Dialogues on Disability: Shelley Tremain Interviews Stephanie Jenkins

Hello, I’m Shelley Tremain and I’d like to welcome you to the eighty-seventh installment of Dialogues on Disability, the series of interviews that I am conducting with disabled philosophers and post to BIOPOLITICAL PHILOSOPHY on the third Wednesday of each month. The series is designed to provide a public venue for discussion with disabled philosophers about a range of topics, including their philosophical work on disability; the place of philosophy of disability vis-à-vis the discipline and profession; their experiences of institutional discrimination and exclusion, as well as personal and structural gaslighting in philosophy in particular and in academia more generally; resistance to ableism, racism, sexism, and other apparatuses of power; accessibility; and anti-oppressive pedagogy.

The land on which I sit to conduct these interviews is the traditional territory of the Haudenosaunee and Anishnaabeg, covered by the Upper Canada Treaties and directly adjacent to Haldimann Treaty territory. As a settler, I offer these interviews with respect and in solidarity with Indigenous peoples of so-called Canada and other colonized settler states who, for thousand of years, have held sacred the land, water, air, and sky, as well as their inhabitants, and have struggled, for centuries, to protect them from the ravages and degradation of colonization and expropriation.

My guest today is Stephanie Jenkins. Stephanie is an Associate Professor in the School of History, Philosophy, and Religion at Oregon State University, who specializes in ethics, philosophy of disability, critical animal studies, and philosophy of popular music. She recently co-edited the volume Disability and Animality: Crip Perspectives in Critical Animal Studies, published the essay “Constructing Ableism” in Genealogy, and co-authored “Universal Design for Instruction and Institutional Change,” with OSU’s Director for Disability Access Services Martha Smith. For fun, Stephanie enjoys vegan baking and experiencing live music.

Welcome to Dialogues on Disability, Stephanie! Please describe your background, including your educational history, and how it led you to become a professional philosopher.

Hi, Shelley! Thank you for hosting me. It’s an honour to be included in this important series alongside our esteemed colleagues. Reading your work and this blog has helped me foster a sense of belonging at times in my career when I felt alienated within professional philosophy—and even actively considered leaving—so I am grateful for the opportunity to share my story and work in the Dialogues on Disability series. The collective conceptual tools and narratives have cultivated a sense of belonging, provided models of leadership and success for disabled philosophers, and combatted ableist stereotypes, practices, and institutions prevalent in academic philosophy. The posts have fueled me through many dark times and I can only hope that my contribution might ignite a similar tiny spark of hope for a reader/listener at their computer screen. To that reader/listener I say: do not listen to those who tell you “you are not cut out to be a philosopher because of your illness/disability.”

Just as Friedrich Nietzsche theorized about his encounters with chronic illness and Michel Foucault described his own near-death experience, my scholarly activities are informed by over twenty years of living with an undiagnosed, nearly fatal combination of illnesses. During my quest to discover the causes my deteriorating health, I visited over 100 medical professionals and collected dozens of misdiagnoses. Progressive illnesses and injuries repeatedly stole every capacity by which I had previously defined a valuable life. Philosophy offered a practice for critically examining what makes a life worth living, while mine repeatedly fell apart. It helped me seek out and find new pleasures so that I could appreciate and enjoy my unpredictable bodyminds and analyze the world through fluctuating abilities.

I am a cis, white, woman. I have experienced multiple, acquired disabilities that have evolved and shaped the course of my life. Their severity and extent to which they are apparent or symptomatic have varied dramatically. I’ve been a long-distance runner, a competitive equestrian, used a motorized scooter, worked with a service dog, had my jaw wired shut, been unable to get out of bed, traveled with an extra suitcase of medication because I required 120+ pills/day including intravenous injections, hospitalized for chronic pain, and everything in between. These are the dramatic variations in my abilities and disabilities that are apparent to others. My biomedical diagnoses include Reflex Sympathetic Dystrophy–RSD, also known and recently renamed as Complex Regional Pain Syndrome—a severe chronic pain condition that usually starts in a limb and is characterized by disproportional regional nervous system response, chronic lyme disease, and a rare endocrine condition. My main daily struggles are pain and fatigue.

