Dialogues on Disability: Shelley Tremain Interviews Kristina Lebedeva

Hello, I’m Shelley Tremain and I’d like to welcome you to the fifty-sixth installment of Dialogues on Disability, the series of interviews that I am 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.

I acknowledge that the land on which I sit to conduct these interviews is the traditional territory of the Haudenosaunee and Anishnaabeg, covered by the Upper Canada Treaties and directly adjacent to Haldiman Treaty territory. I offer these interviews with respect and in the spirit of reconciliation.

My guest today is Kristina Lebedeva. Kristina was born and raised in Russia, arriving in the U.S.A. in 2000 and eventually defending a dissertation in philosophy at DePaul University. Kristina’s areas of interest are trauma studies, ethics, the question of evil, and phenomenology. At present, Kristina works as a private tutor and spends her time as a performer/storyteller and digital artist.

Welcome to Dialogues on Disability, Kristina! You were home-schooled in your country of origin, Russia, and initially majored in Japanese Studies, eventually shifting to philosophy. Please describe your educational history and why you made the shift to philosophy.

Thank you kindly! We couldn’t afford university when we first moved to the States, so I went to a community college for a while. At college, I began to study the Japanese language, which was exciting, since I already knew quite a bit about Japanese literature. I was also one of the few straight-A students in that series of courses. When I transferred to DePaul University, however, I found the language classes to be exceptionally unchallenging and downright boring.

I decided to take an upper-level philosophy class to meet a requirement and it blew my mind. It was everything that I was looking for: challenging, intellectually exhilarating, and engaging. I wanted a vocation where I could think and the philosophy program offered me exactly that. I changed my major within a month. I subsequently earned my M.A. and Ph.D. in philosophy. I’m one of the first disabled Russian women to ever earn this title.

At sixteen, you were hospitalized and your mother, who is a doctor, was told that your life “was not worth saving.” Please describe the circumstances surrounding this statement. What are your thoughts when you encounter this conviction either implicitly or explicitly in bioethics and other philosophy texts?

My condition, juvenile rheumatoid arthritis (JRA), is auto-immune and, if triggered by the flu, the illness spreads like wildfire pretty much overnight. This is the fire that refuses to be extinguished, perhaps because my form of JRA is extremely severe and rare, to the point where not a single doctor that I have visited has seen a case this severe. And this is exactly what had happened. I had the flu and then my fever started spiking through the roof. Nothing worked. I was bedridden, burning up inside night and day. By the time that I was taken to the hospital, the fever was causing me to have hallucinations.

I remember that I was given antibiotics and anti-virals. A few days later, I spent some time in the ICU. Then I started to get better. I was on so many medications that my long blond hair began to fall out and I had to cut it. I still remember our green hardwood floor covered in my once-beautiful hair.

In order to contextualize that doctor’s words, you have to understand the physical and social reality that my mom and I faced. We lived on the fifth floor of a building without an elevator and I was home-schooled, since no academic institution tolerated a disabled student in its midst. My mom was a single parent, worked full-time, and my grandmother looked after me during the day. My illness was too rare to even be recognized by the state. So, while the children with more common conditions did receive somewhat decent benefits, we got a whole lot of nothing. On paper, my illness did not exist. I remember a New Year’s event for disabled kids and their parents, organized by the city, during which, as these kids opened presents, some of the parents told my mom about the support that they were getting. We never attended such events again.

Now, in the absence of an elevator, my mom, a very attractive, petite, and fiercely proud woman, had to carry me up and down five flights of long, steep stairs. She took me to concerts and we went to the Black Sea almost every summer. This kind of vacation was one thing that she did get through her work. As I got older, she bought me books whenever she could, as well as makeup and trendy clothes. Within my small family circle, I wasn’t a less-than. She taught me to hold my head high, even as local kids were hurling insults at me whenever I was outside.

