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LIFE UNDER THE SPOTLIGHT:
by Danny Kodmur
~ONE~ SPRING 1999: For days or even weeks, I didn't leave my apartment. I ate little and slept less. I dropped from sight so completely that few took the time and energy to follow me where I was going. I told people I was sad, but the despair was something deeper. Serious clinical depression had come for an extended visit, bringing with it a paralysis greater than anything cerebral palsy itself could throw at me. The hectoring voices in my head made the situation worse. "You pathetic loser. You're nothing but a drama queen," they insisted. "You have been spoiled with love, financial support, and access to the best education. What have you got to be depressed about?" In this self-critical mode, I grew even more depressed, convinced I was ruining my life and letting down friends, family, and an entire community riding on my success. For years I had told myself that failure was unacceptable, that burnout happened to others but not to me. I was wrong. After years of rolling from one victory to the next, I crashed into walls I could neither breach nor evade. Finally I folded, gave in to utter helplessness. I hated myself; I did not feel entitled to be depressed, and yet I was. My intellect told me depression was self-indulgent, and the world around me saw it as a betrayal of sunny American optimism that verged on the criminal. ~TWO~ My public persona displays little of the subcutaneous turmoil I keep in check. When people see me zipping down the sidewalk in my sporty blue electric wheelchair, they often notice a smile on my face. If they come closer, they might even hear me singing as I navigate streets and curb cuts. Do able-bodied observers find this an inspiring display? After all, here I am, pressing forward, not letting anything or anyone get me down, a genuinely happy force of nature. On my good days, this is more than the self I present to the world. It is the self I present to myself, the best, most positive, most authentic Danny I believe exists. However, I have long felt distanced and detached from this extroverted me, a me that often feels fake, no more than a myth for public consumption. I have felt like an object, living under the constant glare of some invisible hovering spotlight. Growing up as a part of several minorities, I have been conscious of living two lives, my own, and the life I lead as a symbol in the eyes, hearts, and hopes of others. Because of an accident of history, I have been not merely an individual leading my own life, but the embodiment of pioneer barrier-shattering, a kind of disabled Jackie Robinson in miniature. As one of the first students mainstreamed in my huge school district, I could write my life story as a procession of Firsts. You might think that such experience would leave me confident and secure, but instead all it did was raise the stakes for the next struggle. I was forever conscious that I represented more than just myself; I was Disabled People. The adults around me were supportive, but without meaning to they often increased the pressure on me. One parent of a disabled child I knew wrote encouraging predictions about my future on my cast after one of my surgeries; several years later, after two close friends from special education school died, one of their moms said it was up to me to carry their spirits with me through life, up to me to succeed since they were no longer around to succeed for themselves. This was life under the spotlight, with Danny cheered and prodded by a caring yet demanding audience. If I went to law school, I would of course be a great campaigner for disability rights; if I went to graduate school, I would naturally be a famous historian. Anything less would be a waste, of both my talents and all the energy and expectations poured into me by others. ~THREE~ It wasn't that I was unaware of the possibility of failure, more that I considered failure a temporary setback, a minor detour on the lifelong journey toward success. The thought of failure as a cycle never occurred to me. So when I found myself stuck in a graduate school program that wasn't working for me, I had no idea what to do. I was raised to be resilient, not a quitter. While this attitude certainly bred strength of character, it also made me a prime candidate for bitterness, since I tended to endure unworkable situations when common sense might have steered me toward a graceful or even abrupt exit. Sometimes quitting is indeed the best choice, but to me it felt like a confession of failure. I was afraid of failing not just now, but forever; I was afraid to vent the anger I felt, both toward the world and myself. As disabled people, we contend with two main stereotypes, the saintly, persevering indomitable optimist, and the bitter, hostile cripple who blames the world for his problems. Afraid of coming across as the latter, most of us try our best to embody the former. That is why people like me are seen as courageous, plucky, spunky; we endure what able-bodied people assume is unendurable, and we do so with smiles, determination, and remarkably little bitterness. This is how others see me, but it is also how I wish to be seen, since the alternative is so frightening. Like Lou Grant on the old Mary Tyler Moore show, I hate spunkiness. For most of us with disabilities, the plucky public face is but a useful mask, a means of controlling and sublimating the anger and disappointment inside us. Such sublimation exacts a high and painful price. Where does a lifetime of anger go if we are told all our lives that expressing it makes us unpleasant people, and that giving voice to it will lose us the good will and support of the able-bodied world? Since we often recognize that anger will hurt too many others if turned outward, we keep it inside, turn it toward ourselves. We become seriously depressed, concluding via some twisted interpersonal algebra that it is better to hurt one person than to hurt many, even if that one is ourselves. So we are eaten up inside by frustration and rage, gradually but surely drifting away from a healthy expression of those feelings. I may have doubts in retrospect about having behaved like a crusader for disability rights, but at least my activism offered me a sense of purpose and direction, along the way giving me plenty of appropriate targets for my anger. Now that sure fixity of mission has evaporated, leaving me with a frightening realization. I became an activist and a public advocate for a variety of reasons. The work was necessary, I was in the right place at the right time, and it was often a lot of fun playing at politics and policy; lauded when successful, I could feel like a righteous and misunderstood Don Quixote if I failed. It was also