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

Power has a way to hide its origins. This is what power does: It hides the fact that it has a responsibility for oppressing individuals and groups. It is a tactic which blames those who are the victims of its machinations.

His book is: 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. The problem is not the worker, but the network of social relationships that result in oppressive labor extraction.

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. She argues that medical models of disability are not compatible with her argument. 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. Wieseler, who is an assistant professor in the Department of Philosophy at California State Polytechnic University, Pomona, questions the arrogance and hypocrisy of those who claim to be able to understand the lived experiences of disabled people.

Wieseler offers a solid primer on understanding disability studies and their 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 describe how this distinction might allow us to rethink how the disability concept (disability), brings undeniable focus to injustices in the context of disability research.

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 emphasizes the body as the only source of any potential disadvantages. Those who subscribe to it recommend medical cures, treatments, and methods for normalizing bodies with functional limitations. These include medication, psychiatric treatment, surgical intervention; prosthetics; speech, occupational, and physical therapy. Some characterizationsThis description of the medical model is complemented by the statement that it considers disability to a personal tragedy that warrants sympathy and, in certain 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 is common in how disabled people are depicted in the media.

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 saw the status of disabled people in terms of an oppressed minority. The Union of the Physically Impaired Against Segregation says the following about “disability”:

Disability is a result of our impairments. We are often excluded from society and isolated unnecessarily. Therefore, disabled people are an oppressed segment of society. This analysis shows that low incomes are only one aspect of oppression. It is a result our isolation and segregation at every level of life, including education, work mobility, housing, and so on.

The Union of the Physically Impaired Against Segregation aimed at increasing the economic resources for disabled people. Nevertheless, this organization recognized the fact that poverty among disabled people was intertwined (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 is still very influential among disability activists and theorists in Britain, although some aspects have been adopted elsewhere in 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 one 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 explain how epistemological oppression is understood in the contexts of disability studies and how you conceptualize disabled people and the richness of their knowledge. How can their knowledge transform epistemic forms like arrogance or hegemony?

It is not new that disabled people have been denied epistemic authority over their own lives. bodymindsExperiences. (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 a tendency to place too much emphasis on treating rather than helping people live with disabilities and chronic illnesses.

The demand for epistemic justice continues to be made by disabled people and their allies. 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. These assumptions seem to be against the grain, which is easily apparent in philosophy.

When I first encountered philosophy that made false claims about the lives and abilities of disabled people, it was a shock to me. Philosophers care about truth and only engage in epistemic practices. This lack of knowledge was something I believed could be rectified by engaging in empirical research and hearing the testimonies from disabled people. The problem is much more complex and difficult to fix. Particularly bioethicists are so certain that they know everything about the lives and circumstances of disabled people that it is difficult to believe that anyone can challenge their views. Sometimes they even give lip service to the positions of disability activists/theorists but then contradict them. It is amazing to see the epistemic arrogance. I believe epistemic humility is a prerequisite for the knowledge of disabled persons to make any difference in nondisabled people’s beliefs, such as these bioethicists. It is not enough to be able to see the complexity and richness of this knowledge. It is also necessary to be open to error (i.e., epistemic humility) as well as to value the knowledge of disabled persons.

My thinking about how disabled people are subjected epistemic oppression is heavily dependent on the work of both feminist and feminist theorists. These feminist theorists are interested in how racism, sexism, and epistemic practices. Although I agree that it is important to not confuse how epistemic oppression happens in the contexts of anti-Black racism, ableism (in part because these forms intersect with each other as well), there are many benefits to considering different manifestations.

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 that I often return to in disability theory is that knowledge 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.) In the face of dominant narratives that do not accurately reflect our experiences, we need affirmation from others. We also need to learn from others when our experiences are different. We all have our limitations in terms of what we see and how we understand the world.

There are many concepts that can be used to refer to the knowledge acquired within disability communities. Here are some of the most recent developments. Leah Lakshmi Piepzna–Samarasinha is a self-described disabled and sick 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.

Rosemarie Garland Thomson is a disability theorist 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 people don’t get any education about disability. Recognizing the personal and societal knowledge gaps is a key starting point to being part of the collective project of understanding disability.

To return to the epistemological oppression question, your work draws attention to the gaps in the field of biomedical ethical in relation to its failure to understand disabled persons. When I think of biomedical ethics, I tend not to think about end-of-life care or euthanasia, but I do think about deeper and more probing issues related to disability studies. This could be due to my ignorance. So, what problematic assumptions do you think undergird biomedical ethics vis-à-vis disability studies? What can your critical insights on this issue help health care professionals and teachers of biomedical ethics?

When I began to study bioethics textbooks I noticed that there were common assumptions about disability. There were disagreements on many issues that disproportionately affect disabled people, such as prenatal genetic diagnosis and selective abortion, organ transplantation policies and other forms health care rationing policies, debates about health policy, physician aid in dying, euthanasia, and debates about health insurance policy. 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. These assumptions, while either false or questionable, contribute to the devaluation and disregard for the lives and experiences of those who are most at risk. The bioethics literature tends not to consider disabled people subjects but objects of knowledge.

Many may wonder if it is worth trying to transform bioethics in light of the above problems. I believe that there has been some progress, insofar the increasing number of nondisabled and disabled philosophers whose work was informed by critical disability research challenging ableisms in bioethics. This includes clinical ethics consultations or research, teaching, or any combination of these areas. Jackie Leach Scully highlighted this 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. We are still trying to figure out what this means in some ways. In The Disability Bioethics Reader, These are the criteria Joel Michael Reynolds & I believe are necessary for disability bioethics.