I grew up in a small town in Maine where I rode horses and played softball. I participated in competitive equestrian sports and my first dream was to be a professional horse trainer. This goal was cut short by a devastating, painful fall in which I was thrown from a large, rebellious Hanoverian and cracked a vertebra. Later, in pointing to my x-ray in the hospital, my doctor told me that if I had another fall, I would “never walk again.” That visit was my first encounter with what Fiona Kumari Campbell calls the “negative ontology of disability,” and the first time that disability disrupted and reshaped the expected course of my life. I quit horseback riding and softball and focused my time and energy on high school debate. When I teach disability studies, especially Eli Clare’s Brilliant Imperfection, I spend a lot of time thinking about Christopher Reeve, activism, cure, and the value of walking.

I was first introduced to philosophy through competitive debate. The style of debate I participated in at the time–Lincoln-Douglas–was values focused and required debaters to switch sides and defend opposing positions of a controversial ethical issue, such as economic sanctions, euthanasia, and civil disobedience. Competitors often appealed to canonical philosophers such as Kant, Locke, Rousseau, and others in making their arguments. I quickly learned that many of my opponents obtained their materials through secondary sources and research briefs rather than the primary texts. As a result, their quotations and arguments were often taken out of context. If I read the complete primary text, I could easily demonstrate my opponents’ lack of familiarity with the texts in cross-examination and dismantle their arguments in rebuttals. In other words, rigorously studying philosophy made me unstoppable: I won every tournament—including the state championship—in the state of Maine my senior year of high school.

In my academic studies, I learned an entirely different lesson; I learned that ideas mattered. They did things in the world: excited, scared, enthralled, moved, and entertained people. For example, I very quickly noticed how uncomfortable it made my high school teachers that I was reading Karl Marx’s Communist Manifesto. Why were these adults scared that a teenage girl was reading a short book? I wasn’t sure, but it made me read it carefully and place it conspicuously on my desk. On the other hand, philosophy helped me challenge my instructors in ways that I was not able to do on my own. Prior to studying philosophy, I would find myself in trouble for challenging my teachers’ authority by asking “too many questions.” However, if I framed my question with a philosophical reference, “According to Kant’s Categorial Imperative…,” my challenges were taken seriously; philosophy elevated the irreverent questions of a young, quiet teenage girl to intellectual dialogue.

Through debate and academics, I played with philosophy to find my voice, cultivate critical-thinking and research skills, and experience the power of ideas. I was, however, what we consider to be a sophist, because my primary goal for studying philosophy was to win arguments. (I’m sure this characteristic made me a fun first-year philosophy student; my apologies to my professors!) Debate led me to Emory University, where I completed my undergraduate degree. I attended Emory, specifically, because of its debate coaches, who introduced me to Emory’s philosophy department. Emory was where I was introduced to the philosophical love of my life—Michel Foucault—and feminist philosophy. Through my studies at Emory, I came to understand philosophy as an “experience” in the Foucauldian sense of the term. I could pick up a book and, after reading it, neither I, nor my self, would be the same again. Philosophy was no longer about winning, but the pursuit of knowledge and freedom.

I continued my participation on debate teams. I enjoyed the thrill of the competition, the friendships, and the creativity of designing philosophical critiques of political arguments. However, this life activity—like my childhood sports—was cut short by disability. Progressive temporomandibular joint disorder (TMJ), which was worsened by my horseback riding injury, had become so painful that it hurt to speak, especially at the rapid rates required for competitive college debate. I left active competition and focused my efforts on my philosophy honours thesis and graduate school applications.

My graduate studies took me to Pennsylvania State University, which I choose because at the time it was the only Continental Philosophy program with a dual degree in women’s studies. I was introduced to disability studies in one of my required women’s studies courses. We read Susan Wendell’s The Rejected Body, which was the first philosophical text that I encountered in which the disabled body was taken seriously rather than taken as something to be cured, prevented, or ridiculed. Wendell’s experience with chronic fatigue and pain echoed mine in a way that made me feel like I was no longer alone. In reading and discussing Wendell’s text, I didn’t just do philosophy. I held that book and cried out of relief of recognition. I didn’t have to hide anymore.

[Description of photo below: Stephanie, a white woman with long hair, stands in front of a bookcase full of books and ornaments with her hands and forearms behind her back. She is looking directly at the camera and smiling widely.]