We didn’t have a wheelchair, so we had to use a stroller, which only added to the cruel merriment of those kids. This predicament is something Frantz Fanon wrote about. The black man, he argued, does not experience trauma in childhood. In fact, he isn’t aware of things being harsh and off-kilter as long as he remains within his community. He is first lacerated when he ventures into the world of the white man. The trauma of the black man happens out in the open; it has nothing to do with Freudian repression (I’m very critical of psychoanalysis). Likewise, my trauma took place in broad daylight.

I was a slow learner, but I did learn. The world would deny me the basic company of fellow human beings. More importantly, I understood that the world wanted to beat me down and wanted me to stay down. So, I had to fight back and learn, and learn fast.

But the thing is, my mom was an exception and thus some people, in earnest, called her a saint. The parents of other disabled children rarely brought them outside, let alone travel with them in a country of endless stairs and insurmountable curb cuts, where disabled people were prisoners of architecture. As I learned later, my mom’s colleagues would say to her: “Why do you bother getting her nice clothes and taking her places? Leave her at home. She wouldn’t know any better.” This sentiment was the prevailing thinking.

So, it’s a simple, but hard, truth that it took the unimaginable efforts of one relentlessly fierce individual, fueled by the love that she had for her broken-doll daughter, for me to survive and eventually become the strong-willed, ambitious, proud woman that I am.

In the words of the Russian writer Ruben Gallego, “I’m a hero. It’s easy to be a hero. If you don’t have hands or feet, you’re either a hero or dead.” Well, I was the only daughter of a hero. My biological father left us shortly after I got sick. It took one deadly determined person to go against the state, the doctors and their false prophecies about my life expectancy, and the societal imperative to let disabled people live out their days imprisoned in typically small apartments, separated from the world by the cruelty of steep stairs.

To recall Hannah Arendt’s words,

There exists in our society a widespread fear of judging that has nothing whatever to do with the biblical “Judge not, that ye be not judged,” and if this fear speaks in terms of “casting the first stone,” it takes this word in vain. For behind the unwillingness to judge lurks the suspicion that no one is a free agent, and hence the doubt that anyone is responsible or could be expected to answer for what he has done. The moment moral issues are raised, even in passing, he who raises them will be confronted with this frightful lack of self-confidence and hence of pride, and also with a kind of mock-modesty that in saying, Who am I to judge? actually means We’re all alike, equally bad, and those who try, or pretend that they try, to remain halfway decent are either saints or hypocrites, and in either case should leave us alone.

My mom had enough pride to not be afraid to judge and to do better than others. Once she had decided that I deserved a better life, she acted on that conviction, no matter the cost. She said that she’d get me out of the country and there was so much determination in her voice that the near-impossibility of this task—we didn’t qualify as refugees, since the kind of discrimination that we were facing is outside the Geneva Convention purview and language, my mom spoke no English, and we had no relatives abroad—never even entered the picture. In fact, I do not remember a single moment of despair or doubt. Needless to say, my mother was well aware of my intellectual curiosity and thus it was regarded as a given that I’d get a higher education, which would’ve been absolutely impossible in Russia. My education had to be elsewhere.

She did manage to keep her promise. I cannot begin to tell you what kind of odds we were up against, accompanied by the snickering of the neighbors and colleagues, “Going to America, huh?” But she did it and I helped as much as I could, since I did speak some English.

Thanks to her, I, too, developed an acute sense of pride and mental autonomy. I’ve never been afraid to judge. I’ve also long been known to “go against the grain” and “fight against what’s bad,” as people who know me have remarked on occasion. Old-fashioned notions such as decency, loyalty, and honor have been part of our lives, for as long as I can remember. They are the hinges of our psyches.

