with a twist
by Danny Kodmur
Presented at the
Queer Disability Conference
San Francisco State University
June 2 & 3, 2002
begin, I want to invoke the memory of my cousin Barbara Faye Waxman-Fiduccia,
a warrior for disability rights, a crusader for sexual and reproductive
freedom, and a strong ally for the GLBT community. Were this a
fairer world, she would be here, at this conference, in this audience,
urging us to tell the truth and move forward. So in her spirit,
I will do just that.
I titled my presentation
"Balcony Scenes with a Twist" because I love the theater. For me,
as both a viewer and a participant, the world of theater is one
of fantasy and of freedom, where anything is possible. Balcony scenes
are iconic in theater as a kind of turning point, a romantic crossroads.
For me, there are three famous balcony scenes which illuminate not
the possibilities but the limits of romance for us as queer disabled
people. I mention the first one, in "Romeo and Juliet,"
because I'm a literature junkie, and the second, in "West Side
Story," because I am a proudly obsessive musical theater queen.
Now whether you picture
Leslie Howard, Leonard Whiting, or Leonardo Dicaprio as Romeo in
tights doesn't matter. What matters for us as crips is that no way
will we be scaling any walls or diving passionately into any swimming
pools. Neither of these Shakespearean romantic scenarios is remotely
accessible to people with disabilities.
"West Side Story"
is slightly different, perhaps because everyone involved in its
creation was queer, perhaps not. In any case, progress has been
made; access improvements are evident. Fire escapes replace balconies,
and railings and landings are conveniently placed throughout. There
is even another layer of reasonable accommodation happening here;
since the lead actor had a singing impairment, he was immediately
paired with a musical surrogate. But we are still not painting a
scene that has resonance for disabled people.
However, the third tableau
is a horse of a different color. In this balcony scene, two beautiful
people are again the main characters, but there is a third person,
lurking in the shadows. He, Cyrano de Bergerac is brilliant, courageous,
disfigured, insecure, a martyr. The woman he adores stands on her
balcony above; the beautiful and vacuous man she loves is her scene
partner, but he hath not the words to woo her with. These words
his friend Cyrano supplies. Without the noble wizardly monster in
the shadows, love does not happen. But it happens for someone else,
not for him. When the woman he loves recognizes years later what
has happened, it is too late, for he is but minutes away from death.
This is the image which
has always resonated for me, and other crips I know. Romance is
out there to be sure, but we can only observe or make love happen
for other people, not for ourselves. Why does this happen?
Because we as people
with disabilities are not seen as distinct individuals by many able-bodied
people. Our individuality is obscured by our status as icons, carriers
of myths and fears and hopes projected onto us by others. People
see us, and they see our various disabling conditions, either as
threats or as tragic burdens. Disability means imperfection means
loss means illness means death.
Not all the images are
sad. Indeed, some are hopeful, arising out of a neurotic and guilty
need to see the optimism lurking in our perceived despair. This
is how I've ended up being categorized as a happy warrior, a spunky
spirit, as "the most courageous person I know."
As disabled people we
also bring our own negative inheritance into any interactions with
the outside world. From a young age, I was lucky enough to be taken
seriously as a capable intellect; this meant I ended up with exhaustive
knowledge of my disability's ins and outs, its technical details.
In this way, I was much luckier than other kids, who were just acted
upon without being told anything, but my wealth of knowledge had
its unintended consequences. I could tell people exactly which muscles
in my body had been surgically altered and why, but I could not
have discussed my body's acting in concert with my mind and heart,
or my bodily capacities for giving and receiving sexual pleasure.
I was not told anything about these matters; later life experience
would alas be my sole teacher.
With such issues bubbling
beneath the surface of many social interactions, is it any wonder
that queer disabled relationships are so hard to achieve? Would
you have lunch with someone whose battery of adaptive technology
reminded you that your body was fated to decay and die? Would you
consider sleeping with the bravest person you knew, or would you
say he's too good for such base, common things, and cover him in
praise and respect rather than kisses?
