The “Problem” Isn’t Disabled Bodies — It’s the Violent Structure of Our Society

Power has a way of hiding its points of origin. This is what power does: it obfuscates the responsibility that it plays in oppressing individuals and groups. It is a tactic that blames those who are targets of its machinations.

In his book, Black Skin, White Masks, philosopher and anticolonial theorist Frantz Fanon powerfully cast this dynamic of blaming the victim as similar to how a conventional doctor views varicose veins as a condition caused by “constitutional weakness” in the varicose walls of a worker’s legs, when in fact the condition follows from exploitative conditions of overwork under which a person is “compelled to spend ten hours a day on [their] feet.” According to this insight, it is not the worker who has the problem. Rather, it is the network of social relations in the form of oppressive labor extraction that causes the problem.

Feminist philosopher, disability theorist and biomedical ethicist Christine Wieseler similarly argues that medical models of disability “blame the victim” by identifying individual bodies as “problem bodies,” emphasizing the idea of a medical cure that is underwritten by a conception of embodied normativity. In contrast to medical models of disability, she argues, social models of disability rethink ways of “helping people to figure out how to live with impairments and chronic illnesses.”

For Wieseler — an assistant professor in the Department of Philosophy at California State Polytechnic University, Pomona — the social model of disability is linked to the counter-hegemonic assertion that disabled people “are capable of living worthwhile lives” and that they have important epistemic contributions to make within a world that negates their capacity for knowledge production. Within this context, Wieseler troubles the arrogance of those who are nondisabled and also challenges bioethicists who presume to know the lived experiences of those who are disabled.

In this interview, Wieseler provides a veritable primer for understanding disability studies and the deep implications for disability justice.

George Yancy: I think that there are many who conceptualize persons with disabilities/disabled people as having something “wrong” with their bodies or their embodiment. In this way, the “wrongness” of the body is said to be intrinsic to the body. It seems to me, however, that such a move deflects from disability studies’ commitment to social justice work. In your engaging article, “Challenging Conceptions of the ‘Normal’ Subject in Phenomenology,” you differentiate between the concept of impairment and disability. Please elaborate on how that distinction might help us to rethink the ways in which the latter concept (disability) brings undeniable attention to issues of injustice within the context of disability studies.

Christine Wieseler: Disability rights advocates coined the phrase the “medical model of disability” to refer to the conception of disability as an individual biomedical condition. This model focuses on bodies as the sole origin of any disadvantages individuals may face; thus, those who subscribe to this model recommend development of medical cures, treatments and methods for normalization of bodies with functional limitations. Examples include medication; psychiatric treatment; surgical intervention; prosthetics; and speech, occupational and physical therapy. Some characterizations of the medical model add to this description that it considers disability to be a personal tragedy that warrants pity, and, in some cases, charity. One way in which the labeling of this model as “medical” is misleading is that its influence extends far beyond medical contexts. This way of thinking about disability tends to be treated as common sense in how disabled people are portrayed in the media, for example.

Your question articulates the exact reason that disability activists posited a distinction between “impairment” and “disability”: to challenge the assumption that there is something wrong with the bodies of individuals and to shift attention to what is wrong with society insofar as it is oppressive to disabled people. The Union of the Physically Impaired Against Segregation introduced the impairment/disability distinction, defining “impairment” as “lacking part of or all of a limb, or having a defective limb, organ or mechanism of the body.” You will notice that this is a fairly narrow definition; the term “impairment” has come to be used to refer to a broad array of atypical forms of appearance and ways of functioning. The Union of the Physically Impaired Against Segregation argued that social — not biological — factors caused many of the obstacles people with impairments face. Disability rights activists conceived of the status of disabled people as that of an oppressed minority. The Union of the Physically Impaired Against Segregation says the following about “disability”:

Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society. It follows from this analysis that having low incomes, for example, is only one aspect of our oppression. It is a consequence of our isolation and segregation in every area of life, such as education, work, mobility, housing, etc.

The Union of the Physically Impaired Against Segregation focused on increasing the economic resources available to disabled people. Yet, members of this organization recognized that poverty among disabled people was intertwined with (and the consequence of) other social obstacles. [In The Politics of Disablement: A Sociological Approach] Michael Oliver coined the term, “the social model of disability,” to name this way of thinking about impairment and disability. This model has remained especially influential amongst disability activists and theorists in the U.K., though some aspects of it have been adopted in many parts of the world.

