The personal is political.—feminist slogan
I was raised in a family and culture with “a strong work ethic”—an inflexible ideal. Part of this philosophy is that we should never give in to pain; we must always overcome it. I am a professor, poet, wife, mother to three dogs. I also have the pleasure of experiencing chronic pain, numbness, and loss of balance associated with peripheral neuropathy and arthritis in my hands, feet, shoulders, and elsewhere. In addition, I was diagnosed recently with manic-depression and ADD. These last two are something I rarely talk about. In fact, I’ve almost managed not to talk about them to myself.
Along with many people, until recently, I never examined my attitude towards disability, one that I received from parents and society and swallowed whole. However, in the process of investigating Disability Theory, I learned a new way of thinking about “disability,” my own body, and poetry.
Until I started writing this blog post, I never self-identified as having disabilities, never saw myself as a member of the Disabled community. All my disabilities are more or less “invisible,” and I asked myself as I started writing, Am I “impaired” (a loaded word) enough to be considered “disabled”? I queried my friend, writer Travis Laurence Naught (his book The Virgin Journals is among the resources featured at the end of this blog), and he responded: “We live in a world of myriad disabilities, and just because mine is visible does not make it any more severe than yours.“
The traditional model of disability sets up two mutually exclusive categories: “normal/able” and “diseased/disabled.” It’s binary—individuals have to fit into one of those boxes. The “medical model” sees disabled people as defective—in a way, less than fully human. The doctors’ goal is to try to “fix” or “cure” them.
Our society labels and penalizes people with any type of supposedly defective body or mind. The disabled are sometimes presumed to be unreliable, miserable, selfish, and narcissistic. They are often seen as using up more than their fair share of society’s resources. And people with mental disabilities are stigmatized and feared. No wonder I was in denial for so long.
But Disability Theory points out that the term “disabled” is, in effect, a moving target. Perfection of the human body is a myth. The boundary between able and disabled is a fiction, a social and political construct. Assuming we manage to stay alive, we will all experience disability; we can’t predict exactly when and how our individual body will change or break down, though it will. The fragility of the human mind and body is one of the essential facts of life. As Shakespeare says, “Every fair from fair some time declines / By chance or nature’s changing course untrimm’d.”
I discovered that living in Denial-Land about disability was dangerous for me as a writer. It meant that I was hiding from myself. For example, I saw that I’d written almost all of my poems using an implied speaker who apparently had a perfect body—or didn’t really have a body at all—yet the reality is that everyone has a body, but no one has a perfect body. I was keeping my imperfect body walled off from my poetry in order to provide the kind of fake speaker I thought readers wanted. A disconnect or vacuum from our authentic self is created when we wall off our real bodies from our writing, I believe. The fact that each of us lives with our own unique body is an elemental feature of our existence.
As I found out more about Disability Theory, I started to sense myself as an embodied creature more so than I did in the past. As my worldview changed, I felt more grounded, more connected to my true self. This is reflected in my poetry, which doesn’t necessarily focus on my body per se. But there is now more depth to the speaker. The speaker is “marinated” with a realistic, imperfect human body that “soaks into” the poems at times by a process of nuance and implied reference.
Also, in the relatively short time that I have been aware of it, my writing process is different now. I still have a “work ethic,” but I’ve changed the rules. I refuse to consider myself a slacker when I’m flexible about my writing. And I have to remind myself constantly that time lost to illness doesn’t equal failure. Recently, I have forced myself to let go of work sometimes. Surprise, surprise, the sky has not fallen in.
The Japanese have an aesthetic of beauty through imperfection. The term wabi-sabi, as explained by Leonard Koren in his influential book Wabi-Sabi for Artists, Designers, Poets & Philosophers, refers to the act of embracing the flawed—the weathered, rusted, or worn down. Kintsugi or kintsukuroi (“golden mend”) is the Japanese art of repairing broken pottery with lacquer dusted or mixed with powdered gold, silver, or platinum. Cracks and repairs are highlighted, not hidden. What would happen if we applied this aesthetic to our human bodies? Our lives? Our poetry? What would happen if we wrote about real people with real bodies? If we celebrated the flaws that make each of our bodies unique? Let that thought bounce around in your head for a minute. What would happen? Just what would really happen?
