It’s Sunday morning. Drinking coffee, I phone my cousin Andy, who I not only love, but consider a friend. I’m happy – she’s buying three copies of my poetry chapbook. Everything’s great until....she utters the dreaded “I” word. “With your vision impairment, you’ve done so well!” Andy exclaims, “I’m giving your book to a grandmother of a handicapped child. You’re an inspiration!”
How fleeting happiness is!
“‘Handicapped’ is so old school....so white bread and mayo with corn beef,” I say. “‘Handicapped’ conjures up a beggar, cap in hand, I explain, knowing I’m being a scold, “we prefer ‘disabled.’” (Reclaiming pejorative insults, many of us proudly call ourselves crips. But, I keep this to myself, not wanting to be too jarring.) We put our tin cups in the cupboard years ago, I want to say, now one of us is governor of New York.
I think of the many vibrant, contemporary poets with disabilities. Of Jim Ferris, who “sings of cripples” in his compelling Whitmanesque collection “The Hospital Poems,” of Petra Kuppers and Neil Marcus, who rock out in the forthcoming “Cripple Poetics: A Love Story (Homofactus Press). To name just three.
The spring 2008 issue of “Disability Studies Quarterly” has a special poetry section featuring 13 crip poets. These poets, by turn, lyrical, angry, wistful, ironic and playful have radically different esthetic styles. Some are neo-formalists, others concrete and some write in free-verse. None are ‘inspirational.’ Not in the super-heroic or long-suffering box that our able-bodied dominated culture wants to stuff us in. The Miracle Workers, Tiny Tims and Hunchbacks of Notre Dame have left the building. I have been to crip poetry parties.
News Flash: We are as egotistical and competitive — as hungry and boozy (we poets love to eat and drink) as any self-respected able-bodied bard.
I come out of my reverie when Andy clears her throat. I go on, before she speaks. “You know how annoying I can be,” I tell her, “I’m not letting you get a word in edgewise. I’m the Darth Vader of the plant world! Flowers wilt when they hear my name. How dare you say I’m ‘inspirational!’”
“But you are!” Andy says.
“No! I’m not,” I say, “This ‘inspiration’ thing is what’s wrong with how able-bodied people tell our story.”
“Well, I know your history!” she says, as if that gives her the right to spout the I word.
You love me, but no one can really know my history but me, I think. But, I hate getting mad before I’ve had my second cup of coffee, and who wants to fight with a fav relative? I turned the talk to family and politics, and we hang-up friends. Yet, this spat makes me wonder: do we want, like a cat peeing to mark its territory, to mark our stories? Not only do we tell stories in order to live, as Joan Didion famously said, but few things define or empower us more than our stories.
Paddington Bear knows this.
Fifty years ago, Paddington Bear came to life in the mind of author Michael Bond. Since then, the small creature has lived in the hearts and minds of children of all ages. Including me. Why do we adore Paddington? After all, the small creature’s obsessed with marmalade, makes a mess getting out of his bath and gets sticky cream on his fur. One reason we love him is because he knows he has a past and relishes telling his story.
Paddington was raised by his Aunt Lucy in Peru. He stows away in a ship when his Aunt moves to the Home for Retired Bears in Lima. The small bear loves to tell the tale of his journey which ended in the Browns’ London living room, after being found by the couple in Paddington train station.
Paddington falls asleep as he’s relating his story, but only because his adventures have been so arduous.
We like hearing the Small Bear narrate his history and knowing that he’s decided what to say in his story. (Bond let’s Paddington say what happened to him, rather than having the other characters recount his adventures.) To put this in words that would really make the Small Bear snore, Bond empowers Paddington to shape his own narrative.
Being able to shape our own narrative is important to all of us. This is especially true for those of us who historically have not been allowed to tell our story. Who have been silenced (figuratively or literally) as others have controlled our narrative.