My process of coming to identify as disabled began that term. Slowly, I came to understand disability as an identity, culture, and way of life rather than a Bad Thing. Because I was interested in the field of disability studies, I decided to merge my interests and write my dissertation on Foucault and disability bioethics. At the time, philosophy of disability was a much smaller, emerging field. Shelley, your work was very influential for me—it still is!—and I want to thank you for paving that path. If I had not read your work on Foucault, disability, and impairment, I’m confident that I would have chosen an entirely different topic and I would be living a very different life.

Stephanie, your research also focuses on the intersection of critical disability studies and critical animal studies and, as you’ve mentioned, draws on Foucault for this work. I know from my own research in these areas that many authors have argued that the usefulness of Foucault for these areas of inquiry is limited. Please describe your research in the areas of Foucault, as well as your view of the arguments that these other authors have advanced.

What a fantastic question! Thank you, Shelley. Generally, I suspect the main disagreement is going to be over the meaning of the term “useful.” What is critical disability studies? What is critical animal studies? And what are their goals? Both are scholarly fields with explicitly ethico-political aims: the end of disabled human and more-than-human oppressions, respectively. Those of us who work at the intersection of these fields believe that such dominations are interconnected. This argument is collectively put forth in Disability and Animality: Crip Perspectives in Critical Animal Studies that I co-edited with Kelly Struthers Montford and Chloë Taylor. The argument is, however, the minority position within the literature. Many of our colleagues take these two fields to be in direct competition with one another due to the long, unfortunate history of animal studies in which scholars in the field have made ableist assumptions about disabled people and arguments such as the argument from marginal cases. We hope that this volume serves as a corrective to this history and contributes to the ongoing dialogue about the interactions between speciesism and ableism found in work such as Sunaura Taylor’s Beasts of Burden.

Back to the question of “useful.” Usefulness depends on what you’re trying to do. The term critical in the name “critical animal studies” distinguishes the field from animal studies insofar as it aims to advance explicitly vegan-motivated scholarship. While the goal of critical disability studies is less specific than the goal of critical animal studies, the former too has an activist agenda. As it should. That’s not the route that Foucault took in his research. He was a historian of thought. Foucauldian genealogy or problematization probably isn’t going to convince you to go vegan. Or to take direct action to liberate the animals from the Portland Zoo. Or to buy an electric car. Reading Discipline and Punish isn’t going to motivate you to caption your lectures, vote for universal health care, or retrofit your office building.

I’m a Foucauldian. I love his work and I find it useful. Sometimes. I used to feel like I needed to use Foucault in all of my projects and defend him in all of my publications. As I progress in my work and career, I’ve found that sometimes I’m thinking about things that require different tools, and that’s OK. So, if a critical disability studies or critical animal studies scholar says Foucault isn’t useful for their project, I understand. Now, if they say he is “wrong,” immoral,” or “contradictory,” I might want to get in that fight.

I find Foucault useful for identifying historical methodologies and concepts with which to reconceive what it means to be human and for challenging widespread assumptions about what makes life worth living. Specifically, in my most recently published work, I aim to problematize the limits of moral considerability. Following Foucault’s challenge to question the “self evidence” of the self-evident, I trace the development of ability, gender, race, and the “human” as determinants of moral consideration and explore the intersections of ethics and power.

Moral rules are events in history and, therefore, are historically and culturally specific. Marking their historical transformations opens the possibility for new ethical practices. Cripping Critical Animal Studies is the first edited volume to bridge scholarship in critical animal studies and critical disability studies. My own contribution to the volume, “Against Performance Criteria,” identifies, outlines, and rejects two common accounts of moral considerability in disability ethics. It concludes by calling for a precautionary principle of moral status. “Constructing Ableism” maps the incorporation of able-bodied norms in the nineteenth-century United States. Philosophies are toolkits. Not all tools are meant for every project, and I’m sure that Foucault would be OK with that.

Please tell our readers and listeners about your work in public philosophy.

