Hello, I’m Shelley Tremain and I’d like to welcome you to the thirty-sixth installment of Dialogues on Disability, the series of interviews that I am conducting with disabled philosophers and post here 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 personal prejudice in philosophy, in particular, and in academia, more generally; resistance to ableism; accessibility; and anti-oppressive pedagogy.
I acknowledge that the land on which I sit to conduct these interviews is the traditional territory of the Haudensaunee and Anishnaabeg, covered by the Upper Canada Treaties and directly adjacent to Haldiman Treaty territory. I offer these interviews with respect and in the spirit of reconciliation.
My guest today is Christine Wieseler. Christine is currently a postdoctoral research fellow at the McGovern Center for Humanities and Ethics in the McGovern Medical School at the University of Texas Health Science Center at Houston and a lecturer in the Program for Writing and Communication at Rice University. Her research combines biomedical ethics, feminist philosophy, phenomenology, and philosophy of disability. Christine enjoys going to art museums, drawing, painting, and baking. For more information on Christine’s teaching and publications, visit Christine’s website at christinewieseler.com.
Welcome to Dialogues on Disability, Christine! When you started college, you had plans to be an art educator or art therapist. Tell us about your background and why you decided to do a Ph.D. in philosophy instead.
Thank you, Shelley! I am honored that you invited me to be a part of this interview series.
During grade school, I made the serendipitous discovery that I enjoy teaching. A classmate of mine phoned me every night for most of a school year, asking me to share my answers to the math problems that we had been assigned. I refused to give her the answers; instead, I ended up teaching her how to solve the problems. This situation offered my first experience of the exhilaration of helping someone to understand something that they could not comprehend on their own.
Making art was an important aspect of my life prior to and at the time that I began my studies at Alverno College. I thought that being an art educator or therapist would enable me to combine my goal of teaching with my love of art. I expected that facilitating the personal transformation of students or clients would be a fulfilling career. I enjoyed developing my abilities as an artist and having the opportunity to work with a variety of populations in art therapy field-placements and an internship. While I retained the goal of contributing to the self-transformation of students, I ended up choosing philosophy rather than art as the medium.
In grade school and high school, I often asked philosophical questions, though I did not know that was what I was doing at the time. Teachers typically treated my concerns as if they were trivial or scolded me for not accepting on faith the truths that they espoused. Above all, they tried to get me to stop asking questions about metaphysics and epistemology. It was not until my first philosophy course in college that I was encouraged to ask such questions.
I remember that at some point, prior to college, I learned a bit about ancient Greek philosophers and wished that I could be a philosopher, but I thought that I had been born much too late. I was not aware that one could be a philosopher in contemporary times! I was thrilled to begin to learn about both the rich history of philosophical inquiry and the ways that philosophy could be useful in everyday life. For the most part, I enjoyed the difficulty and challenge of thinking in new ways.
It was a slippery slope from that introduction to philosophy course to a Ph.D. in philosophy! The professors in the Department of Philosophy at Alverno are all truly exceptional teachers and human beings. I wanted to learn as much as possible from them. However, given that I was taking out student loans for my education, I did not want to take classes that would not count toward my major. I added philosophy as a second major, while still planning to pursue an M.A. in art therapy.
Two types of factors influenced my decision to apply to graduate programs in philosophy: practical concerns—related to finances and some of the complexities involved with becoming a licensed art therapist—and the desire to devote significant time and energy to studying philosophy. Ultimately, I decided to pursue a Ph.D. in philosophy so that I could combine my goal of teaching at the university level with continued engagement in philosophy.
You teach courses in biomedical ethics, medical communication, and other courses designed to help students grapple with ableism and other forms of discrimination in medicine. How do you talk about ableism and oppression in your courses, Christine, and what are your general goals and aims for anti-ableist teaching in biomedical ethics?
I have become increasingly concerned with how medical education addresses disability. While many professors at medical schools are beginning to assert that medical educators have an obligation to go beyond focusing on the biomedical conditions classified as “disabilities” or “impairments,” that is, by teaching students how to interact with disabled patients and understand their goals and experiences, I have found very few concrete recommendations for best practices on how to accomplish this task.
