Dialogues on Disability: Shelley Tremain With Alison Reiheld

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

During the past year, for the fifth year in a row, I conducted landmark interviews with disabled philosophers who are variously situated with respect to disability, race, gender, institutional status, age, culture, nationality, and sexuality and whose philosophical work covers a wide range of specializations and research interests. This fifth-anniversary installment of the series highlights insights and lessons that these philosophers offered the philosophical community, reflecting upon the contributions to philosophy that their interviews have made.

I am delighted that Alison Reiheld, with whom I conducted a fascinating interview in September of 2019, has returned to Dialogues on Disability to assist me with this celebratory anniversary installment of the series, bringing continuity to the series and expanding it in thought-provoking ways.

[Description of photo below: a smiling Alison takes a selfie on a wooden bridge in SIUE Gardens. A body of water as well as trees and grass can be seen in the background of the shot.]

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.

Welcome back to Dialogues on Disability, Alison! I am indebted to you for taking the time to produce this anniversary installment of Dialogues on Disability with me.

Alison, in a moment, you and I will turn to reflect on your interview from September of last year; first, however, I’d like us to consider Adam Cureton’s interview from May 2019, which led off the fifth year of the series.

Recently on BIOPOLITICAL PHILOSOPHY, some discussion ensued in comments about disabled philosophers passing as nondisabled in order to receive the benefits that accrue to nondisabled people, to avoid ableism, and so on. In recent years, disabled philosophers, LBGTQI philosophers, and feminist philosophers (which are of course not mutually exclusive groups) have begun to explore the conceptual and political issues that surround passing as nondisabled, straight, cisgender, and so on. In Adam’s interview, Alison, he talked about how his experiences of passing as nondisabled conditioned his understanding of disability. Among other things, Adam made these remarks about his experiences of passing and the insights that accrued to him from doing so:

I was indeed aware, from a very early age, of the social stigma that comes with being recognized as disabled. I was also somewhat embarrassed by my disability and wanted to be socially accepted by my peers and others. So, strange as it may sound, I decided early on that the best strategy for me was to try to hide my visual impairment and pass as nondisabled. I got very good at doing so, in part by paying close attention to differences between how disabled and nondisabled people typically behave and between how they are typically regarded and treated. I eventually came to recognize that hiding my disability was immature, irrational, and perhaps disrespectful to myself and others.

Alison, what are your thoughts on Adam’s very candid remarks about passing and the self-understanding that it eventually afforded him?

Thank you, Shelley, for this chance to reflect on Adam Cureton’s work and for your patience with me as I’ve adapted to the shifting expectations of my students and institution, as well as my own shifting ability to meet these expectations during life under the COVID-19 pandemic.

Shelley, I’ve been thinking a lot about this issue of “passing” as Cureton nicely lays it out.  Observing the way that some nondisabled people act in order to behave that way reminds me of code-switching and the exercise of power and agency under conditions of oppression. I’d like to explore this.

Shelley, as you know, there is a long and rich literature in the work of African-American thinkers about the motives for passing. These include self-protection and access to privilege, both of which involve moving to, or being perceived as being in, a different position in the power structure. In code-switching, as in passing, the agent uses the audience’s assumptions to create or allow desired impressions of the agent. Black folks who shift between African American Vernacular English (AAVE) and other grammars, depending on audience and setting, are code-switching.

So, perhaps, are disabled folks who sometimes straightforwardly make it clear that they are disabled, and at other times do not. When Cureton describes deliberately mimicking nondisabled behaviors to “pass,” it’s a kind of code-switching. He describes this behavior as immature, irrational, and perhaps disrespectful to others. I think that, as a self-protective measure, this is morally acceptable. I think that, as a means of dealing with different contexts, this is morally acceptable. I think that, if the audience assumes one is a member of a group that one is not, one could choose to let them continue to think that for any number of reasons. Passing, and passing as code-switching in some contexts, can also be a way that otherwise powerless people can gain access to power in unjust systems. This can be selfish. But need not be.

Perhaps, Shelley, what is unethical about passing is a conjunction: that one does it to access privilege/power, even for self-protection, and then leaves other members of one’s group behind, without working to use that power to break the power structure from within. By contrast, passing for self-protection and then ripping aside the veil of passing to lift others up would be at least morally permissible, perhaps even morally required: to some important degree, it manipulates and then rejects complicity. I wonder if Cureton would agree, and I worry that I’m missing something very important about the operation of power and its manipulation from within.