The process of professionalization was one of privatization and desocialization. Knowledge specialization and jargon limited the people that I could talk to or who were interested in my work. The time spent alone in my office with books, reading and writing, negatively impacted my social skills. In most social contexts, philosophy was a conversation stopper. At the rare dinner party that I attended while I worked on my dissertation, when I was asked, “What do you do?” and I replied, “I’m a philosopher!” the look of confusion was quickly followed by a change of topic.

At Phish concerts, however, I had an entirely different experience. What’s Phish? Phish is an improvisational rock band from Vermont that has been playing together—with the exception of two brief breaks—since 1983. The band is known for its unusually passionate, touring fanbase. Because each concert and each song performance is unique, “phans,” as they are often called, want to catch each unique “jam.” If you know me—or if you’re reading or listening to this interview, you now know—much of my life revolves around the band and its community in part because, to quote the Velvet Underground cover, my life was “saved by rock and roll.” It was at Phish concerts that I learned the power of philosophical dialogue.

As a graduate student, when I would be sitting on the floor of a venue introducing myself to my neighbours for the evening, the inevitable “so what do you do in your ‘real life’?” question would arise. Instead of a conversation stopper, announcement of my status as a professional philosopher often resulted in excitement, curiosity, and genuine discussion. I met phans who were working on ideas and wanted feedback; requested feedback on existential dilemmas; or just wanted to debate the meaning of life, song lyrics, or the ethics of Gamehendge–a mythology created by guitarist Trey Anastasio in his senior thesis. Readers/listeners of BIOPOLITICAL PHILOSOPHY will be interested to know that he studied philosophy in college. I learned there was an active desire for philosophical activity within the community. I enjoyed experimenting with new methods for channeling it. Early in my career at Penn State University (PSU), I had heard a rumor that one of our professors was R.E.M’s “Band Philosopher.” I never verified if the gossip was accurate, but the possible job description for a public philosopher was planted in my mind. I started brainstorming ways to formally integrate my two passions.

In 2014, as an assistant professor, I proposed, designed, and taught a special section of Philosophy and the Arts, PHL 360, on the topic Philosophy School of Phish. The course uses Phish as a case study for exploring the philosophy of art and music. Students study canonical theories about art and its meaning—from Kant to Nietzsche to Foucault—and use shared listening assignments and live concerts as field sites for exploring those concepts. This class also became my point of interface for public philosophy with the Phish community. During Phish’s 2014 summer tour, I attended twenty-five concerts, following the band to fourteen cities across the country. Along the way, I organized philosophy meet-ups and held office hours, gathering with students and phans to do philosophy on the road and on the concert floor. We argued, imagined, read, and danced.

I also had another life crash course in disability as, while I was living out my dream public philosophy project, my health took an unexplained and unexpected downturn on tour. I was, thankfully, travelling with my service dog Mandy for the first time, learning how to navigate travel, lodging, ADA seating, and “entertainment space” access for the first time. I felt a lot of implicit pressure to pretend to be well; after all, if I was that sick, “why was I at a concert?” But to be honest, the music and getting to the next concert was my motivation for living at that point in my life.

The success of the 2014 tour led me to plan progressively larger events. In 2015, I organized an “Alumni Blues” philosophy meet-up at Phish’s three-day Magnaball Festival, which was attended by approximately 30,000 phans in Watkins Glen, NY. In 2017, I organized a fieldtrip for my PHL 360 students, taking them to Phish’s three-day run at the Gorge Amphitheatre in Gorge, Washington. On the campgrounds, I hosted an academic symposium and invited the phan community to participate in the lectures and dialogue. Over 100 phans elected to attend instead of engaging in the many other activities available at a music festival, such as swimming, drinking, hanging with friends, etc. Next, in a similar vein, I took a small group of students to Phish’s 2017 Halloween run, where we organized a public philosophy event in an art exhibit on the Las Vegas strip. Phans were invited to discuss existentialism in a gallery adjacent to Phish artwork displays. Finally, these public events culminated in a 2019 academic conference at Oregon State University that integrated community collaborations with scholarly presentations: art exhibits, documentary film premiere, exhibition fair, phan panels, and more. My goal in each event has been to take philosophy to unexpected places and make it enlightening and, when possible, entertaining. These projects have received significant local, regional, and national media coverage, including in Billboard Magazine, Rolling Stone, and numerous podcasts including Osiris Media’s Undermine.