More than Ramps: A Guide to Improving Health Care Quality and Access for People with Disabilities by Lisa Iezzoni and Bonnie O’Day is an incredibly helpful resource. I have been working in collaboration with Dr. Anson Koshy, Medical Director of the Center for Autism and Related Conditions at the Children’s Learning Institute, as well as Dr. Margaret Nosek, Director of the Center for Research on Women with Disabilities at the Baylor College of Medicine, in order to formulate learning objectives, assessments, and learning activities geared toward raising medical students’ awareness of obstacles that disabled people face, not only in accessing healthcare in the first place, but also within healthcare facilities. Many of the problems that disabled people encounter in clinical settings stem from healthcare providers’ poor communication or lack thereof. Accordingly, education about disability for medical students is an important area for improvement in medical training and practice.
At McGovern Medical School, I have developed and taught a number of elective courses focused on medicine and marginalized embodiment. For example, I have taught courses entitled Ethical Issues in the Treatment of Intersex Patients; Patient Experiences: Illness, Disability, and Quality of Life; Phenomenology of Illness; and Anti-Fat Bias in the Age of the ‘Obesity Epidemic.’ I have taken the approach of teaching on topics that are not included in, or are only minimally addressed in, the required curriculum. I thoroughly enjoy having the opportunity to be a gadfly in a medical school. Even though much of what I teach challenges students to think in ways that are new and uncomfortable to them, they have been generally willing and even eager to take up the challenge.
Medical research and practice have the potential to improve and save lives, but also to enact significant harm. I think it is important for students to understand the power of medicine to perpetuate the oppression of many social groups under the guise of applying objective scientific findings. Students tend to have an easier time recognizing how this has happened in the past than how it continues in the present. I often begin with historical examples before turning to present-day structural issues.
I have adopted Brilliant Imperfection: Grappling with Cure by Eli Clare as a text in a couple of my courses. Clare uses historical, as well as contemporary phenomena, to illustrate ways that medicine can be a force for social control. For example, he discusses ways that racism in psychiatry used the diagnosis of “protest psychosis” to—through its medicalization—stifle Black people’s opposition to white supremacy. Clare does a fantastic job of consistently engaging in intersectional analyses; he simultaneously thinks about how race, gender, class, disability, sexuality, environmental destruction, and capitalism function together in order to shape how we are oriented toward cure and how we experience our bodies. Rather than engage in an outright, blanket rejection of cure, Clare details his own struggle to reckon with his ambivalence toward medical interventions. In line with the book’s subtitle, he invites readers to truly grapple with cure.
Most medical students and pre-medical students cite a desire to help patients—including by curing them—as their primary motivation for becoming a physician. They, typically, have never encountered the idea that cure is not unquestionably good. Thus, I think it is important for medical students to consider how ableism undergirds the assumption that cure is always desirable.
With respect to helping students to grapple with ableism specifically, my primary goals are to prompt students to: question dominant narratives about disability, recognize the ways that medicine is shaped by social values, and engage with disabled peoples’ accounts of their own lives. In this regard, we read authors such as Ron Amundson, Havi Carel, Harriet McBryde Johnson, Nancy Mairs, Tom Shakespeare, and Susan Wendell.
Healthcare providers tend to assume that disabled people, on average, have a significantly lower quality of life than nondisabled people. On average, however, this is not the case: they don’t have a lower quality of life. This assumption, among others, can impact interactions between healthcare providers and disabled people and the types of medical intervention that physicians consider appropriate in all kinds of problematic ways. Therefore, when I work with medical students and nursing students, I have additional goals.
First, students need to develop the ability to recognize when—and how—a functional difference or chronic illness is relevant to a patient’s current medical concerns and when it is not. Second, students learn to develop ways to ensure that healthcare facilities are not only accessible to disabled people, but also welcoming to them. Too often, I notice people equating accessibility with “compliance” with the Americans with Disabilities Act. I think healthcare providers, among others, need to go beyond simply meeting legal requirements—which, in any case, do not guarantee that individuals’ needs are being met.
You have research interests in feminist philosophy of disability. What questions and problems in philosophy of disability in general and feminist philosophy of disability in particular do you work on at present and hope to work on in the future?
My initial interest in feminist philosophy of disability was related to epistemic issues regarding disability within the bioethics literature. For example, Peter Singer makes very problematic claims in Practical Ethics about the value of disabled people’s lives while simultaneously maintaining that his claims do not entail prejudice. As I delved further into the bioethics literature, I realized that many bioethicists make certain types of unexamined and unwarranted assumptions about disability. Although I won’t develop this topic here, I discuss it in detail in chapters one and two of my dissertation, A Feminist Contestation of Ableist Norms: Implications for Biomedical Ethics, Disability Theory, and Phenomenology. That these assumptions remain unexamined is especially troubling given the centrality of disability for numerous issues within bioethics: genetic and prenatal testing, the right to refuse treatment, healthcare rationing, physician aid in dying, and organ transplantation policy, to name a few.
