A Disability Statement or The Banality of Radical Alterity

By Kristina Lebedeva

I write this text with an array of anxieties. The anxiety of taking a stance. The anxiety of saying too little and the anxiety of saying too much. The anxiety of getting it wrong. For we are taught to not tolerate wrongness. With this in mind, I want to state from the outset that the statement in question is written strictly from the perspective of a foreign woman with a severe physical disability. In this sense, I will not be able to do justice to the complexity of conditions and experiences that the word “disability” necessarily indexes.

Let me begin with a few theoretical remarks.

After many years in the field of Continental philosophy, I’ve come to think that theory is not always our friend. Some theories illuminate a part of the experiential world, while other theories make us blind. One theory that has been doing damage to me, in my view, is that of radical alterity or the transcendence of the Other. To quote Adi Ophir in his book The Order of Evils, “Otherness is not morally relevant, only concrete others are.” Practically speaking, this means that my needs are more or less the same as everyone else’s. I need company, a sip of water after a long lecture, a touch of a warm breeze on a spring day.

The means to fulfilling my needs are different (e.g., someone has to hold up a glass of water to my lips in the absence of a straw), but this is a different category.

Over a long span of time, I have also seen and keep seeing acts of kindness both from the student body and the faculty. At the time of writing this text, I am no longer alone. But here we are talking about exceptions. The question is then: How do exceptions become examples and models?

Furthermore, I see the logic of assimilation as one of violence and erasure of difference. We cannot simply do away with the category of disability. We cannot treat it as an abstraction, let alone conflate the categories of the marginalized and the subversive.[1] The means to fulfilling my very human and understandable needs will always be different.

I will always need help, as my condition is permanent and incurable. I will always be a challenge to and disturbance in one’s calculations of convenience.

To return to Ophir, responding to disability and pain is a matter of moral urgency. Which is to say, a matter of rupture in the perpetual deferral of contemplation and the aforementioned calculations of convenience.

What follows is a non-exhaustive list of suggestions that I believe to be helpful to any student with a physical disability and to me specifically:

  1. It is important that someone checks in with me during break in the context of a seminar to make sure I am able to get things like a glass of water or my medications.
  2. It is extremely important to check in with me after the end of evening seminars to make sure one of my parents is around to pick me up. The fear of being locked in an empty building at night is not a good thing in any imaginable world.
  3. When we transition from one event to the next, people tend to walk in groups, understandably so. However, this poses some difficulties for someone in a wheelchair and it would be much appreciated if one of my peers could walk with me to the next destination and made sure I am not excluded otherwise.
  4. The same logic applies to more spontaneous events like a trip to a bar. As a rule, I am more than happy to join, but I would need someone to walk with me there, possibly call my parents, etc. For better or worse, the disabled always need to plan ahead and spontaneity is not our friend.
  5. The issue of accessibility is unavoidable. If an event is held in a building with even a couple of steps, it is very possible that I will be excluded from attending it. It is thus imperative that all departmental events be held at wheelchair-friendly places. Should the choice of the venue be made by the chair of the department, as is usually the case, we as a student body need to insist on its permanent and unquestionable accessibility.
  6. One doesn’t immediately realize that small gestures often make a difference. Others are certainly busy, enduring their own hardship, etc., but giving whatever you can helps, especially for someone who feels neglected or overlooked so frequently. Helping me, for example, get to the train and back home does indeed make my day easier. Receiving a phone call or email that simply asks how I’m doing can truly lift my spirits.
  7. The hope is that, in addition to being a venue for group discussion, philgradonly can also be a medium where I can ask for help.
  8. While the need doesn’t arise very often, I may need someone to accompany me to my medical appointments, especially since such visits make me particularly anxious.
  9. The penultimate point to be made here exemplifies the tension between the personal, the contingent, and the ‘generally true.’ As many of you know, my fiancé has advanced cancer and his prognosis is bleak. I will not overstate my case if I say that the support of my friends has been life-saving during this nightmare. Thus, finding the time to hang out with me, take me out for walks, or just include me in some of the things you might already be doing (e.g., reading groups), will always be very helpful. The bridge between the contingent and the generally true[2] is the fact that there have been multiple times during my years as a graduate student when I was extremely ill or went through other severe problems and I could have benefited from friendly support. So what I am calling a more general truth here is the fact that anyone with a serious illness is very likely to go through the times of significant physical and mental pain and other problems that only aggravate the existing physical condition of frailty. This is when the support of others can be life-saving.
  10. For better or worse, I have very few friends outside the department. Hence, I am seeking support here, from all of you listening to this now.

To conclude, I want to thank everyone who supported the fundraiser, donated, attended the benefit, or simply reached out to me with words of support. Furthermore, I want to thank James Murphy, Joe Weiss, Gil Morejón, Owen Glyn-Williams, Don Deere, Miguel Gualdrón, Güçsal Pusar, and our former colleague Dilek Huseyinzadegan for being exceptionally supportive in the wake of the events surrounding my fiancé’s illness and my own health.†

[1] According to Tobin Siebers, “Physical pain is highly unpredictable and raw as reality. It pits the mind against the body in ways that make the opposition between thought and ideology in most current body theory seem trivial. It offers few resources for resisting ideological constructions of masculinity and femininity, the erotic monopoly of the genitals, the violence of ego, or the power of capital. Pain is not a friend to humanity. It is not a secret resource for political change. It is not a well of delight for the individual. Theories that encourage these interpretations are not only unrealistic about pain; they contribute to the ideology of ability, marginalizing people with disabilities and making their stories of suffering and victimization both politically impotent and difficult to believe.”

[2] In the sense that my situation with my fiancé is likely to be different in a year.

† The statement above was written on September 28, 2015. Since then more people have stepped up and a network of supporters was created. This paragraph remains, however, as a way to mark the specific context in which it was written.

 

 

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