It seems that almost every Continental philosopher did their part in dismantling what they consider to be the specter of subjectivity. I do understand why, with a view to the highly problematic Cartesian dualism. But this, what my mom did for decades, was pure subjectivity, fire and blood, the kind of subjectivity that clashes with the world and sometimes, only sometimes, comes out quietly victorious. I think we tend to forget that not only are concepts such as subjectivity, self-governance, individualism, and so on historically and culturally situated; so, too, are their critiques. We also forget, all too quickly, that some concepts can keep us from dying. Here I am also thinking of Jean Amery’s essay on intellectuals and Auschwitz in At the Mind’s Limits: Contemplations by a Survivor on Auschwitz and its Realities.  

I believe that I’ve earned my right to judge. It’s a survival thing. The good object and the bad object, according to Melanie Klein. When the good breast stops giving, it becomes dreaded, predatory, bad. As the child matures, it learns to synthesize and now it experiences the good and the bad as aspects of the same person or thing. The lavish milky breast finally becomes one. But what if we haven’t really learned to synthesize? Perhaps we ought not to. “Do you mean the sky sinks into us like the point of a needle?” asks Maurice Blanchot. This point of a needle rips through the shades of moral grayness. The good and the bad, since time immemorial, guiding us through survival, physical and mental.

With respect to what lives are worth saving or living, I don’t think there’s a cut-and-dry answer. I do not know what I would do if I had a child whose life consisted of pain alone, who, unaware of their surroundings, lived in the realm of silence and darkness, to use Werner Herzog’s words, where brute physical suffering reigned supreme. There are too many variables here for me to formulate an unequivocal answer.

I do believe, though, that decisions of this kind should never be undertaken by doctors or parents alone. They must, somehow, be made communally. I also think that if there’s even a slim chance that a disabled person’s life can transition from dying embers to life-affirming flame, we ought to do everything that we can to make this happen. For example, my life expectancy was only a few years, yet here I am, the beggar queen and the hero without honor. So, what I am trying to say is that every situation is singular, any whiff of dogmatism about decisions in this regard worries me a great deal.

Your dissertation concentrated on the temporality of suffering. The term suffering is of course contested within recent and emerging critical disability theory and philosophy of disability. Please describe the thesis of this research and the central arguments that you advanced in support of it.

Let me begin with your first question. I follow Adi Ophir’s definition of suffering, which is, “the duration of the encounter with the unbearable.” It is the unbearable from which we cannot disengage. In working with this definition, I wanted, among other things, to challenge and perhaps, ultimately, dismantle the extremely pervasive notion of pain as incommunicable, singular, closed to understanding.

In my dissertation, entitled In the Presence of Suffering: Toward a New Understanding of Evil, I sought to approach the question of suffering via experiential temporality. To take a step back, let me talk about Ophir’s vision of catastrophes. According to Ophir, while some catastrophes are undeniably monstrous, they are in the past and thus foreclosed to intervention. Ongoing catastrophes, on the other hand, may be lesser in scope, but alleviation or intervention is still possible.

This insight brings us to his understanding of evil as production, i.e., evil as an activity that is both ontological and socio-political. It is an activity that can be stopped or brought to a temporary halt. To put it bluntly, philosophy tells us that there are suffering others; yet, it is necessary to take a step back and reflect on the systemic and broader conditions of their predicament, so as to alleviate the suffering of as many people as possible. The harsh reality of this approach is that we bypass a homeless person on the street in order to reflect on the conditions of homelessness. Now, since evil is an ontological category, its mode of being is superfluity. To be superfluous is to be unnecessary, artifactual, de-naturalized. It is something that ought not to be. It is neither a diabolical element in the darkness of the human heart nor a meaningless, thoughtless absence of the good.

