On Being (Un)Representative

In Memory of Barbara and Daniel

by Danny Kodmur

Just over a year ago, I was hospitalized, not for the first time, and probably not for the last. I'm hardly a grizzled veteran of such places; unlike many other disabled people, I've spent many more hours watching medical shows on television than I have spent living The Patient Experience. Nevertheless, I know the drill.

So when a man was pushed in on a bed to be my roommate, I tried not to pay too much attention, to keep to myself. This detachment soon proved impossible, because his bed became the hardly-calm center of a bitter, anguished hurricane. He kept screaming to the staff that he was in pain, that his history as a drug user meant he needed 50 times the recommended dosage of morphine in order to get any relief. The nurses refused to give him such massive amounts of painkillers, and his own doctor was unavailable, so he began accusing everyone of being sadists, Nazis, insensitive bastards who enjoyed seeing him suffer. This went on for several days, and I soaked it up even as I tried to block it out.

Imperceptibly, as he got meaner and more unreasonable, I got sweeter, more apologetic and gently cooperative with doctors and nurses. Had the proximity of the storm worn me down from my standard feistiness to a state of exhausted docility? Was I trying to be the Good Patient, as contrasted with the seemingly possessed Bad Patient in the next bed? Or was I just trying to score points with the cool female nurses and with one incredibly adorable clearly gay male nurse?

The short answer of course is Yes, to all of the above. But the real truth goes deeper. For the guy in the next bed wasn't just a furious paranoid drug addict; he was, in fact, another disabled guy and wheelchair user, who had used illegal drugs and prescription pills to dull the constant pain he had felt for many years from an incomplete spinal cord injury.

So I wasn't just separating Good from Bad, cooperative from paranoid. On a certain level, I was saying to the able-bodied hospital staffers, "Hey, look. We may both be in chairs, but he is not me, and I am not him." Perhaps I was doing this to set myself apart, out of fear of being lumped in with someone on the basis of a shared but not totally defining characteristic, but several months of introspection have persuaded me otherwise.

Let me take you on a voyage, transported by the Wayback Machine some of you may remember from old Mr. Peabody cartoons. Maybe some self-examination will show us all, me as well as you, why my life so far has been an awkward oscillation between being part of and being separate from the community of other people with disabilities.

When my parents started me at Special Ed school at age three, I began navigating my way, between adults and children, between the able-bodied world and the new world of disability opening up around me. Though I made friends readily with the other kids, I was already enough attuned to the rhythms of adult behavior that conversing with teachers and parents became normal for me. I don't think I was choosing sides, more that I was realizing what an educational community was, and that I liked knowing how it worked, enjoyed being in on the process.

Riding home on the bus every afternoon, my friend John and I would act out scenarios from the cop and paramedic shows we were obsessed with. I don't remember making any allowances for us both being in wheelchairs, nor do I recall consciously inventing able-bodied personas for ourselves. We were just the characters, in ways that were both highly abstract and very concrete. When John got dropped off, the roleplay would stop, and I would talk to another kid or to the bus driver. When I got dropped off, once someone helped get me and my wheelchair into the house, my disabled world would recede until the next morning, when the bus's horn would honk and bring it back to life again.

At home, I was surrounded by my sister, her friends, and their friends from the neighborhood, some of whom would later become my friends. It was an able-bodied world, as enveloping and unconscious in its way as was the Special Ed school. I didn't realize how wide the split had become until several years went by, and my parents and teachers began considering sending me to my neighborhood elementary school.

I remember being excited. I loved the enriching multifaceted uniqueness of the Special Ed school, but I had been there seven years, and it was time for a fundamental change. Once my parents' fears and hesitations had been somewhat allayed, the period of transition began. Because the adults in charge were enlightened and because mainstreaming was new territory for all of us, I was treated as a full person rather than as the object of a social experiment. My parents had the final say at all stages, but I got a vote, and a chance to talk and to be heard. As a brainy mouthy kid, I made the most of such opportunities, maybe more than I should have, but I couldn't help it. This was momentous change, this was process, this was politics, this was theater, and I was part of it.

The administrator in charge of mainstreaming used to tell me that I was in a way, their test case, their Jackie Robinson. If the changeover went well for me, others would follow. If not, others might still emerge, but progress would be much slower and more careful. Like Jackie, I would be a symbol of change, a sign of a social transition that would be welcomed by some and feared by others. Like Jackie, I would need to be even better than anyone expected, and to be a quiet educator of others.