My sense is that people generally think about disability as consisting of a physical or cognitive “deficit.” This raises all sorts of questions related to, for example, “epistemic oppression” — a form of oppression that occurs when people in positions of power assert that those who are disabled will only benefit from the people they deem as having epistemological expertise and as possessing “genuine” knowledge (very often those who are deemed “able-bodied”). And while it is important not to conflate the dynamics of epistemic oppression within the context of anti-Black racism, I think that it is important that we challenge the differential ways in which knowledge possession is assumed to be devoid vis-à-vis those who are disabled. Could you elaborate on how you understand epistemological oppression within the context of disability studies, and discuss how you conceptualize disabled knowers and the richness and complexity of their knowledge, and how their knowledge can transform epistemic forms of arrogance and hegemony?

There is a long history of disabled people being denied epistemic authority in regard to our own bodyminds and experiences. (I use Margaret Price’s term “bodymind” to emphasize the inextricability of the body and mind and the fact that many impairments are not readily apparent.) The Disability Rights Movement’s slogan “Nothing About Us without Us” is, in part, a challenge to epistemic oppression — which entails the assumption that disabled people are unable to make contributions to shared knowledge, as well as ways in which the disabled people’s knowledge claims are actively undermined. In spite of good intentions, nondisabled “experts” on disability have sometimes made the lives of their patients or students worse by privileging normalization. In other words, health care professionals and educators attempted to get their patients/students to look and function as closely to a mythical “normal” bodymind as possible (e.g., prohibiting D/deaf children from using sign language or forcing children with polio to walk rather than using a wheelchair). There is still an overemphasis on cure rather than helping people to figure out how to live with impairments and chronic illnesses.

Disabled people and our allies continue to demand epistemic justice. I would suggest that a central assumption of disability studies is that disabled people are capable of living worthwhile lives and that we have important contributions to make — including epistemic ones. Unfortunately, these assumptions still seem to go against the grain, and this is readily apparent within philosophy.

When I first read philosophy containing false assertions about the lives of disabled people, I thought that this should be easy to fix. Philosophers are concerned with truth and engaging in just epistemic practices, right? I thought that this lack of knowledge could be corrected through engagement with empirical research and testimonies of disabled people. However, it turns out that the problem is much deeper and more difficult to address. Certain bioethicists, in particular, are so sure that they know about the lives of disabled people that they dismiss any claims that challenge the views they hold, sometimes paying lip service to the positions of disability theorists/activists, but then going on to contradict them. The epistemic arrogance is truly astounding. I now believe that epistemic humility is a necessary condition for the knowledge of disabled people to make any difference in the beliefs of nondisabled knowers such as these bioethicists. Encountering the richness and complexity of this knowledge is not enough; having an openness to being wrong (i.e., demonstrating epistemic humility) and valuing the knowledge of disabled people are both necessary.

My thinking on how disabled people are subject to epistemic oppression is heavily indebted to the work of both feminist theorists who are interested in ways that sexism and racism manifest in epistemic practices, and feminist theorists examining how ableism informs epistemic practices. While I agree with you that it is important not to conflate how epistemic oppression occurs in the context of anti-Black racism and ableism (in part, because these forms of oppression intersect with each other as well as sexism and other forms of oppression), there is much to be gained from considering different manifestations of epistemic oppression together.

As I discuss in “Epistemic Oppression and Ableism in Bioethics,” how folks go about trying to learn about disabled people’s experiences matters, because the type of approach determines whether one is promoting epistemic justice or undermining it. Drawing on the work of Toni Morrison, Audre Lorde and Iris Marion Young, feminist philosopher Nora Berenstain uses the term “epistemic exploitation” to refer to the phenomenon of privileged people pressuring members of marginalized groups to educate them, especially regarding their experiences of oppression. As Berenstain puts it, “The dominantly situated feign engagement with the marginalized but refuse to listen to them.” This form of epistemic labor is problematic, in part, due to the asymmetry between the social positioning of knowers but also because it (1) is an unfair demand on marginalized people; (2) is unlikely to be recognized; and (3) stands little chance of receiving proper epistemic uptake. I would suggest that it is better for those who want to gain a better understanding of disabled people’s experiences to engage with the work of folks who have chosen to take on this type of labor rather than asking disabled people they happen to encounter. This might sound obvious, but, in my experience, it isn’t.

