LIFE UNDER THE SPOTLIGHT:
DISABILITY AND DEPRESSION
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.
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.
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.
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.
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
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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,
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
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.
essay was originally published, in slightly different form, in
the summer of 1999. I wrote it because I had to; I wanted desperately
to be able to explain my behavior, both to myself and to the world.
In some ways, writing and sharing it proved cathartic; the cost
of hiding and posing was getting to be as much a burden as the
as the years have passed, and as my depression has become more
episodic than chronic, I find I'm less open about it, and I'm
not sure why. Maybe it's because I don't want to pick up the habit
of using it as a convenient excuse. Perhaps I keep it in the background
because I don't want others making insipid claims that Depression
is the key to Danny. After all, who wants to be simplistically
labeled and explained away?
maybe the real reason I keep it somewhat secret is that I still
fear exhausting the goodwill and patience of the people in my
life. If they try to help, and they sense me resisting, or if
they find, as I have, that there are no quick fixes for my depression,
will they give up and walk away? Or worse, assume in some knee-jerk
Dr. Phil-ish way that I am this way because I want to be? Will
they blame me, and will I blame myself for alienating them?
to support, medication, counseling, and hard work, I am not nearly
as depressed now as I have been in the past. My good days inspire
me, and my bad days are more likely to have a finite end. The
good days don't mean I'm miraculously cured any more than the
bad days mean I've made no progress; they are just signposts,
not indicators or omens.
know whether I've gained ground against the Panic, but I do know
that each column I write lays down an additional mile or two of
solid road through the swamp that formerly engulfed me. In this
new year, I look forward to seeing where this road I have made
may take me.
©2003 Danny Kodmur
Illustration, "Double Indemnity" © 2003 Robbo
Let us know what you
think of this BENT feature.
resides, writes, and tries to figure his life out in the Bay
Area. Write him at email@example.com.
Disclaimer: Any correspondence containing the phrase "Cheer
up!" will be ignored.