On Being (Un)Representative
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
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?
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
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.
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.
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
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.
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.
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.
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.
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.
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
©2002 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 email@example.com.
BENT: A Journal of CripGay