One theme I return to within disability theory is that knowing is a communal project. This is an important corrective in the face of pressure to represent “the disability community.” (Sidenote: there are many diverse disability communities, and there are likely to be disagreements on some issues even within a single disability community.) We need affirmation from others in the face of dominant narratives that fail to accurately portray our experiences, and we need to learn from others when our experiences and understandings differ. We all have limitations in what we notice and how we make sense of the world.

There are a number of different concepts that have been developed to refer to knowledge accumulated within disability communities. I will mention a few of the more recent developments here. Leah Lakshmi Piepzna-Samarasinha, a self-described sick and disabled femme of color, notes that the terms “crip skills” and “crip science” are used by members of these communities to refer to ways that disabled people figure out how to navigate environments that have been designed largely around the presumption of typical bodyminds and knowledge grounded in lived experiences of disabled people.

Disability theorist Rosemarie Garland-Thomson suggests that we — disabled and nondisabled people alike — should develop “disability competence” with the following five components: biomedical decision-making, disability culture and history, accessible technology and design, disability legislation and social justice, and disability cultural competence research. Most of us do not receive any kind of formal education about disability, much less one informed by a critical disability studies perspective. Recognizing this personal and societal knowledge gap is an important starting point for being a participant in the communal project of knowing about disability.

Returning to the question of epistemological oppression, your work brings critical attention to the gaps that exist within the field of biomedical ethics in relationship to its failure to understand disabled people. When I think about biomedical ethics, I tend to think about euthanasia or end-of-life care, etc., but not deep and probing issues regarding disability studies. Of course, that might be a function of my ignorance. So, what problematic assumptions do you think undergird biomedical ethics vis-à-vis disability studies? Also, in what way do your critical insights regarding this important issue help those who teach courses in biomedical ethics, and also help those who are health care professionals?

When I started examining bioethics textbooks, I realized that beneath the disagreements on a number of issues that disproportionately impact disabled people (e.g., selective abortion and prenatal genetic diagnosis, organ transplantation policies and other forms of health care rationing, debates about health care policy, physician aid-in-dying, euthanasia), there tended to be shared assumptions about disability. Specifically, I noted that many bioethicists assume that the medical model of disability provides a sufficient way of conceptualizing “disability,” that disabled people, on average, automatically have a significantly lower quality of life solely on the basis of their bodyminds, and that genetic determinism and reductionism provide adequate scientific accounts for making sense of genetic information. All of these assumptions are either questionable or false, but collectively, they contribute to the devaluation of disabled people and deliberations on moral issues that fail to take into consideration the experiences of the very people whose well-being and lives are at stake. Relatedly, the bioethics literature tends to treat disabled people as objects of knowledge rather than subjects.

Some may question if it is even worth trying to transform bioethics given the aforementioned problems. I believe that progress has already been made insofar as there are increasing numbers of disabled and nondisabled philosophers whose work is informed by critical disability studies challenging ableism in bioethics, whether this involves clinical ethics consultations, research, teaching, or a combination of these areas. As Jackie Leach Scully pointed out in Disability Bioethics: Moral Bodies, Moral Difference, experiences of disability may impact “perceptions, interpretations, and judgments of what is going on in moral issues, especially moral issues that have direct relevance to disability.” This is the starting point for disability bioethics, which is emerging as a field. In some ways, we are still figuring out what that means. In The Disability Bioethics Reader, Joel Michael Reynolds and I posit these three criteria as necessary for disability bioethics:

• a critical relationship to common narratives and “common sense” claims about disability;
• theory and practice rooted in critical disability scholarship, with an emphasis placed on testimony by and work from disabled people, as well as emphasis placed on participatory models of research and practice;
• inquiry committed to increasing justice and equity for people with disabilities.

Disability bioethics is a crucial part of promoting disability justice, which I will discuss in my response to your final question of this interview.

I have personally witnessed the transformational power of teaching bioethics in a way that centers the experiences of disabled people. For example, I have taught portions of More than Ramps: A Guide to Improving Health Care Quality and Access for People with Disabilities, by Lisa Iezzoni and Bonnie O’Day to medical students in order to illustrate ways that “compliance” with the Americans with Disabilities Act of 1990 can be insufficient for creating accessible, welcoming clinical environments.

