Identity

Last year I decided I'd developed enough theater chops to apply for a National Endowment for the Arts Solo Theater Artist's Fellowship. As part of the application I was asked to present a statement describing my "theater aesthetic" (in one page or less). I panicked: How the hell do I say all I want to say about being a middle-aged female Cripple sexual abuse survivor writer performer in one lousy page? After re-reading my "turning point" poems and whining to my friends about the futility of doing this, I gave it a shot. Here's the bulk of that effort:

It begins with the body. Different. Electric.

"Mine are the hands of your bad dreams . . . Booga Booga"

"I can probe and pry your secrets with these almost boneless fingers"

It's my poem, the story of my life, their poems, the story of our lives "I'm an epitaph for a million imperfect babies left untreated"

"I'm an icon carved from bones in a mass grave at Tiergarten, Germany"

"I'm withered legs hidden with a blanket"

It's a love song. It's a cry for help. It's get the fuck off my back. It's rock 'n roll.

Theater. Performance Art. One on one in the spotlight.

A poster child gone awry. A woman who sits in a chair on wheels and hauls sacks of self-doubt as if she were a stevedore. A shy kid playing with words. A teenager choking on daddy's love in her mouth. A gnarly-boned crone. A sassy girl.

The Gimp. The Cripple. The Crazy Lady.

The Woman With Juice.

At the age of 37 I began my professional career with the newly forming reader's theater, WRY CRIPS, where on stage I sat, script in hand and told my poems and stories with other disabled women telling their poems and stories. Until WRY CRIPS, I didn't know I had nothing to apologize for.

But I don't like to sit still. I found the script-in-hand confining. I talk with my hands, am aware they command attention. As an artist that's an asset, a tool. This big chrome and leather wheelchair I'm using this incarnation has a heavy metal presence, has distinct music. Assets. Tools. After four years I moved onto a solo stage so I could have more freedom to experiment. (Stage is a euphemism. Mostly I've sat in front of stages; my wheelchair doesn't levitate.)

I play around with words, sounds and movement. Sometimes I discover something fine, curious, funny. I refine it until it's what I think of as art. It hits me in the bones; I'm telling the truth. But it ain't the whole truth and nothing but. It's truth sharpened. And it's no longer just about me.

I put poems together to tell stories. I add monologs or songs. Sometimes jokes. I know as a Cripple and a woman I'm expected to be nice. But I'm not nice, I'm female. And I have a tough job to do. I have to knock people off their complacent butts, seduce them into opening their weary telethon assumptions, and take them on a ride into the heart of difficult matter, deep enough so that it seeps through their pores rather than through the tops of their heads. I want my work to be powerful art so it can transform their lives as it has transformed mine. I want my audience to give a damn beyond the curtain call.

Always I'm telling my stories to a lonely 15 year old Cripple girl sitting in front of a mirror trying to tell herself she's not a freak, not other. If I'm not communicating with that girl, then my art is incomplete because she is my most precious audience. She's why I am an artist.

But Cripple doesn't exist in a vacuum. Before I was disabled I was female, a Catholic, a pretty white girl, a smart kid, a member of the lethal middle-class with its dirty underbelly of incest, alcoholism and deceit. And now I'm a middle-aged woman, a sexual abuse survivor, a recovering Catholic.

Last week I received word: I'm being awarded the Fellowship. That's right. A flamboyantly gnarled, in-your-face Cripple is receiving the NEA stamp of legitimacy as an artist. The review panel of theater artists got it: disability is a culture and what I do is valid cultural art. I and other disabled artists (whom I'll be writing about in future articles) are creating poetry, literature, theater, music, dance and art that enriches the cultural landscape. It's about Identity. Not that narrow, bloodless "I am who you say I am" identity, but the "This is me as I see it, feel it, taste it, smell it, hear it" Identity. Cripple coming at you from the inside out.

When The Rag gave me the go-ahead to do a regular feature on disability culture, I was jazzed. But then I got to thinking, what have I gotten myself into? How do I kick-start this? What should I focus on? It's not that I don't think about disability culture. I do. It's replaced alcohol as my drug of choice. But it's an enormous subject. I get lost in it all the time.