An additional project facilitates unprecedented collaborations between the live music community and academic publishers. With a Vice-President of The Mockingbird Foundation—a 501(c)(3) (non-profit organization) run by Phish-phan volunteers that raises funds for music education programs—I am co-editing a special issue of the Public Philosophy Journal about Phish and Philosophy. A series of articles written by phans and scholars will be published this summer. Each article has undergone the journal’s extensive formative peer review process. In order to ensure that the final product meets the band’s community standards and to give the band community a sense of ownership over the issue, we added a phan reviewer to the process. In other words, each article was reviewed by two academics plus a non-scholar Phish phan. (Most of the phan reviewers are Directors of the Mockingbird Foundation and consequently highly respected members of the Phish-phan community). That means three reviewers per article! My aim is for this publication to serve as a model for community scholarship in public philosophy.

Phish-related philosophy is not the only public philosophy that I do; but it is my most well known and unusual, so I’ve chosen to focus on it. It’s also my creative testing ground for other projects. Activities, assignments, and ideas that start here usually spill over into my work in disability studies, for example.

Stephanie, I want to ask you for some specific information about disability. The concept of “an essential function” is essentially contestable and contested, constituting the crux of many legal challenges to definitions of accessibility and accommodation. You have confronted significant obstacles in your workplace due to the fraught nature of this criterion. Please explain your experiences in this regard.

“Essential job function” is a legal standard in the United States that is used to determine the rights of a disabled employee under the Americans with Disabilities Act (ADA). Essential functions distinguish the non-essential functions for a position. Readers/listeners may be familiar with this concept from reading their job descriptions or job ads. Employers have the right to designate essential functions of a position but must specify them and include these specifications within job descriptions, job ads, etc. The essential function must be intrinsic to the performance of the job. For example, in my duties as a philosophy professor, it can be expected that I read the equivalent of 100 books, but not that I physically carry them myself. However, I might need reasonable accommodations in order to read those books, such as access to them in alternative formats and/or text-to-speech software. Employees who cannot perform essential functions of a position with or without reasonable accommodation are considered to be not qualified for the position.

At first, the criterion of “essential functions” seem straightforward. A philosophy professor doesn’t need to walk, talk, see, or any other number of “normate” functions; there are assistive devices and reasonable accommodations that enable their participation. But do they need to think? What do we mean by thinking? What specific cognitive tasks are required to do philosophy well? These sorts of questions get to the very heart of what it means to do philosophy. For example, when I was a graduate student, I was teaching an advanced, “slash” seminar course while taking a migraine medication that significantly impacted my short-term memory. I learned very quickly that while lecturing, I would not only forget the name of the student who asked the question, but also lose track of the question that I was answering in the middle of my response to it. I, of course, was terrified that I would be uncovered as an imposter who was not properly prepared for class. However, that was not the issue. I knew the material well, but I was taking a medication that changed how I recalled and communicated information in my brain. Two simple tricks solved the problem: a seating chart and taking notes of each question, so I could remind myself of my train of thought when necessary. In the end, I had excellent teaching evaluations that term; nevertheless, I’m certain that many of my colleagues would have assumed that “short-term memory” is an essential function of the position.

Excerpts from my current position description say that I will teach “undergraduate and graduate courses in Philosophy,” participate in “research activities that lead to the publication of scholarly work in appropriate academic journals and books,” and “participate actively as a member of one’s professional community.” These tasks are the “essential functions” of my job as a philosophy professor. In terms of the lived, embodied reality of teaching and researching, however, they are quite vague and, as a result, ableist expectations usually operate to fill in the gaps. I am to teach courses, but are the courses to be taught in person? Online? If online, are they synchronous in Zoom or asynchronous in a course management system? If in person, am I expected to teach them while sitting or standing? If standing, for how long? If I am to use a chalk board or white board, how high must I be able to reach? Do I need to physically be capable of carrying my books and other teaching materials to my classroom? How far is my classroom from my office? How much rest time do I get between my different classes? How much rest time do I get on any given day and how many rest days of the week? If I have an unpredictable chronic condition such as migraines or irritable bowel syndrome, what is the procedure for making up a missed class? And how many classes can I miss a term before I’ve been deemed unqualified for teaching?