I’m a middle-aged lesbian. When I was a teenager in the late 1960's, most stories of folks like me were tales of deviancy – of sin. Liberal narratives about us were compassionate. They shouldn’t be jailed, they said, they’re sick, not criminals. They offered tales of treatment. (Homosexuality was considered a mental illness by the American Psychiatric Association until 1973.) Then, the concept of homophobia didn’t exist. Prejudice against gay people was as pervasive as the air we breathe – so omnipresent – that few (whether queer or hetero) felt its presence. “Ellen” or “Bravo” on TV would have been unthinkable, let alone gay marriage. Then, not only could we not name who we loved, we couldn’t tell the stories of our lives. If we did, it was often in code. We’d use language such as “a friend of Dorothy.”
Those of us with disabilities, too, haven’t had control of our stories. When I was growing up, you’d never know that disabled people used deodorant, brushed their teeth or worked if you looked at TV or went to the movies. You’d see us as sick kids on telethons or as amnesia “victims” in soap operas or in flicks like “Wait Until Dark” (where Audrey Hepburn gets stalked). We were super-heros like “Ironside” and ‘inspirational” in “The Miracle Worker.” But we were rarely what we mostly are – ordinary human beings.
Of course, throughout much of the history of this country we haven’t been able to (literally) be out. Until 1974, many cities, including Chicago enforced “Ugly Laws” which prohibited people with disabilities from being out on the streets.
Yes, you read that right.
If you were “diseased” or “deformed,” you could be (and were arrested) if you had the nerve to be out....on a street, in a restaurant or in a store. Many states had laws which prohibited disabled people from getting married. Some of these laws were on the books until the 1970's. People with disabilities (such as the New York League for the Physically Handicapped) staged sit-ins during the 1930's when they were left out of New Deal job programs. Disabled soldiers guarded Lincoln’s body as it was readied for his funeral. They were veterans who were wounded in the Civil War. After being in the hospital, they’d reenlisted. Some missing legs, others missing arms, they nursed wounded soldiers and guarded Confederate prisoners. Their story isn’t in the history books.
People with disabilities served on the Home Front and overseas during World War II. For the first, and perhaps, only time in history our contribution was valued, because so many able-bodied white men were away fighting overseas. Like African-Americans and women, we got a chance to work and serve.
In 1995, on the 50th anniversary of the end of the War, I interviewed several alumni of Gallaudet University in Washington, D.C. in Akron, Ohio, where the Goodyear and Firestone tire companies converted to defense plants. Deaf people worked on the airplanes that were made there. The late, May Curtis, one of the people I interviewed at Gallaudet, worked first in Akron and then as a typist at the Pentagon.
“It’s not in the stories in the history books,” she said, folding her arm and holding up her fist to look like Rosie the Riveter, “but I was there! I was the deaf Rosie!”
Thankfully, things have changed for both gays and lesbians and for people with disabilities. Unfortunately, homophobia and ableism (prejudice against disabled people) still exist. Some in the culture still try to spin our stories. Homophobes try to limit marriage to be only between “a man and a women.” They attempt to define us as sick or sinful. Yet today, this homophobic narrative isn’t the only (or in increasing parts of the country) story about us.
Last month, thousands of gay and lesbian couples from all over the country got married in California. True, there will be a backlash against this, but we won’t let our gains be set back without waging a hell of a fight. Or telling a helluva good story.
Today, there are more talented queer playwrights, writers and poets than I could possibly name. Our narratives are being shaped by everyone from poet Mark Doty to playwright Tony Kushner. And, we’re fabulous characters in stories like “Sex and the City,” that appeal to everyone, gay and hetero alike.
We, who are disabled are also kicking storyteller butt. We’re starting to shape our narrative. This month is Disability Pride month. On July 26, the 18th anniversary of the Americans with Disabilities Act, the 5th Disability Pride parade will be held in Chicago. Other Pride events will be held nationwide.
Writers, poets and playwrights like Petra Kuppers, Jim Ferris, Stephen Kuuisto, Lynn Manning and the late John Belluso are creating narratives that come from within the disability experience. They are telling stories of how we live as people with disability. They tell tales of what we do with, not what we do in spite of our disabilities. Poetry doesn’t try to persuade or sell, poet, playwright and author of “Anna Nicole” Grace Cavalieri told me once, “it rinses off the cobwebs and makes us see through a glass clearly.”
That’s what happens, if you’re a talented creative artist and able to shape your narrative.
That’s my story and I’m sticking to it.