I actually think, Shelley, that Tommy Curry’s interview is extremely relevant to this issue of passing and self-protection.  This passage relates to whether or not one makes oneself palatable in a given context or even opts out of contexts that are untenable:

What is threatening is when a Black male philosopher teaches about Huey P. Newton who attained a Ph. D in Philosophy in 1980 from the University of California, Santa Cruz. Newton wrote about armed self-defense because he was influenced by Robert F. Williams, a veteran and lawyer, who started the Black armed guard. These conversations concerning the justifications of violence against white America are so threatening that white supremacists and a blogger (Dreher) inspired the President of Texas A & M, Michael Young, who in order to save face with his conservative base, issued a statement that condemned my research.

After the alt-right attack, I realized, I guess, that Black scholars should not settle for merely surviving in these racist environments; that we should seek out a world where we can thrive. For a while, I wanted to stay at Texas A & M because it is so close to the city that I’m from in Louisiana. But the threats and marginalization of Black, Brown, and Asian scholars throughout the institution motivated me to look elsewhere. Non-white philosophers and scholars deserve both to have their work respected and to be judged on their merit. It is wrong for Black philosophers to limit the expression of their ideas and arguments because they fear white backlash, racial violence, or ostracism by the profession. 

I would love to hear, Shelley, what you think about Tommy Curry’s ideas, here.

Alison, I think that Tommy’s remarks in this context put into relief the systemic operations of power that philosophers who pass, in whatever way and for whatever reason, enable to persist and foster. In my experience, as a disabled philosopher who has never passed, some philosophers who pass as nondisabled establish public allegiances with nondisabled philosophers who act as gatekeepers and work to exclude disabled philosophers, even when they seem to do otherwise. The presence in philosophy of disabled philosophers (and disabled philosophers of disability especially) who don’t pass challenges and poses threats to both disabled philosophers who pass and nondisabled philosophers, as well as to the institutional structures that enable these philosophers to position themselves as super-ordinate, normal, and legitimate in relation to disabled philosophers.

Against these currents in philosophy, Alison, my interviewees throughout the past year and, indeed, throughout the five years that the series has run, have noted the important role that Dialogues on Disability has served with respect to their own identity, their philosophical inquiries, and the way that critical work on disability is situated in the discipline and profession. Lissa Skitolsky, for instance, emphasized the significance of these constitutive relations at the outset of her Dialogues on Disability interview from July of last year.   

In a recent BIOPOLITICAL PHILOSOPHY post, Alison, I was concerned to show how discourse on the COVID-19 pandemic has naturalized the vulnerability that a variety of marginalized and disenfranchised social groups experience. First Nations people comprise one social group that is increasingly vulnerableized by the pandemic due to lack of medical resources, poverty, the apparatus of disability and colonial trauma, distrust of the medical profession, and even lack of access to clean water. Forms of colonial trauma and disenfranchisement of First Nations people are central to Skitolsky’s research on genocide. In one context, Skitolsky, responding to a question about the Final Report of the National Inquiry into Missing and Murdered Indigenous Women and Girls, said:

It’s important to remember that genocide is not akin to mass murder, but instead defined by the U.N. Convention and international law as the effort to “destroy” a population through a system of violence that attacks the social vitality of an entire community.  For this reason, the term cultural genocide is redundant and incoherent, given the aim of genocide to destroy entire communities through attacking the social, cultural, and intergenerational ties of its members. Even more—as suggested by the Report—the term serves to minimize the harms inflicted through the residential schools as somehow “less than” fully genocidal. I am also really impressed that the Final Report of the National Inquiry mentions the epistemic and political problem of characterizing the harms inflicted against Indigenous groups in Eurocentric terms based on norms of international law that were explicitly formed to exclude the testimony and perspective of these groups. 

… I guess my larger concern is that the Report itself will take the place of changing and creating policies meant to address and arrest the genocidal violence against Indigenous women and girls or will lead only to the creation of new commissions and new inquiries that, ultimately, do not lead to structural change. I have an equally pressing concern that the specific focus on the genocidal violence against Indigenous women and girls will serve to defer the problem of systemic violence inflicted against Indigenous peoples as such.

