unique and essential and that all bodies have strengths and needs that must be met” (p. 21). These connections allowed us to form what Piepzna-Samarasinha might call a “care-web.” Essentially, care-webs represent spaces in which disabled individuals can care for one another in solidarity and friendship. Of course, care-work is not monolithic and can take a variety of forms. In our case, our care-web spanned across multiple digital spaces where we could share our lived experiences.

In coming together, we’ve been able to support one another and share our stories—stories which we are extremely grateful to share with the readers of Spark. As Tea Rozman Clark posits in a recently published interview with Lara Smith-Sitton (2018), storytelling has a powerful place in activist work. Building on this notion, we want to advocate for disability storytelling as a form of anti-ableist activism—a type of activism that can encourage the formation of care-webs and normalize the discussion of disability in graduate school.

Millie’s Story

I can remember sitting in my first seminar in graduate school mortified as I attempted to hide the fresh blood stains on my syllabus. After receiving an email earlier that day triggering my Complex Post Traumatic Stress Disorder (C-PTSD), I began to obsessively pick my skin until it bled. While waiting to enter the seminar, I started performing several other Obsessive Compulsive Disorder (OCD) rituals to soothe my anxiety. In truth, I was angry—angry that my first day in the PhD program of my dreams was clouded by triggers and OCD rituals—angry that I couldn’t stop the intrusive thoughts telling me that I was an “imposter” in graduate school—angry that I felt expelled from a space I’ve always wanted to inhabit.

While I’m grateful for the supportive faculty in my program, being disabled in a space of higher education can still be a daily battle. In constantly negotiating accommodations with the university, I’m reminded that the space of higher education was not originally intended to include neurodivergent minds such as mine. Once the pandemic hit, my access needs changed even more. After seeing how accessible online teaching and learning can be, I realized that remote work is the best option for my health. However, this is something I must continue to negotiate with the university. Even though remote engagement is the most accessible way for me to engage in the requirements of academia, I know that this won’t always be possible. Throughout my time in academia, I’ve learned that you can’t win every battle. Rather, accessibility is a constant negotiation, and it is important to choose what to challenge and what to accept. So, I’ve chosen to accept that I’ll have fewer remote opportunities post-pandemic, but will continue to advocate for more accessible, remote opportunities while doing so.

In spite of these challenges, I recognize that I inhabit a privileged position. From my very first day as a graduate student, I had access to a plethora of resources as a member of my school’s disability services office. Even before I’d chosen my courses, I’d been put in contact with a disability coordinator, who was able to help me navigate the challenges of being a disabled graduate student. While in many ways I’ve been made to feel rejected within the space of higher education, I’ve always been legally protected. Armed with letters from multiple physicians, legal documentation following an intense battle to receive accommodations in high school, and a variety of tactics to advocate for myself, I was able to succeed in my university career. However, without these resources, succeeding as a disabled student within the university space can become almost impossible.

While my battle to receive academic accommodations happened before I entered higher education, I understand the pain many disabled students face in seeking accommodations. In high school, I was told that I was “too smart” to have a disability. I was told that I was “faking it” and that I didn’t deserve accommodations. As early as third grade, school became a major source of trauma—bullying, sexual assault, and emotional abuse were rampant at a religious school I attended for three years. I’ve carried this trauma my entire life, but it has given me a desire to advocate for other disabled students who are too traumatized to ask for accommodations.

Even though my battle for accessibility is less contentious than it once was, it doesn’t mean that it’s not over. As a disabled teacher-scholar working within the ableist spaces of the academy, I will always need to advocate for myself. There will be those who do not understand, respect, or recognize my disabilities. I will be forced to conform to standards that fail to prioritize accessibility. But the fight isn’t over; I want to be an activist and guide for those who are struggling. It may take years to redefine how we see disability in the academy, but I plan to be a part of this—to use my own story as a form of anti-ableist activism—to ultimately encourage other marginalized scholars to share their stories so that we can work to dismantle the inherent ableism present within the academy together, as a community of scholars working towards a larger goal of disability justice.