Narratives from disabled people about their experiences related to health care show the ways that problematic assumptions compromise the care they receive. Here are just a few examples: that disabled people are unable to speak for themselves; that all patients are able to hear their names being called in the waiting room; that disabled people are asexual and/or unable to have children; and that it is always appropriate to have a patient’s personal attendant in the exam room. The harms of practices centered around these assumptions include: undermining trust, patients missing their appointments, lack of or inadequate sex education and reproductive care, and missing the chance to stop abuse. Thus, even relatively minor changes in orientation toward disabled people and better communication can improve experiences in health care settings and prevent harm. Of course, large structural changes are also needed to combat ableism in medicine and to expand health care access for disabled people, but there are actions, such as teaching disability bioethics, that can make a difference.

How might disability studies speak generatively to questions of racialized embodiment within the area of critical philosophy of race or vice versa? For example, within the context of the history of white supremacy, whiteness signifies “beautiful bodies,” perhaps even “symmetrical bodies” (think here of racist assumptions within the areas of phrenology and physiognomy). Conversely, within white supremacy Blackness is seen as signifying “monstrous,” “ugly,” “inferior,” “uncivilized” bodies. In fact, it might be argued that white supremacy deems Black bodies (in virtue of their Blackness) as manifesting forms of disability; that is, racialized Blackness is a sign of dysfunctionality or as a site of aberration.

Before I respond directly to your question, I think it is important to provide a bit of context regarding disability studies and critical philosophy of race. Although this is changing (and there are exceptions), there has been a tendency for disability theorists to ignore race, implicitly centering the experiences of white disabled people. Critical race theorists have often focused on race without reference to ability status, which has had the effect of privileging nondisabled people’s experiences. It is worth noting that these dynamics are related. For example, along with the stigmatization of disability, the presumed whiteness of disability activism and studies was likely a factor in influencing some philosophers and other theorists of color to not identify as disabled. In addition, let’s face it: analyzing and responding to either ableism or racism is a daunting task. However, there are many examples that suggest that understanding how racism or ableism function requires understanding how they are intertwined with each other as well as with other forms of oppression, such as sexism.

Eli Clare’s Brilliant Imperfection: Grappling with Cure provides powerful illustrations of how different forms of oppression function together. For example, he analyzes the ableist notion of “defectiveness” and how it has been used in conjunction with sexism, racism, heteronormativity and white supremacy to frame a wide variety of bodyminds as inferior, having implications for practices including slavery, immigration policy, ex-gay conversion therapy, involuntary institutionalization and/or sterilization, and racism in psychiatry. Although it is essential to recognize that the harms are not equivalent, there is value in examining these social practices together to understand the broader picture.

In my research, I am attempting to bring together insights from critical philosophy of race, feminist theory and disability theory. As crucial as the impairment/disability distinction has been for disability activism and theory, in my work I have suggested that the term “impairment” is insufficient for the richness of embodied experience. We need to move beyond this way of conceptualizing the body to what phenomenologists such as Maurice Merleau-Ponty call the Oday “lived body,” which captures what it is like to be in the world in/as a particular bodymind.

As I discuss in “Challenging Conceptions of the ‘Normal’ Subject in Phenomenology,” I am increasingly convinced that very few of us consistently experience what Garland-Thomson calls “material anonymity,” which entails one’s bodymind fitting so well with the material and social environment that one is able to pursue their projects without having to attend to their body or other peoples’ responses to it. I claim that phenomenologists of illness and disability have tended to assume that healthy folks experience material anonymity. I suggest that this assumption fails to take into consideration ways that gender and race matter for lived experiences and implies that “normal” people are white and male. I do not think that the philosophers I critique intentionally did so. Nonetheless, analyses that focus on one aspect of social identity are limited and tend to obscure the role of intersectionality in day-to-day life. (In case anyone is unfamiliar with this concept, Kimberlé Crenshaw coined the term “intersectionality” to capture the need to examine how racism and sexism converge in discrimination against Black women. Intersectionality has come to be used more expansively to indicate that we are impacted by how we are classified across multiple social categories.)