My dissertation and current work are both concerned with ways that biomedical ethics and phenomenology have tended to omit disabled people’s experiences or contrast them with the experiences of “normal” subjects.
I have just completed revisions to “Missing Phenomenological Accounts: Disability Theory, Body Integrity Identity Disorder, and Being an Amputee.” In this article, which is forthcoming in the Fall 2018 issue of IJFAB: The International Journal for Feminist Approaches to Bioethics, I argue that phenomenology provides a method for disability theorists to describe embodied subjectivity that is lacking within the social model of disability. Within the literature on body integrity identity disorder (BIID), dominant narratives of disability are influential, individual bodies are considered in isolation, and experiences of amputees are omitted. Research on BIID tends to incorporate an individualist ontology. I argue that Merleau-Ponty’s conceptualization of being-in-the-world, which recognizes subjectivity as embodied and intersubjective, provides a better starting-point for research that describes the experiences of people with BIID and amputees.
I am in the process of revising “Challenging Conceptions of the ‘Normal’ Subject in Phenomenology,” a chapter for the anthology entitled Race as Phenomena: Between Phenomenology and Philosophy of Race, edited by Emily Lee and forthcoming from Rowman and Littlefield. In this chapter, I consider the benefits and limitations of Merleau-Ponty’s approach to phenomenology for thinking about lived experiences through the axes of gender, race, and disability. Merleau-Ponty implicitly assumes that people who are privileged in these categories are “normal.”
Philosophers concerned with experiences of chronic illness and impairment, such as Havi Carel, Shaun Gallagher, and S. Kay Toombs, build on Merleau-Ponty’s framework. In doing so, they also make implicit assumptions about what types of bodies count as “normal” or “healthy.” By failing to thematize gender or race, these authors imply that the experiences of white women and people of color are pathological. It is essential for scholarship that highlights aspects of disabled people’s experiences to be intersectional in order to avoid this outcome. Instead, I contend that phenomenologists ought to increase the amount of attention devoted to the role of social structures in shaping the experiences of individuals.
I am interested in, and currently researching, the role of imagination in facilitating or hindering understanding of disabled people’s experiences. I have observed that many nondisabled people who have not spent time meaningfully engaging with a disabled person tend to think in terms of narratives that are dominant within movies, books, and news articles; namely, their perspectives tend to be informed either by the idea that disability is tragic and disabled people are to be pitied, or by the overcoming narrative which frames disabled people as inspiring due to what we’re able to accomplish “in spite of” being disabled. Disability theorists such as Eli Clare, Alison Kafer, and Tobin Siebers characterize imagination as an obstacle to understanding due to the influence of ableism, but they also intimate that there are ways in which imagination can serve as a means for alternate conceptions of disability.
I agree that imagination informed by ableism is often treated as a substitute for knowledge, but I do not think this is necessarily the case. Clare calls into question the ways that the ideology of cure obscures our collective ability to imagine disabled people’s lives as fulfilling. In Disability Theory, Siebers makes a distinction between “individual imagination” and “cultural imagination,” and suggests that we need the latter rather than the former. However, his discussion of this topic is quite brief. Kafer’s Feminist, Queer, Crip opens by focusing on the contrast between ways that medical professionals and professors versus friends, family members, and other disabled people imagine possible futures for the author. Whereas the latter group imagines Kafer’s future as “ripe with opportunities,” the former group seems to believe that Kafer, in order to cope with her newly acquired physical limitations, will require such a significant amount of time and effort that she will be unable to pursue graduate studies.
I am drawing on Amy Kind’s work on philosophy of imagination to explore the potential benefits that imagination can have when it is shaped in particular ways. For example, imagination may have utility for understanding when it is grounded in actual disabled people’s experiences and when it takes sociopolitical context into account.
As my discussion above demonstrates, I draw freely from the traditions of analytic and continental philosophy. I chose pluralistic graduate programs—Miami University and the University of South Florida—so that I could learn and use the methods of both traditions. My work is also interdisciplinary in nature, which I think is especially important for feminist disability theory. I have learned a great deal from disability-rights activists, as well as theorists in cultural studies, disability studies, English, feminist studies, literature, nursing, religious studies, and sociology, for example. I greatly appreciate all of the ways that feminist philosophers of disability—and you in particular, Shelley—have made my trajectory within the discipline easier by advocating for disabled philosophers and by showing that disability is a philosophically interesting and important topic.