Meredith’s Story

Throughout my three years of undergrad, my journey as a disabled student with both mental and physical disabilities was a tough one. I had to fill out large amounts of paperwork to start the process, fight hard to acquire all the costly medical documentation needed, attend many meetings defending my need for accommodations, and put up with the lack of respect shown towards me by the staff as they would constantly distract my service dog while she was working by doing things such as talking to her and trying to pet her. It wasn’t an easy or even necessarily a supportive process, but I did end up finally receiving my proper accommodations once I was over halfway completed with my degree.

With that previous experience, when I began graduate school in August 2020, I thought that due to my current circumstances I wouldn’t need to obtain official accommodations. To clarify, due to COVID-19 all of my graduate classes (as well as my graduate assistantship) were completely online and held over Zoom. I figured that I would be fine without my previous accommodations since most of them were regarding in person class requirements and expectations. At first, I thought I made the right decision because things started out perfectly. The three out of my four classes that I had attended so far were intentionally accessible and inclusive and there was no need to implement other accommodations. I was thrilled. But then I attended my fourth class and realized I may have made a mistake. On the first day as we learned about this professor’s pedagogical style and class requirements, I became extremely stressed and nervous about my success within his course. This specific professor explained that there would never be a positive reaction to our ideas, to only expect the professor’s response (if any) to challenge our ideas, and also be prepared to be psychoanalyzed. At that point, I decided to look up the accommodation process at my university, and it was incredibly confusing to try and figure out how to begin the process and if I even could at that point in the, which was a similar issue I struggled with during the accommodation process in undergrad.

Time went on and this aggressive, interrogation-style pedagogy had me very confused and no matter how hard I tried to participate in the ways the professor wanted, my disability would become so flared up within class due to the stressful and anxious environment that was created that the only way I could communicate with the class was through the chat feature, which this professor did not look at, use, or even acknowledge as a form of participation.

I tried to meet with this professor outside of class to discuss my worries and ask what I could do to help improve my participation grade if the accommodation process didn’t work out in time only to be told that my disability is not the reason I am struggling and that instead, I am actually “just incompetent.” I was stunned. I left the meeting having no idea what happened and where to go from there. I was struggling with what to do and the judgment I felt had me doubting if I should even try to fight for proper accommodations. After all, the professor already expressed an ableist outlook and could intentionally make class harder for me in areas that accommodations could possibly not cover.

I continued trying to navigate the online resources for the accommodation process, but I was too fatigued to figure it out due to my own health circumstances as well as the information on the website being incredibly confusing regarding what I had to do as a graduate student who is both a student and also seen as a faculty member. Instead, I just tried my best and continued trying to talk to him. I kept struggling and ended that class with a C+, which is the first grade I have ever gotten that wasn’t an A. Despite doing extremely well in my other courses that were accessible, I began to think that maybe I wasn’t cut out for grad school. I thought maybe I could never be as good as my colleagues because of my particular disabilities, and I genuinely thought about dropping out during my first semester. I doubted myself for the first time ever and was incredibly depressed. I was losing my sense of self-worth as an academic, so I searched for guidance from people who have had similar experiences. I found numerous disabled graduate students who had similar experiences and moments of self-doubt due to the ableism within higher education as well. I found disabled graduate students just like me who were not taken seriously by faculty. It was in that moment that I realized how important sharing disabled students’ stories are: it helped me regain my self-confidence and motivation to succeed.

I realized that the problem is not with us, disabled students, but with the ableism that professors uphold within the institution. If this specific professor would have taken disability as seriously as my other professors, who made an effort to make their classrooms accessible, then I could’ve avoided an entire identity crisis regarding my place in academia as a disabled person. That is why we, as disabled graduate students sharing our stories and demanding change within the classroom and the larger institution as a whole, are anti-ableist activists.