Well, stoic dignified endurance may have been prudent in 1947, but it didn't feel right in 1975, not for me. I had the sense that I was not some isolated pilgrim from another world but instead the initial scout for a full-scale benevolent invasion; I might be the first, but friends of mine, real people like John, would follow me into regular school. What I didn't count on, though, was that I would get caught up in trying to make able-bodied friends at a difficult age, in talking a lot to teachers and other adults about disability, in trying to figure out who I was. I didn't realize that developing my individuality would conflict with how I was seen and presented, as a symbolic figure, the abstract sole and legitimate representative of students with disabilities.

As I went through elementary school, junior high, and high school, I didn't have any disabled friends. I remember once my parents tried to get me to go to a teen group at the local cerebral palsy center. I hit the roof. They explained they wanted me to have some disabled friends. At the time, I was coping with all kinds of social awkwardness and disappointment trying to make able-bodied friends. I guess I felt that returning to the world of disabled people would be a defeat, like a courier bringing back dispiriting news from the scene of a distant battle.

Ironically, during this time, I worked hard on issues of disability access and inclusion and was an activist in the political and symbolic world. Even though I thought it ridiculous and sentimental to be given press coverage just for being disabled, I still enjoyed it and said yes to most of it. I served on committees, gave workshops, talks, and speeches, even made an educational video about my experiences. I got elected twice to school offices, and part of me remains proud of that, but I'm going to remember not going to the senior prom just as much as anything else. I realize now that working on disability issues was easy for me, a low-risk high-reward way of confronting some problems while avoiding others. Work was recreation; just being disabled was and remains the hard part.

In these years the connection to my former life was tenuous, tense, difficult. My only links to my old school were with teachers and parents. I'd lost touch with John, my senior partner from the police station and rescue squad. The other two disabled kids my family and I were close to both died. I felt isolated from the world of my fellow students.

Much as I loved and honored them, the Special Ed teachers and parents couldn't really help me feel better. I couldn't name what I was feeling, and they had so much invested in me as both a surviving child and as the school's major success story that it all became part of the publicity machine. I wish I could be virtuous and say I barely tolerated it, that it disgusted me, but I loved being special and unique. The sadness and isolation I felt was buried under the accolades and the attention. All the positive spin helped me feel better about myself, but it continued to mark me as different and separate. I wondered where all the other disabled kids were, but in retrospect, I'm not sure I really wanted to know.

When the time came to go off to college, I had a choice between two Northern California schools. At one, I would have become part of a large and active disabled community, while at the other, I would become part of a tiny community that was still in the throes of diffusing itself throughout the campus. One campus would have meant being scooped up and lumped in with a group, while the other promised unique individual attention and a collaborative partnership with faculty and staff.

Well, the prospect of being one of the few was more comforting and less frightening than the reality of facing up to a community, so my choice was made. The process of integrating an institution, of being a pioneer, was difficult, painful, even in some senses unnatural, but it was the devil I knew, the situation that was most challenging without being threatening. I knew I was well-suited for a particular quiet kind of institutional politics; I'd managed to find a way of pushing a school or a community toward a goal without making them feel like they were being held hostage.

I decided against Berkeley not because I thought of myself as an assimilationist who was now above the disabled world whence I'd come. Paradoxically, it was the reverse. I didn't feel that my mainstreamed life had helped me to retain credentials and credibility within the disabled world. I'd become far more adept at talking to able-bodied people. They may not have been my community, but they had been my audience, and in the language of vaudeville, I worked as a solo.

I worried that other disabled people, like my Cousin Barbara, would expect me to stop playing nice and kick the asses that needed to be kicked. I worried I wasn't radical enough or fierce enough, that my ego had lulled me into thinking I'd been accomplishing things, when all I'd really done was sold out and lost sight of who I was. So I hid from Berkeley, hid from disabled identity, even as I became its quiet advocate in the councils of a much more tranquil place.

When the time came for my next school, I was all set to continue my pattern, as a less deluded less solitary Quixote still tilting at windmills out in the able-bodied world. Thankfully, someone I respected sat down with me and told me it wasn't my job to break access barriers at yet another institution. He told me I needed to focus on me, on who I was, and what I wanted to do with my life; in effect, he gave me permission to retire from the Jackie Robinson business, and to make the life decision that was best for me. It is probably no accident, then, that I ended up at Berkeley, a place whose centrality in disabled life, culture, and politics had intimidated me for years.

