Kathi WolfeTIME TRAVELING WITH MY MUSE: DISABILITY AND THE ZEITGEISTI don't know how it is with you. But my muse, far from being patient or inspiring, is an impatient and demanding mistress. When she deigns to inspire me –– her prodding comes without warning, inconveniently, unexpectedly, like an emergency alert from a weather radio. One night around 10 p.m. in the spring of 2009, I was reading Growing Up Again: Life, Loves , and Oh Yeah, Diabetes by Mary Tyler Moore, when my muse's siren went off. Needing a break from poetry, and being an MTM fan, I checked out Moore's book. Because my mother had type 1 diabetes, I was curious to read about Moore's life as an actress and her experience of living with diabetes. Little did I know that perusing this memoir would lead me on to a three year adventure that would prove to be the most challenging chapter of my writing life. As I expected, Moore's life story was instructive. Her stories about being in show business were entertaining, and since I don't have diabetes, and my mother died when I was 18, Moore helped me to understand, as much as anyone can who isn't diabetic, what it's like to live with diabetes. This having been said, I'd thought that "Growing Up" would just be a quick read – that after I'd finished it, my break would be over, and I'd get back to work. My muse had other ideas. I'm usually skeptical when people talk of inspiration as striking, suddenly and quickly, as a lightning bolt. How many of us are struck by lightning or infused with genius like Isaac Newton when the apple fell out of the tree? I'm no Newton and my work definitely isn't the gravity of the poetry world. Yet paging through Moore's book, a vision, like a puppy scratching at the door, gnawed at my brain. Five characters (a husband and wife, their two children, and their dog) – a family living in the 1950s and early 1960s – sprang to life in my mind's eye. "Stop everything! Write their story in poetry," my muse commanded. Normally, I'm excited when I feel the seeds of new poems growing within me. Sometimes it feels like eons have passed before my creative juices are flowing. I'm thrilled when a dry spell has ended, and I'm juiced up again. This wasn't the case when my muse implanted the buds of these characters and their story and demanded that I make them blossom into poetry. Nurturing these buds was as appealing to me as searching for honey in a beehive. But there's no resisting your muse. Despite my resistance, I wrote a chapbook about the family of characters inhabiting my brain entitled The Green Light. The chapbook has not yet been published, but some of the poems in The Green Light have been published in literary journals, including Wordgathering. Writing rarely comes easily to me. (My late partner Anne told me "you like writing, when you're finished with it.") There were several reasons why creating this chapbook proved especially challenging to me, a legally blind poet with a disability culture sensibility. First, a word about the family depicted in the chapbook. Stan, a veterinarian, and his wife Rita, a homemaker who has diabetes, their son Josh and their visually impaired daughter Kate live in Southern New Jersey. The family in The Green Light resembles my own family. I grew up in Southern New Jersey, my Dad (now deceased) was a vet, my Mom had diabetes and I have a brother. But the characters have personalities and stories of their own. Though, like all writing, it grew out of the poet's obsessions, it is a work of fiction. This having been said, without my muse's insistence, I'd probably have shied away from creating a family resembling mine. But the issue of autobiography wasn't the biggest challenge for me in writing the chapbook. The Green Light takes place in the middle of the 20th century from 1950-1962 at a time when attitudes toward disability and people with disabilities were different from what they are now. Today, more than 20 years after passage of the Americans with Disabilities Act, we who have disabilities still encounter prejudice and barriers – from lack of physical access to employment discrimination. Ableism persists in our culture from the media to the literary life. Nearly every poet with a disability who I know has run into ableism – whether at a reading that's inaccessible (where, say, a poet using a wheelchair can't get to the mike) or a poetry writing workshop where poets with disabilities are treated with pity or condescension. Once at a workshop that I took part in, a poet said, "I don't associate poetry with blind people." But despite the ableism of the present, the impact of the disability rights movement, which began in Berkeley, California and New York City in the late 1960's and 1970's, can be seen today from the passage of civil rights laws to curb cuts to an openness with which many now speak of disability. Those of us who came of age with the disability rights movement grew up with a respect for ourselves and lack of shame about our disabilities. We no longer believed that we should be pitied or that our disabilities made us "inspirational." Influenced by the black civil rights