Megan’s Story

In fall 2020, I entered my doctoral program in rhetoric and writing studies. I moved 3,000 miles away from home without my partner and during a pandemic when our courses were online. This semester broke the last bit of resiliency I had left and required me to finally reach out and contact Services for Students with Disabilities (SSD). I have Bipolar 1, and at the time, I had found a lump on my breast and was going through the work up of trying to figure out what that was. I slipped into a depressive episode and began missing classes while I attended medical appointments. Eventually, I underwent weekly intravenous iron treatments for anemia and a bone marrow biopsy to look for blood disorders. I knew I needed institutional help if I wanted to stay in the program.

During this time I had an assignment in my technical communication course, which was to record yourself audibly “learning how to do something” and to transcribe it. I chose to record myself learning how to navigate the SSD website. The transcript is only 8 minutes long because I became so frustrated that I quit. I never submitted the assignment. At that moment of crisis in my life, assignments felt insignificant when I was constantly in the throes of hating my body. I actively wished that I had no body. I wished I could be some sort of ethereal being who could think and write and help my community without the tactile infringements of a broken body. I was mad at myself for not being able to meet the standards academia had set for me. I hadn’t thought about the standards I should have for academia. I should be able to think and write and help my community. If the university and the knowledge that it contains are tools for me to use, why did it feel like the university didn’t want me to succeed?

In the transcript of my first time navigating the SSD website I encountered four broken links. I found very vague instructions about receiving accommodations, no list of possible accommodations, a very intense list of things needed from my doctors, and no clearly defined upload link on where to put all of these documents. I could not register with SSD without uploading medical documents, and I could not get an appointment scheduled with a disability counselor until I was registered. By the end of the transcript my voice was cracking because I wanted to cry. I felt defeated. I muttered “I don’t know” three times in eight minutes. In six other places I am audibly confused. I ended the transcription with “I don’t know. I’m just gonna call them in the morning.” I didn’t call them in the morning. I wanted to be as far away as possible from having to navigate the website again. At the time, my capacity was full, and to add one more stressor and responsibility was only going to disenfranchise me more.

The SSD website actively served as a hostile environment for disabled students. When universities create websites without the diligence of informed user design, they actively create accessibility barriers. Not that this is new for my university, an old military school whose grounds and infrastructure serve the needs of young able-bodied men for the most part. I did not receive accommodations in the fall 2020. I would not receive them until fall 2021, after having a breakdown and spending 9 weeks in a behavioral health hospital. When I entered the hospital, several people told me that my university took mental health very seriously following a tragic school shooting we had at our campus nearly fifteen years ago. The problem with that is that I started seeking help from campus services months prior to escalation. I either never heard back, was unable to get appointments, or unable to navigate the proper websites. I don’t know how to quantify “very seriously” but maybe the university should start with “seriously” making accessible websites for accommodation services.

Conclusion

When we began this project, we each asked each other the following question: How do you see disability narrative/storytelling as a form of activism? Our responses were as follows:

Millie

Personally, I see narrative as activism because it normalizes discourse about living with a disability. It doesn’t glamorize our stories; rather, it shows what it is actually like living as disabled graduate students.

Meredith

Disability narrative is activism because it demands not only that we be heard by those unlike us, but also simultaneously reaches other disabled folks who need that kind of reassurance, support, and community. It shows others that what we deal with is normalized, yet not acceptable, and we deserve better. By recognizing the similarities in our stories and experiences with ableism, we can use each other’s support to demand for the changes that should have been made a long time ago, and we can educate others in the process.

Megan

I always see narrative as activism because it forces readers and listeners to experience something they never would’ve encountered. Through sharing stories and making discourse, we create power that counters the invisibility of marginality.

With this in mind, we embarked on this journey of vulnerability and healing. In planning this piece, we’ve cultivated more than just professional relationships; we’ve cultivated friendships. However, we recognize that we need more stories from queer, trans, and disabled people of color—stories that can be mapped onto a larger story of institutional, academic ableism. Recognizing how healing and affirming this journey has been for us, we want to extend this experience to other scholars who find themselves at the intersection of academic ableism and belonging. We encourage readers to engage in digital spaces and to find their own sense of community, even if that means simply witnessing others’ stories. Our story started on Twitter, which can be a valuable tool for creating your own care-networks.