Berkeley was and is thoroughly disability-saturated, almost to the point of occasional inebriation or even toxicity. I quickly realized that the disabled universe there was too vast and rich for me to feel anything beyond confusion. I didn't have the immediate sense of home I'd been hoping to find, but the sense of independence and personal possibility Berkeley embodied enabled me to achieve several firsts, for once none of them fodder for the Pioneer Publicity Machine. First time buying anything in a store by myself, first night out to eat, first movie in a theater, and yes . . . even, my very patient readers, my first sexual experience. Ironically, the world-renowned disability Mecca did not make me more comfortable with other disabled people, but it made me more at social ease with able-bodied people than I had been since I left that amazing Special Ed school at the age of ten.

Much of my life since coming to Berkeley fourteen years ago, and coming out shortly thereafter, has been focused more on my evolving gay identity than on my disabled one, but I have finally learned that disability's early and continuing impact on my life has been profound. By comparison, the ripple effect of being gay has been minor. Having disabled friends for the first time in many years has shown me that I can share things with them that able-bodied people don't understand nearly as easily or intensely; dealing with gay men has made me realize that my disability affects the perceptions and behavior of others more subtly and sometimes more destructively than I'd ever wanted to admit to myself before.

You'd think that I'd now be eager to seek out a social and political home among other people with disabilities. To some extent, I have, largely with my writing for BENT. Yet in many ways, I still feel lost and alienated, which makes me feel and do things I'm ashamed of. For example, I should be happy that other disabled people younger than I am are successful, educated, employed. I am . . . most of the time. I am of an earlier generation, and because I've hovered silently on the edges of the formal disability community for so long, most people have no sense of my self, my story, my track record. Do I expect these younger people to bow as I pass, write me effusive notes of thanks, help me get jobs that I can't seem to get? No, although such responses are gratifying to contemplate.

No, I really don't expect them to be any more grateful, compassionate, or supportive than I, alas, had been in dealing with the disabled generation that came before me. And it would be unseemly for me to carry on about what I was accomplishing before they were born; I am far too young at thirty-six to bluster like some old soldier long retired from combat, too much involved in the present to carp in a curmudgeonly way about lack of respect for past efforts.

Perhaps if I felt more like a part of the community, I would be less likely to wince at the conduct of other disabled people like my roommate from the hospital, or others I get grouped with whose behavior makes me crazy. Were I truly part of the community, I could be more compassionate, see their lives from a more humane vantage point, not feel threatened or dragged down by them in any way.

But years of conditioning and experience have taken their toll. No matter how many disabled people I am close to, no matter how many of them I love and cherish, I am still the solitary pioneer and advocate, trying desperately to push events forward and change societal perceptions. I can talk about disability for hours, write about it cogently and movingly, explain it to the rest of the world, but I still don't really know how to live a complete and fulfilling life as someone with a disability. No amount of training or mentorship could prepare me for such a task, and I am not sure my experiences have taught me any lasting or productive lessons about it, either. I may at one point have been a Great Explainer, but talk is cheap; I may have enlightened or enriched others, but I myself am still confused.

This piece has not come easily to me, perhaps because I have finally faced some hard truths, perhaps because I have added to an unhelpful complex of myths while pretending to tell the truth. Am I just a superannuated former prodigy who has not yet figured out a way of being a grownup? A spoiled elitist out of touch with the difficult realities of being disabled? Or am I genuinely marooned, someone trained for a set of specific purposes who was so blinded by the joy of being a public talking head that I never learned how to be fully alive when no one was hearing or reading my words?

I am open to all these interpretations, and now, having broken my silence, I wonder now how my shame and discomfort will resonate with you, my audience. Do I feel better for having gotten all this out in print? Definitely. Do I understand my strengths and flaws more fully now? Certainly. If I had that hospital stay to live over again, would I behave any differently toward my roommate, who demanded the only remedy he knew for a pain I couldn't understand? I am not sure, and that lack of compassion scares the hell out of me. Was this alienation what those who trained me had in mind when I began my transition into the larger world? I'd like to think that others sensed my rootlessness and frustration and tried to help, especially my Cousin Barbara, but she and I never had that conversation.

Let it begin now, with you.

©2002 Danny Kodmur


Danny Kodmur
lives and writes in the Bay Area, where he has now spent half his life. His next piece for BENT will be a decorously scandalous exposé of sex and dating in the online world. Until then he welcomes your comments at dkodmur@comcast.net.



BENT: A Journal of CripGay Voices/January 2002