Resources and Bibliography
My exploration of Disability is still a work in progress. I’m not pretending to be a Disability Theory or Disability Studies expert, but here are some resources that have helped me and that others might want to delve into. And if you think nothing about Disability Theory applies to your life, please, do some reading anyway and then see how you feel.
Leslie Jamison. “Grand Unified Theory of Female Pain.” VQR, April 2014. https://www.vqronline.org/essays-articles/2014/04/grand-unified-theory-female-pain
Anna Leahy. “Alive and Writing: What Recent Memoirs Reveal About Illness and the State of Health Care.” https://entropymag.org/?s=Leahy
Tovah Leibowitz. ‘’Crip Lit : Towards An Intersectional Crip Syllabus.’’ Autostraddle, May 23, 2016. https://www.autostraddle.com/crip-lit-an-intersectional-queer-crip-syllabus-333400/
Linda Napikoski. “The Personal Is Political: Where Did This Slogan of the Women’s Movement Come From? What Does It Mean?” ThoughtCo, December 31, 2017. https://www.thoughtco.com/the-personal-is-political-slogan-origin-3528952
Ana Prundaru. 10 Literary Magazines Curated by and for People with Disabilities.” January 17, 2018. https://www.aerogrammestudio.com/2018/01/17/literary-magazines-curated-by-and-for-people-with-disabilities/
Rebecca Stroud. “List of Ableist Language and Alternatives,” 2017. https://li.st/RStrout/list-of-ableist-language-and-alternatives-2QawoEjJokDWESGkqU20Na
“What Does It Mean to Be a Disabled Writer?” Electric Literature, May 7, 2018. https://electricliterature.com/what-does-it-mean-to-be-a-disabled-writer-5ff1dd190955
Jennifer Bartlett, Sheila Black, and Michael Northen, Editors. Beauty is a Verb: The New Poetry of Disability. Cinco Puntos Press, 2011 [an anthology of essays and poetry on a wide range of topics either related to disability or by poets with disabilities], ISBN-13: 978-1-935955-05-4.
Amy Berkowitz. Tender Points. Creative Commons BY-SA, 2015 [the complex effects on the body of rape trauma, explored with candor and sensitivity], ISBN: 978-1-937421-15-1.
Sonya Huber. Pain Woman Takes Your Keys and Other Essays from a Nervous System. University of Nebraska Press, 2017 [poetry and personal essays on how chronic pain affects the speaker as a writer, mother, and teacher—a classic that made me cry and laugh], ISBN: 978-0-8032-9991-7.
Alison Kafer. Feminist Queer Crip. Indiana University Press, 2013 [good resource for how Disability Theory intersects with theories such as feminism], ISBN: 978-0-253-00934-0.
Travis Laurence Naught. The Virgin Journals. ASD Publishing, 2012 [an upbeat, irreverent personal narrative by and about a man in his twenties with disabilities and celibate], ISBN: 978-0-9836049-7-6.
Tobin Siebers. Disability Theory. University of Michigan Press, 2011 [an excellent explanation/exploration of Disability Theory basics], ISBN:-13: 978-0-472-05039-0.
Do you have something say about poetry? An essay on being a poet, tips for poets, or poetry you love? TrishHopkinson.com is now accepting pitches for guest blog posts.
Eileen Murphy is professor of literature/English at Polk State College in Lakeland, Florida, and a Pushcart Prize-nominated poet with recent poems and/or reviews in Cultural Weekly, The American Journal of Poetry, Tinderbox Journal, Rogue Agent, Thirteen Myna Birds, Thank You for Swallowing, Rain Taxi, Glass, Arsenic Lobster, and a number of other literary magazines. Her email is firstname.lastname@example.org.