For philosophers, the activities and functions implied by the phrase “research activities that lead to the publication of scholarly” typically include: reading, notetaking, critical thinking, and writing. Readers/listeners may agree that they are essential functions of philosophers. But how quickly must these tasks be performed? Is pace an essential function? I am physically capable of doing these activities; but some days, my disabilities interfere with the speed at which I complete high-level cognitive tasks. Perhaps I was so fatigued that I was unable to get out of bed, so the books that I needed from the office or library were unavailable. Or I simply was in too much pain to think straight. Before my endocrine condition was diagnosed and treated, I experienced what I call “brain quicksand” because it was worse than my previous “brain fog”: every word and thought that I found was pulled away by a counteracting force. I wrote and published during this period, but it was excruciatingly difficult and took considerably more time than it does when my cognition falls more in the neurotypical spectrum. I was performing “essential functions.” Just slowly.

This cursory explanation captures only the tip of the iceberg; but suggests some of the ways in which the concept of an “essential job function” is loaded and fraught. In any event, I was on the tenure track, meeting the requirements of my position; but as my health declined, I needed several reasonable accommodations to perform my position, including an extension of my tenure clock. The question of “pace,” or whether the standard five-year timeline for a tenure-track philosopher was feasible and fair, became a contested issue in my accommodations process. How quickly must one do philosophy to do it well professionally at a research university? The negotiations dragged out for years and were adversarial. I felt alienated from my colleagues, my department, and my university. In the end, I had to formally hire legal representation, file a discrimination complaint against a high-level administrator, and threaten a lawsuit. All while on the tenure track. I should note that the situation would not have escalated that far if I was not, at that point, willing to walk away. I had pretty much said goodbye to OSU and even academic philosophy due to my frustrations with the lack of access. I didn’t have the energy to fight anymore.

I don’t say these things because I want pity or because I hate my employer. I’m obviously still here. But it’s an important part of my professional background. I have said these things because I’m a very privileged person with an unusual access to resources. Most tenure-track or contingent faculty are not in my position. Most of us can’t hire lawyers. So, if I almost left, who else is falling through the cracks? Who are our students, colleagues, and friends who left because they understandably had enough? Or never made it through the door? These questions haunt me. But they also motivate my pedagogical and research methodologies. I strive to make my work practices of freedom and to ensure that my students do not have the ableist experiences that I had early in my career. I should note that my situation transformed overnight with a change in administrative leadership: a new administrator approved all of my accommodations in a single email. Our working conditions should not depend on who is in charge. It’s important to note my problems are not unique to OSU. It’s a fantastic school and I have great colleagues. Inaccessibility is about power and institutions.

What other problems and issues with exclusion and inaccessibility have you encountered in either your current position or as a student?

Three main inaccessibility issues stand out in my mind. The first issue is from when I was a graduate student, because it shows the gap in what I and the institution knew. At the time, my TMJ had progressed so much that the bone was cracking and I was in constant pain. I had jaw surgery to repair the joint over the summer and was to have my jaw wired for almost a year. My surgeon told me that I would have no problem taking classes or performing my teaching assistant duties. However, when classes started, I learned that one of my classes required an oral presentation. I could not project my voice sufficiently, so my professor offered to revise the assignment: I could write a paper and stand in front of the classroom while another student read it for me. I was so horrified by this idea that I decided to take a medical leave of absence. That semester was the only one during my time at PSU that this particular course, which was important to my AOS, would be offered. But neither I, nor my professors, could imagine access interventions at the time. Of course, now I know better!

The second issue is scheduling at academic conferences. It’s still common for conferences to schedule back-to-back panels from early in the morning to the evening without breaks or with very short breaks. As someone who experiences chronic fatigue, this scheduling means I have to miss content. The very temporality of the conference excludes me and other philosophers with similar conditions. I wish all conferences would schedule regular breaks and provide spaces for rest.

Additionally, I have experienced common problems with physical access, such as lack of accessible parking or elevators, malfunctioning elevators, and inaccessible restrooms, that is, restrooms that are inaccessible to myself or my service dog. Because academic research usually requires travel, I often experience difficulties negotiating access needs with host institutions, hotels, and airlines. Frequently, I encounter assistive staff who are not trained in how to handle wheelchairs or service dogs. For example, in airports, the staff who pushed my wheelchair almost always ran over my service dog’s feet even when I warned them.