I’d like to cite Ophir’s own words on the concept of the good and, ultimately, all thinking grounded in various utopias, as if committing to a vision of a better future is a moral virtue in and of itself:

[A] theory of morals that has gone through the ontological turn has no interest in Good. Good neither adds nor subtracts in moral matter. We have no interest in Good, whether it is understood as happiness or as what gives happiness its value and weight, just as it gives value to any other entity […] Not the Good that isn’t there, but the superfluous loss and suffering, present in their excess, in the imperative. Not the absent Good, not even the absence of Good, but the presence of superfluous evils. Not what is lacking or even the lack itself, but the superfluity of the tormenting lack, the lack that can be fulfilled and removed. Not the generosity or the fairness, but the humiliation and the injury that can be avoided and removed. Not the virtue but the unnecessary brutalization whose results should be stopped. People who have undergone horrible suffering or irreplaceable loss may never again know how to be happy. Memories will haunt them, mistrust toward every person may sabotage every relation they seek to create, torment of mind and body will continue to plague them. The imperative to stand beside them concerns not their future happiness but their present torture.

In focusing on suffering as an ongoing process—where temporality is key—I argued that not only can we understand suffering or pain as a kind of continuous agonizing time, but we can disrupt it, even for a moment, offering the sufferer a glimpse into a different affective temporality.

Needless to say, this notion of temporality is very different from what might be called chronological or clock time. Instead, I discussed affective temporality, i.e., the fact that in joy, our sense of time recedes into the background, whereas in pain, we experience pure duration.

Now, I need to be very specific about the genesis of my arguments. About four years ago, I was very much in love with and engaged to a man who was later diagnosed with terminal cancer. Thus, began my own time of suffering. The span from the moment that I woke up to my bedtime seemed completely undoable. I realized that the advice “take it day by day” was unrealistic and useless. Fifteen minutes is more like it. But I did get moments, just moments, of respite, when my friends took me out for lunch, walked with me to the park, or just held my hand. I was on the verge of collapse, not caring about what happened to me, which makes me wonder if I’d have survived at all if it weren’t for the systematic disruption of my suffering by my allies.

[Description of image below: A close-up headshot of Kristina, her head resting against the exterior wall of a building, her eyes downcast. From the photoshoot, Fashioned. Photo credit: Hugh Trimble.]

It was a strange time really. We all knew that it was my survival that was at stake and we were dealing in the language of alliances, channels of support, responsibility, and solidarity.

Thus, in my dissertation, following Ophir, I define evil as superfluity, as what ought not to be, divorcing it from any idea of necessity, and its social production that must be reduced or disrupted.

I argue that affective time activates and conceptually revitalizes our moral agency, since it is phenomenologically described as open to interruption or disruption. We have the choice to either let the agonizing duration of another’s suffering go on uninterrupted or fragment this temporality, thereby offering the sufferer a relief and a glimpse of a more “habitable” temporality, the temporality of going about your business in the world and forgetting about the ticking of the clock. Thus, we are capable of altering the suffering other’s sense of time.

In my discussion of Spinoza, Adi Ophir, Jean Amery, and Emmanuel Levinas, I situate suffering as the very voice and language of superfluous evil, arguing that understanding affective temporality in its relation to evil opens up new possibilities of its concrete, situated alleviation. If evil qua suffering is a language that can be studied and understood, our moral indifference becomes increasingly less justifiable. Ultimately, I submit that failing to exercise our agency in the face of the concrete suffering of others means allowing their torment to continue uninterrupted, thus forming the juxtaposition of moral action and complicity.

All in all, the thrust of my arguments went against such ethical notions as infinite responsibility, the incalculable, and radical alterity. Since we, as human beings, are finite and situated, I do not see how any ethics grounded in these notions can be commensurate with our moral agency. I wanted to articulate an ethical lens that would allow us to not only recognize the suffering of someone close to us, but also enable us to respond ethically, as finite beings.

I remain convinced that we lost any viable, actionable idea of moral agency in 20th-century Continental philosophy. As such, I do not believe in any long-term solutions to suffering that amount to a kind of infinite moral deferral while we busy ourselves looking for said solutions and perhaps romanticizing them. Suffering does not take place in a socio-political vacuum. What I mean is that what follows an event of suffering may be a greater visibility of an injustice or access to support channels, but it may also be social abandonment and forgetting. We thus need conceptual tools that enable us to differentiate between different situations of suffering and assess where moral urgency is absolutely necessary. As popular as this idea is, there is nothing truly equalizing about the pure event of suffering, excised from its social fabric.