Alison, how do you understand the relation between the genocide of First Nations that Skitolsky describes and the way that First Nations are increasingly vulnerableized by the social circumstances of this pandemic?

Thank you for this connection, Shelley, and for your response to the issue of passing; we certainly cannot move forward without at least some disabled philosophers openly identifying as such. Dialogues on Disability makes space for that identification powerfully.

Shelley, I think the issue of systematically imposed vulnerability, as suggested by Skitolsky, could not be more important during this pandemic. We see now—as with tornados, forest fires, floods, and more—the impact of “natural” non-human crises on people whose preservation as a group is not a priority for society, whose loss has been considered acceptable.

This applies when we are talking about First Nations and other indigenous peoples who have been rendered vulnerable by the exercise of settler-colonial power in the ways you, Shelley, and Skitolsky describe. It also applies when we are talking about disabled folks and Black Americans rendered vulnerable by systemic ableism, racism, and economic exploitation that raise risks both of exposure to COVID-19 and of severe disease from it (until April 10, every confirmed COVID-19 death in my city of St. Louis has been a black person). These folks not only are rendered vulnerable by social institutions generally, but particularly by the fierce and merciless way that power operates on what public health folks call social determinants of health. Socioeconomic status, neighborhood and physical environment, education, employment, and social support networks are all widely acknowledged social determinants of health. They are also inseparable from networks of power and their attendant hierarchies of opportunity and social value, such as settler-colonial, ableist, patriarchal, and racist systems. COVID-19 will hit hardest those communities that are most vulnerable, that have been rendered most vulnerable. It ain’t right. But it is already so.

Before we move on, Shelley, I’d like to address Skitolsky’s point about stopping our work with the report, as though that’s the end of it.
I’ve argued that remembering and forgetting are moral matters, both individually and collectively. One aspect of memory that Skitolsky’s point raises is whether we allow ourselves to sit as satisfied as cats for having met our obligations of memory with reports without going on, in turn, to satisfy the obligations that right remembering engenders. I despair, sometimes. Remembering rightly how social determinants of health have developed is necessary, but not sufficient, for their remedy. Our moral failure to act contributes to the greater burden of COVID-19 disease on these communities.

Sadly, Shelley, we must leave this rich topic. Happily, we turn now to your interview with Joe Rachiele in which he discusses seeking treatment for severe post-concussion headaches:

He didn’t seem to think I was lying. Rather, he seemed to think that I was conjuring the symptoms because of anxiety and that they lacked any other physical cause.

At the same time, he was the first doctor who treated my headache symptoms with first-line headache medications. Other doctors had under-treated my headache, assuring me that it would go away with time. Since post-concussion syndrome almost always heals with time, the doctors seemed content to let it run its course, without trying to help me function. I was grateful to have found a doctor who gave me serious medications, even if he thought my condition wasn’t serious.

He ordered many tests and tried to use them to convince me that I was imagining things. All the standard diagnostic tests came back normal and he thought that this result was a sign that my brain was “normal” and healthy. But these tests do not show the microscopic injury from concussions or the functional problems that constitute chronic pain. From the moment that I stepped into his office, he tried to convince me that my symptoms were psychosomatic. It was entirely mysterious where this conviction of his came from!

What Joe reports here is something that I see regularly in the bioethics literature that centers patient experiences: a patient whose “complaint”/”condition” is taken seriously in one sense, but also minimized in other very important ways. Shelley, what do you think this reveals about the clinic?

Alison, the last cited remarks from Joe’s important interview reminded me of a statement that you made in September’s installment of the series. In the context of your interview, you noted this: “Doctors and nurses who weigh me or see my body talk to me about ‘starting an exercise routine,’ implying that I do not already have one; that if I had one, I would not be as I am.” Both Joe’s remarks and your observation in this context demonstrate the limitations and constraints of medicalized understandings of fatness and disability, epistemically, philosophically, subjectively, and politically. One of the primary tasks of philosophers of disability is to articulate these limitations and constraints, including their deleterious effects for philosophical practice, public policy, and cultural representation, as well as their detrimental lived consequences for the self-respect and self-esteem of disabled people themselves.

