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.
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