[Description of coloured photo below: a headshot of Christine, a white woman with cropped hair, at the National Mall in Washington, D.C. She is looking directly at the camera, smiling, has a tattoo on her right arm, and is wearing glasses with plastic frames. Ground, trees, and people walking can be seen in the background of the frame.]
Christine, you are a first-generation university student. So was I. The issues that arise for first-generation students are difficult to articulate and seldom given attention in philosophy, largely due, I think, to the pervasive prestige bias that conditions interactions, hiring, friendships, and so on in philosophy. What do you think faculty and administrators should do to mitigate the classism and prestige bias that first-generation students confront? Do you have any personal experiences in this regard that you would like to share with our readers and listeners?
This is a really great question. I agree that these issues merit more attention. I have a few suggestions. First, I will share a few aspects of my own experiences.
I was fortunate that even though my parents did not attend college, they valued education and told me repeatedly that I needed to go to college so that I would have better career opportunities than they did. For many first-generation students, college is primarily considered in this way. One of the unanticipated effects of attending college is that I came to question many of my core beliefs. Initially, I was naïve enough to think that people with whom I grew up and who instilled in me some of those core beliefs would be excited to talk about alternative ways of thinking. Yet, this has often not been the case. For example, I tried to talk about feminist theology with a pastor in the church in which I had grown up. Before I could get very far into the topic, he proclaimed that it “was wrong.” To be fair, there were others from my hometown who were excited to discuss the new ideas that I was learning about.
For me, being a first-generation student did not have much significance until graduate school. I was in good company while earning my bachelor’s degree. Faculty and staff at Alverno were very supportive and seemed not to assume that students arrived knowing all the social norms of academic life. It probably helped that we were all learning the expectations specific to Alverno. It is essential for colleges and universities to inform all new students about the resources that are available to them, including writing centers, tutoring services, services for students with disabilities, student health centers, career counseling, scholarship and grant assistance, and counseling services. Some institutions provide short-term no interest loans for students who have emergencies. These services may be especially important for first-generation students.
Once I started attending philosophy conferences and interacting with graduate students and professors from other institutions, I realized that some of the values and ways of interacting that I took for granted were frowned upon. Although I am by no means ashamed to have come from a working-class background, for the most part, I tried not to draw attention to myself during graduate school. I am sure that being privileged in other ways—being white and cisgender—facilitated my fitting in, to the extent that I did. Having classmates from a working-class background who did not try to blend in increased my awareness of my desire not to stand out. At the same time, I was envious that they seemed not to care what others thought and were unabashedly themselves. I still feel a bit conflicted. Although, since graduate school, I have been more vocal in calling attention to the implicit assumptions that faculty members from privileged backgrounds sometimes make about students’ (and my own) access to resources.
One of the implications of being a first-generation college student is that I must be able to generate enough income to pay for my expenses; there is no fall-back plan. This has definitely added to the stress of graduate school and the job market. In the U.S., one policy change that could help first-generation graduate students—and indeed, all graduate students in need of loans—would be access to subsidized federal student loans. Since 2012, graduate students have only had the option of taking out unsubsidized student loans, which means that these loans start accumulating interest immediately. I also think it would help first-generation students if hiring departments paid for moving expenses, even for positions that are not tenure-track. We often do not have the resources, even for an expense like this that others might consider minor.
Diversity institutes such as Philosophy in a Key Summer Institute (PIKSI) provide an important opportunity for members of groups underrepresented within philosophy to network and receive support when considering graduate studies and beyond. I am encouraged that the American Philosophical Association (APA) is providing funding for these types of efforts, as well as travel stipends for diversity institute alums to attend APA meetings.
What are your experiences with respect to accessibility at conferences and other aspects of the discipline? What does there need to be more of and what needs to change?
Philosophy has a long way to go in terms of making conferences, and the discipline generally, welcoming for disabled people. I will focus primarily on philosophy conferences here. Although I have noticed progress even in the last few years, it seems that accessibility is still often an afterthought. In practice, this means that disabled people must spend time researching whether or not it will be possible for us to get to the conference location, stay at the conference hotel or dorm, and safely/comfortably negotiate the space. We are often forced to disclose personal information in the attempt to obtain accommodations that may or may not be available. Many of the barriers imposed on disabled philosophers are easy to remedy, while others are more involved.