Indeed, in your interview, Alison, you did an excellent job of drawing out how philosophical conceptions, cultural representations, and social policy are inextricably entwined and mutually constitutive. In one place in the interview, you said:

…disability models that helped me to make the most sense of what happens to fat folks are the models that conceive disability as something imposed by a power structure and structure of values that result in behaviors and built environments that exclude folks with certain traits, thereby disabling them. A number of models take variations of this approach, including various social constructivist models and other models that focus on analyses of power and oppression. Working through them, I began to see that my defense of my fat self’s worth with appeals to my fitness was much like my defense of my nerd self’s worth with appeals to my intellect: I was gaining worth by tapping into systems of power and valuation which, ultimately, would continue to devalue me and people like me.

I was especially interested, Alison, in how you drew attention to the mutually reinforcing and constitutive relation between conceptions of fatness, disability, and your self-worth, proceeding to address how the combination of these phenomena led you to deepen and expand your ideas about accessibility and the social construction of the apparatuses of fatness and disability. Where do you situate yourself with respect to these concerns now?

Thank you, Shelley. This set of insights has made me cautious, and instilled intellectual humility, about attempts to prove a devalued person has value. I find myself always questioning what system of value is being deployed in such a move. And whether that system of value is, itself, pernicious. I’m working to develop the habit of a “record scratch sound” in my mind—the sound made when an old vinyl record playing smoothly is abruptly stopped or reversed in direction—whenever I encounter or attempt to develop such a proof of value and worth. This is not to say that such proofs are not possible, only that there are good and bad habits in thinking about what gives persons value and how we raise ourselves up. Perhaps we can connect this to our earlier topic of the phenomenon of passing: that the worry with passing is that it claws back status by endorsing—or at least leaving in place—unjust structures of value, even if one passes in order to survive those structures of value. Survival is a kind of rebuke. But is it enough?

Thinking about these systems of valuation brings to mind part of your interview with Kelly Oliver, Shelley. Oliver talks about her many experiences with discrimination in academia, from profs who would call on her and then tell her to stop talking, to one who offered, without solicitation, to write a recommendation that she later learned was very negative. Edward Said’s and Nancy Fraser’s subsequent positive responses to Oliver’s work were influential in supporting her career. This set of events reveals a great deal about who is thought of as “doing philosophy” and who thinks of them in this way. I’d like to connect this observation to Oliver’s discussion of her migraines, especially with respect to your prior interview with Joe Rachiele. Oliver said:

As I got older, I found it more and more difficult to hide my headaches. The pain was debilitating and I simply couldn’t power through any more. Reactions to my confessing to having chronic migraine varied, but no one seemed to understand. Administrators ignored me when I declined taking on more service, even when I had a letter from my neurologist. Even some of my feminist colleagues belittled my migraines….

I very much appreciate that Joe talked about the stigma associated with migraine headaches. The studies that he mentioned confirm my own experience of migraines, that is, how they are not taken seriously. The work that he cited also explains why I feel shame and embarrassment that I have headaches, since the stigma revolves around something like female hysteria and psychosomatic symptoms that are “all in your head” and, therefore, your own fault…

My colleagues don’t understand… that chronic migraine is debilitating… I worry that some of my colleagues think I’m just a bad citizen. 

I know other philosophers with migraines who find it difficult to formulate, much less communicate, complex thoughts when the worst of the pain hits. Furthermore, pain is exhausting. I wonder, Shelley, if there’s more, here, than the way that institutional structures and professional expectations are notoriously unaccommodating to all but a narrow range of body-minds. I wonder, how do migraine, chronic pain, and other conditions like post-concussion syndrome that make it difficult to do typical philosophical cognitive labor affect our image of “what a philosopher looks like” and what thinking requires, and of who can be a philosopher?

Alison, I’m concerned to point out that any description of what a philosopher does, what philosophical thinking requires, and who counts as a philosopher will always be value laden. Given that philosophical styles of thinking and reasoning are never outside of disciplinary and other norms about reasoning, coherence, clarity, lucidity, and so on, the cognitive practices of many disabled people will always already be deemed aberrant or defective, abnormal and pathological. As you suggest, Alison, rigid and exclusionary ideas about how philosophy is done and by whom continue to prevail in philosophy.

As various interviewees during the past five years of the series have shown, furthermore, rigid, ableist, and exclusionary ideas about who counts as a viable and valuable citizen, neighbour, fellow traveller, student, and teacher, continue to narrowly circumscribe the lives of disabled people, Alison. In her interview, Kristina Lebedeva addressed the social exclusion that disabled people confront thus:

…the social abandonment of disabled people is something that I think about a lot. Even though I did not address disability explicitly in my dissertation, this very problem informed it thoroughly.

