Nicknamed the “Queen-Mother of Gnarly,” Cheryl Marie Wade was part of a group of disabled artists in Berkeley that formed in the late 1970s in parallel to Disability Studies. Disabled since her teenage years and a survivor of incest, Cheryl Marie Wade created a body of work made up of poems, one-woman-shows and songs, initially read aloud during women’s discussion groups, then performed in public, and, as her health declined, filmed on VHS tapes.
Her texts as well as those by her peers removed disability from medical discourse to show how it is a sensitive and shared experience of the world. They reclaimed the insult “cripple” to form the word “crip” and embody a pride that contributes to the foundation of a community and culture whose impact is being rediscovered as the issues of health, care, and disability are still gaining importance. Despite her influence on disabled artists in the United States and frequent mention in the seminal Disability Studies texts, Cheryl Marie Wade’s work has neither been published nor translated, and her archives held at the University of California (in Berkeley) have yet to be studied.
Disability culture. Say what? Aren’t disabled people just isolated victims of nature or circumstance?
Yes and no. True, we are far too often isolated. Locked away in the pits, closets and institutions of enlightened societies everywhere. But there is a growing consciousness among us: “that is not acceptable.” Because there is always an underground. Notes get passed among survivors. And the notes we’re passing these days say, “there’s power in difference. Power. Pass the word.”
Culture. It’s about passing the word. And disability culture is passing the word that there’s a new definition of disability and it includes power.
Culture. New definitions, new inflections. No longer just “poor cripple.” Now also “CRIPPLE” and, yes, just “cripple.” A body happening. But on a real good day, why not C*R*I*P*P*L*E; a body, hap-pen-ing. (Dig it or not.)
Culture. It’s finding a history, naming and claiming ancestors, heroes. As “invisibles,” our history is hidden from us, our heroes buried in the pages, unnamed, unrecognized. Disability culture is about naming, about recognizing.
Naming and claiming our heroes. Like Helen Keller. Oh, not the miracle-worker version we’re all so familiar with, but the social reformer, the activist who tried so desperately to use her celebrity to tell the truth of disability: that it has far more to do with poverty, oppression and the restriction of choices than it has to do with wilted muscles or milky eyes. And for her efforts to tell this truth, she was ridiculed, demeaned as revolutionaries often are. And because Helen Keller was a survivor, and that is the first thing any culture needs—survivors who live long enough so that some part of the truth makes it to the next generation.
Helen Keller was a survivor, so she pulled back from telling the fuller truth; that’s often what survivors have to do: they have to swallow the rage, wear the mask, and, yes, pull back from telling it exactly like it is so that there might be a next generation. And so, Helen Keller, a survivor, we honor you as our ancestor, our hero.
Disability culture is about naming
and claiming
OUR HEROES
Naming and claiming our hidden history, our ancestors. Like the thousands of mental and physical “defectives,” singled out for “special treatment” by the Nazis. Yes, disability culture is recognizing that we were the first victims of the Holocaust, that we are the people the Nazis refined their methods of torture on. So we must honor these unnamed victims as our ancestors, we must raise their unmarked graves into our consciousness, into the consciousness of America so it never happens again. And just as Native Americans insist the true name of discovery is genocide, more and more of us insist that the true name of “right to die with dignity” (without opportunities to live with dignity) is murder, the first syllable of genocide.
Naming and claiming our ancestors, our heroes. Like all those circus and carnival freaks, the first disability performance artists. Those rowdy outcasts who learned to emphasize their Otherness, turn it into work, a career, a life. Oh, it may have been a harsh life, sometimes even brutal, but a life: they kept themselves from being locked away in those institutions designed for the excessively different that have always been such a prominent part of the American economy. And so we claim these survivors as our ancestors and we honor them.
Naming and claiming our ancestors, our heroes. Now most of you probably know the story of James Meredith, freedom fighter, African American, who helped break the color barrier, the racial barrier to higher learning by insisting he had a right to an education; insisting.
And without that insistence, the doors of Ole Miss would have remained closed. But do you know the story of Ed Roberts, cripple freedom fighter, disabled man, who, armed with self-esteem and a portable respirator, broke the disability barrier to higher learning by insisting he had a right to an education, by insisting that the doors to the University of California at Berkeley be opened, and by doing so, laid a significant brick onto the foundation of the Independent Living Movement? Independent! Living! Movement! The language of it!—that revolution of identity and possibilities for disabled people. The independent living movement. Oh, you may never have heard of it. It never made it onto prime time. Norman Mailer did not rush out to capture its essence in 30,000 words.
Yet it took root; it grew; it spread all across this country, all around the world—because there is always an underground. Notes get passed among survivors. And the notes we’re passing these days say: there’s power in difference. Power. Pass the word.
So what’s this disability culture stuff all about? It’s simple; it’s just “This is disability. From the inside out.”
Culture. Pass the word. Now maybe the word is the moan and wail of a blues. Maybe it’s the fierce rhythms and clicking heels and castanets of flamenco. Maybe it’s outsider art. Passing the word. Maybe the word is authentic movement, that dance that flows from the real body notes of cripples. Maybe it’s the way pieces of cloth are stitched together to commemorate a life, to remember a name. Maybe it’s American Sign Language, a language the formed the foundation of a cultural identity for a people, Deaf people, and bloomed into ASL performance art and ASL mime.
Culture. Sometimes it happens over coffee or on a picket line. A poem gets said and passed along. And passed back. Amended. Embellished. And passed along again. Language gets claimed. Ms. Gay. Crip. Guerrilla theater becomes theater with a soul. Teatro Campesino. The Dance Theater of Harlem. And, of course, WRY CRIPS Disabled Women’s Theater. Radical. True. Passing the word.
Culture. Maybe so far you’ve been deprived. Maybe right now the primary image you have of disability is that of victim. Perhaps all of you know of us is Jerry’s Kids, those doom-drenched poster children hauled out once each year to wring your charitable pockets dry.
But I promise you: you will also come to know us as Jerry’s Orphans. No longer the grateful recipients of tear-filled handouts, we are more and more proud freedom fighters, taking to the streets, picket signs strapped to our chairs. No longer the polite tin-cuppers, waiting for your generous inclusion, we are more and more proud freedom fighters, taking to the stages, raising our speech-impaired voices in celebration of who we are. No longer the invisible people with no definition beyond “Other,” we are more and more proud, we are freedom fighters, taking to the streets and to the stages, raising our gnarly fists in defiance of the narrow, bloodless images of our complex humanity shoved down the American consciousness daily.
And these changes, they will happen, just as the Independent Living Movement happened, just as the Rehabilitation Act’s 504 regulations for access happened; just as the Americans with Disabilities Act—the most comprehensive civil rights law ever written—happened.
Because there is always an underground. Notes will be passed among survivors. And the notes we’re passing these days say, “There’s power in difference. Power. Pass the word.”
Disability culture. What is it really all about?
It’s this.
And this.
And t h i s .
Yeah, this —
COMING AT YOU FROM THE INSIDE OUT.
First published in The Disability Rag, September/October 1992, 37–39.