HOW MUCH
DOES IT MATTER?
Wrestling with the
Metaphysics
of Disability

Danny Kodmur

Meta-what?
Is Danny throwing philosophy at his defenseless readers this time around? Something pompous and incomprehensible? Is there a mandatory form-based quiz at the bottom of this page?

Stop. Relax. Breathe. All I am going to be discussing is how we see and understand ourselves, from the inside, in relation to the people and the world around us. That process of self-awareness is made even more complicated when we have disabilities.

So when people ask me or I ask myself just how much impact my disability has had on my life, I usually say that I don't know. Am I evading the central question of my existence, or is this issue really such a mystery that no answer is possible?

In some ways, talking about this is a nonsensical waste of time. I know no other life than the one I have lived. There is no way to have my alternate able-bodied existence unfold before me like a supernatural home movie. I cannot call it up magically on pay-per-view to satisfy my curiosity, however powerful that force might be.

Not being able to imagine my life
without my disability is only part of my dilemma. Even harder than envisioning its absence is the process of trying to figure out just how much it matters, of trying to assign it a relative weight in my life. This might be difficult or even impossible for able-bodied people to understand, but there are days when I don't think about being disabled. These can be good days when everything seems to go right, or they can just be days when I'm so busy dealing with everything else that my disability gets pushed into the background.

Just when I might be happiest about coping, about succeeding, the smallest, stupidest thing can happen, and the illusion is broken. The Danny Express stops chugging along and gets derailed; life manages to elude my grip and smack me in the head. These blows might involve something as small as a word spoken in ignorance, or something as insurmountable as not finding an accessible toilet when I really need to go. After such experiences, the biggest casualty is usually not my pants but my sense of optimism, my hope for meaningful progress.

So which vision is reality? Danny as cheerful, indomitable locomotive, or Danny the crip, who may have a master's degree but still can't find an accessible john? The answer is both, and neither. Part of the tremendous confusion and insecurity about being disabled is that we never know what each day might bring. If we face each day with sunny optimism, we risk being crushed and humiliated, and yet, if we go out into the world bitter and suspicious, ready to kick butts and file lawsuits at a moment's notice, we risk being overtaken and controlled by the same righteous anger which so often fuels our progress as a community.

Because it's often so hard for me
to simplify my stance on disability, so difficult for me to reduce to a single attitude the many complicated thoughts, feelings, and impressions I might be processing over the course of a given day, I don't tend to react either coherently or well when I am expected to think or react in a specific predetermined way. Thus, when some old friends took issue with my previous column for Bent, and expressed some serious concerns, I was torn between wanting to defend myself and wanting to make sure I listened to them. I ultimately realized that our areas of disagreement helped me understand how much progress we had made together, and also how much further we needed to go.

After my first column ("A Soul Clothed in Shining Armor") was published, people let me know how moved they were by my feelings and my sense of identification with Thomas Quasthoff. Where I and some of my friends parted company, however, was in my discussion of attitudes, specifically the attitudes toward disability held by many able-bodied people.

Able-bodied friends whom I love and respect shared with me their feelings of hurt and confusion at the way I portrayed able-bodied disability prejudice and its effect on our romantic lives. They told me they'd never thought of me as disabled, and they were offended that I seemed to be dealing in stereotypes at the same time I was complaining about being stereotyped myself. I guess a couple of them felt that my generalizations about able-bodied people were a kind of slap in the face, an uncharitable reaction to their years of open and caring support.

If I were a disability radical,
I would simply put this down to entrenched denial, evidence that able-bodied people can never and will never understand the depth of disability oppression in our society. But I guess I'm not a radical any more, or maybe I just know these people too well to doubt either their credibility or their sincerity.

I wrote back to one of my friends, trying to explain something so obvious that it was invisible to both of us. If she and her husband have never thought of me as disabled in any kind of limiting or prejudiced way, it is not so much a sign of my faulty generalizations as it is proof that they are different, in some odd way as different as I am.

They are open-minded about disability because of friends like me and because of their own family experiences. They have caught the benevolent virus which renders prejudice both powerless and ridiculous, and I'm proud to say I helped give it to them, and to many others as well. Alas, one of the strange side effects of the anti-prejudice virus is a special kind of amnesia; once you've caught it, you forget that you ever felt any differently. You also lose a sense of how distant you might be from the attitudes of others, since ideally everyone should feel the way you do.

It is ironic that several of my friends say that knowing me has been an inspiration. They do not realize that the true inspirational journey has been theirs, a progression toward greater awareness and acceptance of a world enriched by human differences. Between their sense of my progress and their own, it's very easy for the atmosphere to become suffused with hope and optimism, and it's hard for me to knock that; yet, it often feels much more complicated from the inside.

It would be arrogant and insulting
for me to tell any of my able-bodied allies and friends that they cannot understand my experience at all, because so many of them have decades of experience listening, sharing, and being forceful advocates in the realm of disability. I think what I need to tell them, in respect, admiration, and love, is that no matter how long they have struggled at our sides as friends, relatives, partners, no matter how intimate their observations have been, they have still been observers.

I think most able-bodied people knowledgeable about disability are aware of this limitation, cognizant of this distinction, but I think the closer many of them get to disability, the more helpful and necessary a frequent reminder becomes. Still, the people who wrote to me were more concerned about my stereotypical thinking than they were about any implied slight they sensed from me.

What might have set them off even more than what I said was the tone I was using. I was trying for abstract and elevated, but it might have come across as a harsh and clinical dissection. Or maybe it's just that I was angry, and disappointed, and hurting. My friends have seen me happy, and they've seen me depressed, but they've rarely seen me angry, and I think some of them were worried that I was already embarked on a path of frustration and bitterness. It's funny, but I didn't want to stay angry any more than my friends wanted me to get angry in the first place; yet, I realize I am becoming less and less proficient at hiding my anger under a charming smile. I suppose years of unemployment and romantic frustration can have that effect. . .

A gay ablebodied friend told me
how much he identified with the longings and yearnings Quasthoff helped me understand in myself, but he also said he didn't feel my situation was that unique, that more people were lonely and isolated than were happily ensconced in long-term relationships. Basically he told me that the romance game disintegrates for a lot of people, and there was no reason my experience should necessarily have been any different. Such rhetoric leaves me feeling trapped and angry.

Do I play the disability card, and risk alienating him by telling him, "No, damnit, my pain is greater than yours, and deeper than you can ever understand!"? Or should I pacify him and everyone else by consenting to the universalization or all human pain and sadness? I know there's a middle ground between these two extremes, but I am no closer to solving the dilemma of universal-vs-particular than I am to understanding whether my disability is just a descriptive trait or the weightiest of several burdens I may have to bear over the course of my life.

Is it as light as the pound of feathers Galileo dropped from the (clearly disabled) Leaning Tower of Pisa, or is it as heavy and tragic as the Stone of Sisyphus? I still don't know, but I intend to keep asking myself periodically. Or some of you could ask me, or yourselves, once a month or so—not to drive us crazy, but perhaps instead to begin working out for ourselves the complex metaphysics of disability.

© 2000 Danny Kodmur

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DANNY KODMUR, chronically overeducated and underemployed, lives near Berkeley, CA. You can reach him at dkodmur@earthlink.net .