my way of coping with the permanent invisible spotlight; since the light would be there anyway, I thought I might as well create something worth watching. But several years of being severely clinically depressed have taught me the principal reason I seized on my mission with such intensity. I was quite simply scared to death. ~FOUR~ An endless succession of tasks, battles, and enemies, activism filled my life, and kept me from facing my fundamental fear, a fear many disabled people share, even if we don't or can't discuss it. I call it Future Panic, the sense that no matter how much we strive or how much we have accomplished in the past, there is no guarantee of a meaningful future for us. I realize the future is guaranteed to no one, but the terror we face is much stronger than ordinary anxiety. Most people without disabilities are comfortable proposing or imagining their own futures, visions that incorporate employment, housing, and intimate relationships. It is more difficult for us to achieve these goals, and more importantly, more difficult for us to believe we can achieve them. This is the Panic, the drumbeat chorus of "Never," telling us we cannot be seriously considered for meaningful employment, that we will not find stable accessible housing in which to live independently, that we shall not find anyone who can accept us for who we are in a lasting sexual and romantic relationship. Many people I meet dismiss this line of thought as ordinary pessimism, as a mere narrowness of vision. Able-bodied people, that is. Disabled people tend to know better, although we often pretend we don't, in order to get through the day. We know it is a severe existential crisis we face, a fear that the world holds no place for us, at least no place where we can do and be what we wish. I need to believe that twenty years from now, many more disabled people will have jobs, homes, and families. They will embody the norm, and not merely the pioneering publicized few. Today, however, opportunities for us still exist in pitiful and insulting proportion to the depths of our needs, our capabilities and our potential. It is no wonder then that some of us drift aimlessly if we have no advocacy agenda to pursue; we have been shown the path to achievement, but not the ordinary routines and rituals of basic confidence and competence that make life into more of a continuous journey and less of a chaotic improvisational scramble. Some of us might fantasize about giving up completely, if we only knew how. Some able-bodied people think they know the way we should give up, if that's what we decide to do. Many of them see suicide as the perfectly understandable response to a depressed and unfulfilling life, especially a disabled life; in fact, some have had the gall to ask how it is I have avoided killing myself, since that's what they themselves would do if they had or ever acquired a disability. The first time I was asked that question, I made a solemn vow I would never commit suicide. I promised this more to tell the world to go to hell than to reassure myself that I had a hopeful future. I no more wanted to be the crippled suicide statistic than the bitter hostile nightmare cripple, but ironically I have become something different. Just as depression is the perversion and sublimation of hostility, it is also the sublimation of suicidal despair. When I am severely depressed, not eating, communicating with others, or leaving my apartment, I am in fact committing suicide, not quickly but slowly and inevitably, with the death of hope and possibility. Treatment, therapy, and medication can help restore hope and mitigate some of the despair, but it cannot necessarily provide me with a motivating and galvanizing vision of my own future. Perhaps my solutions can be found in the confidence of the past; perhaps the unstoppable pioneer was much more a part of myself than merely a part I played. I do know that no one who tries to counsel me from a disability-neutral perspective has the slightest sense of what I have been going through. ~FIVE~ A good friend told me years ago that I try to pin too much on my disability, that it isn't the fundamental defining event in my life, or the hook on which I can hang all my problems. She may have been right, but I know that its ripple effect has been enormous. There is much talk these days about cures for disabilities, but with all due respect to geneticists and to Christopher Reeve, if I were magically cured tomorrow, my life would remain the same, because it has thus far been molded by both the social experience of disability and the treacherous diversionary morass of severe depression. I know that I will have to rediscover the hope and potential within myself, that no one can give me a transfusion or a prosthesis for what is temporarily missing from my head and heart. Despite the fact that I started off as a little disabled Jackie Robinson, I know now that I want a life that's lived on more than just the public stage, an existence on a higher and more satisfying level than that of symbolism. I suppose I want the freedom to be ordinary, even though, paradoxically, I know I might not ever be happy with anonymity. Sometimes I tell myself that the world won't grant me this freedom, but I've come to recognize that I need to take a greater degree of responsibility for where and who I am, while keeping clear the distinction between responsibility, which motivates, and blame, which paralyzes. The future, both for me and for others, needs to be built and fought and argued into existence. My depression of the last several years may indicate how tired I am of the struggle, yet I know I must return to it. I simply don't want to go back alone. While my pioneering days are not over, I hope my solitude and isolation will soon be. If any of what I have written resonates with you, if you too battle depression, ignore people who only exhort you to "cheer up"; the honest response to advice that simplistic is a hearty "fuck you!", but you can't cuss people out all the time, no matter how good it feels. Even if your instincts urge you to alienate them, instead seek out understanding people to stay at your side. Their deeds, their very presence, may do more to break depression's grip than words themselves ever could. In the company of others, each little victory along the path to our futures will be that much more worthwhile. As long as we battle the Panic, that future may be as uncertain as our place in it, but we all deserve the chance to lead lives full of substance and meaning. I hope we can find the strength, the humor, and the compassion to help each other, and ourselves. .
©2003 Danny Kodmur
Don't
wait.
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BENT: A Journal of CripGay Voices/January 2003 |