Exclusion also happens in more subtle ways. As a professor, especially during the pandemic, I often receive emails from students who are severely ill—sometimes even from hospital beds—apologizing for submitting homework late and asking for extensions. I was this student, starting at Emory and continuing through my doctoral degree at PSU. As a graduate student, I frequently took incompletes, and I took a couple years longer to finish than most of the student in my cohort. I wrote emails asking for extensions from the emergency room, doctors’ offices, or my bed, always terrified that my professors would think that I wasn’t a “serious” student, when, in reality, I was just trying to survive and simultaneously meet deadlines. Today, I always respond, “Take care of yourself first, we’ll deal with class later. Of course, I will accept your work without penalty.” Sometimes I think that it was this form of ableism that was the worst: if I did not complete my coursework on the standard timeline, I was lazy and incompetent. I experienced it subjectively as internalized ableism. But it was also experienced socially and institutionally as peers who disbelieved my disability or accused me of “malingering” and professors who docked points and recorded absences.

I still struggle with this kind of internalized ableism, to be honest. In the past couple of years, I’ve had two major health disruptions throw off the timeline on an important project. When my chronic conditions flare or, more recently, when a surprise encounter with COVID knocked me out with a horrid case of brain fog, I’ve gotten behind on some deadlines. Each time that this sort of delay happens, despite my knowledge that I cannot help the situation, I feel irresponsible and useless. The difference is that, unlike when I was a graduate student, I at least have the conceptual tools and frameworks from disability studies and activism to send myself the same message that I send to my students: “Take care of yourself first.” I know other Dialogues on Disability interviewees have discussed this point. The reason I repeat it here is because of how important I think that it is to be open about our illnesses as scholars; to make it clear that you can be sick and successfully complete a Ph.D., get a job, and get tenure. And I wish someone had told me that when I was crying in pain on the bathroom floor of my graduate school apartment, as it would have at least spared me some anxiety. More importantly, I’m where I am today because of the grace of individual professors, the threats of an attorney, and the decisions of a wonderful administrator. Justice should not depend on the particularities and personalities of the individuals in power. If education is to be more accessible, we must transform our institutions.

Stephanie, I think that is a great note to end this interview on but how would you like to end this interview? Would you like to say anything more about something that we’ve discussed? Is there anything that you would like to talk about that we haven’t touched upon? Do you want to recommend any articles or other materials related to something you’ve mentioned in this interview?

Dear Reader/listener: You belong here. Don’t listen to whoever told you, “you’re not meant to be a philosopher”!

If you’re new to academic work on disability, I recommend starting with Eli Clare’s Brilliant Imperfection, which I mentioned earlier in this interview. If you’re new to Phish, the album A Live One, which is the one that got me hooked on the band as a teenager, is available on your favourite streaming service.

You can check out resources for my Philosophy School of Phish class at philosophyschoolofphish.com. The Phish and Philosophy Public Philosophy special issue will be available online this summer. Anyone with questions is welcome to reach out to me at jenkstep@oregonstate.edu.

Thank you so much for the opportunity to think through these issues with you, Shelley.

Stephanie, thank you very much for this wonderfully informative interview. I hope that the university faculty and administrators who read or listen to your remarks will put into practice the lessons that you have given them. I’m sure your praise for Phish will expand its phan-base and that you can expect to meet more professional philosophers at your future Phish events!

Readers/listeners are invited to use the Comments section below to respond to Stephanie Jenkins’s remarks, ask questions, and so on. Comments will be moderated. As always, although signed comments are preferred, anonymous comments may be permitted.

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Please join me here again on Wednesday, July 20th for the eighty-eighth installment of the Dialogues on Disability series and, indeed, on every third Wednesday of the months ahead. I have a fabulous line-up of interviews planned. If you would like to nominate someone to be interviewed (self-nominations are welcomed), please feel free to write me at s.tremain@yahoo.ca. I prioritize diversity with respect to disability, class, race, gender, institutional status, nationality, culture, age, and sexuality in my selection of interviewees and my scheduling of interviews.

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