A student in an upper-level philosophy class once asked me, “Would the ideal world be without suffering?” I fell silent for a while. “No,” I finally replied. “It would be without indifference.”

Kristina, what forms of discrimination and exclusion have you experienced in the university due to systemic ableism?

I discussed my experience of thorough-going discrimination in the DePaul graduate philosophy program in a blog post, which, I believe, caught the attention of the APA and made them censure the program. 

For most people, loneliness means feeling like an outsider in the company of fellow human beings. For me, it is concrete and quantifiable. I’d sit alone during the breaks and my able-bodied colleagues would stand in a circle five or six feet away from me. They’d laugh, socialize, and talk shop. My loneliness is about those five feet.

It is also about my arms, thin and deformed. I’d raise my hand in class to ask a question or make a comment, dying inside of social anxiety, and the professor would look right through me, time and again. People stared, but no one looked, and no one saw. Needless to say, I stopped raising my hand in seminars.

Those were hard years for me. I had no one to talk to, no friends, and the empty promise of collegiality left a taste of ashes in my mouth. It was just me, my mom, and my stepdad. Things would change eventually; now I am happily married. But 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?” When I shared this realization with a former professor of mine—I did meet a few decent people at DePaul University, but they didn’t tip the scale—she said, with a kind of matter-of-fact compassion that I have come to appreciate greatly, “Well, it’s because you didn’t have a day. For the world of the able-bodied, your one and only event is your disability. The thought that you experience the same mundane joys and sorrows that we all do, as you go about your day, eludes that world.” I think this assessment was spot on.

To this day, I hold the philosophy graduate program at DePaul University accountable for its relentless ableism. Although I believe that, in speaking up until I was finally heard, questions of ableism and institutional hospitality have gained visibility in the program, I refuse to forgive this academic institution for what was done to me for nearly a decade.

What are your plans for the future?

My plans are kind of up in the air. I am pursuing more and more opportunities as a performer, but I am also thinking about applying to a doctoral program in bioethics this year. As I said elsewhere, “I’ve achieved a lot of what I could and a little bit of what I couldn’t.”

[Description of image below: Kristina is sitting in an electric wheelchair, staring upwards, her head resting on an exterior wall of a building. A book of photography called Traumas sits on the chair, resting on her left side. From the photoshoot, Fashioned. Photo credit: Hugh Trimble.]

If I do go into bioethics, I hope to work on professional responsibility to people who live in severe chronic pain and to develop a better language with which to assess different intensities of pain, as juxtaposed with the inevitable question, “What’s your pain level on the scale from 1 to 10?”

It is absolutely striking to me that Levinas characterizes “a demand for analgesia” as “primordial, irreducible, and ethical.” He further states that “all evil relates back to suffering,” which brings us back to my dissertation. I firmly believe that we haven’t even begun to truly grasp the ethical and primordial nature of this demand for analgesia, despite Elaine Scarry’s groundbreaking work The Body in Pain: The Making and Unmaking of the World.

I do realize that it’s an ambitious undertaking. But, the simple fact is that right now we are stuck between an opioid crisis and a responsibility to people who are in chronic pain. We hear a great deal about the opioid crisis, as of course we should. What we rarely hear about is the experiences with medical authorities of pain sufferers. One pain specialist that I saw during the past year essentially mocked my self-report of my pain, humiliating me so much that I broke down on the way home from the appointment. I will consider my life’s work worthwhile if I bring us closer to understanding the true significance and implications of the demand for analgesia.

Otherwise it’s basic day-to-day survival for me. Some people cannot afford to have long-term plans. I am one of them.

Kristina, would you like to say more about something that you’ve mentioned in this interview or recommend any resources such as books or articles?