So I'm starting personal. I figure if I'm going to be taking up Rag space fairly often, you got a right to know who I think I am. Besides, it's what culture begins with: Identity, I am.

I started life 46 years ago as a regular person. I was everything the dominant American culture could ask for: white, middle-class, able-bodied, Christian (although we were pushing it with the Catholic bit), a future heterosexual, and even though I was female and, thus, not as prized as a male, I was the kind of female that is most acceptable: bright but not too bright, pretty but not too pretty. Regular.

I'm not exactly sure when I slipped off my perch, but I suspect it was when my rheumatoid arthritis became unavoidable to the naked eye. When my hands went gnarly on me. Of course, in tandem with the gnarly paws came galumphing gait, orthopedic shoes that looked like something Frankenstein felt weren't attractive enough for his monster, frequent absences from school. At 16, the real kicker: the wheelchair. And we're talking prehistoric times here, the mid-'60s. No heavy metal power jobs, only manual numbers that looked like just what they were: extensions of the institutions whose sickly green and blah beige walls they matched. In a few years I'd gone from "Isn't she pretty" to "Isn't it a shame."

I didn't take well to this new identity. "It's not polite to stare at handicapped people." The tone of voice. The perpetual "awwwwwww." The smile and bend of the head in my direction, like looking at a puppy with an amputated hind leg.

And the flip side of all the pity-patters. "Hey, where's you get those hands, the old age home?" "Doing a Frankenstein imitation?" "You know what's uglier than a cripple" Ha Ha Ha, Nothing."

Being handicapped was a raw deal, from my perspective. "Special," indeed. A loss of rank, of privilege. I was neutered. A pod person: Cripple. All the other things didn't amount to a bucket of snot. Cripple was THE NAME, the only identity that mattered, and just like the majority of people who have an identity that gets them treated like utter shit, I loathed it.

Okay, so I come from a fairly typical Cripple background. The name of the game is how the hell do you get from there to H*E*R*E in one mortal lifetime? Well, it has to do with that real basic I am: Identity. But not identity defined by the people who claim you "other." The worshippers of regular. The culture that has at its core a fear and loathing of different.

When I was a teenager becoming a Cripple, the happiest times I had were those spent in a children's convalescent hospital (the Con Home as we called it), where I lived with other teenagers becoming Cripples. To them I was not the other. It was here a seed got planted in me that I was connected to a group, and that as a group we had things in common that belonged to us that did not belong to the "not becoming Cripples" population. Although none of us could've articulated it, we had a community and as members of that community we created our own culture. We were "Con Homers," THEY were "normies."

When I looked around at the kids who made up my group, I find myself thinking: it doesn't get much more interesting then this. That something about this difference we were really was "special." Oh, not in the way the normies meant special, but unique, different, interesting. I thought we were a flat out gas, funny and strange, and when hanging with my group I had a hard time understanding why we were so low on society's totem pole. A seed was planted in me, that our differences have value, a seed that would serve me very well later. Unfortunately, the minute I got back into the "real" world, which meant being the only disabled person around, I hated Cripple again.

Like millions of disabled people, I spent years, isolated, depressed, connected only to the loss disability means. I hated my body different because all I could feel of it in my isolation from others like me was its oppression. The way it separated me. The way it hurt me. The only images I ever saw of myself were a beggar on the corner selling pencils from a tin cup and Jerry's Kids, those doom-drenched poster children, and from these images I felt shame and humiliation.

In my "homebound" isolation, I read a lot and the TV was always on. I'd carry A Member of the Wedding with me in the chair so I could read over and over passages that spoke eloquently of being other. I loved Frankie Addams. To me she was real. She was me. In casting myself as the hero of a novel, I could feel important, alive. I wasn't this pd creature trapped in a suburban Marin house with no ramp and no future, I was Frankie, desperately searching for "the we of me," I was Cheryl the Hero, in search of herself. As odd and dysfunctional as it may seem, I consider my ability to imagine myself out of that house, my ability to imagine myself as something completely different from the isolated Cripple I was, a major gift. Again, a seed that would in time grow into an ability to question the definition of Cripple I was handed.