For example, I have recently attended conferences that were set up so that presenters were expected to climb stairs onto a stage, a conference that required audience members to climb stairs to get to their seats, a conference banquet in a restaurant that could only be accessed by stairs, film screenings without closed captions, conference hotels and other facilities with elevators that were out of order, and panels with presenters who refused to use microphones. If we are not visibly disabled—or seen as “not disabled enough”—we may face suspicion about the legitimacy of our requests. I have difficulty standing for long periods of time, so receptions without seats present a dilemma for me. As another example, most of the time conference organizers neglect to include accessible hotel rooms in the conference block. This oversight usually means that it is not possible to make a reservation at the conference rate. Generally, I have been able to resolve this problem through a series of phone calls and emails. However, it is frustrating to have to go through this routine almost every time that I want to attend a philosophy conference.
I have been on multiple conference committees in order to improve conference accessibility and do the detective work so that other participants are not forced to shoulder that burden. I have found that most people with whom I have spoken regarding accessibility are receptive to my feedback and suggestions, but this has not always been the case. I wish that conference planners were more mindful about the spaces of these meetings and that they were better about communicating. Calls for papers should provide accessibility information, as well as a contact for questions, so that potential participants know their options before putting in the effort to submit an abstract or paper. It is not safe to assume that conferences will be accessible.
Graduate student/teaching associates often have difficulty obtaining reasonable accommodations due to their dual status as students and employees, as well as the fact that graduate-level coursework and thesis/dissertation work entails different academic expectations than undergraduate-level courses. Readers and listeners interested in additional discussion of these issues, should see Negotiating Disability: Disclosure and Higher Education edited by Stephanie Kerschbaum, Laura Eisenman, and James Jones.
There is also room for improvement to increase the accessibility of the job market. I have noticed that some departments post an advertisement for a given position when there is a week or less until the application deadline. While this arrangement is not ideal for any job applicant, I expect that it may prevent people with chronic pain or other conditions that involve meticulous planning from applying for such jobs. In my experience, departments are hit or miss regarding accessibility considerations for on-campus interviews. As a job candidate in a “buyer’s market,” the asymmetry is palpable, which adds to the difficulty of requesting accommodations. I think that it is best if search committee chairs or other people handling travel arrangements for interviews ask all candidates about accessibility needs rather than require job candidates themselves to ask about accessibility.
Would you like to make some closing remarks or recommend some books, articles, videos, or music on any of the topics that you discussed in our interview?
On March 14, 2018, the Association of American Medical Colleges released this report on disabled medical students and physicians: “Accessibility, Inclusion, and Action in Medical Education: Lived Experiences of Learners and Physicians with Disabilities”.
Some of the readings on disabled people’s experiences that I’ve included in my classes are: “Disability, Ideology, and Quality of Life” by Ron Amundson, “I Am Well, Apart from the Fact that I have Cancer” by Havi Carel, Phenomenology of Illness by Havi Carel, Too Late to Die Young: Nearly True Tales from a Life by Harriet McBryde Johnson, Waist-High in the World: A Life Among the Nondisabled by Nancy Mairs, “Nasty, Brutish, and Short? On the Predicament of Disability and Embodiment” by Tom Shakespeare, and “Toward A Feminist Disability Theory” by Susan Wendell.
As I indicated in my discussion of imagination and disability, I recommend Brilliant Imperfection: Grappling with Cure by Eli Clare; Feminist, Queer, Crip by Alison Kafer; and Disability Theory by Tobin Siebers.
I’ve also mentioned and highly recommend More than Ramps: A Guide to Improving Health Care Quality and Access for People with Disabilities by Lisa Iezzoni and Bonnie O’Day for discussion of disabled people’s experiences within healthcare facilities and how to improve them.
I would like to thank you again for inviting me to do this interview and for these thoughtful questions, Shelley. I should mention that I just received a copy of your latest book, Foucault and Feminist Philosophy of Disability. I’m really looking forward to reading it!
Christine, thank you for these terrific recommendations and your very informative remarks throughout this interview. I hope that you enjoy my book!
Readers/listeners are invited to use the Comments section below to respond to Christine Wieseler’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, April 18th, at 8 a.m. EST, for the third-anniversary 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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