Yes, I’d like to re-visit the problem of suffering with a view to disability studies. Some of my recent work is about forcing into crisis the dominant discourse on disability, which presents disability as a positive value and a source of pride. While Tobin Siebers does argue that disability seen as a social construct short-circuits the issues of pain and brute suffering—I myself have been living on opioid painkillers for many years now—he still ends up affirming disability as an example of human variation, which makes perfect sense, from the standpoint of politics and political mobilization.

Beyond politics, however, things are not as clear-cut for me. Here I want to refer to one of my performance pieces:

I was exiled from my own country where I was being killed by oblivion, abandonment, and imprisonment in my tiny apartment. The bright, wide-eyed disabled girl did not exist because she was unthinkable. I was unthinkable in my defiance, my intellect, and, the worst sin of all, my sensuality. My life was forever decided by the many flights of stairs I had no way of climbing, the elevators neglected to be built, and the ramps leading to nowhere. I was held prisoner by the architecture, I was immobilized, the walk of atonement in reverse.

But what about the United States? Here, people with disabilities and academic luminaries will tell you that disability is a source of pride and a form of biological diversity. They will tell you that we are independent, that we do not need any help or charity, that we’re basically like everyone else.

I speak as a victim and I guard my resentments. I am “warped” and backwards in my thinking because I decline to join the chorus of the future wherein every person with disabilities is proud of their deformities, wherein charity is met with scorn, and wherein brute suffering is turned into an unfortunate by-product of human variation. If the future is truly a value category, then I choose to distance myself from the bright world of tomorrow. I am the density of the past and I resent the future where every withered limb is a triumph of biodiversity.

I am still trying to articulate my resentments in a way that does not compromise the political struggle for equality and accessibility in which people with disabilities are engaged through intellectual work and solidarity; however, I think that, ultimately, I am pushing against any dogmatic or “proper” perception of one’s own disability. My deformed limbs are a biological fact. It is my task to assign a moral truth to this fact. Once again, struggling to find the proper conceptual vocabulary for such reflections, I would say that at least the partial truth of my body is Ophir’s notion of moral urgency. My bones are my testament to the crime of deferral, the deferral of proper treatment due to its unavailability, the deferral of compassion.   

I do not say “yes” indiscriminately. To quote Adorno, “we have to ask what has to be or has not to be affirmed, instead of elevating the word Yes to a value in itself, as was unfortunately done by Nietzsche with the entire pathos of saying yes to life.” I refuse to accept that Yes is a value or even virtue, if only because it eradicates the moment of choice. I choose my right not to say “Yes” and I choose to agree with Fanon’s words that there comes the juncture where all dialogue, all reasoning, all negations with the colonizer simply fail and stop. This conviction very much mirrors my own affect, such that I see the futility of continuing a dialogue between myself and the able-bodied world with a devastating clarity.

I would like to recommend the essay “Resentments” by Jean Amery, if anyone would like to dig into this a bit deeper and/or share their thoughts with me. I also highly recommend The Order of Evils by Adi Ophir. His work is startling in its depth and originality.

I must also draw your attention to Ruben Gallego’s book White on Black, which is, thankfully, available in English. I believe that it is the first literary account of life with a severe disability written in Russian. It won a highly prestigious literary award and I am happy that, instead of going unnoticed, it became a singular cultural phenomenon. It is a hard-hitting book, to say the least.

I’d also like to recommend my newsletter: https://tinyletter.com/twigsoldier.

Finally, I’d like to ask readers and listeners of this interview to consider supporting me as a disabled artist and performer on Patreon: https://www.patreon.com/woundedwarrior

Kristina, thank you very much for your determined and thought-provoking remarks throughout this interview. I hope that many people will go to your Patreon page and show their appreciation.

Readers/listeners are invited to use the Comments section below to respond to Kristina Lebedeva’s remarks, ask questions, and so on. Comments will be moderated. As always, although signed comments are preferred, anonymous comments may be permitted.

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Please join me here again on Wednesday, December 18th, at 8 a.m. EST, for the fifty-seventh 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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