  • a critical relationship to common narratives and “common sense” claims about disability;
  • Theory and practice are rooted in Important Disability scholarship, which focuses on the work and testimony of disabled people and emphasizes participatory models in research and practice.
  • inquiry dedicated to increasing justice and equity in support of people with disabilities.

Disability bioethics is an important part of promoting disability justice. I will discuss it in my answer to your final question.

I have witnessed firsthand how teaching bioethics is able to transform lives of people with disabilities. I have, for example, 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.

These stories from disabled people on their experiences with healthcare show how problematic assumptions can compromise the care they receive. Here are just some examples: That disabled people cannot speak for themselves; and that all patients can hear their names called in the waiting area. 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. These assumptions can lead patients to lose trust, miss their appointments, not receiving adequate sex education and/or reproductive care, and even cause abuse. Even small changes in orientation toward disabled persons and better communication can improve patient experiences and prevent harm. While large structural changes are necessary to combat ableism and expand access to health care for disabled people, there are still actions that can make a difference, such as teaching disability bioethics.

How might disability studies be generative in responding to questions about racialized embodiment within critical philosophy of race? 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. It could be argued that White supremacy views Black bodies (due to their Blackness) in terms of disability. That is, racialized Blackness can be seen as a sign of dysfunctionality, or as a site for aberration.

Before I answer directly to your question, I believe it is important to provide some context about disability studies as well as critical philosophy of race. Although this is changing, there are still exceptions. Disability theorists have tended to ignore race, implicitly focusing on white disabled people’s experiences. Critical race theorists have often focused on race without reference to ability status, which has had the effect of privileging nondisabled people’s experiences. These dynamics are connected, it is worth noting. These dynamics are interrelated. For example, some philosophers and other theorists of colour were likely to be influenced by the stigmatization of disabilities. In addition, let’s face it: analyzing and responding to either ableism or racism is a daunting task. However, there are many instances that show how racism and ableism interact with each others as well with other forms oppression such as sexism.

Eli Clare’s Brilliant Imperfection: Grappling with CureThis book provides powerful examples of how different forms oppression work 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. It is important to recognize that there are different harms. However, it is worth looking at the whole picture.

My research combines insights from critical philosophy, 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. This is not the way to go. 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 contend that phenomenologists of illness or disability have assumed that healthy people are able to 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 don’t believe that philosophers I criticize intentionally did this. Analyses that focus only on one aspect of social identity can be misleading and obscure the role of intersectionality within day-to-day living. (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 is now used in a wider sense to indicate how we are affected by different 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.

My work, as a Black philosopher studying critical philosophical of race, has never been an abstract process. This is because I am Black and have skin in the game. This kind of philosophy can lead to all kinds of dangers, particularly in the form of racist backlash from white people. This raises the issue of epistemological oppression. White philosophers and scholars fail to grasp the ways that their whiteness hinders their understandings of racialization processes, 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 pervasive nature of ableism, I am certain that I have not only failed to display humility, but also failed to give the kind of social justice attention or philosophical energy required to address issues of disability studies, and disabled persons. Could you please speak about how your engagement with disability research intersects with your location in the world as a disabled person?

First, let me say that I was a disabled person for seven years before I considered disability to be political or joined any kind of disability community. Before I got a job at a center of independent living, a non-profit that provides services to people with disabilities, I had no idea of disability activism and theory.

Partly, I went to college to overcome my impairment. I wanted to get a degree to be able to get a job that was compatible with my impairment. I also studied philosophy to escape thinking about my body. I was struggling with internalized ableism and a society that is so hostile to my ability to thrive as a disabled person.

I grew up in a very homogeneous racially and was taught to hate racism by college. I became more interested in the philosophy of embodiment and how they dealt with it. I was hesitant to study philosophy of disability. I was worried about not only bringing attention to my disability, but also about my ability to get a job.

My impairments were noticed by my colleagues and students, regardless of whether or not I brought them up. I taught a unit about thinking critically about disability in an introductory level philosophy class. I also shared some of my personal 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. Although the discipline of philosophy has made some improvements in terms of accessibility (of conferences) and beginning to recognize philosophy on disability as a legitimate field of philosophy, there is still much work to do.

What new institutional or conceptual directions do you believe disability studies should take to continue its fight against ableism, social injustice, and other forms of discrimination?

Disability bioethics should continue to build upon the insights of disability justice, which some call a second wave in disability rights founded on disabled people who identify themselves as queer, transgender, Black, Indigenous and/or peoples of color. The primer on disability justice. Skin, Tooth, and Bone: The Basis of Movement is Our PeopleSins Invalid (a disability justice performance program) states:

Activists and cultural workers in disability justice, as well as organizers and activists for the cause, understand that ablebodied supremacy has been shaped in relation to other systems, domination, and exploitation. The histories of white supremacy as well as ableism are inextricably interwoven, formed in the context colonial conquer and capitalist dominance.

I would highly recommend this primer, as well as Shayda Kafai’s wonderful book, Crip Kinship: The Disability Justice & Art Activism of Sins Invalid. It is crucial for disability bioethics and other areas like philosophy of race, feminist philosophical, fat studies, transphilosophy, aging studies, and animal studies to focus on intersectionality. This was the beginning point. The Disability Bioethics Reader (2022), which Joel Michael Reynolds co-edited. We are thrilled by the way that our contributors have brought these areas together to consider the possibilities for the development disability bioethics. We hope this text will be an excellent introduction to disability biology.

This interview was lightly edited for clarity, length, and clarity.