Television may be a wasteland, but its what I had. And one thing all survivors learn to do is work with what you got, take shit and grow roses with it. I found images on TV of Different and I grabbed hold of them with all my might. Barbra Streisand, so deliciously, gorgeously Jewish, so un-regular. Flaunting her significant nose at all those worshippers of regular. I loved her. I wanted to be her. At times I felt I was Barbra.

I loved poetry. The stuff that gets described today as hokey. Poe's "The Raven," Amy Lowell's "Patterns," Vachel Lindsay's "Congo." Too too dramatic, all those swelling, swooping rhythms, anything I could throw myself into, my voice so full of itself, carrying me beyond the pale tight walls. But I had no idea there were living poets, that poetry was alive and well in the streets and ghettos and back wards until one day I saw Maya Angelou on the Merv Griffin show. Maya, magnificent Maya.

Dark skinned and ample fleshed, tall and broad shouldered, a voice like drums and cellos, like howls and purrs, celebrating her glorious differentness in flowing, bright robes, using rhyme and rhythm, language so rich, so vivid. The fullness and ripeness of her womanliness, refusing to bend or quiet or pale herself. Taking up space. And the poetry of Female, Black, African, Goddess and Nigger. It was all right there. Poetry with hips, a Woman with Juice telling the awful exquisite truth. And I loved her. I wanted to be her. Sometimes I felt I was Maya.

I watched Soaps every day. All those regular folks getting knocked up, locked up, driven insane, miserable, going to hell and back for love five days a week. Escape. And then one day, the town bad girl of my favorite soap disappeared and showed up later in a different body. Victoria Wyndham was wild, all eyes, teeth and hands. At first it was jarring. Her differentness annoyed me. I watched Soaps to avoid Different, to escape into that fantasy world of regular. But the more I watched her the more she compelled me to keep my eyes on her. There she was, using everything about her, all these things I'm sure she'd been told to downplay because they weren't the usual feminine actress package, using them as if they were assets. The more I watched, the more I began to sense there is a power in being different.

I wish I could say I immediately internalized the Power in Difference message I got from seeing these women, applied it to me as a Cripple woman, broke through the walls of isolation and depression, felt whole, powerful and ready to take on the world. Sorry. My personal script writer just ain't that talented. What I had were seeds of possibility, but there was nothing in my environment to nourish them. Every message I got about Cripple was negative. Barbra had her Jewishness valued by Jews, Maya had a rich heritage of Black women, and even though Victoria was a standout from other Soap actresses, she was still, by most standards of American beauty, beautiful. I, on the other hand, had never once seen a positive reflection of myself anywhere. My Different had no validation from any culture. Oh, I had a nice teacher who once gave me a book about Helen Keller, hoping it might inspire me, but to me that was like looking to the Virgin Mary as a role model — how many of us are cut out to be the mother of God? So mostly I just felt like I was an alien, growing more alien as I grew more disabled.

A long time coming but the miracle happens. I find a way out of my isolation. Quite by accident I hear about a "movement" of Cripples. An Ed Roberts interview. Although the AB interviewer was gosh-be-gollying all over the place, Ed would have none of that "I Am the Hero Cripple." He kept talking about access, about equality. The name of the story was Independent Living. The name said it all. You'll never convince me actions speak louder than words. Those words were shouting, singing, wailing FREEDOM to me. All of a sudden those seeds in me were getting a long, cool drink of water. Of course, a drink of water does not a meal make, but how it felt like promise to me. Oh, I still had fears, doubts and a major lack of self-esteem, but now I had allies. I could call the Center for Independent Living in Berkeley and talk to other Cripples. Cripples living on their own, using attendants, getting around in power wheelchairs. Power, yeah. Survivors who shared their survivor knowledge with me, welcomed me, encouraged me. To them I was not hopeless or helpless, but oppressed. I was not just some poor victim of a disease, I was a member of a disabled minority being victimized by injustice, discrimination and infringement of my basic rights.

It took a few years for me to finally get out into the world. Just because the resources were available to facilitate my escape didn't mean that there was easy access to them. The ramp to freedom is mined with catch-22s and enough red tape to choke even the most motivated of freedom questers. Add to that bouts of self-doubt and a personal environment of nay-sayers and that ramp can feel pretty shaky. But those words: Independent Living. They're so powerful, so ripe with promise. They lived inside me and kept feeding me hope.