I include examples from your work as well as that of Iris Marion Young, Sandra Bartky, Lisa Iezzoni and Bonnie O’Day, and Tommy Curry, in order to show that: (1) within the context of racism and sexism, many healthy people are compelled to carefully attend to others’ perceptions of our bodies in the attempt to avoid harm; and (2) gender and race shape the experiences of disabled people. When we center the experiences of privileged people and treat them as the norm, we miss most people’s lived experiences.

As a Black philosopher studying critical philosophy of race, my work has never been an abstract process or an abstract philosophical pursuit. I say this because I am racialized as Black, I have skin in the game. Doing this kind of philosophy brings all sorts of dangers, especially in the form of white racist backlash. This partly raises again the issue of epistemological oppression. White philosophers and white scholars, more generally, fail to understand the ways in which their whiteness obfuscates their understanding of processes of racialization, processes of anti-Black racism. As “able-bodied,” I would like to think that I possess a certain degree of epistemological humility not to speak on behalf of those who are disabled. Given the insidious nature of ableism, however, I am sure that I have not only failed at this humility but have failed at giving the sort of social justice attention and philosophical energy to issues of disability studies and disabled persons. Could you speak to the ways in which your engagement with disability studies overlaps with your own location within the world as disabled?

First, I want to mention that I existed as a disabled person for over seven years before I thought about disability as being political in nature or became part of any sort of disability community. I had no knowledge of disability activism or theory until I happened to get a job at a center for independent living (a nonprofit that provides services for people with disabilities, at which at least 51 percent of the board and staff must comprise people with disabilities).

In part, I went to college in an attempt to overcome having an impairment (i.e., get a degree so that I could get a job compatible with having an impairment), and I immersed myself in philosophy with the idea of having a life of the mind so that I could escape thinking about my body. In short, I was grappling with internalized ableism as well as a society designed in such a way that there are many obstacles to thriving as a disabled person.

Having grown up in a rather racially homogenous place where people mostly did not talk about race, college also pushed me to learn about racism and how I benefit from white privilege. In graduate school, I became increasingly interested in how philosophers addressed (or failed to talk about) embodiment. I was hesitant to pursue philosophy of disability because I worried not only about calling attention to my status as disabled but also about being able to get a job in philosophy.

Students and colleagues noticed my impairments regardless of whether I brought them up. For example, I taught a unit on thinking critically about disability in an introductory-level philosophy class and discussed some of my own experiences. After this disclosure, a student informed me that the class “had been waiting” for me to talk about being disabled. (It is strange to be going about my life with a body about which people expect me to give an account — an experience I know many people experience in different ways.)

In the end, I decided that I would rather do research I thought was important and interesting than research that I thought would make me more “marketable.” I’ve been fortunate enough to be employed full-time in philosophy in the years since I finished my Ph.D. The discipline of philosophy has improved in terms of thinking about accessibility (of conferences, for example) and starting to recognize philosophy of disability as a legitimate area of philosophy, but there is still much progress to be made.

What new conceptual or institutional directions do you think disability studies must take as it continues its fight against ableism and social injustice?

Disability bioethics must continue to build on the insights of disability justice, which some have called a second wave of disability rights founded by disabled folks who identify as queer, trans, Black, Indigenous, and/or people of color. The disability justice primer, Skin, Tooth, and Bone: The Basis of Movement is Our People by Sins Invalid (a disability justice performance project) states:

Disability justice activists, organizers, and cultural workers understand that able-bodied supremacy has been formed in relation to other systems of domination and exploitation. The histories of white supremacy and ableism are inextricably entwined, created in the context of colonial conquest and capitalist domination.

I would highly recommend this primer, as well as Shayda Kafai’s wonderful book, Crip Kinship: The Disability Justice & Art Activism of Sins Invalid. I consider it to be essential for disability bioethics to center intersectionality and to form bridges between disability studies, bioethics, and areas, such as philosophy of race, feminist philosophy, fat studies, trans philosophy, aging studies and animal studies. This was the starting point for The Disability Bioethics Reader (2022), which I co-edited with Joel Michael Reynolds. We are excited about the ways that our contributors have brought together these areas to consider the opportunities for the development of disability bioethics, and we hope this text will provide an excellent introduction to disability bioethics.

This interview has been lightly edited for clarity and length.