I am still waiting for the day when this form of social abandonment will become a scandal, the way, say, racism and sexism are scandals. It actually struck me quite recently that no one, aside from my husband, ever asks me, “How was your day?” 

Alison, when I re-read these remarks from Kristina’s interview as you and I put together this installment, I immediately thought about COVID-19 and the seniors and disabled people who have been abandoned in institutions, who confront homelessness, and who urgently need various kinds of human connection during this pandemic. What are your thoughts on Kristina’s comments in this context?

Kristina Lebedeva’s comments really hit home, Shelley. Social expectations are built around certain capacities for social interaction and around clear social roles. In mainstream society, the social roles available to people with non-standard body-minds are very limited. Sadly, it is not expected that society should flex and adjust its expectations to people’s capacities. Many of my friends who have dealt with acquired disabilities report the pain of rupture that occurs within all their relationships, from the smallest of exchanges with cashiers that no longer go as smoothly as they once did, to the most intimate of friendships and romantic partnerships. The pain of not being able to form these kinds of bonds smoothly with nondisabled folks, and the rarity of these “normal” interactions, is experienced by many disabled folks from their earliest days. We know also that this happens with age: it is common in American society to talk about a fear of being “warehoused” in nursing homes “until we die”, rather than held in personhood through caring relations while we still live. In my family, parents joke with children that they hope the kids “pick out a good home for us.” We laugh to leaven the fear of social abandonment.

Shelley, it constitutes both irony and indictment that people whose need for the support of others is most acute are the people least likely to have it.  This state of affairs extends from persons in need of care to caregivers, who themselves are often socially isolated as a dyad. What should be a large network of mutual aid becomes small isolated constellations of mutual aid, at best, struggling to get by.

It’s a truism that during times of great stress, already-strained bonds of social connection thin and stretch and even break. Shelley, we know that this happens with background conditions of vulnerability that are always with us. It’s no surprise that, with new stresses from pandemic response measures like social distancing and stay-at-home orders, the thinnest of bonds are tested to destruction. Several weeks ago, the news told of Spanish and Italian long-term care institutions that simply could not even keep track of who was still living. Now, a similar situation is happening in the UK and the United States, where the course of the disease in people who are socially isolated and devalued by the carceral state is also gaining visibility.

Shelley, even where care settings have not been systematically starved of resources and where folks have rich social support networks, reducing exposure to COVID-19 requires isolation. Those who need social support—which, to be honest, really is all of us—are less likely to have it under stay-at-home orders and social distancing (it’s right there in the term, after all). We are all experiencing this rupture of networks, becoming part of smaller, more isolated constellations. If our best selves win out, we will remember this and strengthen those networks for all.

This issue of difference leading to social isolation, and ruptured social bonds, comes out beautifully in the interview that you did, Shelley, with Raymond Aldred, who said:

..the phenomena of mental illness and the experiences of people with mental illnesses are left out of discussions of love. That is, philosophers of love usually try to develop their theories about romantic relationships around what they think “normal” lovers and beloveds are like in these relationships. People who deviate from what counts as normal are either left out of such theories or considered exceptions to the norm.

…In one of my papers, for example, I point out that, in the context of settler colonialism, Indigenous people have been punished, controlled, institutionalized, and disciplined because their relationships and sexual activity have deviated from what settlers think love and sex are and should be.

Are there ways of relating and loving that disabled folks have developed which are looked down upon by nondisabled folks, Shelley? What more might we have to say about this issue, generally, of what happens when relationships and sexual activity deviate from what the dominant modes of love and sex are?

Alison, disabled activists and writers have long pointed out that disabled people are generally perceived to be asexual, to not engage in sex, and to lack sexual desire. Such uninformed assumptions are a vital element of the constitution of disabled people as Other, abnormal, and less than fully human. Yet both the idea that disabled people lack a sexuality and the belief that sexuality is an intrinsic characteristic of human beings are relatively recent constructions in human history and are culturally situated, as Raymond’s remarks about Indigenous sex and love underscore.