Once I was in the community, I joined everything. SuperCripdom 101: full-time student, peer counselor, President of the Disabled Students' Union, member of student government, serving on this, that and the other committee . . . My Letters to the Editor of the paper were so frequent I might as well've been given my own column. Every mention of disability was political. I wasn't a person with a "damaged" body any longer, I was "we, the disabled people." It felt like perpetual sunshine to me. It's as if after so many years of being defined only by my body and only in devaluing terms, I stopped having a body. Even socially, when it was just us crips together, we never talked about our bodies, our disabilities, our physical realities; we talked political action.

At first I found this political focus a relief, energizing. Okay, maybe I was in denial, but I was getting a helluva lot done. The point of view at the time was that it was necessary to advance the cause. We had to over-emphasize the political and downplay the physical to fight continually being cast in medical terms. Don't give the oppressor ammunition to oppress you. But in the process we inadvertently oppressed ourselves by creating a new limiting image of who we are: the able-disabled.

It's too easy to look back from the cozy vantage point of twenty years later and say it was a mistake. That it would've served us better to look more deeply into who we are and tell the truth, but we were struggling for a first disability cultural identity and so we did like most devalued groups do: we defined ourselves in reaction against the oppressor's definition. Instead of saying: Mine is a body of value, we said: I am not my body. Unfortunately, this denial of the body influenced our political priorities in ways that didn't always benefit the greatest numbers of our people (bus access before attendant services); it shaped our use of language (erase rather than dignify the word Cripple, argue ad nauseam over the appropriate euphemism for disability), and it left a lot of our people feeling they were still "other" because they could not meet the prescription of able-disabled.

I wish I could say I began to actively question the movement's reliance on this new able-disabled crip image, but the truth is, I didn't understand why I was beginning to feel more and more out of sync with the "disability is a social construct" point of view. I felt frustrated because I couldn't live up to the image but I figured that was my problem. I was pissed as hell that no matter how many political speeches I made, my body kept calling the shots. It's as if my body was saying to me: "Listen, girlfriend, you can tell THEM whatever you think you need to make things happen, but you lie to yourself and you're gonna be in deep shit."

And sure enough, deep shit hit the fan. It's amazing how educational it can be to have no choice but to lie in bed and listen to your body. She's got quite a voice: "You deny my pain and struggle, then you deny my beauty and grace." Trying to understand this was like swimming through tapioca. But it's what kept running through my thoughts. Over and over. And as I was listening, I kept flashing on a painting I had recently seen by a Mexican artist named Frida Kahlo. The vividness of her pain, her lush, sensual femaleness. You deny my pain and struggle, then you deny my beauty and grace. It began to sink in. What was missing in the political, able-disabled crip identity was a true esteeming of the Cripple body. The ways it moves. Its forms, textures, tones. Its pain and loss. Its extraordinary variety.

Frida Kahlo's work was a beacon. Its radical imagery shed light on all the feelings I'd had about the power of different when I first saw Barbra Streisand, Maya Angelou and Victoria Wyndham, and it did it in the name of Cripple woman. It woke up memories of the Con Homers and I was able to relive the joy I felt at our strange specialness. I wanted my disability identity to be as fully human, as vibrant and full-bodied as the identity I saw in Frida Kalho's work.

Once I was able to articulate these thoughts and feelings, I discovered I wasn't alone. Activists were asking: who of our people is being left out of this new disability identity? What are the issues we ignore because they are connected to feelings of shame about what our bodies can't do? Activists began to talk about how the political struggle for justice and full citizenship could be strengthened if more of our people felt empowered, and that the source of empowerment is telling the truth about who we are.

Artists began to emerge from the community. Artists whose work not only reflects our people's accomplishments and struggles, but in form and content attempts to express an aesthetic of disability. I feel extremely privileged to be one of these artists. It is difficult to fully express what it means to me, what a validation it is to be able to write and perform the female disabled body, damaged and powerful, ravaged and exquisite. I know from firsthand experience the power of the creative imagination to define and transform human experience. I believe we need art as much as we need access, What an incredible gift it is to be able to spend my life working with other activist artists, embracing and celebrating this horrifying and exquisite journey called Cripple.