with a twist

by Danny Kodmur

Presented at the
First International
Queer Disability Conference
San Francisco State University
June 2 & 3, 2002

Before I 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 term—gay 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 a Whopper.

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.


BENT: A Journal of CripGay Voices/July 2002