DOES IT MATTER?
Wrestling with the
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
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.
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
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
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
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
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 sonot
to drive us crazy, but perhaps instead to begin working out for
ourselves the complex metaphysics of disability.
© 2000 Danny Kodmur
chronically overeducated and underemployed, lives near Berkeley,
CA. You can reach him at firstname.lastname@example.org