Notwithstanding their contingency, these constructions shape our subjectivities, identities, values, and perspectives, as well as have looping effects for the category of disability itself. Like many nondisabled people, many disabled people feel that they are “naturally” sexual beings, have a “natural” sexuality, “natural” desires, and so on. Because of widespread inaccessibility, ableist beliefs and attitudes, lack of money, social isolation, and so on, Alison, the opportunities for disabled people to engage in sex, casual or otherwise, and to meet prospective partners for love and friendship can be quite limited.

Nevertheless, Alison, disabled people have resisted the ways that they have been excluded from these aspects of contemporary social existence by publishing books and articles about disability and sex, training personal attendants to assist them with sexual practices, politically organizing for access to venues such as bars and nightclubs, fantasizing collectively, and creating cultural imagery of disabled people and sex.

Alison, access to sex is now widely regarded as an integral component of what a transformative conception of justice for disabled people demands, a conception of justice that isn’t circumscribed by ideas about distribution, but rather is inextricable from and incorporates (among other things) anti-racist work, queer organizing, efforts to end incarceration, anti-poverty work, and goals of food security, as well as the production of new languages and inscriptions in which to articulate this conception and new representations with which to convey it.

In their interview in January of this year, Alison, Emily R. Douglas talked about the importance for disabled people of new languages and descriptions, languages and descriptions that go beyond medical diagnoses that both constrain and produce subjects as medicalized in particular ways. In one place, they said:

In some ways, diagnoses have saved my life: they have afforded me access to care, access to certain accommodations in the academic system, and even access to another language to talk about my experiences. At the same time, the diagnoses of the DSM and associated texts can feel like a trap, can make one feel part of a taxonomy, are depersonalizing, can make one feel trapped within a certain notion of what one ought to be. In other words, diagnoses can be like a double-edged sword—both necessary and helpful in some ways and harmful in other ways. One of the diagnoses that I received in the last couple of years falls under a cluster of diagnoses that are severely stigmatized, adding another complexity: I often do not disclose this diagnosis for fear of judgment. Indeed, many remaining diagnoses carry the traces of sexism, gender norms, and very clear ableism. It is a difficult thing to take up a diagnosis that the medical profession, in general, thinks is an objective truth, while knowing very well the political inflections of the diagnosis. There is also a certain model of a rational and autonomous individual which carries through in our ideas of what disorder is.

Certainly, my feminist Foucauldian education as an undergraduate did not make things easier. In addition to giving me a new way to talk about these things—namely madness, abnormality, and so on—this education made me increasingly aware of the ways in which my subjectivity is constructed through psychiatric power; that is, such processes create a person with diagnosis X in a similar way to what Foucault described as the creation of the homosexual: a new character type. We can get caught up in and internalize these character types.

Alison, how, in your view, does Emily’s understanding of diagnoses and their search for a new language of embodiment subvert the dominant discourse of bioethics?

Shelley, this question goes to the heart of one of my abiding concerns with bioethics and medicine: the medical claim to an ideal theory of health and disease, value-free and independent of social norms, is twin to the bioethical claim that it is a harm to not pursue health as a priority. Patients who do not pursue medicalized notions of health as their primary value—who may have this is a value but who rank-order it differently, or who do not even share this notion of health—will tend to be labeled “bad patients,” even “noncompliant.” Health care providers and bioethicists who support such patients’ choices may well be labeled as “bad doctors,” “bad nurses,” and even “bad bioethicists.”

Consider, Shelley, what happens to fat patients who do not have weight loss as a priority, and how the medical and bioethics establishment view providers and bioethicists who support such patients. Consider what happens to deaf persons who do not wish to cure their deafness, or who either seek or are willing to have deaf children. The power of medicine and bioethics to pronounce on what kinds of lives are worth living is enormous. As Emily R. Douglas has observed (and, earlier, Joe Rachiele and Kelly Oliver) medicine has power not only to render persons vulnerable—as with the historical use of psychiatric diagnoses to cast gay persons as pathologically ill—but also to convert a person’s vulnerability into a moral call for aid and rescue, as with the medicalization of alcoholism and other substance use disorders. When a person’s needs fit into the frame of medicine, the apparatus of medicine can be brought to bear not only to aid them but to compel others to aid them, even as it works its reductivism on their very persons.

Shelley, we have granted medicine the power to provide medical legitimation of a person’s claim to resources such as health care, personal aides, long-term care, and more; we can grant that power to other authorities using other criteria. We have granted bioethics the power to legitimate particular narrow conceptions of idealized agents and idealized autonomy; we can expand these narrow conceptions to include broader notions of agency and autonomy. Douglas rightly raises all of these tightly interlaced issues in the passage you selected.