struggle and the gay rights and women's movements, we were (or aspired to be) "out and proud" about who we are. Even people who don't have a connection to the disability rights movement, would find it hard to imagine a time when there were no curb cuts or when people with disabilities and their health conditions were mostly kept out of public view. As Michael Northen notes in the anthology Beauty Is a Verb: The New Poetry of Disability, (Cincos Puntos Press) there is still much maudlin, sentimental – "inspirational" poetry about disability. But as is evident in the anthology, vital, engaging poetry about disability is being written from poets as diverse as Jim Ferris, Kenny Fries, the late Laura Hershey, Raymond Luczak and Gretchen E. Henderson. The poets in "Beauty" have different sensibilities and styles, yet they all eschew hiding, sentimentilizing or catastrophizing people with disabilities. A number of poets are now writing openly about their own experience with disabilities and illnesses (ranging from cerebral palsy to Parkinson's disease). Take Ellen Aronofsky Cole who writes movingly and skillfully about being her experience with cancer in the chapbook Prognosis (Finishing Line Press). In the poem "The Meal" she writes: Are you eating? asks Dr. Malkovska. During the era when my chapbook is set there was little thought of disability rights, and disabilities and illnesses were shrouded in secrecy. You didn't see wheelchair ramps or kids with disabilities in schools and very rarely workers with disabilities at work. If you had a disability then, it would likely have never occurred to you to speak up - let alone file a legal complaint - if you were discriminated against. Because it's doubtful that anyone would have listened to you, you had no legal recourse, and you probably didn't realize that you'd encountered discrimination. You likely wouldn't have dreamt of telling anyone but your intimates if you had an illness, since no one brought up disability in polite conversation. Poetry grows out of the body (the mind and body being one), says poet Anne Becker. Becker is author of the chapbook The Good Body (Finishing Line Press) and conducts the workshop "Writing the Body" for people living with or caring for someone with an illness or disability. "People felt and thought differently about the body then {in the 1950s and 1960s}," adds Becker, a baby boomer who had a bone infection and seizures as a child, "you didn't talk about illnesses then. You just whispered about diseases. Sicknesses were shrouded in mystery and fear." "For a while, I thought I had bone cancer," Becker recalls, "it was scary. In the 1950s and 60s there were these community service announcements about cancer – talking about the signs of cancer. They scared the bejesus out of me." I doubt if there were any "writing the body" workshops during the time when my chapbook is set. Then, disability was seen solely as a medical problem and doctors, psychologists, rehabilitation professionals and their ilk would have been the people who spoke about disability. As someone informed by the disability rights movement, I came to loathe the maudlin, inaccurate, sentimental images and metaphors used by many able-bodied poets about people with disabilities. While not wanting to censor anyone or inhibit another poet's artistic expression, I wanted to be the one to write poems about what it's like to live with a vision impairment. Because they so often wrote maudlin poetry about us, I didn't want able-bodied poets to try to imagine what it feels like to have a disability. Many poets with disabilities wished to own their narratives – to control the telling of their stories. Back to The Green Light. I found myself writing about people with disabilities during an era when disability rights hadn't hit the radar screen and when people were much more secretive about their disabilities. I, so often wary of other (able-bodied poets) writing about people with disabilities, had to tell the story of Rita, a character I loved, but who has a disability I don't have. Who knows how poets create despite whatever issues turn up? Our poems, I sometimes think, write themselves, despite ourselves. With the help of my muse, poetry group, poetry teacher, coffee, chocolate and reading other poets from Elizabeth Bishop to Anne Finger, I wrote the chapbook. Here are a few things that I discovered during the writing process:
I still believe that these barriers are as disabling as our physical, mental and sensory disabilities and illnesses, and I don't want to be pitied. Yet while writing The Green Light I realized that too often disability rights activism has denied the emotional and physical pain that many people with disabilities experience. I came to see that good poetry that isn't maudlin or "inspirational" can be written that includes (when it's part of a character's experience) this pain and suffering in its narrative. Letting go of my poems was hard. I know that my work will never be as good as I would like. But I'm thankful for my time travel with my muse.
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