Some of the accounts on Twitter that we follow for community-building are: @DisInHigherEd, @DisInGradSchool, @DisabledAcadem, @AcademicAbleism, @BlkDisHigherEd, and @chron_ac. We also suggest that you search for and follow disabled scholars and activists you know and respect, building and tailoring your care-network as you go. Pay attention to the hashtags people use to track conversations about ableism like #DisInHigherEd and #DisabilityTwitter. If you would like to become part of our care-network, feel free to follow us at: @millieh27, @MeredithPersin, and @Bronsosaurus. We know that Twitter is not the answer to systemic issues—and that in some ways, Twitter enables many of these issues—but this doesn’t discount the value of community and drawing collective power from friendship and solidarity. We have created our care-web across digital spaces and invite you to join us in strengthening these spaces and each other.

While we’ve found a valuable sense of community in writing this collaborative piece, we shouldn’t have to share these types of stories; we shouldn’t have to bond over shared trauma. If the academy prioritized our accessibility from the beginning, maybe we could simply connect through our shared love of rhetoric, composition, and literacy studies. But, we move on–as anti-ableist activists sharing our stories and working each day to dismantle the oppressive logic of academic ableism. As Ada Hubrig (2020) notes, “The care work of affirming each other’s disabled embodied experiences amid the ableist, racist, capitalist, and hetero-patriarchal systems is vital” (p. 35). It is our hope that other disabled and multiply marginalized scholars within our field will continue to come forward with their stories, forming care-networks, and valuing each other’s experiences. This means pushing back against the ableist underpinnings of the academy and reexamining how it views accessibility—moves that can continue the work of anti-ableist activism in our field and higher education more broadly.

References

Cedillo, Christina V. (2018). What does it mean to move? Race, disability, and critical embodiment pedagogy. Composition Forum, 39.

Dolmage, Jay. (2017). Academic ableism: Disability and higher education. University of Michigan Press.

Hubrig, Ada. (2020). ‘We move together’: Reckoning with disability justice in community literacy studies. Community Literacy Journal, 14(2), 144–153.

Kerschbaum, Stephanie. (2013). Multimodality in motion: Disability and kairotic spaces. Kairos: A Journal of Rhetoric, Technology, and Pedagogy, 18(1).

Piepzna-Samarasinha, Leah Lakshmi. (2018). Care work: Dreaming disability justice. Arsenal Pulp Press.

Price, Margaret. (2011). Mad at school: Rhetorics of mental disability and academic life. University of Michigan Press.

Rice-Evans, Jesse, & Stella, Andréa. (2021). The invisible labor of traumatized doctoral students. The Journal of Multimodal Rhetorics, 5(1).

Smith-Sitton, Laura. (2019). Tea Rozman Clark on the power of storytelling in activist work. Spark: A 4C4Equality Journal, 1(1).

Wood, Tara. (2017). Rhetorical disclosures: The stakes of disability identity in higher education. In S.L. Kerschbaum, L.T. Eisenman, and J.M. Jones (Eds.), Negotiating disability: Disclosure and higher education (pp. 75–91). University of Michigan Press.

Author Bios

Millie Hizer is a PhD Candidate in Rhetoric and Composition at Indiana University, Bloomington. Her dissertation examines how disabled students and faculty in higher education navigate academic ableism through embodied, rhetorical tactics of resistance. She has presented her research at conferences such as the Conference on College Composition and Communication, the Rhetoric Society of America Biennial Conference, the Conference on Community Writing, and the Society for Disability Studies Annual Conference. Millie has also published her writing in enculturation: a journal of rhetoric, writing, and culture, has a forthcoming piece in The Journal of Multimodal Rhetorics, and has been featured on disciplinary podcasts such as Tell me More! and Pedagogue.

Meredith Persin (they/them) is the Program Specialist in the Mohin-Scholz LGBTQIA Resource Center at the University of North Carolina Wilmington. They create and facilitate programming surrounding the center’s three main goals to support, educate, and advocate. They have their B.A. and M.A. in English and Gender Studies. Their publications and main research interests include activist rhetoric, queer rhetoric, inclusive pedagogy, and disability/accessibility studies.