I’d like to highlight part of Cecilea Mun’s interview that deals with agency, Shelley. Mun describes the compromises that ableism and the student-as-consumer model have attempted to force on her teaching, and how she has resisted these changes; how even variations of teaching that seem to be autonomous, such as paid tutoring, are unsustainable because they reinforce systemic inequalities. But Mun reveals a kind of hopeful agency, dignity, and integrity when she says:

One reason why I became an academic was to make a difference, and part of that meant making a difference by doing what I could in order to succeed as a disabled woman of color… I still self-identify as a disabled applicant in all of my applications…. If philosophy and academia is not willing to accept me as I am and provide me with the conditions for me to flourish, then it is not somewhere I need to belong, and it is not somewhere in which I can make a difference…

…although I have yet to give up on my faith in philosophers and academic institutions altogether, I’ve recently started to simultaneously pursue more than one kind of life as an alternative to academic life. I find it necessary to do so given my precarious situation. I have back-up plans for my back-up plans. One plan is a life in research and public policy. I think that I could be really happy living this kind of life. Another kind of life is a life in South Korea teaching English or perhaps doing something else there. I think I would be very happy with this kind of life too. In any case, my life will be a happy life, primarily because I will make it so… I don’t make unreasonable sacrifices. Sacrificing my well-being and happiness so that I can be an academic is an unreasonable sacrifice, and I refuse to do it.

What value, Shelley, is there in this kind of internal stance, this agency directed relentlessly at making one’s life a happy life?

Alison, I’m glad that you highlighted this passage from Cecilea’s interview. I greatly admire the forthright way in which Cecilea articulates the circumstances of precarious employment in philosophy and academia more generally, especially for untenured underrepresented minority faculty. Cecilea knows that her choices and possibilities comprise an institutionally constrained agency, an agency that is externally circumscribed within racist, ableist, and other apparatuses of power. She sums up the imposition of these constraints in this way:

My precariousness as a disabled woman of color in the academic job market is not that I would not be able to find a job, but more so that my pursuit for an academic position that would allow me to flourish is not very probable regardless of what I achieve as an academic….I am realizing that regardless of my publication record and how much I contribute to philosophy as a discipline, the cards have been, and always will be, stacked against me. Academia is racist, classist, ageist, and ableist, and philosophy is racist, classist, ageist, and ableist…. To refuse to admit this fact is to simply reinforce it. (Mun’s emphasis)

Cecilea’s remarks in this context need no exegesis or cursory summary, Alison. Her remarks speak volumes. Like Cecilea, I don’t understand how nondisabled white philosophers can repeatedly read such remarks and continue to conduct business as usual. Yet they do. Indeed, I have often wondered how philosophers reconcile the fact that they read BIOPOLITICAL PHILOSOPHY and evidently learn from me and other disabled or otherwise marginalized philosophers, yet continue to withhold adequate employment and permanent positions from us. This state of affairs seems precisely like the kind of exploitation that Cecilea addresses in her interview.

In his interview, that is, in the last interview of the past year, Karl Viertel, who feels compelled not to publicly disclose his identity, also addressed the situation of untenured philosophers and the urgent need for institutional change. Toward the end of his interview, Alison, Karl said:

I have worked as an accountant and in the non-profit world and have a lot of experience outside of the academy. I’ve found nothing there that serves as a substitute for philosophy. We need to make cases like this part of the narrative as well: the system can be broken and awful, and there can be people who want to be there anyway. In other words, I think that this prevailing narrative serves as a palliative for tenure-line faculty and administrators.  Rather than put in the real work to make sure that philosophers who want a place in the academy can find one, tenure-line philosophy faculty and administrators tell these kinds of stories in order to make themselves feel good about the fact that some deserving philosophers don’t make it. I think that there needs to be real pressure to get people in our field to think seriously about the way that they are limiting other philosophers.

What, in your view, is the take-away message from Karl’s remarks, Alison?

Shelley, when I was Director of Women’s Studies at SIUE, I would typically sign my e-mails to program faculty and students with the salutation “There’s work to be done. Let’s get to work.” In the face of injustice, complacency is not an option; solidarity isn’t for giving in to the status quo. I see a strong parallel between what Karl Viertel says about the possibility of finding value in philosophy, as broken and awful as it is, and the desire so many of us have to eke out a flourishing life despite the brokenness and awfulness of many, perhaps all, human societies.