If you're a crip, whether
you know nothing about your body or whether you know too much, have
you talked about being sexy? Have you considered your ability to
turn someone on? Have you turned yourself on? I say here to able-bodied
people that you need to see us as people, not as the abstract living
embodiment of everything you feel about courage and fragility and
illness and death.
I say here to crips:
Don't ignore your disability. Anyone with an ounce of sense knows
that it permeates more aspects of your lives than even you realize.
But know that we are not the embodiment of disability. We are more
than broken vessels, used cars with defects needing to be disclosed,
or machines that malfunction periodically. We are fully human beings,
searching for intimacy, companionship and community that can add
depth and meaning to our lives. Some of us want flings, some want
to get married, but I think we all want to obliterate the loneliness
and isolation which can disable us far more severely than anything
with which we may have been officially diagnosed.
As I look over what I've
written, I realize how little of it is specific to us as queers
rather than us as disabled people. Maybe I've framed things this
way to spur people to read my columns online, which take my ideas
in somewhat different directions. Or maybe I'm just discouraged.
My disaffection arises from pure lesbian envy. I look at how strongly
women are represented at this conference, how vibrant the trans
components are, and I am mostly happy, but also a little sad, largely
because I sense that bi and lesbian women as well as the trans community
are so far ahead of gay men on the subject of disability. EI, MCS,
cancer, reproductive health, sign interpreting, and wheelchair access
have all become implicit areas of awareness in these communities
over the last several years, but what of the men?
I don't mean to suggest
that gay men are indifferent to their bodies, far from it. I think
a forum on the dangers of Viagra, or on the tragic barbarity of
infant male genital mutilation would draw a huge crowd, but not
necessarily a presentation on disability issues. If I sound bitter,
it's because I suppose I was hoping that one of the only good things
to have come out of the horrors of the AIDS epidemic would have
been a heightened disability consciousness.
I never saw that happening.
Instead the saga of AIDS began as a narrative of illness, then of
death, then moved back to illness, then transformed into chronic
manageable illness, and now it seems to have regressed into frightening
denial, at least judging by the spread of unsafe sex and the rise
in infection rates. Even as PWA's got shlepped around by the dozens,
pushed in wheelchairs down the avenues of countless pride parades,
I looked in vain for any acknowledgment that HIV was a wakeup call
for the gay male community to think seriously about disability.
There are huge areas
of GLBT life where women's voices have gone unheard, and where trans
concerns have been ignored, but I'd like for us to consider the
possibility that when it comes to disability, the inverse might
be true. I may be struck by lightning for even daring to raise the
possibility of male marginalization in this environment, but hear
me out a minute. Straight male patriarchy hurts me as a gay man
because it is homophobic. Gay male
patriarchy isn't quite the right word, but stupidity doesn't seem
a weighty enough termgay male denial and blindness and insensitivity
hurts me as a gay male crip because it creates a world of infinite
trait checklists, a world where you choose a boyfriend with the
same minute care a finicky five-year-old uses in custom-ordering
In such a universe, where
even men with wondrous partners catch themselves furtively scanning
a room for someone better, and given the obstacles I've discussed
today, what chance do we as crips have unless we demand a refocusing
of the conversation? I will not insult anyone here by claiming that
this oppression is equivalent to that suffered by others, nor even
that it is similar, but I will submit that it is analogous, and
that as gay crip men, we are profoundly injured and intimidated
by it, driven deeper into a closet of frustration and exclusion
regardless of the privilege others might ascribe to us via some
absurd social calculus of oppressions.
Let's change that. Let's
talk each other up onto those balconies, and then let's help each
other move there physically. The fight for love, the eternal struggle
against loneliness, demands from us no less.
© 2002 Danny Kodmur
writes frequently for BENT.
His reflections on the conference overall can be found here.