The idea that this seeming paradox is a palliative also applies in both instances: for instance, some people think that the capacity of oppressed folks to find joy even under oppression is an indication that things are not so bad and that we need not change that larger system. How can there be misogynoir that needs addressing if there’s such a thing as Black Girl Magic, someone might say; surely transphobia isn’t such a problem if there’s still Trans Joy. Thus, we must remind these folks that a state of affairs is not made wrong only by abject misery. Viertel is pointing out that the mere possibility of comfort, joy, and value are often taken as a sign that circumstances are not bad enough to require further remedy.

If circumstances are “good enough,” and change will be difficult, it is indeed tempting to say that no further change is really required, Shelley. But of course, the folks saying this kind of thing are most often the people for whom change would be most difficult: such change would require them to give up the hierarchy that advantages them, because they very much want it to be the case that things are good enough for all because things are good enough for them. We cannot afford to pat ourselves on the back for not yet having driven every vulnerable person out of philosophy, and leave it at that.

Shelley, I won’t lie: doing better will be difficult. In philosophy, it will require relentless attention to educational opportunities from pre-school through graduate school, to the job expectations used to craft position descriptions, to the processes and discussions of hiring committees, to what topics and methods count as philosophy and which modes of cognition we see as philosophical, to the way we retain and promote faculty, to the very notion of “fit” between a job candidate and a department. Even if we dedicate ourselves only to these features—rather than also to innumerable others such as family and medical leave policies that make minority philosophers more vulnerable than their more privileged peerswe will find this work exhausting. It requires that we be willing to poke and prod our colleagues, to call them out and to call them in, and to respond well to being called out and called in, ourselves. We will have to trade off to give each other breaks in this work, as the best social justice labor does. Because this will be ongoing work.

This apparent dilemma doesn’t mean we won’t make progress: we can never hope to achieve a utopia, but we can reach what I sometimes jokingly tell my students is a “bettertopia.”  In her article “Perpetual Struggle,” Shelley, Kate Norlock reminds us that every generation must be taught right from wrong, anew. An appropriate ethic for living with this heavy knowledge that our struggles are ongoing can include, Norlock says, resisting evils, improving lives, fostering resilience, and “even cheer.”  Cheer and pleasure and relationships and the possibility of joy and the value of philosophy even under broken conditions aren’t reasons not to do the work. They’re reasons to do the work, and do it better. There’s work to be done. Let’s get to work.

Shelley, thank you for the chance to do this work, here, with you and, by extension, with all the folks you’ve interviewed over this past year.

Alison, your remarks constitute a potentially revolutionary note with which to end this fifth anniversary installment of Dialogues on Disability. The past year of the series has, like previous years, presented the philosophical community with important marginalized perspectives, pertinent information, new contestations, and possibilities for transformation. In short, every one of the interviews from the past year offers significant contributions to the archive of Dialogues on Disability.

I want to express my sincere appreciation to you, Alison, for collaborating with me on the production and preparation of this anniversary installment. Your insights and analyses breathe new life into the past year’s interviews and have reminded us of the tremendous richness of the interviews that comprise the Dialogues on Disability series in its entirety. I am very grateful for your ongoing support of both the series and the work of BIOPOLITICAL PHILOSOPHY in general.

I also want to convey my deepest thanks to all of my interviewees from the past year who shared with us their experiences and knowledges. Finally, let me end this anniversary installment with thanks to everyone who has tuned in to Dialogues on Disability during the five years in which the series has thus far run.

Readers/listeners are invited to use the Comments section below to respond to our remarks, ask questions about the interviews we’ve highlighted, and so on. Comments will be moderated. As always, although signed comments are encouraged and preferred, anonymous comments may be permitted.


Please join me here again on Wednesday, May 20th at 8 a.m. ET for the thirty-eighth installment of the Dialogues on Disability series and, indeed, on every third Wednesday of the months ahead. I have a fabulous line-up of interviews planned. If you would like to nominate someone to be interviewed (self-nominations are welcomed), please feel free to write me at s.tremain@yahoo.ca. I prioritize diversity with respect to disability, class, race, gender, institutional status, nationality, culture, age, and sexuality in my selection of interviewees and my scheduling of interviews.

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